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February 10, 2006

Here We Go Again….
Posted by Jim Macdonald at 06:10 AM * 137 comments

As you know, thanks to the FDA banning pemoline, Miss Teresa now has only three drugs to combat narcolepsy, the most effective one no longer being available.

One of her others is Ritalin. Now the FDA’s drug risk committee had a meeting and:

The advisory committee voted unanimously to recommend patient guides, and it voted 8-to-7 to suggest that stimulant labels carry the most serious of the Food and Drug Administration’s drug-risk warnings something called a “black box.”

Y’see, they found that some people who take Ritalin have heart problems. Gee, ya think? That’s something that stimulants do. You want to see some ectopic beats? Hook me up to an EKG after I’ve had my morning coffee. But these nice fellows don’t want anyone to have an increased risk of heart problems. Hot news flash for the FDA: Over time the death rate from “living” is 100%! The big question is quality of life while you’re still alive.

“I want to cause people’s hands to tremble a little bit before they write that prescriptions,” Dr. Nissen said.

Hot news flash for Dr. Nissen: Neurologists’ hands already tremble, because the DEA likes to drop in on them and screw with them just for fun. (Chasing neurologists is lots easier and lots safer than chasing the guys from Cartagena. Neurologists are listed in the white pages and don’t carry machine guns.)

Marketplace from American Public Media had a big propaganda scare story on Ritalin yesterday.

We’re looking now at what pemoline faced in 1996. So, in 2016 will we see friggin’ Public friggin’ Citizen petitioning the FDA to ban Ritalin, and the FDA rolling over for it? Sure, I can see that.

If you need Ritalin to maintain your quality of life, the time to fight this nonsense is now, not when you show up at the pharmacy one morning with your scrip in your hand, only to discover that there’s no more to be had.

Comments on Here We Go Again....:
#1 ::: Patrick Nielsen Hayden ::: (view all by) ::: February 10, 2006, 07:04 AM:

Ritalin has, of course, long been in the sights of a lot of creepy people and organizations.

In a saner world I'd be willing to grant that it's perfectly okay for the FDA to mandate non-coercive "black-box warnings". But in this world it's hard not to suspect this sort of thing is part of a process meant to lead to further restriction and prohibition.

#2 ::: James D. Macdonald ::: (view all by) ::: February 10, 2006, 07:23 AM:

Y'know, given their new-found concern for cardiac risks in adults who take Ritalin: maybe they should have flippin' thought of that before they took pemoline off the market.

Ya think?

#3 ::: Lisa Hertel ::: (view all by) ::: February 10, 2006, 08:53 AM:

Ritalin, as an amphetamine, already is about as restricted as you can get. There is one hope on the horizon, however. As the use of ADHD drugs increases, more drugs in this class will become available. (Note that ADHD drugs are often used for narcolepsy.) The latest is Strattera, which isn't even a controlled substance.

So long as you stick with one pharmacy, and they have your diagnosis, they can probably make an effort to keep you supplied with what you need, as long as it is available. This is one of those areas where it's worthwhile to cultivate a patient/pharmacist relationship--especially now, when she is forced to switch physicians.

#4 ::: JC ::: (view all by) ::: February 10, 2006, 08:54 AM:

Based on what I heard on NPR last night, I think they have their sights on Adderall also. (Apparently, Canada has already banned the long acting form?)

What I find kind of odd is that the FDA is behaving like my sister and I did when my mom was fighting Non-Hodgkin's Lymphoma. For a while, we kept looking for the perfect drug to use for chemotherapy . i.e., no side effects, 100% effective, to the exclusion of everything else. Needless to say, it didn't exist. This is behavior I expect from two people who know next to nothing about medicine, not the FDA.

At the end of the day, I'm not so libertarian to say that people should be able to make their own decisions without any government intervention. If nothing else, there should be government regulation to insure that we (and especially our doctors) know as much about the efficacy and side effects of the drugs we consider as possible. But if we ban every drug with a potentially dangerous side effect, there will no drugs left with which to treat disorders. The right drug strikes me as being a very individual decision and a complete ban strikes me as being not useful unless it's a strike with truly no redeeming qualities.

BTW, I realize that this is the wrong thread, but chances are good that I will be at Boskone. As a frequent lurker and infrequent poster, I look forward to meeting you all.

#5 ::: Mez ::: (view all by) ::: February 10, 2006, 09:01 AM:

Bloody hell! *facepalms* Honestly, it does feel like you need to keep running as fast as you can just to stay in the same place.

The best lack all conviction, while the worst
Are full of passionate intensity"
Some of my thoughts are with all those working on The Pemoline Crisis, but they're spread around those also working on all the other crises too. Good luck to all of you.

#6 ::: Eve ::: (view all by) ::: February 10, 2006, 09:13 AM:

Ritalin has, of course, long been in the sights of a lot of creepy people and organizations.

Of course, same old story. Better that a thousand people suffer debilitating symptoms than that one teenager gets high.

#7 ::: jane ::: (view all by) ::: February 10, 2006, 09:14 AM:

Aw, jeeze--here's my darling husband battling fourth-stage cancer and the only thing that breaks through the fog of the pain meds and keeps him alert and capable during the day is--yep! Ritalin.

You know, a sudden heart attack is not something we are worrying about. There are days when he'd actually look forward to it. Luckily hospice is on the job. They, at least, will keep the spice moving. Er, Ritalin.

Jane

#8 ::: Jules ::: (view all by) ::: February 10, 2006, 09:23 AM:

Ritalin's an easy target. It's a stimulant, very easy and desirable for people to abuse. It's predominantly prescribed for ADHD, a condition which a lot of people believe doesn't really exist ("it's just an excuse for badly behaved children" is something I've heard several times), and which has in the past been used as a get-out diagnosis when doctors want to get badly behaved children out of their surgery. It is a dangerous drug that may be dependency forming and has rather negative side effects. Many people, having only seen borderline cases and misdiagnosed cases, believe ADHD is best treated by therapy alone. Banning Ritalin would be a popular move.

#9 ::: Sisuile ::: (view all by) ::: February 10, 2006, 09:42 AM:

Well, schise. The idiocy can stop any time now.

Yeah, you can get Ritalin black on campus. The people you hear about using it most are the ChemEs and the med students. It's evidentally a 'major' problem in residencies at the hospital...where the people can prescribe it to themselves.

It is also one of the very few drugs to control Daddy's ADD. This is going to be a not-fun call here shortly.

#10 ::: Tim Kyger ::: (view all by) ::: February 10, 2006, 09:45 AM:

Damn.

I have three kids, all with ADHD, and all taking Ritalin (in various dosages). It, or some other ADHD drugs, are vital to their being able to be successful at all in school, much less in life.

Fucking nanny state culture.

And while I'm at it, let's not forget Tom Cruise and his ilk shooting at this stuff. Dare I say it? Scientoligists. Or however those nutbars spell it.

#11 ::: mayakda ::: (view all by) ::: February 10, 2006, 10:28 AM:

You know what's odd-- I watched House (first time) the other day on tv. (Because I was too stressed to sleep). The episode was about a supermom who gets into a car accident because of arm twitching. They find out she's popping her kid's Ritalin. (Among other things).
Then yesterday I read about the FDA Ritalin labelling thing.
Seems like an odd coincidence.

#12 ::: Tim Kyger ::: (view all by) ::: February 10, 2006, 10:49 AM:

One (possible)Good Thing:

This drug is a money maker; pharm sells a lot. Big Pharm will want to keep making it.

Politics and bedfellows...

#13 ::: Larry Brennan ::: (view all by) ::: February 10, 2006, 10:57 AM:

Step 1 - Get released from liability
Step 2 - Get black-box warnings on drugs before they go off patent
Step 3 - Launch new drug targeting same market
Step 4 - Launch direct-to-consumer TV campaign to create demand for your diagnosis of choice
Step 5 - Get old drug banned just after it goes off patent
Step 6 - Watch generic manufacturers fail after spending big to make drugs that get immediately banned

Step 0 - Continuously plant stories in the media and lobby (bribe) Congress to do things your way.

Sounds like a pharma business plan to me.

Is Ritalin available in generic? If so, for how long? If not, when does it go off patent?

#14 ::: Larry Brennan ::: (view all by) ::: February 10, 2006, 10:58 AM:

I should add that at least they're having a hard time with step 1. But they seem to be willing to bear the litigation costs as a cost of doing business.

#15 ::: Chuck Divine ::: (view all by) ::: February 10, 2006, 11:00 AM:

I saw the report in the Washington Post this morning. See Warning Urged for ADHD Drugs if you're interested.

I can understand -- and share to some extent -- your anger. It really is long past time to end the damned drug war, not to mention all the other assaults on human liberty that we're seeing anymore.

There is, though, one very interesting comment in the Post article. From the article:

"On the surface, it is hard to believe," said Curt Furberg, professor of public health sciences at North Carolina's Wake Forest University Medical School, who voted for the black-box warning. "What is also interesting is this condition is not really recognized in other countries -- you wonder what we are treating. I am sure there are patients who need these drugs, but it is not 10 percent of all 10-year-old boys."

An article in the APA's Monitor on Psychology from October 2001, "Sleep deprivation may be undermining teen health" gives me pause. Yes, our oh so wonderful educational system could be a significant factor driving ADHD.

So, while I don't support the screwballs who want to stop people from using Ritalin and instead try talk therapy, I'm not exactly fond of the people who want to prescribe Ritalin rather than reform the schools.

#16 ::: Tim Kyger ::: (view all by) ::: February 10, 2006, 11:27 AM:

On the issue of whether or not ADHD exists:

From the very moment Emma was born we Kathy and I knew, somehow, that something was, well, not wrong, but somehow different.

Upon the diagnosis of ADHD in 1st Grade, she did a turnaround in behaviour once we had our Ritalin scrip. It's like light and dark; it's an obvious difference.

It made the difference in her being able to attend school at all (she'd have been too disruptive otherwise).

Are Kathy and I just "parents who won't discipline their kids?" No. We had already raised a daughter who at the time Emma started 1st Grade was 19, and she has turned out just fine. The idiots who deny the existence of ADHD I welcome to come to my house and take care of Michael, Emma, and Kolby for a week. They'll leave believers.

I don't think Pharma is the boogy-man here. I think the real power movers behind this are (a) all the various conservative types who think that it's Evial to be dosing our kids with Drugs!(how *dare* we actually take care of them ourselves, when we're the folks closest to the problem, as well as, um, being the fucking parents?!), and (b) the "Church" Of Scientiology.

#17 ::: P J Evans ::: (view all by) ::: February 10, 2006, 11:39 AM:

Tim: I don't doubt the existence of ADHD; I do question whether it's as prevalent as some of the diagnosing officials seem to think. I suspect that if Ritalin doesn't slow them down, the diagnosis should be questioned.

#18 ::: Teresa Nielsen Hayden ::: (view all by) ::: February 10, 2006, 11:51 AM:

Jane, David's one of my favorite people in the whole world. I'm sorrier than the language can bear to hear that he's doing so badly. Tell him I send my love.

#19 ::: Dave Bell ::: (view all by) ::: February 10, 2006, 12:07 PM:

I certainly remember a time when Ritalin seemed to be the universal cure for problem children.

Some people fuss about food colouring and artificial sweeteners.

All three seem to have a genuine effect on _some_ children. All three have suffered from a bandwagon effect.

I can see the point of wanting Doctors to be worried enough to wonder whether they've found the right treatment. But how do we force this FDA committee to wonder if they're jumping on a bandwagon?

#20 ::: Chuck Divine ::: (view all by) ::: February 10, 2006, 12:19 PM:

Tim,

Yes, there is such a thing as ADHD. From what you describe, I can believe your children do have it. The issue I and others (including some parents who have children diagnosed as ADHD or ADD) are raising is the extent of the problem. Some schools are, in effect, getting away with systematic child abuse. There have been schools that have adjusted their practices to reflect real research. The fact that behavioral problems have decreased in such schools tends to support the hypothesis that ADHD is overdiagnosed and is driven in part by the schools.

Yes, antidrug conservatives give me a pain, too. So do the Scientologists. I can say the same thing about educators who blame everyone else for their own screwups.

#21 ::: Adam Teter (aka, PinkDreamPoppies) ::: (view all by) ::: February 10, 2006, 12:58 PM:

One of the problems with ADD is that it's very difficult to diagnose definitively. The way the disease works is that when a person who has ADD attempts to concentrate a part of his brain stops functioning and prevents him from holding focus on anything for very long. (There is a paradox here: the harder he attempts to concentrate on something, the less he'll be able to succeed.) This is why Ritalin, a stimulant, will help patients who suffer from ADHD: the stimulant keeps that part of the brain "awake" and so patients are able to hold focus and thus not be hyperactive.

Unfortunately, the only way to see this cessation of activity is with expensive and relatively risky brain imaging techniques. It's much easier and cost-effective in many cases to prescribe an ADD medication to a person to see if it has an effect on her; if she improves, she likely has ADD.

From the reading I've done, approximately 1 in 25 people has some form of ADD. This number is consistent across cultures and geographic regions. This statistic is slightly misleading, though, because it is for ADD as a whole and not just ADHD. In some people, ADD manifests itself as an inability to concentrate that results in a person decreasing their activity level. Unable to concentrate on anything they end up doing nothing. (These people usually end up being tagged as lazy instead of poorly behaved.)

Anecdotally, the number of children in the school where I work who are on some sort of ADD or ADHD medication is closer to 1 in 25 than the 1 in 10 mentioned upthread. I'm not sure what percentage of kids are prescribed Ritalin, but I suspect that it's much lower than the popular concept of every other kid being hopped up on something.

#22 ::: Adam Teter (aka, PinkDreamPoppies) ::: (view all by) ::: February 10, 2006, 01:00 PM:

Some schools are, in effect, getting away with systematic child abuse.

Chuck, I'm curious as to what you mean by this. What are some schools doing that you would call systematic child abuse?

#23 ::: Kat Meltzer ::: (view all by) ::: February 10, 2006, 01:06 PM:

Hey y'all, from this longtime lurker and secret admirer of Teresa, Patrick, and Jim.

You can see which drugs Public Citizen wants to save us from at:

http://www.adrugrecall.com/html/recalled.html

Thank goodness for Public Citizen, because I am incapable of weighing risks and benefits, and making such hard big-girl decisions. I will be much happier as a zit-faced suicidal bag of snot with high cholesterol and toe fungus.

#24 ::: Sean Bosker ::: (view all by) ::: February 10, 2006, 01:17 PM:

I find it deplorable that a medicine is being withdrawn from people who need it and that the same forces seem to be at work to make another medicine less available.

Adam, I think that the controversy is that some children require more individual attention than others in school. I'm not talking about the children with ADD, but just high maintenance kids who need a lot of guidance. These children can be kept in their seats if they are put on medication, which is cheaper than staffing the schools, but not always the best solution for the children.

I don't think the solution to this is to ban Ritalin, that won't fix a thing.

#25 ::: Chuck Divine ::: (view all by) ::: February 10, 2006, 01:17 PM:

Adam,

I'll refer you back to my first posting in this thread. There's a link to an article on the APA's web site.

Very briefly: When I and my parents went to high school, the day started at 8:30 AM or 9:00 AM. We lived so close to school that long bus rides (if we got a bus ride at all) didn't happen. Result? We were waking up naturally around 7 AM. Today we haul teenagers out of bed as early as 5:00 AM (some parents yank their kids up at 4:00 AM for the benefit of special programs). Schools start between 7:00 and 8:00 AM -- usually closer to 7:00. This kind of schedule has been causing problems for years. Students sleep through many classes. That didn't happen way back when. How bad is it today? One local high school actually put up on their outside sign "Sleep is for slackers." I think the adminstrators of that school should be fired.

That's just one example of what schools are getting away with. The sleep issue has been better documented than most. There are more. Some present day educational reformers are trying to reverse the reforms of thirty and forty years ago because they turned out so badly.

#26 ::: Larry Brennan ::: (view all by) ::: February 10, 2006, 01:37 PM:

Chuck - My most recent experience with public school schedules was around 1990 when I had to take my nephew to elemenatry school. His school day started at 8:15, and the school was only a 10 minute stroll away, so wake-up time for him was about 6:45.

Crazy me, I went to high school in The Bronx but lived in Brooklyn so I was out the door every morning at 6:15 to make a 7:45 first period (this was in 1981). I napped on the train alot. (I also should have gone to Stuyvesant instead of Science, but that's a different story.)

We also had activities before 1st period, but I never particpated in them, instead choosing the occasional afternoon activity.

Still, nobody in the administration would ever have posted a sign castigating students for sleeping.

Back on topic, as for the drug thing - the whole reason that we have prescription drugs is so that doctors can control who gets the stuff that might be dangerous. Why is that so hard for so many people to understand?

Less life impacting, but when they pulled PPA (a cold medicine) from the market because it was related to heart attacks in some women, I asked my doctor about it and stocked up because it was the only thing that worked and didn't make me feel funky. Couldn't they just have put the stuff behind a prescription wall?

#27 ::: Chuck Divine ::: (view all by) ::: February 10, 2006, 01:41 PM:

Adam,

One other point. Some schools actually do have a fairly high percentage of boys on Ritalin. There's also the tendency of authoritarian institutions to blame either the less powerful or outsiders for their problems. I don't know anything about your school or even what you do there. The APA article should raise some concerns. The APA might not be perfect, but the article is based upon real research, not the prejudices of one group or another.

#28 ::: Teresa Nielsen Hayden ::: (view all by) ::: February 10, 2006, 01:56 PM:

Onward to ranting about drugs.

JC: They're going after Adderall too? [String of expletives.] And they're going after the long-acting i.e. time-release i.e. less physically stressful version? [Longer string of adjectives.]

What the f*ck are these idiots trying to do?

They're using the same logic they used when they took Phenylpropanolamine off the market a few years ago:

Phenylpropanolamine has been used for many years and a very small number of people taking the drug have had strokes. The Yale study helped show that the number of people having strokes when taking phenylpropanolamine was greater than the number of people having strokes who were not taking phenylpropanolamine. Although the risk of hemorrhagic stroke is very low, FDA has significant concerns because of the seriousness of a stroke and the inability to predict who is at risk. Because of continued reports to the FDA of hemorrhagic stroke associated with phenylpropanolamine and the results of the Yale study, we now feel that the risks of using phenylpropanolamine outweigh the benefits and recommend that consumers no longer use products containing phenylpropanolamine.
It's a stimulant. You may have known the stuff as DexaTrim. It was primarily sold as an appetite suppressant, though I sometimes used it to patch through periods when for one reason or another I didn't have adequate prescription medications.

(You know, I'm actually finding it difficult to type these remarks without including socially unacceptable intensifiers in almost every clause.)

Here's the heart of it:

None of this is news.

So Phenylpropanolamine, Ritalin, and Adderall slightly increase your chances of a cardiac incident or stroke? Well, NO F*CK*NG KIDDING!

THEY'RE STIMULANTS!

STIMULANTS DO THAT!

IT'S CHARACTERISTIC OF THE WHOLE FLIPPIN' CLASS OF DRUGS!

Newsflash: Heavy-duty painkillers build tolerance and are frequently addictive!

Antidepressants are tricky to prescribe!

Immunosuppressants make you susceptible to common infections!

The only people who have problems with insulin shock, a potentially life-threatening condition, are insulin users!

And so forth. By this logic, all stimulants should be taken off the market. In a sane universe, if someone's at risk for strokes or cardiac problems, you DON'T GIVE THEM STIMULANTS!

Criminently Christmas! I get given plenty of other drugs that cause problems. I once spent the better part of a week half out of my mind with anxiety-related delusions because I'm in the tiny fraction of the population that's driven into wild anxiety, shaky hands, tachycardia, the works, by Biaxin, a popular antibiotic that's often prescribed for respiratory infections. If I hadn't had a lot of experience coping with neurochemical weirdness, very bad things could have happened.

Why stimulants?

What the f*ck are these idiots trying to do?

#29 ::: P J Evans ::: (view all by) ::: February 10, 2006, 02:05 PM:

How about, they've bought into the 'Partnership for a Drug-free America' idea, without stopping to think that drugs are not necessarily bad? These are the same people who don't want to prescribe morphine as pain-relief for terminal patients, because it's addictive (hey guys, what part of 'terminal' do you not understand?).

Talk about science-illiteracy! Can we get a required set of science classes for business and politics? One that will teach them probability and statistics, as well as inference and deduction? Or is this to likely to give them headaches from the unaccustomed exercise?

#30 ::: Stefanie Murray ::: (view all by) ::: February 10, 2006, 02:18 PM:

Chuck,

I know that several years ago the Minneapolis school district tried to change high school scheduling to reflect the research you mention, and they were prevented-- by parents, who needed their high school kids to be getting off school early enough to pick up and watch their younger siblings. And also by students who wanted that time after school for sports and other activities, or who worked and needed the afternoon hours.

I certainly don't want to characterize your experience, but mine has been that public schools are caught between a whole web of imperatives and directions (and unfunded mandates, but we won't go there), and the school system serves and reflects a wide variety of needs, and objectionable practice is more often a result of trying to make a Swiss Army knife out of a toothpick than any malice on the part of educators.

#31 ::: James D. Macdonald ::: (view all by) ::: February 10, 2006, 02:22 PM:

Get out, get active in your community, write to politicians, write to newspapers, write to bureaucrats. Educate yourself and others.

Silence isn't an option.

#32 ::: Christopher Davis ::: (view all by) ::: February 10, 2006, 02:47 PM:

Can't we get them all worked up about prescription dihydrogen monoxide or something? Sigh....

#33 ::: Teresa Nielsen Hayden ::: (view all by) ::: February 10, 2006, 02:49 PM:

If people are misdiagnosing ADHD and misprescribing Ritalin, then what we need to work on is the way they deal with students, and their use and understanding of Ritalin. Blaming the drug is just a way to avoid addressing the real institutional problems.

I know quite a few people whose lives were made hugely more difficult by ADHD, and immeasurably improved when they were given medication for it. Ask Jim Frenkel. Ask anyone who works with Jim Frenkel. While you're at it, ask Chris Hatton and Jon Singer.

Growing up with ADHD isn't easy. As I say, I know people who did it. What I wonder is how many people I don't know because their childhood ADHD was bad enough that they went down in the scrum -- were labeled unteachable, treated like they were worthless, and got angry and frustrated and never got over it.

It's not good that kids who need attention are getting Ritalin instead. But you know what? If you don't have a condition that responds to it, Ritalin's pretty mild stuff. Sure, there are some people out at the end of the bell curve who'll be perceptibly overstimulated by it. Good news: it's easy to spot them. For the rest, it's not going to do a lot of harm.

I used to know a woman -- kind of weird and naturally jittery, but essentially sane -- who was put on Thorazine throughout her childhood. I know a man who grew up thinking it was normal for his parents to dope him and his sister with Seconal on the family's driving vacations, so that the the kids would sit quietly and stare out the windows all day. Back in the 60s, I knew an entire family of kids whose parents would casually hand out a Miltown to a child who was inconveniently upset.

Neglect is by far the commonest form of child abuse. Getting rid of Ritalin won't do a thing to fix that. In the meantime, there are people who really truly do need Ritalin. There's no virtue in depriving them of essential medications so that we can pretend we're addressing a problem we aren't.

#34 ::: Chuck Divine ::: (view all by) ::: February 10, 2006, 03:01 PM:

Stephanie,

The Minneapolis (and Edina, I believe) school systems are cited as places where the schedules were changed to positive effect. I don't know what the current situation is. Yes, there has been resistance on the part of some people. Sleep in Fairfax is an activist site with a good bit of current information.

My high school experiences are over 40 years ago. That's why I escaped the current nonsense.

I don't attribute the actions of educators to malice. My point is that we've seen a variety of actions undertaken without regard to reality -- and when reality bites back, denial sets in. Some of these actions have been promoted by educators. Consider, for example, James Bryant Conant, Harvard President from 1933 to 1953.

#35 ::: Teresa Nielsen Hayden ::: (view all by) ::: February 10, 2006, 03:02 PM:

And another thing:

If you take Ritalin, Adderal, Cylert, etc. off the market, what a lot of people will switch to is bathtub amphetamines. Those are much, much nastier if you've got cardiac problems.

Would I be among them? Since I'm speaking for public consumption, I'll of course say no. After all, they're illegal. But given a choice between being an unemployable, morbidly obese, fuzzy-headed, and profoundly depressed unmedicated narcoleptic, and being on nasty illegal drugs that let you have a life, however unsatisfactory, I'll bet a lot of narcoleptics would instantly choose to self-medicate.

#36 ::: Sean Bosker ::: (view all by) ::: February 10, 2006, 03:03 PM:

I hope I didn't come across as being in any way in favor of depriving anyone of needed medication. I was just trying to explain what some of the anti-Ritalin folks are on about, not defending the move to ban stimulents.

I think this anti-stimulent hysteria is somehow tied into the crystal meth thing. I read somewhere, maybe here, that the crystal meth epidemic is being vastly overblown and sensationalized. It's like a new Red Scare, only the reds are tweakers and now anyone who took a diet pill is being tarred and feathered.

#37 ::: Chuck Divine ::: (view all by) ::: February 10, 2006, 03:06 PM:

Teresa,

I think we are in almost complete agreement. Ritalin, et al., should be available for people who really need it. People -- even young people -- should also be allowed to live their lives in reasonable ways. That could solve -- or at least ameliorate -- quite a few current problems.

#38 ::: Larry Brennan ::: (view all by) ::: February 10, 2006, 03:54 PM:

Teresa - I hadn't really thought of PPA's stimulant effects as having therapeutic use, but rather as more of a side effect, and one that for me was substantially less then for pseudephedrine, which I can't take at all. Me and my current head cold really would like some PPA right now.

Of course, pseudephedrine is already behind the counter in WA, part of the War on Drugs™. It'll probably be banned soon, too.

#39 ::: alex ::: (view all by) ::: February 10, 2006, 03:58 PM:

Don't worry--Ritalin won't be banned until the patent expires and there are generic comptetitors. And I'm sure Ciba-Geigy will have a much superior product waiting to take its place. If it doesn't work so well for your problem, that's scarcely their fault.

Right?

I'm getting tired of living in CorpoAmerica.

#40 ::: fidelio ::: (view all by) ::: February 10, 2006, 04:01 PM:

Based on a lot of what I see in public policy these days, there's a great deal of blindered (as in a horse's blinders) wishful thinking going on. If we cut down on the number of legal, prescribable stimulant drugs available, then these drugs will not be abused. If we cut down on the number of powerful painkillers available by prescription, these drugs will not be abused. Needless to say, in both cases, people will find substitutes. However, the wishful thinkers can't see that far ahead. It's sort of like letting levee maintenace lapse because we haven't really needed to depend on them in a while, or not making serious detailed plans for the occupation of a country we've invaded because they'll great us with flowers and...
There's a whole school of thought at work we might as well call the Jiminy Cricket School of Public Policy (which has subgroups in military affairs, climate issues, and plenty of other areas of public concern). Their theme song is "When you wish upon a star".

I've worked handling Social Security and SSI disability claims for over 20 years. Many of these claims have involved substance abuse of one kind or another. An amazingly large number of people with this problem seem to have started out self-medicating, whether for pain, stress, anxiety, depression, or the need to get up and get more done than flesh and blood could manage alone. I don't question the notion that substance abuse is a bad thing, and harmful to the individual, their family, and society in general. However, before you can do somthing about the problem, you have to deal with "Why does it happen?" and in all too many cases the substance abuse followed a problem that wasn't being dealt with satisfactorily--and all too often it's a medical condition that is either not being treated, or is not being adequately treated.

However, this is an area where all to often those who set policy, in addition to the Jiminy Cricket planning (cut off supplies of pseudephedrine for meth cookers = increase in imports of Mexican-made meth) suffer from a worldview that says "If you did this it is because you are weak and evil" not "You had a problem and this appeared to be the best solution available to you". Oddly enough, this "defective human" reasoning doesn't seem to apply if you're wealthy enough and well-connected enough--after all, Betty Ford is a heroine of the recovery business, and Rush Limbaugh is an unfortunate victim of chronic pain and bad judgment--no doubt we could add other names to that list with minimal effort and research. However, until we kill off the Jiminy Cricket School of Planning as well as working harder to erase some of the more unfortunate results of Calvinist thinking from the national consciousness, improvement is unlikely. Oh, and let's see about making it easier for people to grasp that they may have mental problems and improve their chances for finding effective treatment. And reform the health-care situation in this country in general.

No, I wouldn't like a pony as well. I wouldn't turn up my nose at a self-cleaning house, though, and self-shelving books.

Also, let's not forget that Ritalin and Cylert/pemoline are older drugs that aren't making the manufacturers and patent-holders as much money as shiny new drugs will. The inconvenience to the users of these drugs is no more relevant than the Iraqis' desire to have safe streets, clean water, and reliable electricity and a governemnt free of foreign interference.

On the subject of ADHD diagnosis--many children with problems ranging from depression, anxiety, and abuse through some physical conditions (and reactions to asthma medications) can exhibit symptoms that can look like ADHD to non-specialists--which category includes family practitioners and teachers. One reason for the popular assumption that every child who acts outs and seems inattentive is hyperactive is that this isn't well-understood. Also, ADHD is fairly easy to treat, and everyone likes dealing with a simple problem rather than a difficult one, which it comes to children with problems. ADHD is also a fairly respectable condition--nice, middle-class parents can have children with ADHD, so it lacks the stigma that might be associated with raising the issue that a child might have behavior problems because of abuse or "problems at home", which could mean anything from "the parents have both been laid off and everyone in is depressed and worried" to "this child is upset and has abandonment issues because his parents are divorcing" to "this family unit is in total and complete collapse on all fronts".

#41 ::: P J Evans ::: (view all by) ::: February 10, 2006, 04:05 PM:

Pseudephedrine is still available in CA, but it's behind the counter. All you have to do is take the card to the pharmacist, and they'll hand it to you. But it's easier to tell how much is going out legally. Whether it does anything useful about the cookers is another story (and whether there are many in urban areas is a third story).

#42 ::: Lila ::: (view all by) ::: February 10, 2006, 04:27 PM:

I have a child with inattentive-type ADD who initially found school to be a horrible struggle. Ritalin turned out to be a terrible med for her. So did Adderall (both sent her into uncontrolled, violent rages). Eventually we took her off all meds, homeschooled for a year, then enrolled her in a new school where she was put in honors classes--duh, it's a lot easier to pay attention to INTERESTING WORK than to a never-ending supply of worksheets. Since then she has coped well.

I do believe ADD/ADHD exist, though I'm not sure either "deficit" or "disorder" is an appropriate label across the board. In my daughter it manifests more as a different brain organization; more akin to being left-handed (which also used to be seen as a disorder).

Anyway, without nattering on all day: these drugs were unequivocally BAD for my daughter. That doesn't mean they're bad for everyone; I have a family member with narcolepsy for whom Ritalin has been a godsend.

It seems to me that the appropriate precautions are:

1. Find out what the side effects are, and make sure both prescribing physicians and the public are aware of them.

2. Make reasonable efforts to prevent off-book abuse of the drugs that lend themselves to such (down here in the South at least, Ritalin is often stolen from schools and sold on the street).

3. Stop trying to cure everything with a damn pill, stop pretending everyone is the same, and stop acting like anyone who can't sit still in a hard chair 9 hours a day while doing boring work and being taunted by his/her peers is going to be a dismal failure in real life. It's NOT TRUE.

#43 ::: Harriet ::: (view all by) ::: February 10, 2006, 04:39 PM:

Er, generic Ritalin (properly, generic Methylphenidate) has already been available for quite some time -- I remember when I was active on the Compuserve ADD Forum, back in 1995, it was common to see posts about how the generic didn't work for some folks as well as the name brand, etc. etc.

Indeed, when I just now googled the terms "ritalin patent" I spotted an item that had "Ritalin has been off-patent since 1964" right up in the first two sample lines on display. So whatever is driving the current agitation to black-box our ADHD stimulant meds, it's not patent expiry. (Not on Ritalin, anyhoo)

#44 ::: Emily Cartier ::: (view all by) ::: February 10, 2006, 05:02 PM:

Don't worry--Ritalin won't be banned until the patent expires and there are generic comptetitors. And I'm sure Ciba-Geigy will have a much superior product waiting to take its place. If it doesn't work so well for your problem, that's scarcely their fault.

Right?

I'm getting tired of living in CorpoAmerica.

Ritalin is an old drug. IIRC the patent expired before I was born (and I'm 28). Dexedrine (also with a long since expired patent) is the longer acting form of Ritalin. I'm not sure how Adderall relates to them, but it is longer acting than Dexedrine. According to Wikipedia, Ritalin is methylphenidate and was patented in 1954 (huh, I was right about just how damn old the stuff is). Dexedrine is dextroamphetamine, and was available generically when I was in HS. Adderall is a cocktail of amphetamine aspartate, amphetamine sulfate, dextroamphetamine saccharate, and dextroamphetamine sulfate. Adderall is the only one that might still be under patent. All of them appear to be Schedule II controlled substances. There is no stricter form of control by the FDA... A Schedule I controlled substance is an illegal drug.

For me, they were a very bad choice of drugs to control ADD. Thing is they do work, and work very well for other people. Me losing 20lbs I couldn't afford to lose meant I kicked up a fuss until the doctor let me go off it, since there weren't alternatives that would be safe for me at the time.

I'm not sure why the FDA would cherish the delusion that these drugs need to be *more* strictly controlled. Pharmacies can only get a limited supply per year. The prescriptions can't be for more than a certain time period's worth of pills. The prescription can't be "called in", and I seem to recall that you can't get refills on them or the number is restricted. IIRC the doctor isn't supposed to prescribe or do a refill without examining the patient.

BTW, it was standard practice for doctors and psychiatrists to advise kids on Ritalin or Ritalin derivatives to *only* take the medication on school days. You can "get used" to the standard dosage, and taking days off from the medication helps alleviate that. Judging from the Wikipedia articles, this is still a common recommendation.

#45 ::: Thomas Ware ::: (view all by) ::: February 10, 2006, 05:21 PM:

Sharing some of my experience with Ritalin over at Suzie's place:

I was dosed with that crap when I was a ‘hyperactive’, fifties speak for ADD, five year old. Prescribed later in life for over ten years to counteract my narcolopsy, until I figured out it was actually making it worse - it may be funny to watch someone fall asleep while lifting their coffee cup from the table to their lips, it ain’t when it’s you. Falling asleep is a relief compared to the catatonia - try explaining to a cop, a Rez cop no less, that you ran off the road when you swerved to avoid a sand worm straight out of Frank Herbert’s Dune.

No Drugs*. No alcohol*, no caffeine (I’m working on the nicotine thing). Hydrate, green tea, very little if no red meat. Schedule not only sleep but activities for when unable (you have no idea how funny I, personally, find the pajama clad blogger stereotype).

No detraction, Ms Hayden, my uncle had it so bad we (my sons and I, the only caregivers) eventually had to put him in a home (something my children will not, can not, afford to do). I still have some problems - any longer than an hour in a staff meeting listening to some Reichwing administrator blovate starts a catatonia that can take hours to overcome; so to I cannot drive for more than a couple of hours - I've already been run off the road once by a sand worm, not 'gonna go there again. Just sayin', fifteen years aago I found away to get a handle on it without big pharma.

*I do enjoy an occasional toke now and then, and each afternoon my buds' and I meet down at The Group W Bench** for a single pint of Bachelor Bitter. **It's a VFW thing, got nothing to do with and in fact predates Our Mad King George.

#46 ::: Claude Muncey ::: (view all by) ::: February 10, 2006, 05:26 PM:

Emily -- before that. My check shows that Ritalin (Methylphenidate) went off-patent in 1964.

#47 ::: Adam Teter (aka, PinkDreamPoppies) ::: (view all by) ::: February 10, 2006, 06:02 PM:

Emily: With regard to controls on Ritalin prescriptions, my personal experience is that refills are not available; new prescriptions must be written every thirty days and delivered by hand from the doctor's office to the pharmacy.

Chuck: The thing of it is, problem children who are given Ritalin do not respond positively to the medication. It's a stimulant, not a sedative, and so will not calm those children down. My experience is that children who are given Ritalin whose behavior does not improve are taken off Ritalin.

Actually, to be more accurate, the teachers and staff members who work with the students encourage those students' parents to have their children taken off Ritalin. Educators, by and large, work with the children that are brought to them. They are not able to prescribe drugs to students (obviously) and have limited influence over parents in getting parents to have their children prescribed medications.

So far as start-and-end times are concerned, they could certainly use adjustment but, as was pointed out, there are so many competing interests at play in determining when children start and end their school days. There are extracurricular activities to consider, work schedules for students, work schedules for parents, and so forth. Unfortunately, older models for when students should attend school assume that there is a parent at home so that students aren't unsupervised; this is the case much less often today. It's a complicated situation that is difficult for school districts, students, and parents alike to navigate.

I'll tell you honestly that I don't know how to improve it.

Lila: those are common reactions to Ritalin and Adderall. I'm happy to hear, though, that your daughter has been able to live well after changes in her situation.

#48 ::: Lenny Bailes ::: (view all by) ::: February 10, 2006, 06:09 PM:

Is pseudephedrine the same thing as pseud_o_ephedrine -- nasal decongestant in the cold remedies? My Walgreen's in San Francisco still has those on the shelves. I bought a (*sniffle*) box of Tylenol Allergy Complete last week. I'm still resentful of the ban on the PPA decongestant that came before pseudoephedrine. They pulled that one on the claim that bulemics were using it and giving themselves hemorrhages.

This is as nothing, though, compared to what they want to do to Teresa. Sympathy, and stay in touch with your local Great Rumrunners representative.

#49 ::: Chuck Divine ::: (view all by) ::: February 10, 2006, 06:36 PM:

Interesting points, all.

While I was out swimming, a few thoughts came to mind. Out swimming? Yes.

OK -- to help people understand some of my reactions it might help to know a bit more about me than is evident from the kinds of comments I've made here so far.

What are my health problems? Well, I'm allergic to some cats. There are a few foods that give me more than a bit of indigestion. When I lived in New Jersey, I suffered a bit from hay fever. My drugs are aspirin (occasionally), antihistimines (even more occasionally) and alcohol (wine at meals, sometimes scotch, beer when I'm in the mood). I'm extremely healthy by most standards. Oh -- I did finish the Marine Corps Marathon 10 years ago. I'm also a bit brighter and better educated than average.

You would think my life is problem free. Well, I don't have anyone trying to take needed drugs away from me. The bullies who are trying to deprive Teresa and the others who have come forward here still manage to go after me as well. Why? I have this wicked habit of thinking for myself and acting independently. I do work well with others, but I'm hardly a fawning sycophant. You would not believe -- or maybe you would -- the kind of trouble this approach to life has gotten me. When the bullies go after Teresa and the rest of you, they claim they're doing something good like "fighting drug abuse." It's much harder to get away with that kind of excuse with me.

I tend to take a different position on the demands that are made on people today. I do understand that people want to do lots of things. Unfortunately, we can't do all that we want to do. I might be a bit more sensitized to that since I am a high mileage, somewhat competitive runner. Some of my limits are higher than most people's. When people try to approach or exceed those limits, I generally advise caution. So do my athletic friends. Well, most of them. We understand better than most the very real limits people have. Ignoring them can lead to significant problems and make our lives worse, not better.

#50 ::: Cassie ::: (view all by) ::: February 10, 2006, 06:38 PM:

I go back and forth on the school start time thing. Back then, I was in favor of starting later-- but we had late-start days sometimes that began later rather than ending later, and it messed up all the buses. The problem with our district is that we want the kids back home by dinner time-- the furthest you can push the elementary schools back is about an hour and a half, which puts at least some kids waiting for buses and walking home in the dark. If you switch the little kids and the high school, they're still in the dark, but in the morning. We don't have enough buses to run everyone around at once.

Stupid babysitting drug-controllers. Everything has side effects. Food will kill you. Sugar will kill you. Oxygen will kill you. Time will kill you. It's better to let people weigh the consequences themselves.

#51 ::: Larry Brennan ::: (view all by) ::: February 10, 2006, 08:01 PM:

Lenny - I've seen pseud(o)ephedrine spelled both ways.

#52 ::: Emily Cartier ::: (view all by) ::: February 10, 2006, 08:19 PM:

With regard to controls on Ritalin prescriptions, my personal experience is that refills are not available; new prescriptions must be written every thirty days and delivered by hand from the doctor's office to the pharmacy.

My experience is 12 years out of date :). I was about 16 when I went off Dexedrine. So I honestly didn't remember the exact rules, just that I ran out once in December and couldn't get the prescription filled til my mother had tried multiple pharmacies. They were all out of their year's supply and couldn't get more. The explanation of Schedule II controlled substance on Wikipedia didn't do much to fill in the gaps in my memory.

Emily -- before that. My check shows that Ritalin (Methylphenidate) went off-patent in 1964.

I cited my source. Please give them corrected information, I can't correct them since I don't have appropriate references to do so. I admit I haven't cross-checked with the US Patent office, as I don't recall the details of how to handle searches on patents prior to 1976 when you don't have the patent number (and I seem to recall that it requires having a known patent number for a similar object). It is entirely possible that 1954 was the date it became available to the public, and the patent date was earlier. It's all speculation since my references are limited to what I can find online.

I'm still stumped why an organization would attack Ritalin. It's certainly not a drug suitable for all problems, but it's also about as close to generally recognized as safe as you're going to get with a stimulant. The side effects are well understood, the contraindications are also well understood, and with proper monitoring it's a good treatment for conditions like ADD and narcolepsy. That's *why* doctors use it as the first treatment to test whether a child has ADD.

#53 ::: A. J. Luxton ::: (view all by) ::: February 10, 2006, 08:54 PM:

I have ADD and a sleep disorder (circadian rhythm disorder -- I'm wakey in the evenings and loggy in the mornings, and my schedule sort of slouches later and later until I can't go to sleep before 10 in the morning or wake up properly before 6 at night, at which point I'm missing sleep left and right in a futile effort to put things back together.)

I'm finally starting to get things put right with the circadian rhythm problem by making sure there's light in the mornings.

I imagine that if someone illegalized the Sun, I would be EXTREMELY pissed off. So, Teresa and others, you have my every sympathy.

How do I cope with ADD? Well enough to function, not well enough to function perfectly. I make sure my schedule is deadline-based, which always seems to kick me into overdrive. I self-medicate some with what's available. My brain is not totally cooperative all of the time, or in fact a lot of the time. I do what I can to create windows of good brain time and use them as well as I can.

Reading these threads is starting to convince me that I might want to actually see a doctor after all these years. But a part of me is balking. Not necessarily a very rational part.

When I was a teenager, they gave me ritalin for a while (which caused migraines) then switched me to dexedrine. The dexedrine didn't give me migraines. I was supposed to be taking it on the days I went to school, which was all right with me. Even at that age, I was very carefully self-observant about the effects of mind-altering drugs: I noticed that while I could concentrate more thoroughly, I wasn't quite as creative. I couldn't make the logical jumps that are my personal standard of good thinkin'.

This was OK for school, because I was going to a public school that just didn't operate on my level in the first place, and my accomplishments at that place largely consisted of reading Terry Brooks under my desk.

My mother, however, saw me reading on Saturday, asked me to clean my room, and when I wouldn't, came in with a pill and a glass of water, determined to feed it to me so I'd be more tractable.

"Slippery slope!" cried Small A.J. Luxton, who had possibly already read Brave New World by then, and jumped ship totally.

I'm sure I'm not the only one, and I'm guessing that backlashes from people who went through something like I did and then assumed that their experience was EVERYONE'S experience have something to do with the current set of problems.

The government just can't get it right.

There is a difference between "don't force-feed Ritalin to everyone" and "make Ritalin unavailable to everyone." But they can't see that difference. As far as the group mind is concerned, if it is good for one person, it must be good for everyone, and if it proves to be no good for everyone, it must be good for no-one.

I mean, you see the same thing in the fringy end of the health-food/herbal medicine communities -- because celiac disease is being discovered as a problem in a wider sample of people, there's a subset who believe that wheat is bad for everyone.

Us-or-them logic! It's not just for judging PEOPLE anymore! If that pill made you feel bad, it should be OUTLAWED! Sigh.

#54 ::: julia ::: (view all by) ::: February 10, 2006, 09:08 PM:

The problem with Ritalinis not that it doesn't do what it's supposed to. The problem with Ritalin is that school administrators with no particular medical knowledge have been demanding that parents give it to any child who doesn't adjust well to the high-pressure, low-stress-relief (budget cuts? Gym goes first) environment that our schools are forcing on our children.

Children aren't born with impulse control, and a lot of them (particularly boys, who are the commanding majority of Ritalin users) aren't taught it, because boys will be boys and all that.

I understand that schools are in a bind having to address the behavior of those children. I don't see how giving children who only fit the profile of an appropriate patient by being "disruptive" what is basically speed is going to help anyone concerned.

#55 ::: Chris Clarke ::: (view all by) ::: February 10, 2006, 10:55 PM:

A brief, heartfelt message to the parents of the kids with ADD who are reluctant to resort to medication:

Unless you are the most flexible and understanding parent possible - which given the venue I assume you are, or close to it - and can provide a school situation in which the majority of instructors have a progressive and helpful attitude regarding ADD, and your child has a relatively mild form of the syndrome, her life will suck.

I mean, really suck. Eight hours a day of trying to force her mind to do something it cannot do, and then homework. And honors classes, as mentioned above, or any other way of making the work interesting and compelling, are a great idea. Hell, every kid should have a more vibrant school environment regardless of his neurochemical state. But that universal human right is at best a palliative. Unless we're hyperfocusing, we cannot, unmedicated, focus for long even on interesting or challenging stuff.

I went to a school at age eight that delivered me to college at age 14, so I have a bit of experience in the "enriched curriculum as an ADD palliative" area. AP biology at 11, electives of Hindi and Russian and our school was I think the first one in the state of New York with a laser in its physics lab... and it was hell.

Coping strategies are important, but for many kids with ADD - including this kid at age 46 - coping strategies are part of the chamber of horrors. Instead of worrying about whether you remembered all your homework, you worry about whether you wrote down all your homework on the "to-do" list. Each failed coping strategy - and there will be hundreds over your child's life - will be a talisman of failure.

And you kid will smile, and say it's helping, and maybe she really will think it is. And she will be hoping you don't notice the blank spots on the to-do list. or the fact that she used up her "floating" grade in calculus on the test she flunked because she took it while trying desperately to stop working on that poem in Latin.

And absolutely. Yes. Kids that don't need Ritalin are being prescribed it in ill-advised attempts to streamline the schooling-industrial complex, and No Child Left Behind policies being inflicted on public schools could cause a wax dummy to present with symptoms of ADD, and some drugs won't work for some kids, and no drugs will work for some kids and no drug completely works for anyone.

But oh my fucking god, I wish someone had reflexively prescribed me Ritalin 35 years ago instead of working on behavior mod or curriculum enrichment or rewards or penalties or coping strategies. Because the stuff that causes your kid problems paying attention in algebra will very likely cause her to feel stupid, or useless, or - and this is the best case scenario - prompt her to take unnecessary sexual or physical or emotional risks as an adult, and there''s not a coping strategy in the world that will prevent those.

And the drugs stand a better chance than any other course of action of actually doing something to fix it. Sure, some schools overprescribe this particular metaphorical set of eyeglasses. But nothing works as well for the kids whose vision needs correction.

Please. Please don't make your kid go through what I went through, the feeling like the lowest piece of shit on the earth and the suicidal ideation and the constantly setting the lowest possible sights and the assumption that you don't deserve to succeed in what you do, the "lazy" and the "fuckups" and the "space case" shit.

That stuff is the real poison, and you can hand a lifetime supply to your kid with the best intentions. My parents did, and I will never get it out of my system, but if the Wellbutrin fucks up - and so far it has only and markedly helped - I stop taking it, and in two weeks it's gone.

#56 ::: Chris Clarke ::: (view all by) ::: February 10, 2006, 11:23 PM:

Okay, maybe not "brief."

#57 ::: Bonnie ::: (view all by) ::: February 11, 2006, 12:01 AM:

To Emily:

"I'm not sure why the FDA would cherish the delusion that these drugs need to be *more* strictly controlled. Pharmacies can only get a limited supply per year. The prescriptions can't be for more than a certain time period's worth of pills. The prescription can't be "called in", and I seem to recall that you can't get refills on them or the number is restricted. IIRC the doctor isn't supposed to prescribe or do a refill without examining the patient."

For the most part, this is not true. I work at a long-term-care pharmacy, and in fact I am in charge of ordering the Schedule II's (or C2's, we call them). Perhaps this varies by state, but I can order as many bottles of Adderall or Ritalin I like; nobody has ever placed any kind of a limit on me. Our pharmacy services several juvenile mental health facilites, so naturally we have quite a bit of demand for these drugs.

True, a C2 prescription (along with all other controlled drugs) is supposed to last for only six months. However, when we do our refills (all Schedule II's have to be refilled as a new prescription each time) the pharmacist simply verifies the prescription and it is sent out. The only exception to this is when a Schedule II is refilled at an "Assisted Living Facility," as opposed to a CNF (certified nursing facility, or nursing home). We get a letter from the doctor granting permission to fill this prescription each time, but the doctors almost automatically grant such permission. Most patients are seen by their doctors once a year, if that.

True, a lot of our patients are older, but even the juveniles on C2's usually adhere to this pattern; perhaps the dosages are adjusted once in a while, but for the most part these are long-term drugs. They go out as regularly as clockwork. I simply don't see the restrictions on most Schedule II's as you are describing.

#58 ::: Randolph Fritz ::: (view all by) ::: February 11, 2006, 12:36 AM:

It may also be that the FDA is responding to Big Pharma's desire to switch all the ADHD patients and narcoleptics to new, in-patent drugs, which are much more profitable; certainly the firms who hold the patents on alternatives are not going to lift a finger to see generics remain available. In any event, I think the whole thing is rotten, and am amazed at the whole mess; I have gotten far enough from the thinking which created the drug war (and never bought into the big pharma monopoly) that it all seems very remote, painful, and strange to me.

#59 ::: Sharon ::: (view all by) ::: February 11, 2006, 01:10 AM:

For the ritalin restrictions: there was a shortage of ritalin in the early 90s that lasted for a few months, maybe this is what Emily is remembering? I called or went to many, many pharmacies trying to get that prescription filled. And my prescription was for a 3 month supply, with a doctor visit to get the prescription every 3 months.

On the use of ritalin: I don't take the ritalin any more, and probably I should - but oh, Chris Clarke. What you said. Yes.

Girls didn't get ADD when I was a kid, and I couldn't possibly have had that, anyway, so I was 20 before someone told me that my brain worked differently. And while it made a difference, the knowledge and the ritalin, nothing erases 20 years of believing that you are unmotivated, and lazy, and spaced out, and if you can read that whole book in one sitting you can do this other (impossible) thing - the boundary and approval issues - yeah, what you said. If I had a time machine, and I was feeling selfish, I'd surely slip my younger self some ritalin.

#60 ::: Nicole J. LeBoeuf-Little ::: (view all by) ::: February 11, 2006, 01:13 AM:

Oh, Gods. What will they think of next. I'm sure there's a certain segment of the population cheering over this, and I want to spit in their Gods-dammed fscking faces.

There's this one gal. Currently on my shitlist. Who, when the subject of ADHD came up during a dinner conversation, smiled sweetly at her husband and said, "We don't use that term in this house. See, we don't believe it exists."

I pointed at my husband and said, "You're looking at someone who's got it. Bad. Oh, and my brother? Would not have graduated without Ritalin. So don't talk to me about ADHD not existing."

She says, "Oh, I'm sure your brother had symptoms which were misdiagnosed as ADHD, but really all it is, is a way to villify kids who just have a different learning style."

This is not the reason she is on my shitlist. But it was one of the early signs that she might get there.

My husband never was on Ritalin for his ADHD (of the non-hyperactive variety--we have a psychologist friend who's told us that's how the DSM refers to it these days: it's all ADHD but some people do not express the H. Whatever). He has been going through a lot of the hell Chris Clarke describes--the billions of attempts at coping strategies, some of which work, some of which don't. His choice, though. He doesn't want to look into the possibility of medication. So he uses his T-Mobile Sidekick to make copious reminder notes, and he tries to attach his various responsibilities to recurring events, like wake up->feed cats or go to bed->plug in Sidekick.

Lately he's been doing some reading on the brain chemistry possibly involved in ADHD, and though I haven't managed to internalize everything he tells me about it, his conclusions do seem generally helpful in any case. I mean, take more C and B vitamins, exercise more, and consume less aspertame--that's good for just about anyone, or in the latter case, anyone who finds that Nutrasweet "makes them feel stupid" and whose mother actually broke out in symptoms resembling MS when she used to drink Diet Coke.

As for my brother.... I think the whole family kind of wishes he were still on Ritalin. He's all grown up now and it's his choice, and he chooses not to. Meanwhile he drinks too much and smokes. Mom is convinced he's self-medicating.

I get very, very, VERY annoyed with those people who think every one of their personal biochemical experiences is Universal To Humanity. The guy who told my friend to stop taking her anti-depressants and just do more yoga. The people who say that everyone should be vegetarian, or vegan, or wheat-free, etc. The ones who think aspertame will affect everyone like it does my mother-in-law. The ones who think that children diagnosed with ADHD and prescribed Ritalin "just have a different learning style" and should never be medicated. Or who think that because a tiny percent of people over many years suffered liver damage, no one should be allowed to take pemoline.

Godsdamned people. It's people who should be black-boxed and then taken off the market, I sometimes think.

#61 ::: Nicole J. LeBoeuf-Little ::: (view all by) ::: February 11, 2006, 01:19 AM:

(Er. The brain chemistry stuff. That my husband has been reading up on. He blogged it here. Just in case anyone wants to take a gander and say, "Ah, so, how true" or "Are you nuts? This is crap!" or something in between.)

#62 ::: Jon H ::: (view all by) ::: February 11, 2006, 01:42 AM:

Lila writes: "Eventually we took her off all meds, homeschooled for a year, then enrolled her in a new school where she was put in honors classes--duh, it's a lot easier to pay attention to INTERESTING WORK than to a never-ending supply of worksheets."

The problem is, that a lot of worthwhile self-directed goals (hobbys, long-term ambitions) require a lot of dreadfully boring work in between the fun/exciting parts. Lots of worksheets or worksheet-equivalents.

That's just life.

You can certainly try to arrange K-12 school to be constantly engaging and challenging, but the rest of the kid's life may not cooperate. They may get to college and fall apart, despite being in very challenging, interesting courses.

#63 ::: Jon H ::: (view all by) ::: February 11, 2006, 01:51 AM:

Emily writes: ". They were all out of their year's supply and couldn't get more."

I think the manufacturers produce a certain limited quantity each year, with increases in the limit being controlled by the DEA or the FDA or something. There have been times when the prescriptions grew faster than the regulators could respond.

12 years ago was about the time when ADD was starting to get covered in the media. (I first heard about it, and recognized myself, in a 1993 Wall Street Journal story, the summer before my senior year of college.)

So it'd probably fit that prescription rates were growing faster than expected, leading to a year-end shortage.

#64 ::: Jon H ::: (view all by) ::: February 11, 2006, 01:54 AM:

Regarding school start times, to whatever extent it's relevant, it's only relevant to teenagers, who tend to have earlier start times, busier schedules, more homework and later nights.

Yet ritalin prescriptions are not limited to teens, and the controversy over the % of kids being medicated is not limited to high schools.

#65 ::: Jon H ::: (view all by) ::: February 11, 2006, 02:00 AM:

Emily writes: "The prescriptions can't be for more than a certain time period's worth of pills. The prescription can't be "called in", and I seem to recall that you can't get refills on them or the number is restricted."

No refills, you have to get a written prescription each month. And you're correct that you can only get a month's worth at a time.

"IIRC the doctor isn't supposed to prescribe or do a refill without examining the patient."

I don't think that's the case. My doctors have generally just wanted an annual checkup. In between, I just call in for a new prescription and pick it up at the front desk.

I'm sure the first prescription should follow an exam/interview. But after that, I don't think it's required that each rx be accompanied by an office visit.

I don't think there are enough doctors in the world to do that.

#66 ::: A. J. Luxton ::: (view all by) ::: February 11, 2006, 02:37 AM:

Chris Clarke:

Eyeglasses are a really, really, feckin' good metaphor for ritalin and other ADD drugs. I want to commend you on that metaphor. It checks out perfectly in all the situations I can think of.

There are some people walking around who have trouble seeing. For them, eyeglasses are absolutely necessary and a godsend. They are reduced to lower levels of functioning without eyeglasses. These people must, must, must have their eyeglasses. Keeping their eyeglasses from them would be cruel.

Then there are others who don't have trouble seeing, but let's say they walk like they have trouble seeing. They walk like this because it helps them deal with something similar but unrelated -- maybe their balance centers are a little maladjusted, and they need to run a hand along the wall to get a sense of its presence. Giving them eyeglasses is bad -- it just makes them get headaches.

Then there are people who, let's say, are somewhat nearsighted. They need glasses to make sense of a movie, but they'd get headaches if they wore glasses to read. To extend the metaphor, some of these people want or need to see movies a lot of the time; others don't. Putting glasses on them 24 hours a day might be a boost into the Technicolor world they've missed -- or it might be a horrible disruption of their normal reading habits. What you do here takes discretion and compromise.

I was pretty much in the third category, re ADD, and I was fortunate and loved enough to have parents who might try all kinds of things (including ones more ill-thought than Ritalin) but would always listen to NO, STOP from me sooner or later. And then I was fortunate enough to attend Evergreen College, which offers some great literature classes that -- as far as I can tell -- are based on the "we expect you guys to all be really, really brilliant with a half-teaspoon of attention deficit disorder and a pinch of obsessive compulsive" model.

All I'm really doing, at this point, is sharing anecdotes: because I don't have the magic pill that knows whether the kid needs it. And I don't have the magic flow-chart for the good parent program (one of the various reasons I'm not planning on kids.)

The only course of action of which I can wholeheartedly say "yes -- this WORKS" isn't a course of action a school or government or therapist can take, because it's for all parents to be attentive to the needs of their children, and to their children's existence as real, live, sentient, human beings.

Which they should do anyway.

But, you know, don't tell anybody I said it, or I'll be hiding from the Nobel Obvious Prize committee.

#67 ::: Dave Bell ::: (view all by) ::: February 11, 2006, 04:30 AM:

Reading the mention of the length of the High School day as 9 hours, plus travel time, plus homework, it sounds insane.

I hope that 9 hours includes a meal-break.

But it puts me in mind of the Working Hours Directive in the EU.

[Explanation: The EU doesn't make laws. It issues Directives to the member states instructing them to make laws with certain specified effects, and these implementations can have different loopholes.]

9 hours a day, 5 days a week, might break the directive. But there are averaging clauses and exceptions. Some jobs I'm seeing advertised have 12-hour shifts, 4 days on, 4 days off, but add in commuting and I'd be an accident waiting to happen. 12-hour working days are part of what led to me breaking my leg. And commuting isn't counted as working time.

Anyway, I'd take all that as a starting point for a claim that the school system has become abusive. You don't need Bush Warrants, you have reasonable grounds for suspicion.

And Japan is notorious for high-stress education. What's it like there? I do get the impression that there is a tolerance for out-of-hours escape behaviour, of certain sorts. Not loud, inebriated, karaoke sessions for the kids. but what seems to be a sort of alternative conformity.

What escape modes are permitted by parents in the USA?


#69 ::: A. J. Luxton ::: (view all by) ::: February 11, 2006, 05:38 AM:

Re: school day length, when I went to high school, it was something like 7:00 AM to 3 PM. Yes, there's generally a 45-minute meal break in there. What tripped me up was the hours: as someone mentioned earlier in the thread, there's evidence that adolescents aren't generally built to get up before 9 in the morning, and need more sleep than adults for optimal functioning -- and as I mentioned previously, I have a circadian rhythm problem.

I was the kid who thought it was normal to take two hours getting to sleep, and I got nasty migraines on a weekly-or-more basis.

After a great deal of angst and bumbling on the part of everyone concerned, myself included, I dropped out and took the GED, and -- imagine! -- stopped getting the headaches more than once a month.

I have shared my experience so that people with the same experience won't think they're alone, and people whose children are dealing with this kind of thing will know there are reasons and not just unreasonable awfulness. Probably my information will shortly dwindle to re-iteration and rant about people and systems who don't bother to consider the individuality of human beings, so I'll try to keep it from here on out to minor factual points and somber platitudes.

#70 ::: Jo Walton ::: (view all by) ::: February 11, 2006, 10:37 AM:

Teresa -- re: the people you don't know because they weren't diagnosed and fell out.

Before I went to Minicon in 2001, I'd only vaguely heard of ADD. At Minicon, I met two people who had it, were diagnosed and coping -- and talking to them, it reminded me more and more of a friend of mine in Lancaster who is a lovely person but either hyper-concentrated or couldn't focus. I'd known him for years. In fact, I'd known him and helped him cope for years -- taking him to doctor's appointments he knew he'd miss, moving him in and out of apartments, making sure he ate. He has a degree (Maths) which took him twice as long to get as normal, and he has never worked, because while he was just about capable of being a student, he really couldn't cope with holding down a job.

I came home from Minicon and talked to him about ADD, and suggested he talk to his doctor about it. He talked to the doctor, who said he thought it was only kids, but he'd find out. He found out, and prescribed Ritalin, which has completely and totally turned my friend's life around -- he's just finishing off a funded PhD and has a job lined up. He's in therapy, because suddenly being able to concentrate after thirty-four years of fuzzing out has made it a different world for him in a whole pile of ways.

In the US, with no benefits and no health system, he'd have fallen down a hole and wouldn't have been there to save, or for anyone to know.

I regard the Ritalin in this case as literally lifesaving.

#71 ::: Lila ::: (view all by) ::: February 11, 2006, 10:44 AM:

Jon H. wrote:

"Lila writes: 'Eventually we took her off all meds, homeschooled for a year, then enrolled her in a new school where she was put in honors classes--duh, it's a lot easier to pay attention to INTERESTING WORK than to a never-ending supply of worksheets.'

The problem is, that a lot of worthwhile self-directed goals (hobbys, long-term ambitions) require a lot of dreadfully boring work in between the fun/exciting parts. Lots of worksheets or worksheet-equivalents.

That's just life.

You can certainly try to arrange K-12 school to be constantly engaging and challenging, but the rest of the kid's life may not cooperate. They may get to college and fall apart, despite being in very challenging, interesting courses."

When I said "a steady diet of worksheets", I meant a steady diet of worksheets. That is, busy-work NOT DIRECTED TO ANY GOAL AT ALL. See, the school's approach to my daughter's problem was that every time she exhibited a problem behavior (such as not paying attention), they dropped her down to a lower level class. Thus a kid who was even then reading at a college level was being given remedial reading worksheets.

At the same time her school counselor told her--I heard this with my own ears--"If you think school is boring, you're just going to have to get used to it, because middle school is more boring than elementary, and high school is more boring than middle school, and college is even worse." WTF??? I don't know where he went to school, but this is the exact opposite of my experience (and my daughter's as well).

How is this preparation for life, again? I suppose it might prepare her to be one of those GM employees who gets laid off and is then paid to sit in a room and do nothing, but if I had a job like that I'd look for another job.

During her homeschool year this same child made a quilt, wrote a prizewinning essay on censorship for a national competition, and made over a year's progress in algebra and geometry (math being her least favorite subject). All of those involved a certain amount of grunt work.

In the 4 1/2 years since her reentry to the school system, she's maintained a B average in a mix of classes from basic and dull ("computer skills"--mostly typing, which she already knew) to advanced and interesting (honors lit).

Again, I'm not saying that Ritalin/Adderall isn't useful, or even vital, for some ADHD patients. What I'm saying is, here we have a patient for whom those drugs failed to do the job, and for whom the school environment made the problem worse instead of better. When she moved to a different school in the same district (both public schools) and was given a clean slate and an appropriate level of work (not insanely advanced, just appropriate), she was able to function well.


Everyone's mileage may vary, of course. But the huge difference between these 2 schools in the same city (and incidentally, the one she failed at was the "richer" of the two and the one with the better reputation) suggests to me that school policies, culture, whatever can either be part of the problem or part of the solution.

#72 ::: Lila ::: (view all by) ::: February 11, 2006, 10:52 AM:

Forgot to add that the "failed" school was the same one attended by ADD Kid's older sister, who sailed through happily and never darkened the door of the principal's office. So it's not that it was a BAD SCHOOL--for some pupils it was obviously fine. But woe to the square peg.

#73 ::: Dena Shunra ::: (view all by) ::: February 11, 2006, 11:18 AM:

They eyeglasses issues is indeed similar. It used to be that adults were very critical of a child with eyeglasses - as if the kid weren't trying hard enough to see what was PLAINLY IN FRONT OF THEIR NOSE and the teacher/doctor could see just fine.

And that's a mode of thought that is still around: deaf people are STILL criticized as unwilling to learn to adapt when they use ASL rather than lip-reading. The 'they're not trying hard enough" school of medicine and education.

I think that the attitude could be compressed into "Well I am doing it, I can't see why you aren't," or the "I am the standard of normal" school of thought. It leads to gay-bashing ("it's a lifetyle choice"?) and racism ("they're born that way"), to mention just two of the most terrifying problems of our times.

That strikes me as a bigger problem than pharma-companies, though. It seems to be a standard attitude of at least Western culture, if not all human culture. And the only way I've found to combat it amounts to local weeding...

#74 ::: Merideth ::: (view all by) ::: February 11, 2006, 11:19 AM:

"Reading the mention of the length of the High School day as 9 hours, plus travel time, plus homework, it sounds insane."

I work with teenagers, and insane is the word for their lives.

Most kids I know start school at 7:00 and go till 3:00 - so most get up at 6:00 or earlier to get ready and get in on time. Many go in early for extra-tutoring or to take part in extracurricular activities.

Lunch is about 45 minutes.

If they are involved in Sports, Drama, Dance or other extracurriculars, kids can stay at school for up to 2 more hours.

Home for dinner -- maybe.

Most kids I know then have some sort of outside group they take part in -- Eagle Scouts, karate lessons, volunteer work, anime clubs. The lucky ones get to pick their activity. The unlucky ones have parents who pick for them.

Then -- Homework, usually between one and two hours a night. If the kid wants any free time, they have to take it after homework and before bed. Sacking out after 12:00 a.m. is the norm.

Only to get up at 6:00 a.m. the next morning to start it again.

Weekends are taken up with mandatory (in our school district) volunteer work, and other activities. Athletic kids especially get nailed on the weekend.

It's like an unending hamster wheel of stress and expectations. And the brighter and more motivated the kid -- the more they take on and the more stress they feel.

And it starts younger and younger, it seems. I know 9 year olds with more deadlines and social events than the average 40 year old middle-manager.

#75 ::: JC ::: (view all by) ::: February 11, 2006, 11:25 AM:

I think part of the problem here is that ADHD seems to be not the easiest thing to diagnose. I mean, it's pretty clear that anyone on a stimulant will find it easier to concentrate on what he's doing.

For example, my job right now requires me to work on one, and only one, piece of design full time. I literally can not do this for more than, say, 30 minutes to an hour before I find that I've drifted onto some else. Previous jobs and school allowed me to multi-task so at least I drifted into something else I was supposed to do. An exception would be when the only grad school task left was my dissertation. Writing it was hard because I could only work on it in short time increments before I literally could do no more on it. I resorted to carrying a laptop with me whereever I went (and drinking more than a certain amount of tea). I drove my advisor nuts because I could not maintain and keep to a schedule.

Of course, I can't simply fall further and further behind schedule on my design and expect to keep my job. So for the past month, I've been in the habit being caffinated at work. It makes me feel lethargic and panicky which doesn't do much for my interpersonal skills. I've been blowing up a co-workers occasionally. But I can sit still and stay on one design problem for a couple of hours. I've gotten more done in January than I had in the 3 months before it. I'm in serious danger of not losing my job. (It's also had very weird side effects like I remember to wash my dishes.)

So the point is that if anyone takes a stimulant, he will be better able to concentrate. As near as I can tell, that's what stimulants do. (Caffeine has never kept me awake. Like I said, it makes me feel lethargic. But I think it does sort of level out the curlicues in my thought processes. I suspect it prevents me from being "non-sequitur boy," the nickname my co-workers picked for me at my previous job. My current boss all but called me that in my last performance evaluation so I figure it's not a fluke.) If that's the case, I can completely see Ritalin being simultaneously over-prescribed and under-prescribed. That is, if diagnosis is difficult, then some people who get the drug shouldn't, and others who should don't.

For those who should and do though, I can see why it's a godsend.

My parents owned a Chinese restaurant which is why this particular analogy comes to me. I'm apologizing in advance for its possible triviallity. The movement to get rid of drugs to treat ADHD strikes me as being like the movement to get rid of MSG. Yes, there are people who really, really ought not have any MSG and they shouldn't. (They probably also have issues eating mushrooms.) It's not clear to me though that the correct solution to their problem is to prevent anyone from having MSG. It seems to me that good labeling laws and understanding restaurants (such as my parents') would do the trick.

Likewise, it strikes me that what's happening is that much of the vehemence directed towards drugs to treat ADHD comes from those who shouldn't have been prescribed the drug for whatever reason.

As for the woman Nicole mentioned who doesn't believe in ADHD, which strikes me as like not believing in gravity, it sounds to me like she's trying to bolster the self-esteem of her ADHD afflicted child by calling it something other than a disorder. (However, it seems to me having ADHD doesn't necessariily mean that there's something wrong with you.)

#76 ::: Beth Meacham ::: (view all by) ::: February 11, 2006, 11:49 AM:

Not Ritalin too! That hits home. They already make it nearly impossible to get the stuff.

#77 ::: Joyce Reynolds-Ward ::: (view all by) ::: February 11, 2006, 12:27 PM:

As a special ed teacher who works with ADHD kids as part of my caseload, this discussion really nails it home. Officially, the theory is that the best way to treat ADHD in the educational setting is a combination of meds and behavioral therapy. In real life...well, you get parents like the ones above who don't believe in ADHD, the others who excuse everything (including antisocial behavior) on ADHD, the parents who do everything they can to cooperate with the school to make it work for the kids....you name it, it's out there.

Don't underestimate the self-esteem issues done to a kid who is smart, but who may have *both* a learning disability and ADHD. Or who has a combination of a lower-end IQ and ADHD. Or for whom the concentration problems which go along with ADHD keeps them from doing well in school.

I have some students who are turning things around behaviorally with certain types of interventions--but what works is very individual and requires school and home to work together. Not every family or every school has the resources to do that. But when the turnaround happens, it's cool to see.

This is too short for my liking, but I've gotta run.

#78 ::: Emily Cartier ::: (view all by) ::: February 11, 2006, 12:46 PM:

I'm sure the first prescription should follow an exam/interview. But after that, I don't think it's required that each rx be accompanied by an office visit.

I don't think it's required by the FDA. I know it's recommended that if you're on one of the stimulant drugs for ADD that you get regular monitoring. Partially to guard against drug abuse, partially to check for side effects like the psychotic episodes, partially to check for the "less serious" side effects like weight loss.

Thing is, the FDA doesn't have a way to control the drug more tightly without making it illegal (which will not exactly work to control the drug better). States are the ones who license doctors, not the FDA, so they're the ones who can control how doctors handle the drugs. I'm not sure that warning a doctor for prescribing "too much" Ritalin or revoking medical licenses is the right path. I suspect having states require quarterly or monthly doctor's visits for patients taking amphetamine type stimulants is not the right path either. An adult patient will hopefully have the sense to call their doctor if they drop below a healthy weight or start lashing out at their SO or kids. A child patient might need closer supervision, but doctors tend to take the parent more seriously than the child. The parent is often the one pushing for the kid to be medicated for a longer period of time, so I'm not sure how good a plan it is to give the parent more chances to push for that.

The trick with regulations is to frame them in a way so that people want to do what you want them to do. Under the current rules, things work fairly well. If someone wants to use amphetamines recreationally, they aren't likely to get them from a doctor. Better to contact students in the chemistry or engineering departments in the nearest college. If someone needs the drugs for a legitimate medical use, they can get them without substantially more jumping through hoops than for any other prescription medication *and* the first choice medications are generic and well understood. The only way I can see a rules change helping people is if more people who are self medicating with illegal amphetamines were under a doctor's supervision. In the real world, the FDA can't do much to control that. The drugs aren't suitable for OTC status, and it's not very meaningful to change from Schedule II to Schedule III, IV or V. It's still a prescription drug, and that means paying for a doctor.

Lila - for me the solution was a highly regimented school rather than medication. I knew my teachers would talk to my parents, and vice versa, and both groups of adults talked to me. Having homework every night, and large projects on a regular basis, and syllabi for each class made it a lot easier on me. There were more patterns that I could use to remember and keep track. Plus I could swap between tasks and still be doing something useful. And there's *nothing* like hyperfocus for getting a big project done :D.

JC - Most humans exhibit some symptoms of ADD. They're all normal behaviors. The problem comes in when it's a normal behavior taken to a destructive extreme. I spent most of yesterday in hyperfocus without quite realizing it. I was concentrating on the same thing all day, from around 8 am until 3pm, and then kicking it in again around 4pm until nearly midnight. In a normal job, that's very self destructive. Yes, you get a lot done with a workday like that, but you won't be good for much the next day.

The next destructive facet is hypofocus. When I'm in hypofocus, I'm good for about 10-15 minutes on a given task, tops. If it's really bad, I can't retain anything. I'll make a to-do list on my Palm, and spend 20 minutes trying to remember the 6 things I forgot while writing down the first item. I've stepped out my front door and realized that in the time it took me to put on my shoes, I forgot where I was going.

Both of these traits are something everyone has. They're *normal*. Just, most people have states in between. I kinda don't. If I'm managing myself well, I use hyperfocus to act like I'm using normal concentration, and I force myself to take normal breaks. That way I don't burn myself out one day and have nothing left the next (well, most of the time...).

And a touch of hypofocus is really good for housework :). Apply cleaner to the bathtub, get distracted by the floor being dirty so you sweep the floor, get distracted by the sink being dirty. Oh wait, wasn't I making tea? Have a cuppa tea, remember that you were washing the bathtub, come back and the cleaner has had time to loosen things up nicely on the sink and the bathtub.

The final destructive aspect is hyperactivity. Thankfully, not everyone who exhibits hyperfocus and hypofocus has this one (hypofocus and hyperfocus don't always happen together either btw, but if you've got hyperfocus without hypo, people don't think you've got a disease). Hyperactivity is normal activity levels taken to an extreme. This is the kind of person who thrives on football in the fall, basketball in the winter, baseball in the spring, part time job all through the school year, and sitting through school itself is a challenge because they need to move. Despite all the sports.

The only easy diagnoses are the really extreme cases. Everyone else, doctors try a low stimulant dose (far lower than they'd use on a normal person) and see what happens. In someone with ADD, ideally they get some concentration states in between hyperfocus and hypofocus. In someone with ADHD, they're hoping for the additional concentration states and a muting of the need for movement. So the kid who's doing sports every season he can, and doing an active part time job doesn't need to bounce in his seat or wriggle all through class to concentrate.

#79 ::: Jules ::: (view all by) ::: February 11, 2006, 01:16 PM:

A lot of interesting points above. As I'm sure I've mentioned here before, I believe myself to suffer mildly from ADHD (although my doctor is resisting the diagnosis on the grounds that I don't exhibit any symptoms of hyperactivity, as if that was all there was to it...) and certainly a lot of the stories above rung very true for me.

A few comments. Sorry about the length of the post; a lot of people have said a lot of things that I feel a need to respond to. :)

Adam Teter:
From the reading I've done, approximately 1 in 25 people has some form of ADD. This number is consistent across cultures and geographic regions. This statistic is slightly misleading, though, because it is for ADD as a whole and not just ADHD. In some people, ADD manifests itself as an inability to concentrate that results in a person decreasing their activity level. Unable to concentrate on anything they end up doing nothing. (These people usually end up being tagged as lazy instead of poorly behaved.)

The modern terminology is that both forms are called "ADHD", with subcategories "primarily hyperactive" for what you're calling ADHD (and which is also known as hyperkinetic disorder) and "primarily inattentive" for what you're calling ADD. I think this makes a lot more sense than having confusing similar acronyms that give no real indication of the relationship between the two forms (i.e., that they're currently believed to be different manifestations of symptoms with the same underlying cause).

Kat Meltzer:
You can see which drugs Public Citizen wants to save us from at: http://www.adrugrecall.com/html/recalled.html

Good god. Are they trying to promote public safety, or make a quick buck for ambulance chasing lawyers? It's hard to tell the difference from here.

Teresa:
If you don't have a condition that responds to it, Ritalin's pretty mild stuff.

I've heard it said in a few places that you can tell if somebody has ADHD because their condition improves when given Ritalin (or some other substitute stimulant). Researching it further suggests otherwise: that class of stimulants will improve general performance in just about anyone who uses it, including people struggling to concentrate for reasons other than ADHD (e.g. sleep disorders, depression). This is why students take it to help improve performance (as mentioned in the 'Marketplace' report Jim linked in his essay).

Lila:
I have a child with inattentive-type ADD who initially found school to be a horrible struggle. Ritalin turned out to be a terrible med for her. So did Adderall (both sent her into uncontrolled, violent rages). Eventually we took her off all meds, homeschooled for a year, then enrolled her in a new school where she was put in honors classes--duh, it's a lot easier to pay attention to INTERESTING WORK than to a never-ending supply of worksheets. Since then she has coped well.

I was lucky enough to get a head start at school due to the fact that I learned to read at an earlier age than most of the other kids, and spent many years just reading every book I could find. This basically meant that the fact that I never did any of the homework assigned to me wasn't a real problem until the last couple of years of school. I knew the stuff anyway, or if I didn't it was easy to learn. Having interesting lessons certainly helped though. Why did I get As for history and struggle to get Cs for geography? Because my history teacher made his lessons interesting with lively anecdotes, while the geography teacher insisted on sitting us down and making us colour in maps. Yep, there's that never-ending supply of worksheets you mention.

A J Luxton:
When I was a teenager, they gave me ritalin for a while (which caused migraines) then switched me to dexedrine. [...] I noticed that while I could concentrate more thoroughly, I wasn't quite as creative. I couldn't make the logical jumps that are my personal standard of good thinkin'.

I hear that a lot. And while I'm hoping an ADHD diagnosis will help me with day to day life, I'm not looking forward to dealing with this consequence of the medication. I also noticed it when I was on antidepressants a couple of years ago. I totally stopped writing when I started on them. When I came off, I went on a writing spree that lasted months.

I'm fortunate enough to work in a small business with a partner who is quite tolerant of my problems. Perhaps he'll understand if I go on a 3 on/4 off regime. Or something like that. 3 days of organised work per week, 4 of creative...

Chris Clarke:
Coping strategies are important, but for many kids with ADD - including this kid at age 46 - coping strategies are part of the chamber of horrors. Instead of worrying about whether you remembered all your homework, you worry about whether you wrote down all your homework on the "to-do" list. Each failed coping strategy - and there will be hundreds over your child's life - will be a talisman of failure.

And you kid will smile, and say it's helping, and maybe she really will think it is. And she will be hoping you don't notice the blank spots on the to-do list. or the fact that she used up her "floating" grade in calculus on the test she flunked because she took it while trying desperately to stop working on that poem in Latin.

Yep, that's me. I remember at school I was frequently disciplined for not doing homework; there were a couple of detentions and things like that. Then they came up with the brilliant idea of a "homework report card", basically a glorified to-do list that I had to get everyone to sign. So on top of the no-homework detentions, I ended up with a set of no-signature-on-the-report-card detentions. Of course it didn't work, so in the end they just gave up on me ever doing homework. After all, my grades weren't bad, it looked as though I'd at least pass my exams, why worry about it?

Looking back at it, I'm surprised nobody ever suggested the diagnosis. But nobody did. It wasn't until I started reading people on Internet forums describing their own experiences that I realised how similar they were to my own.

Nicole J LeBouef-Little:
She says, "Oh, I'm sure your brother had symptoms which were misdiagnosed as ADHD, but really all it is, is a way to villify kids who just have a different learning style."

What you're looking at there is somebody who doesn't realise that names of mental disorders are, in general, just labels for people whose brain works slightly differently from the rest of the world. You could just as easily say "clinical depression is just a way of labelling people who are unhappy a lot of the time" or "schizophrenic is just what they call people who see the world in a different way to us".

The word "villify", however, implies some kind of negative intent on behalf of the medical impression, which is a rather disturbing world view.

My husband [...] has been going through a lot of the hell Chris Clarke describes--the billions of attempts at coping strategies, some of which work, some of which don't. His choice, though. He doesn't want to look into the possibility of medication. So he uses his T-Mobile Sidekick to make copious reminder notes, and he tries to attach his various responsibilities to recurring events, like wake up->feed cats or go to bed->plug in Sidekick.

Having a routine is certainly the best way of remembering repetitive tasks. I've tried taking notes of what I need to do... problem is that I often forget to make the note. That's the most annoying aspect of this whole problem: its effects also stretch to disrupting the things you do to work around it.


Joyce Reynolds-Ward:
Don't underestimate the self-esteem issues done to a kid who is smart, but who may have *both* a learning disability and ADHD. Or who has a combination of a lower-end IQ and ADHD. Or for whom the concentration problems which go along with ADHD keeps them from doing well in school.

I didn't have any of these problems -- I made it through school with little difficulty, even to a well-respected university where I graduated with a good degree without ever really getting to grips with the problems I had. But still, the problems were even worse when I left education and had to actually hold down a job. I thought I was smart, I thought I was capable of doing just about anything I wanted. And then I slowly realised that I was incapable of doing any job that I wanted, and that all I was fit for was manual labour. That was a self-esteem issue. Thankfully, it's one I've got beyond these days. I have a grip on my problem, and I have colleagues who are prepared to help me with it.

#80 ::: Larry Brennan ::: (view all by) ::: February 11, 2006, 01:38 PM:

Jules - You expressed a concern about ADHD meds and migraines. A very close friend of mine has a history of moderate to severe migraines and has to be very careful of the meds he takes. He was prescribed Stratera for a non-ADHD diagnosis, and his migraine frequency has dropped substantially. His MD thinks that this med in particular may have made the difference. Of course, reactions differ, but if one med doesn't work or has a bad side effect, there are others.

#81 ::: Amy Rye ::: (view all by) ::: February 11, 2006, 02:03 PM:

The refrain that keeps going through my head as I read this is:

First they banned Pemoline, and I didn't speak up because I wasn't a narcoleptic.
Then they banned Ritalin, and I didn't say anything because I didn't have ADHD.
Then they banned morphine, and I didn't say anything because I didn't need painkillers.
Then they banned SSRI's, and there were no activists left to speak up for me.

Who do I write to again?

#82 ::: Laurie Mann ::: (view all by) ::: February 11, 2006, 04:56 PM:

OOh boy, where to start with this one.

I was one of the few girls in my school on Ritalin 40 years ago. There were only a couple of boys on it in those days. I was do disruptive in kindergarten that, when I was hospitalized for another illness, they did a complete run of tests to make sure I didn't have a brain tumor. They decided I was hyperactive and prescribed Ritalin. That, generally, calmed me down a little. I went on to be socially inept and academically outstanding, so, of course, that meant I was destined for fandom! ;->

So I was on Ritalin for about four years total. When I was severely depressed as a young adolscent, they prescribed it again, but it made absolutely no difference, so I didn't stay on it for long.

Leslie was also on Ritalin for much of her childhood. The difference for her was noticeable.

Physically, it did nothing to our hearts. Despite being fat, my heart is fine. I once read a study that said Ritalin can suppress growth in chldren, and I wouldn't be surprised if that was true. I'm the shortest of four siblings, and Leslie is a little shorter than either Jim or me.

I think, on the whole, the benefits of Ritalin outway the risks given proper monitoring. Of course when people have any kind of heart condition, don't give it to them. And don't treat Ritalin as a panacea - get counseling (and academic support in addition to the Ritalin for kids). For people using it to be clear-headed because they're on other medications, more power to them. It's that simple.

#83 ::: JC ::: (view all by) ::: February 11, 2006, 05:12 PM:

Most humans exhibit some symptoms of ADD. They're all normal behaviors.

That's what I mean. I'd think that it would make it hard to diagnose because it, barring the extreme cases, it's hard to come up with a bright line that separates those with ADD from those without.

I think I'm being unnecessarily sensitive about this because people meet me and they assume that I'm on Ritalin. (Oddly, people bring this up in conversation. The first time, I didn't even know what Ritalin was.) I apparently behave as if I'm about to bounce off the walls. I honestly have no idea what I do to give that impression.

Actually, that's not quite true. For example, I figured out by the time I hit high school that I think better if I'm moving. It's odd, but some times it's the only way I can keep my mind on whatever it is i'm supposed to be working on so I'm not questioning it. But I can see how that might give the wrong impression.

I end up having to explain that not everyone who despite their best efforts, is disorganized, undisciplined and forgetful has ADD (or some other issue).

BTW, based on your descriptions of hyperfocus and hypofocus, I'm not sure I understand what it means to be just plain focused any more. I mean, it seems pretty normal to me to be able to do something either for about 10-15 minutes or for about 8 hours or so. Either way, the same amount of time goes by but much more work gets done in the latter case. I've managed to stay employed by taking into account that there will be days when I'll be useless. (Being able to work from home is terrific because I can take advantage of those long stretches whenever they pop up. I'd be even happier if I could control them such that they happened at convenient times.)

#84 ::: JC ::: (view all by) ::: February 11, 2006, 05:41 PM:

Oops, I just wanted to add that I didn't mean to say that people with ADD are disorganized, undisciplined or forgetful.

*sigh* and one of the supposed advantages of this media is the ability to edit out one's mistakes so no one else sees them...

#85 ::: afigbee ::: (view all by) ::: February 11, 2006, 05:51 PM:

Really, this is an argument for why all the doctor's right of prescription should be legally eliminated.

In my view all drugs of any kind at all should be available to anyone at any time. What is freedom and responsibility about, anyway? Conservatives keep bellyaching about it, but they don't really seem to mean it.

If some minority of people injure themselves by taking serious drugs they shouldn't be taking without a doctor's advice that's entirely their own problem. Few people will show up in court without a lawyer, and I really think few people will set about a course of some advanced cancer drug without talking to a doctor about it.

The basis of the health care industry is the doctor's right of prescription, and that's the basis of why health care cost is as high as it is. Eliminate that and health care and access to it will normalize as if by themselves because it will no longer be about a closely-held, mystic 'opinion', but market forces.

#86 ::: Christopher Davis ::: (view all by) ::: February 11, 2006, 06:24 PM:

afigbee: I trust the doctors more than the bureaucrats. See the discussion above of PPE and pseudephedrine, both over-the-counter drugs. I do think that having some level of gatekeeping for certain drugs is important; people who demand antibiotics for their viral infections, folks who would just pop statin drugs to lower their cholesterol without getting liver function tests, etc.

(Market forces are what got Vioxx banned; had the ads not pushed patients to demand it from doctors, only the folks who actually needed it would have been on it, and they're the ones who could make a good tradeoff between the cardiac risks of Vioxx and their known inability to take other drugs.)

#87 ::: P J Evans ::: (view all by) ::: February 11, 2006, 08:20 PM:

Personal opinion: it isn't the doctors, it's the advertising of prescription drugs in such a way as to imply that Drugs Fix Problems Easily. Which sometimes is true, but not necessarily the problems that they're pushing drugs for. (I can see drug ads in magazines aimed at doctors, but not for the general population. Whose bright idea was that?)

I met Ritalin once, for a month or two, back in the late sixties. I think it was for depression, but can't remember now: what I do remember is being basically so up I could have flown without a plane. That was more than enough stimulation.

#88 ::: afigbee ::: (view all by) ::: February 11, 2006, 09:49 PM:

I don't trust doctors at all, frankly, but the problem of antibiotics and antibiotic resistance hadn't occurred to me, and you're right, a 100% open system couldn't work.

But I don't think the system should get more closed than 1%.

For things like people dying of Vioxx, really that's the manufacturers fault for advertising it the way they did. If there were no doctors as middlemen, the corporation would be forced to accept direct responsibility if they intentionally misrepresent its application in the way they do in advertising it like that.


Largely eliminating prescription and making most drugs, including currently illegal drugs, freely available would be a serious development, unprecedented anywhere, and, until the dust settles, there would inevitably be a lot of newspaper headlines about people who give themselves horrific injuries and addictions, the way the generation of people who came of age after the repeal of prohibition were the drunkest in recorded history.

But, I think, it is important for so many reasons to get past that. It would be a watershed in self-determination and public responsibility, a genuinely needed thing in an era where so many of the public are able to think Iraq had weapons of mass destruction and that Republicans are patriots.

#89 ::: Chris Clarke ::: (view all by) ::: February 11, 2006, 09:57 PM:

A.J.:

Eyeglasses are a really, really, feckin' good metaphor for ritalin and other ADD drugs. I want to commend you on that metaphor. It checks out perfectly in all the situations I can think of.

Sadly, I can't gloat. I yoinked it from Ned Hallowell, ADD doctor and patient both, and co-author of the only self-help book I've ever found self-helpful.

A risky thing to say in a room full of writers, I know.

And insinuating there might be self-help authors in the room is risky in a room full of SF writers, so I'll just shut up now.

#90 ::: Cynthia Wood ::: (view all by) ::: February 11, 2006, 10:17 PM:

I think Chris Clarke and I went to the same HS (seriously) - not a good place if you have any sort of learning problem. They had amazing high-level classes, but the pressure was unbelievable. Being basically depressive with some ADD-like symptoms that I believe stemmed from the depression, that place was a nightmare. I had a great education, fabulous grades, and prayed every night that I wouldn't wake up in the morning to have to go to school again.

The current trend towards stigmatizing a drug based on a side-effect that is a given for that class of drugs is really disturbing. What's the MD for in most doctors, if not for the training and experience to evaluate the pros and cons of a particular medication in a particular patient?

Sure some schools will push parents into getting their kids an unwarranted dosage. I pulled my eldest out of kindergarten because the administration was pushing so hard for me to get him diagnosed with ADHD - to the point of recommending new and different physicians when our pediatrician wouldn't go along with them. Even with a pushy school, I was well able to prevent them from giving an inappropriate medication to my son. He's in a new school now, and doing very well. It seems the problem was that he didn't want to do a dozen alphabet worksheets every day when he could already read.

I like the eyeglasses metaphor. I squinted for years before I was prescribed glasses because the theory of the time was that glasses would make my eyes lazy. The relief when I could finally see was enormous. I can only imagine what it would feel like if it were my brain, and not my eyes, misbehaving.

#91 ::: crazysoph ::: (view all by) ::: February 12, 2006, 01:37 AM:

Another semi-lurker, adding sympathy re the unremitting pile of crud on the medical front. I'd like to ask the Universe to let Teresa catch a break, a good one, sometime soon. Like, now.

Apart from that, this thread seems to have turned into a teach-in on AD(H)D, and with all those people reading this thread, I'd like to ask a question.

Directed primarily at the people offering their testimonies, I'd like to ask - would you say that there was some non-drug coping strategy, which when employed convinced you that ADD/ADHD was, in fact, the problem? Something by analogy with the perceptable inprovement after the application of Ritalin?

I realize it's a bit tricky, given how difficult all but the most extreme cases are to properly diagnose, but... I figure I'll get a higher quality of information from personal interaction here, than setting out willy-nilly on the nets. (At least at first. Too many of the self-help sites set off my "crank-alert" alarms, and I'm not sure to what level to reset them.)

Many thanks, also for continuing to be a resource for the larger issue, especially in the midst of these crises.

Crazy(which sometimes just seems plain sane)Soph

#92 ::: A. J. Luxton ::: (view all by) ::: February 12, 2006, 02:02 AM:

Jules said: What you're looking at there is somebody who doesn't realise that names of mental disorders are, in general, just labels for people whose brain works slightly differently from the rest of the world. You could just as easily say "clinical depression is just a way of labelling people who are unhappy a lot of the time" or "schizophrenic is just what they call people who see the world in a different way to us".

. . . A good solid thought, that. I'll add to it that I haven't met "the rest of the world" yet, and I imagine that the True Normal Person is somewhere in Rabbitania, having tea with Santa Claus and the Easter Bunny.

Furthermore, if you try to extrapolate an Average Person from all modern and historical examples, you quickly come to the conclusion: The average person deals with their problems by killing other folks and taking their stuff.

My brain is trying at times, but by that standard, I like it better than many.

Two side notes on hyperactivity, which may be interesting and/or helpful to the rest of you OH LOOK! SHINY THING! types:

A study has been done to the effect that if you get ADD kids to sit on balance balls instead of chairs when they're working, a large percentage of them have an easier time concentrating. Makes perfect sense to me, and probably works for adults, too -- it keeps your movement-brain on so the rest of your brain doesn't turn off.

I wasn't diagnosed hyperactive as a kid, weirdly enough -- only became obvious post-puberty. But I think, possibly, that has something to do with the fact that grade school makes you get up and change classrooms every hour or so. My maximum "nonstop sitting period" is slightly shorter than a movie.

A few years ago, I had really bad repetitive stress injuries hanging around in the aftermath of an evil office job I really shouldn't have taken or kept. I was at the point where I thought I'd need CTS surgery, angry and hurt and losing strength in my wrists. But I decided to try one more thing, which was this book, which is full of exercises that actually work and are more complex and weird than they look.

It took two weeks of doing them daily to start noticing anything different at all. At about six months I started noticing a major improvement (which has remained since then. I have mild problems in the winter and almost none in the summer.) That was the point at which I'd gotten in the habit of doing the exercises, and also was working on school remotely -- I had my own schedule and my choice of when to take stretch breaks.

So poinging can be adaptive. If you put yourself in the habit of stretching the right way when you get up and wander around chattering or get a cup of tea or whatever -- the impulse towards movement can be turned into your anti-RSI strategy.

#93 ::: Chris Clarke ::: (view all by) ::: February 12, 2006, 02:14 AM:

Cynthia, I went to Calasanctius in Buffalo.

Soph: would you say that there was some non-drug coping strategy, which when employed convinced you that ADD/ADHD was, in fact, the problem? Something by analogy with the perceptable inprovement after the application of Ritalin?

For me, no. I had coping strategies, for sure, especially finding (1) the right partner and (2) jobs where I had to multitask constantly, but I never really twigged to my ADD until last year, when my equally ADD'led brother-in-law suggested it.

#94 ::: abi ::: (view all by) ::: February 12, 2006, 05:26 AM:

I imagine that the True Normal Person is somewhere in Rabbitania, having tea with Santa Claus and the Easter Bunny.

My brother says something similar, apropos of our heavily Asperger's family (we range from strange and awkward to unlikely to ever hold a job). "The definition of normality is so narrow that your feet bleed when you stand on it."

#95 ::: Epacris ::: (view all by) ::: February 12, 2006, 09:49 AM:

afigbee: I'm a bit puzzled about how the procedure is supposed to go in the 'all-drugs-over-the counter' system. Some years back, for instance, I had to go through many tests and a couple of specialists to diagnose what turned out to be a quite atypical case of a fairly rare & obscure disease.
Once diagnosed, we tried a series of treatments, including different drugs at different doses & regimes, weighing up different possible side-effects (luckily, after months, the tinnitus wore off). Even without the constant nausea, weakness & dizziness, I doubt I'd have the expertise to work all that out, though I was an "involved & active" patient, That's what all the study & 'continuing education' for doctors is for, surely.
[And another cheer for the Oz PBS system, which keeps the drugs affordable here]

Eyeglasses story: a friend's father would not accept that any of his children were less than physically perfect. It wasn't 'til after he died while my friend was in early High School that he could get glasses & actually finally see the blackboard, and read his books. If he weren't very intelligent, I doubt he'd have been able to catch up schoolwork — decades later he's still getting over the emotional/psychological effects

Still wishing as much good karma as possible to the people in trouble here, with tea & sympathy accompanying.

#96 ::: Emily Cartier ::: (view all by) ::: February 12, 2006, 12:20 PM:

Directed primarily at the people offering their testimonies, I'd like to ask - would you say that there was some non-drug coping strategy, which when employed convinced you that ADD/ADHD was, in fact, the problem? Something by analogy with the perceptable inprovement after the application of Ritalin?

When I'm not medicated, I have less than a 50% sucess rate at taking care of repetitive daily tasks. The *best* coping strategies leave me at around 50%. A useful medication lets me get above 50%, sometimes as high as 100%, but usually more like 75-90%. To give you an idea of the magnitude of the problem, I introduce it to doctors with "well I usually remember to eat."

So yeah, I usually remember to eat. Do the dishes? About half the time, which is fine if I have a dishwasher. There's 2 of us, so running the dishwasher every other day is functional. Take medications? Not happening, unless I'm on something that works for ADD and it's one that's relatively long acting. Managing to take a useful dose of antibiotics is a huge struggle. Take breaks from whatever I'm working on? Iffy. Very iffy. I'll only do it reliably if I'm working on my feet and *can't* sit.

A lot of stuff I simply ignore. Me putting something back when I'm done with it just isn't going to happen reliably, unless I manage to notice there's a safety issue. I usually don't leave knives out. An old box can sit around for weeks, waiting patiently for me to remember it should go in the trash.

When I'm medicated appropriately, basic survival stuff stops being a usually and becomes consistent. Stuff that's good to do on a regular basis because it makes life nicer actually happens on a daily basis, or even more often.

(note: I recognize that the current GSM IV classification is ADHD. No-one describes me as hyperactive, so ADD is a more accurate label for me. My brother is correctly described by the ADHD label. They're still hunting around for an appropriate name for this disorder, since it's not defined in an easily testable way. I can easily see future GSM editions splitting it into 2 different disorders, or renaming it again, or throwing up their hands and giving us to the neurologists. Until I'm happy that what's going on is at least as identifiable as depression, I'll go on calling myself ADD, and my brother ADHD :) )

#97 ::: Cornfed ::: (view all by) ::: February 12, 2006, 01:12 PM:

Chris Clarke-
Read your post and had to fight the urge to burst into tears. It was all so wrenchingly familiar. Every year a new system -biGod this'll be the one, this'll fix it ! And at the end of it another pile of calendars, worksheets, guidebooks, organizational systems or whatever the miracle cure was going to be, stacked at the back of the closet like a little cairn of shame.

It must be me. I can't make this work. I can't get my homework done (or if done, turned in), my bills paid (before the phone being dead reminds me I have to), my work assignments completed (without streching a deadline past the breaking strain), I can't act like a normal person I must be Bad. I must be Broken. They tell me I'm smart, they tell me my IQ blows the scale, but smart people don't do this.
Patently.
They. Don't. Do. This.

So I must not be so smart after all. It must be a lie. My whole indentity is a lie. Load that on top of already believing your failures make you A Bad Person and the despair is like a drowning in syrup.

And of course going to the state smart kids school (NCSSM - Any S&M'ers out there? We make it smart) only made it worse.

Even occasional success is tainted by that sneering whisper in the back of the brain "You know this isn't going to last, you -will- fuck it up. You always do."

I've been one of Dexy's daytime runners for a few years now. It's probably not my ideal medication (the jaw clenching, I'm afraid, is doing long-term damage to my teeth and I still have to struggle to get basic tasks done in a timely manner) but before I got insurence it was the cheapest option. Now, because my law school's student health plan doesn't want to "overprescribe a trendy diagnosis" I have to go through yet another full battery of tests to earn the right to something better.
And I've got deadlines looming.

Drugs aren't and shouldn't always be the answer but for some of us it's that or a life that we can't bear to keep on living.

#98 ::: Dave H. ::: (view all by) ::: February 12, 2006, 02:28 PM:

alex:
"Don't worry--Ritalin won't be banned until the patent expires and there are generic comptetitors. And I'm sure Ciba-Geigy will have a much superior product waiting to take its place. If it doesn't work so well for your problem, that's scarcely their fault."

As many have pointed out, it did a long time ago. The much superior product is Focalin, it was approved in 2001, and it's from Celgene, not Ciba-Geigy. Novartis is the licencee and distributor. Focalin, for the curious, is *dextro*methylphenidate. Ritalin is d,l-methylphenidate, and it appears that levomethylphenidate is basically an inert junk chemical, that mostly just increases the liklihood of side effects.

I'm on Focalin now. It's an inferior replacement for pemoline. It has about the same effectiveness, but the SR form doesn't last as long as pemoline (and the non-SR works for about 3 hours), and there's this rebound when it wears off that almost renders me unconscious if I'm not physically active.

I plan on trying Adderall or some other amphetamine-based product next, as I keep looking for a replacement for the pemoline.

#99 ::: Dave H. ::: (view all by) ::: February 12, 2006, 02:37 PM:

A. J. Luxton:
Reading these threads is starting to convince me that I might want to actually see a doctor after all these years. But a part of me is balking. Not necessarily a very rational part. . . .My mother, however, saw me reading on Saturday, asked me to clean my room, and when I wouldn't, came in with a pill and a glass of water, determined to feed it to me so I'd be more tractable.

GO!

You are an adult. Your doctor is _hired_by_you_ to _assist_you_ with your physical and mental health. Just because they prescribe something doesn't mean you have to take it. If you don't like how a drug's changing your behavior, you can stop.

A lot of people with ADD take medication on an 'as needed' basis. They've got a meeting or presentation coming up, or it's a long work day, or this saturday is Cleaning Day, or something. When they need to be more focused, more "get the job done," they take the medication. When they can be more creative, more relaxed, or more energized (whatever their baseline state), they don't.

Along with (or instead of) a prescription, a good psychiatrist provides you with behavioral techniques, coaching, and advice for friends, partners, and loved ones, on how to provide effective support.

GO! The doctor can't make you do anything. But they have an awfully good chance of putting some new tools in your toolkit that you'll wonder how you ever managed without.

#100 ::: Dave H. ::: (view all by) ::: February 12, 2006, 02:46 PM:

Lila:
Again, I'm not saying that Ritalin/Adderall isn't useful, or even vital, for some ADHD patients. What I'm saying is, here we have a patient for whom those drugs failed to do the job, and for whom the school environment made the problem worse instead of better.

Hmm. I can't help but wonder if it wasn't AD(H)D in the first place. But that's not especially relevant. The important implied misconception here is that the drugs EVER "do the job." Medication doesn't work in isolation, it works in an environment.

If you give a nearsighted kid eyeglasses, they'll *probably* figure out on their own that there's now a reason to look at the blackboard. But reading the blackboard is a new behavior they have to adapt. Glasses won't *make* them look at anything. Ritalin et al. makes it easier to 'stay on task,' but if they don't have people around them trying to teach them what to DO with this altered mental state, it won't do a damn bit of good.

I managed to stay undiagnosed until my late 20's because I'd already developed myriad coping mechanisms. Getting medicated meant that suddenly they worked *even better!* Woot!

Put a paraplegic in a motorized wheelchair, and forget to mention where the "on" switch is, or how to recharge it, and you haven't done them much good. Fortunately, most ADD kids get medicated as part of a program that's also explaining to the parents how to guide the kid into developing better study habits, into creating structure that means predictability and this ease of focusing, into all sorts of new time/thought management tools that take advantage of the assist provided by the drugs.

#101 ::: Dave H. ::: (view all by) ::: February 12, 2006, 02:53 PM:

Jules:
As I'm sure I've mentioned here before, I believe myself to suffer mildly from ADHD (although my doctor is resisting the diagnosis on the grounds that I don't exhibit any symptoms of hyperactivity, as if that was all there was to it...) . . . And while I'm hoping an ADHD diagnosis will help me with day to day life, I'm not looking forward to dealing with this consequence of the medication.

Same advice to you as to A. J. Bluntly, you're being silly.

_If_ you get diagnosed with AD(H)D _and_ get a prescription, then you have a chance to decide if the "consequences of the medication" are worth the benefit. If they're not, then you don't take it. If they do, then this concern of yours, in restrospect, will look absurd.

If treatment seems to make your life worse, you stop. If it makes your life better, you win.

The only way to lose is if the drug actually does some kind of permanent or long-term damage to you, and any competent doctor is (a) going to ramp you up really slowly, (b) explain all the possible side-effects and tell you what to watch out for, and (c) take your current medications and conditions into consideration when deciding where to start.

Please do make sure that you've selected a psychiatrist that you're comfortable with before you start treatment, though.

#102 ::: Dave H. ::: (view all by) ::: February 12, 2006, 03:02 PM:

Emily:
I recognize that the current GSM IV classification is ADHD. No-one describes me as hyperactive, so ADD is a more accurate label for me.

I'm with you. I think calling it ADHD is just stupid. It perpetuates the myth that hyperactivity is integral to this condition. Personally, I think the final D is also inappropriate and misleading. The same characteristics that make me late and forgetful are the ones that led to my alma mater selecting me as "Outstanding Recent Alumnus" in 2004, for "Visionary Work in the Arts and Sciences." (They pick one a year. "Recent" means it has to be somebody that graduated in the previous 15 years.)

What I have, thank you very much, is far more accurately labeled Variable Attention Syndrome. I mostly "suffer" from a surfeit, not a deficit, of attention, and calling it a "disorder" fails to acknowledge the benefits. There is no discernable hyperactivity, and never has been.

The GSM has a long history of being wrong, especially with ADD, and I'm certainly not going to encourage them by using their inappropriate designations unless I'm filling out an insurance form or something.

#103 ::: Laurie Mann ::: (view all by) ::: February 12, 2006, 03:23 PM:

Soph, I think part of the problem is that most kids with ADHD (and its various related conditions) are less able to focus (or are "hyperfocusing" on something else) and tend to be very, very reactive without really thinking throught the consequences. Ritalin an help those things, but it isn't a panacea.

I still, at the advanced age of 49, have a bad temper. Seriously. I tend to sit on my hands a lot of time. But that might not always be te best thing to do.

Recently I got a job that I thought I might like, so I tried to ignore my boss as he increasingly behaved like a jerk (it was a tiny office, so it was impossible to ignore the owner). After one particularly stupid moment, I wrote a terse "I quit" E-mail and walked.

Was that the smartest thing in the world for me to do? No. Did I care? Somewhat, but between being bad-tempered and not sleeping, I knew that job was a really, really unhealthy situation for me.

At least I didn't hit him (or vice versa).

#104 ::: A. J. Luxton ::: (view all by) ::: February 12, 2006, 03:23 PM:

Dave H: The other great reason I haven't gotten around to it is that my health care provider is one of those blanket insurance/hospital corporations, the kind that when you develop carpal tunnel says "We can prescribe you some ibuprofen", and when you ask if they can prescribe you ten vicodin a year for occasional but nasty migraines, says "Well, we have this program where we prescribe (one kind of OTC medication that doesn't work) and then we go to (another) and then you get to take a headache management class . . ."

I'm not sure they wouldn't dismiss me with a day planner, or prescribe what was prescribed before, without attention to actual desired results. I am more likely to wait until I can get better health care.

#105 ::: Dave H. ::: (view all by) ::: February 12, 2006, 04:05 PM:

Cornfed:
It was all so wrenchingly familiar. Every year a new system . . . And at the end of it another pile of calendars, worksheets, guidebooks, organizational systems or whatever . . . stacked at the back of the closet like a little cairn of shame.

* * *

Yup.

I was fascinated to discover that, in fact, I was the most valuable resource any of my friends could have for advice on time management and being organized. They kept coming to me with things they thought might help: "Try associating things to remember with rooms of your house" or How to Prioritize a To-Do list, or Why A Palm Would Change My Life.

And I'd explain that the room method had certain limitations that were generally better addressed by using zoo animals or musical tunes, that they'd probably get better results including incongruent juxtaposition when they did this; that a far more powerful tool for To-Do lists involved understanding and applying the difference between Urgent and Important, and they should consider changing their system; that I'd owned a PDA before USRobotics had even created the first PalmPilot, and that I found the current tools still (!!!) inferior to my Newton for my needs, and even the Newton was gathering dust now because I spend all my time at home and a PDA isn't useful unless I'm moving around too much to use my laptop for those functions.

In short, I knew a hell of a lot more about how to be organized than anybody else I know. "So how come you're always forgetting stuff/losing things/blah blah blah?"

Wrong question. "How come you aren't *always* forgetting things/losing stuff/missing appointments/not doing homework/forgetting to eat?" "Because I've evaluated a thousand different schemes for being organized, and I use the ones that work for me in order to merely be as scattered as I am now, instead of being way worse." Given just how exasperating I know I was, the fact that they managed to push me toward getting that stuff done while never making me feel like a loser, and going to no small effort to help me find ways to do what I needed to do while wholeheartedly supporting me in efforts to avoid what wasn't really necessary, I find quite remarkable. They could have been so much worse in so many ways, and I know that there are lots of other people who weren't anywhere near as lucky as I.

A business associate once recommended an organizational executive coach to me. Said coach came over to my house (we were, and still are, working from home), and had me take her on a tour of my stuff. My financial stuff in envelopes by month, and the big stack waiting to be filed. My pantry, organized by type of food, with new cans in back, old in front. My color-coded filing cabinet, and the piles and piles of unfiled stuff.

She told me that normally, she was dealing with an exec who was feeling overwhelmed because their usually half-assed system, which had been adequate to their needs before, was failing under their new bigger load, and all she had to do was teach them a few new tricks and they were good to go. She had some good advice for my filing cabinets, but mostly, she said "You really do just need an assistant who can maintain the systems you've already established."

Reject the shame implicit in that cairn, Cornfed. You're being fooled by snake-oil salesmen into believing that their under-powered consumer-grade planner/organizer is The Best Ever, and that it's your fault if it's not working.

Not only are most of the "systems" out there poorly designed, but they're also targeted to people who are, for the most part, not *especially* intelligent, and mentally linear. The mental path of least resistance is playing back a known procedure; running down a list of steps. Repetition is comfortable.

This is a fine thing, in and of itself. The mail arrives, and you check who it's for. You open this kind and stamp it with the date and put it in an interoffice envelope and address it and set it here. That kind you forward unopened to there. This kind you throw away. That kind you evaluate, and forward if it's relevant. Put a process-oriented thinker to that task and they'll get it done quickly and accurately. Me, I'd be in Hell.

I know that I will NOT have a task organizational system that *mostly* works until I can afford to have a part-time assistant again. Until then, my best system is to change what system I'm using every couple of months, to keep it fresh and clear the gunk that the previous one will have collected. And they're always custom-designed, because the kind of people who make planning systems are apparently the kind that could never even wrap their head around the way mine actually works, and their schemes play to my weaknesses with a vengeance.

I don't blame my friends for having failed to grow tall enough to get glasses off the upper shelf in my kitchen cabinet. I just get it for them or expect them to use a stool. "You can't reach that glass? Well, *I* have no trouble reaching the glass. I guess you're just not trying hard enough. Apply yourself. Grow some more. Stretch farther. Quit being so lazy."

Did I forget your birthday this year? Too fucking bad. I'll remember to send you a gift on your birthday when you can get the glass off my cabinet shelf unaided. You need a stool? I need Ritalin/pemoline/whatever. Still can't reach the very top shelf? Right. I can't clean my house, either, even with medication. The tedium and monotony put that task beyond my reach. Period.

I thank God that I have fantastic parents; they were frustrated that I wouldn't "apply" myself, but it was more "we know you're smart, but it's important to *do* the homework. Yes, we understand that it seems like busywork, but sometimes you just need to do stuff you don't like to do."

I'm sure I'll spend the rest of my life trying to deal with inappropriate guilt; feeling badly because I didn't manage to do something that thought I could, because it's obviously easy: everybody else can do it without any problem. Thinking Different isn't obvious to the eye like being short or tall is, but it's just as unreasonable to blame somebody for not thinking the way you do as it is to blame them for not being the same height as you.

People will keep doing it, of course. Get used to that. Expect to spend the rest of your life with the envious, the morons, and the ignorant saying stupid, cruel things. Pity their narrow minds. But reject the guilt they're trying to give you because of their own inadequate ability to understand. And take the time to educate the well-meaning fools who are trying to "help." Those of us who Think Different, who lie on the edge of the bell curve, are a very valuable resource. The great majority's brains won't ever give them these thoughts, this artwork, this poetry, these scientific breakthroughs, these insights, these observations. The world *needs* the outlying thinkers, even though they don't understand them.

Most of them never will. But most of them are nice people, nonetheless, and if those that sincerely want to help learn what *is* helpful and what *isn't,* how to take advantage of your unique talents, skills, and style of thinking and how to *not* play to your weaknesses, we all end up much better off.

Every time you ('you' as in "all y'all") correct somebody's delusion that "there's no such thing as ADD" or point out that just because they can easily remember appointments doesn't mean everybody can, or reinforce the meme that we're not all the same inside our skulls any more than we are outside, you help everybody. You help yourself, your friends, and the world, by making it easier for people who live on the fringes of human thought to spend more time *there,* thinking the things that are easy for them and hard for the rest of us, and less time struggling to deal with the kinds of thought are such well-trodden ground.

Man. I feel like I'm just getting started, but I think it's time to pry my attention from the interesting task of commenting on blogs, and try to actually get something knocked off my To Do list for today.

Y'all are smart enough; you know what I'm saying.

#106 ::: Dave H. ::: (view all by) ::: February 12, 2006, 04:15 PM:

A.J. says:
The other great reason I haven't gotten around to it is that my health care provider is one of those blanket insurance/hospital corporations,

That's a good reason. Good health care starts with you shopping around until you find a doctor you like. If you can't find one within your current insurance structure, you have to decide whether or not to go outside, do without, or try to move to a different insurance program.

When I first went in for diagnosis, my coverage specifically excluded mental health. The psychiatrist was concerned. "You understand that it might cost up to $2000 to get a diagnosis?" "Yes." "We tried billing your insurance, but they don't cover it." "Yes, I told you they wouldn't when I first came in. If this process results in me being able to manage my life a little better, I'll easily make up that $2,000, never mind the fact I'll be a lot happier."

Out of pocket Cylert was nearly $100/month. For the difference it made in my life, $500/month wouldn't have been too much. Doesn't mean I wasn't thrilled to pieces when we found a way to get the medication covered by insurance.

Now, I was fortunate that I could *afford* those expenses at that time. Now, even $100/month extra is going to be dicey, which is why, although Focalin is working for me, I'm going to definitely try some alternatives. If plain Ritalin or Adderall or Dexedrine can work, I'll have to weigh possible lesser effectiveness or lesser convenience against the financial strain. Everybody's got to make that call.

But damn those sanctimonious bastards who would try to "help" me by preventing me from having a choice.


Good luck.

#107 ::: Marilee ::: (view all by) ::: February 12, 2006, 05:11 PM:

Dave H: Put a paraplegic in a motorized wheelchair, and forget to mention where the "on" switch is, or how to recharge it, and you haven't done them much good.

Paraplegics aren't idiots. The switches and recharge ports are pretty obvious.

#108 ::: Cynthia Wood ::: (view all by) ::: February 12, 2006, 06:40 PM:

Ah - not the same HS then Chris. I went to Brighton in Rochester. They sound very similar in outlook though.

Cornfed that's exactly it. If I was as smart as everyone said I was, but I still couldn't do x, then the only answers I knew were a) I either wasn't that smart, or b) I was lazy/crazy/deficient, I.e. some moral failing. I knew I was smart, so I decided that I had some great moral failing - which helped oh so much with the depression I was already dealing with. That I was being offered a false dichotomy never occurred to me.

#109 ::: afigbee ::: (view all by) ::: February 12, 2006, 07:02 PM:

Epacris,

I don't mean to do away with the medical profession! Just the right of prescription. I would strongly urge anyone going in to court to get a lawyer, and I would strongly urge anyone with a medical question to see a doctor about it before doing anything rash, like trying to diagnose themselves.

It's simply that I think in a free society, freedom should be maximalized and that the problem with health care in the US boils down to the monopoly on prescription held by those few people with the money to pay for a medical license.

Theresa's case highlights the whole issue pretty clearly.

#110 ::: Lis Riba ::: (view all by) ::: February 12, 2006, 07:05 PM:

I think calling it ADHD is just stupid. It perpetuates the myth that hyperactivity is integral to this condition. Personally, I think the final D is also inappropriate and misleading.

In the early 1990s, when Adult ADHD was first gaining notice, I used to say that a better description would be Attention Inconsistency Disorder, but unfortunately, another ailment beat it to the AIDs acronym.

#111 ::: Lizzy L ::: (view all by) ::: February 12, 2006, 08:23 PM:

Perhaps this isn't the best place for it, but since we are discussing drugs; does anyone have experience with beta-blockers, especially positive experience, that they would be comfortable sharing? I just got put on 1/2 25 mg tab of Lopressor (Metoprolol) morning and evening, and it's dropping my BP too low for my comfort level (89/70 this morning.) Can't take Atenolol -- allergic. If anyone wants to e-mail me privately rather than let my question hijack this thread, I'd be pleased. Thanks.

#112 ::: Chris Clarke ::: (view all by) ::: February 12, 2006, 10:06 PM:

The other great reason I haven't gotten around to it is that my health care provider is one of those blanket insurance/hospital corporations,

Not that they aren't just as evil as anyone else, but let me recount my experience with Kaiser Permanente in the last few months:

1) I self-diagnose, then call the pshrinkology department at Kaiser in Richmond, CA for an appointment with the MCSW I saw about some family stuff a coule years back to explore further. I get an appointment within a month.

2) Two days before the appointment, not having received a reminder card, I call to confirm the time and find out that I remembered the date wrong and my appointment was yesterday. Oops. The phone clerk decides it was Kaiser's fault for not sending a reminder card - sensible, given the reason for appointment - and prioritizes me for the next open appointment, three weeks later.

3) I get a reminder card. I go meet another MCSW, who - after I lie on the intake form so that they don't lock me up, because who in his right mind has never ever thought of suicide? - interviews me without me pushing the self-diagnosis too hard, and tentatively confirms that self-diagnosis. She schedules me an appointment with the psychiatrist to confirm and prescribe, and says what is likely the most helpful thing anyone has told me in my life: "that behavior mod approach? It never works without the drugs, in my experience."

4) Two weeks later I see the psychiatrist. He asks the same set of questions, only in more detail.

5) I start eating Wellbutrin the next day.

I still have offered options should the bupropion not pan out. The facility in Oakland has an ADD specialist psychiatrist with more detailed questionaire templates and tests.

I have a relatively lush service level at Kaiser due to my wife's union teaching job - five bucks co-pay for three months worth of Wellbutrin, and I'm not taking that for granted - but that doesn't affect the appointment service, which though pokier than I might have liked, was relatively humane and efficient and lacked bullshit. Your Mileage May Vary, of course. But hey: it's a datum.

#113 ::: Lexica ::: (view all by) ::: February 13, 2006, 12:42 PM:

Kaiser psych dept, arrgh. The latest thing that's griping me about them: okay, you are the psychiatry department. Your patients are already presumed to be less than 100% stable, or they wouldn't be coming in to see you. When one of said patients calls in January to say "I need to see my psych for a medication review," it might be a good idea to ask what the problem is before saying "we're currently booking for May." If the problem is "the antidepressant is causing dry mouth and it's annoying," May might be fine. If the problem is "I'm on the maximum dose of my antidepressant and I'm still feeling suicidal several times a week," May is most emphatically NOT fine.

And I don't want to wrench the thread off track, but since I'm sure there are people struggling with depression who are reading this thread, a public service announcement: if you're a woman with depression and you're also taking birth control pills, PLEASE read up on the latest research about BCP and mood disorders. There's more and more evidence coming out that supports the idea that hormonal birth control methods significantly increase the risk of depression for many women. A good place to start reading is http://www.aphroditewomenshealth.com/.

#114 ::: Marilee ::: (view all by) ::: February 13, 2006, 08:43 PM:

My experience with Kaiser psych is that here, they only make appts two weeks ahead, so they referred me out to the local health system. I saw the psych first last Monday and he seemed much more interested in my lousy childhood than in getting me new meds so I was worried about today, but it wasn't that bad. He's sending my primary a note with a couple of meds he thinks I should try (actually, decreasing the Prozac and/or adding Cymbalta) and that I should see a very bright therapist to deal with the childhood and being so sick.

Because of this thread, I asked him if he thought I had ADHD and he said, no, I was just very smart and talked and thought very fast.

#115 ::: A. J. Luxton ::: (view all by) ::: February 13, 2006, 10:03 PM:

Oh, hey: while we're doing the ADHD support group here, I'll mention that I was inspired by all this to go out and get some grapeseed extract, which is touted by various people as an ADHD-helper and costs not very much at Trader Joe's. I tried it once before when I was in a general self-help and took it sort of randomly, and did notice a small difference, but I was preoccupied in dealing with RSI as well; this time I'll be making more careful observations.

I'll post results here or on my blog, in the next couple of weeks.

#116 ::: Kat Meltzer ::: (view all by) ::: February 13, 2006, 11:59 PM:

I popped off a link which may be incorrect (as well as ineptly popped off). This was done partly in my haste to join the cool kids, and in part because I am in a few neuro-potholes of my own at the moment. Mea culpa.

So many good people, so health horror stories. I worked as an educator/flunkie in Nursing Education for many years (not a nurse, just a go-to geek who had to prove to every new administration why a mere non-nurse should be allowed to teach and do stuff). I finally bailed in 2004. I promise you: healthcare is only going to become more and more like wading hip-deep in snot, at least until the next ice age or so. Blame managed care, big pharma, new age weirdos, poor schools, right-wing godbotherers. In the meantime, we all need to keep ourselves healthy and as close to what passes for sane as possible. There is no fighting the good fight when one cannot wake up, concentrate, or in my case stop crying or hold a pen.

Mr. MacDonald has emphasized in other threads the importance of having a written version of your clinical history (symptoms, treatments, hospitalizations, from first onset to the present) and your medication history (drugs, dosages, dates begun and discontinued, efficacy, side effects and interactions. Copies to all your docs, charts, and loved ones, spouses, next o' kin, etc.

Ms. Nielsen Hayden in another thread has discussed the importance of making a friend of your pharmacist. As federal regs get weirder and more restrictive, this relationship is even more important.

Docs get most of their drug info from drug reps, and there's never enough time to stay current. Your pharmacist can suggest an off-label use for a drug that your doctor may not be familiar with. She can make a case for why you should be on a drug you want to try, when you yourself haven't been able to convince your doc.

She can request drugs that are problematic if you ask for them. If you have chronic pain and your doc is reluctant to prescribe what you need, he may not necessarily be an uncaring shmuck. He might be under serious pressure not to prescribe meds like Vicodin and Oxycodone because asking for pain pills is typical drug abuse behavior. And chronic pain patients apparently prefer to indicate their desires through mime?

Anyway, if the pharmacist asks, you are more likely to get what you need with sufficient refills.

A new twist: some docs now charge if you call and ask them for refills, but not if the pharmacist calls them. That will change too, but enjoy it while it lasts.

New drug? When you drop off the script, ask the pharmacist some questions:

How will this drug interact with other drugs I take?

Are there any foods, liquids, over-the-counter drugs I should stay away from?

Is my supply of this drug limited by my insurance plan? If this drug work well for me, what needs to happen to override that limit?

Does this drug require a prior authorization from my insurance? If it does, will you please call my doctor now - no problem, I'll be happy to wait - and give his secretary the insurance company phone number that he needs to call to give the authorization? Thanks so much. When should I call you to check in?

Re drugs that require prior authorization, also require authorization for dosage changes.

And of course, in light of the whole pemoline debacle, ask your pharmacist: are any of my meds in danger of being banned? No? So, just as idle conversation, um, which ones are?

Finally, here are two resources that may be of some use:

Drug Digest is a thorough reference of general health conditions, treatments, drugs and supplements.
Crazy Meds is a great resource for off-label uses and for people with interesting brains who require neurococktails.

Please forgive the overly long post. Much love to my comrades among the differently-wired and the neurotransmitterly-challenged.

#117 ::: Nicole J. LeBoeuf-Little ::: (view all by) ::: February 14, 2006, 02:33 AM:

About the shitlist lady: You know, it never occurred to me that she was being protective of her kids. My husband's explanation is, she's had friends who were misdiagnosed and overprescribed, and she deeply distrusts psychiatrists. Of course, she deeply distrusts women, too, because apparently women who are married to her friends won't conveniently stop existing when she starts feeling threatened by the marriage. But I digress. Yes, I guess she probably did feel threatened by the term, as though the term itself were an indictment of someone's personality. But it seems that in reality, the diagnosis hits many sufferers as permission to stop blaming themselves. "I'm not stupid/lazy/incompetent! Wow."

About ADHD getting in the way of ADHD coping mechanisms: Oh, yes. The many, many datebook and planners my husband has gone through. The many, many notes I would make him write in it. And all the many times the notes went unread and the scheduled items went missed. The T-Mobile Sidekick seems to be helping him; you schedule things while you're thinking about it, and then you can forget about it until the chime goes off.... as long as you don't silence the chime automatically without looking at it, or say, "I don't have time to deal with that right now," and hit OK, and never think about it again. But the Sidekick still has something the dayplanners don't. It's SHINY. His reminders are SHINY. They're shiny and they jingle and they buzz. He's putting distractions to work as a force for good! Go go go!

I have been guilty in the past of a lot of the inflicted guilt, without even meaning to. It took me forever to realize exactly what y'all have been saying here: Things that are easy for me are not necessarily easy for someone else. Now, there are plenty mental tasks I'm not so sharp at, but I've got a darn good memory, and I'm an extremely verbal person. The amount of arguments we have had because I cqkldn't understand why he couldn't just put his thoughts into words or remember something we were talking about two minutes ago... Yeah. I hope, I dearly hope, I'm getting better at being a supportive wife and friend, because I know I've done a lot of damage already, and that's the opposite effect I ought to be having.

Thanks, y'all, for all these posts about what it's like. The amount of "a-ha!" moments I've had reading them ("A-ha! Balancing ball! Constant motion! Now I understand!") is just extraodinary. Thank you, thank you, thank you.

#118 ::: Garrett Fitzgerald ::: (view all by) ::: February 14, 2006, 05:23 PM:

I have a recent data point on ADHD. I was diagnosed with ADD a year back (or so), and started taking Strattera. I wish I had looked into this in college, but I had been heavily indoctrinated with "he's not ADD, he's gifted". I was able to slide through high school easily, but I just got out of college by the skin of my teeth, and spent a lot of the next decade being either out of work or close to it.

In any case, once I accepted the diagnosis for myself, I was willing to look at it as a possibility for my younger daughter. I was concerned that it would be a case of "I think my daughter has ADD" - "Here's your Ritalin prescription, bye", but our pediatrician gave us a referral to a local psychologist who ran her through the WISC test. In abstract reasoning, she scored in the 99th percentile -- but when it came to digit sequences and ordering pictures to tell a story, she was scoring in the single digits. He explained to us that the Arithmetic, Coding, Information, and Digit Span scores were correlated well with a diagnosis of ADHD, so recommended that we start treating her, and told us about treatment options. Our pediatrician gave us a prescription for Concerta, so we're giving that a try. She's only been taking the Concerta for a few days, so we don't know if there will be a long-term benefit. However, the second day, she said "I don't think this is helping me think about things first." I think that the awareness to make this statement means that it's actually starting to work after all.

#119 ::: Garrett Fitzgerald ::: (view all by) ::: February 14, 2006, 05:26 PM:

Re: Chris Clarke's comment about behavior mod without drugs not working -- our psychologist agreed with that, and pointed out studies that supported the theory.

#120 ::: Chris Clarke ::: (view all by) ::: February 14, 2006, 11:20 PM:

I have been guilty in the past of a lot of the inflicted guilt, without even meaning to

Heh. We can't be easy to live with, Nicole. Sounds like you're doing good.

#121 ::: mangala ::: (view all by) ::: February 16, 2006, 10:11 PM:

Garrett Fitzgerald: She's only been taking the Concerta for a few days, so we don't know if there will be a long-term benefit. However, the second day, she said "I don't think this is helping me think about things first." I think that the awareness to make this statement means that it's actually starting to work after all.

My little brother was put on Concerta this year; although he's nearly through high school, and I think the medication may have come too late in some ways (it's tough to make up three years in the remaining one), it definitely made a difference in his ability to pay attention in school. According to my mom, his teachers finally started to notice that he's an intelligent kid, and that in itself makes a difference. Hopefully it works out for your daughter.

#122 ::: Nicole J. LeBoeuf-Little ::: (view all by) ::: February 17, 2006, 03:53 PM:

Heh. We can't be easy to live with, Nicole. Sounds like you're doing good.

Well, I'm not all that easy to live with either, so, y'know. We've all got our quirks and prickles, not all of which have handy labels and potential solutions. Hubby gets lots of credit for putting up with me.

Further conversation with him that this thread sparked: He says that his main reason in not wanting to see a psychiatrist or to be put on medication is that he feels like these steps would be a way of admitting defeat. I can sympathize with that--I seriously felt that way about admitting that I'd developed myopia and having to wear glasses. And that's an even less rational situation for feeling as though one ought to be able to beat it unaided. But still, I worry. Especially considering all the posts here about the ultimate ineffectiveness of notes and other coping strategies. I hate watching helplessly while someone I love sets himself up not only for a fall but also for hating themselves over having fallen.

#123 ::: Ken ::: (view all by) ::: February 17, 2006, 04:18 PM:

I'll add my voice to the sentiment that people should usually be left to make their own choices, even if they might hurt themselves, and that most people will seek expert advice when they need it without being forced to.

There's more research and development to be done throughout the medical field, and inserting a "Mother May I" into every step is a good way to drastically slow it down and leave our kids at the mercy of the slings and arrows of outrageous fortune without the tools they otherwise could have. And leaves us still doomed to a nasty, painful, lingering death in less than a century.

I wish I had a few more choices. Ritalin is okay... although when I take enough to really get my work done, I'm awakened by a racing heart in the middle of the night. Strattera also helps... but taking enough to be mostly functional provokes "sexual side effects". Taking both together, at doses low enough to avoid these nasty side-effects, has some benefit but still leaves me short of normal functioning ability. I haven't tried adderal yet, but it's another stimulant, so I'm not expecting any dramatic differences. There's bound to be a drug that'll get me going on all cylinders; I hope I live to see it invented and marketed and somehow get past the F(n)DA.

#124 ::: abi ::: (view all by) ::: February 18, 2006, 01:29 PM:

I wish there were a thread like this full of Aspies and near-Aspies.

I just had a panic attack (full-on, with hyperverntilation and sweating palms) about having lost something that I knew was right here just a few minutes ago. It's partly overspill from yesterday, when I had to masquerade as Suburban Mother at a kids' birthday party, knowing I am gauche, knowing I miss signals, and totally unable to change that. Now my in-laws are over for the night (mercifully, they didn't witness the panic attack), and I dread doing something oafish and awkward. I feel like a cat at a dog convention, all day, every day.

Sometimes I just hate being myself. Sometimes the gifts that come with being me aren't worth the price.

Nicole's last line particularly hits home: I hate watching helplessly while someone I love sets himself up not only for a fall but also for hating themselves over having fallen.

Nicole, sometimes what those of us on the flat ends of the bell curve need is someone to disagree with us when we hate ourselves. It may not seem like much to you, in comparison to making him not fall or making him not blame himself, but it is invaluable to have that kind of support.

#125 ::: abi ::: (view all by) ::: February 18, 2006, 01:37 PM:

On a less fraught note, this week's New Scientist has an article on drugs to control sleep - both to put people to sleep and to keep them awake. It highlights someone who uses modafinil to keep going on 4 or 5 hours' sleep.

Paragraph that stood out:
...it's clear that modafinil is becoming a lifestyle drug for people like Yves who want off-the-peg wakefulness. "At first I got it from a friend, and then I got diagnosed as a narcoleptic online," says Yves.

The article says that there aren't many side effects from modafinil. Still, I wonder if something will turn up, and if modafinil-dependent narcoleptics will find themselves in the same straits as the Ritalin and pemoline users here.

#126 ::: bryan ::: (view all by) ::: February 18, 2006, 02:11 PM:

how does one get diagnosed as a narcoleptic online?

#127 ::: Stefan Jones ::: (view all by) ::: February 18, 2006, 02:13 PM:

"how does one get diagnosed as a narcoleptic online?"

That sounds like the setup for a joke I'll tastefully not supply a punchline for.

#128 ::: Bryan ::: (view all by) ::: February 18, 2006, 04:52 PM:

when you say tastefully this implies that the joke is especially tasteless, not just somewhat distasteful. I like to think I'm as filthy as the next person, but I can't think of anything that could be the punchline. So what is it?

#129 ::: Stefan Jones ::: (view all by) ::: February 18, 2006, 07:28 PM:

The punchline would have consisted of pressing my nose and forehead against the keyboard, as might happen if someone nodded off in front of the screen, but the results weren't anywhere as near as spectacular as I'd fgvtrbvgnhb nh

#130 ::: P J Evans ::: (view all by) ::: February 18, 2006, 09:35 PM:

I ran across a story - I think it was at Time online - about the FDA and Ritalin. Seems they didn't actually intend to black-box-label it; it was caused by the same guy who got Vioxx shut down. Apparently there were enough reports of heart attacks to get his attention. I'm curious about the circumstances of said heart attacks: what else were they using, were they using Ritalin as prescribed or were they winging it, were there physical conditions that should have been noticed, and so on. Not that I'm going to get answers, you understand. It's just that in the real world (as opposed to the world of academics) things are not usually that clear-cut.

#131 ::: Bryan ::: (view all by) ::: February 20, 2006, 09:24 AM:

The thing about being diagnosed online, I suppose this is how all the various online companies that sell things between different countries that are on those countries controlled lists manage to not get shut down, not get their customers arrested. I still can't see how it works though. I would suppose that if you got something sent to country X that country X did not allow that you would get busted pretty quickly because they would be watching any package sent from www.goodchemicalsforyou.com pretty heavily.

#132 ::: Nancy C ::: (view all by) ::: February 22, 2006, 02:54 PM:

Two links of interest from yesterday's Science Times somewhat related to the pemoline problem:

One describing the heart risks associated with stimulants used to treat ADD

The other about the FDA allowing some clinical trial patients to go back on a drug that needs a black box warning.

For the latter, they added a second day of hearings about it, because so many patients wanted to testify...

#133 ::: bryan ::: (view all by) ::: February 26, 2006, 01:49 PM:

actually I decided to order some Adrafinil recently because I've got a serious problem with lack of energy for the last couple months, just always worn out. probably overwork but its not going away. Not sure what things to try for that situation, the doctor wasn't much help, so I guess I'm gonna need to experiment.

#134 ::: P J Evans sees possible comment spam ::: (view all by) ::: March 21, 2006, 02:11 PM:

or maybe just not knowing how to put his stuff in unobtrusively

#135 ::: P J Evans ::: (view all by) ::: March 21, 2006, 05:48 PM:

And today's real news via CNN:
More adults using ADHD drugs, fewer young kids

[snip]

In February, a Food and Drug Administration advisory panel called for a strong "black-box" warning on ADHD medicines, saying they might increase the chances of cardiovascular problems in some patients. The FDA says it does not yet know if reports of sudden deaths, heart attacks and strokes are related to the drugs.

On Wednesday, a different FDA advisory panel is set to review data on a possible link between ADHD therapies and heart problems, as well as psychiatric problems such as hallucinations in children.

The FDA will consider the input from the panels before deciding whether to update warnings on the drug labels.

#136 ::: Nancy C ::: (view all by) ::: March 21, 2006, 07:29 PM:

One of the people involved with that black box warning is at the university I'm at, if anyone wants more info, I can dig it out (maybe).

#137 ::: Sharon ::: (view all by) ::: July 10, 2006, 07:38 PM:

I am really so sick and tired of this controvery thing about whether or not ADHD really exists or not and about whether or not kids should be given medication for ADHD.

I was diagnosed with ADHD and let me tell you, it is real. Very real. I went through hell because I couldnt pay attention, couldnt refrain from being impulsive, etc. And, a few years ago I read all this Cr@p about how ADHD isnt real, or how it doesnt need to be treated with medication. (maybe thats the case for people who have super mild ADHD!) but...in my case, when I got off the medication, my life started to fall apart. But I was still in denial, and it took sevearl major setbacks for me to realize that what you dumb @ss people say about how it isnt real...well it's all B.S. Live my life and say that it isnt real! I'm so tired of telling someone, "yeah, I had a real difficult time growing up because I had ADHD" and then they say "oh, I dont think its real, it's caused by watching too much TV." HUh? And to say that people with ADHD just are lazy and dont get enough discpline...well let me enlighten you...the more discpline I got, the worse I became. Because, when you can't control something (as in your actions) and you get punished for something out of your control, in a sense its a bit like abuse. Sometimes, I used to wish I was physcially crippled instead of having ADHD. (btw, my medication didnt work very well when I was a kid). If I were crippled and in a wheel chair, at least I wouldnt get yelled at or punished for not being able to walk like everyone else.

Also, there has been SO MUCh research on this topic, that the fact that some people still think its not real shows how stupid some people can be. I guess thats why some people still believe in UFO's and fairy's, or other things that cannot be verified as reality. People want to believe what they want to believe, despite reality. And who wants to believe that kids with ADHD really arn't in control of themselves? It's easier to demonize them!

Whether or not its over-diagnosed... I dont know. It may be an issue of where the line is drawn, or it may have sevearl charactoristics of other disorders. However, stuff like diet changes and such... I learned that, from one of my classes, it can help everyone with problems like concentration and stuff. But if someone has mild ADHD, it can help them function normally.

Teachers are not pushing kids on pills. I have talked to teachers who dont even believe ADHD is real. Besides, both parents and kids will do what they can do to make sure kids dont get ADHD medication, in part thanks to the media. If anything, parents are being told to not give their kids medication (even if its needed) because something "natural" will help them. What about depression? Or Bipolar disorder? or schzioprhenia? Do you guys think that teenagers or young adults who have those disorders should try to "change their diet" to fix the problem? What a naive and stupid suggestion, especially for people with severe ADHD (or mental disorders). People with severe ADHD (like me) start to feel really bad, whenever they hear that it isnt a real disorder and they should just suck it up and work harder. (as if we havent been doing that.) Besides, if the medication is not right for a kid, it is usually quite obvious to the doctor. So why not leave this debate to doctors instead of people who think it isnt real because they themselves are able to just do things that ADHD indivduals can't?

ok, thats the end of it. But seriously, I am pissed off at people that dont think its real. I think your causeing more harm than good. No duh, a kid isnt going to be on a medication that isnt needed, because no duh, it wouldnt be good for him or her in such a case.

If everyone thinks there are higher incidences of ADHD now than before, maybe we should just wonder if it has to do with something else... such as, the decrease in physical activity (which for someone with ADHD, can often seriously mask or get rid of the symtoms)...or how about the increased amount of expectations that parents have of all kids, thus making those with ADHD more obvious? Or how about the fact that, it has been speculated that many people who are in jail now have ADHD, or had it as a kid? (i.e. impulse control problems). Also, its the same with drug addicts... theres a high rate of correlation between untreated kids with ADHD and drug abuse. Guess what? Kids may be trying to self medicate, and end up frying their brains instead. I suspect that thats what my Dad did when he took speed or something like that to help get him through college. Get real, its always been around. It's just that in the past, it didnt really matter because society's expectations weren't so high... kids werent forced to sit in classes rooms for so long, so it didnt matter if one kid was super hyperactive and another wasn't. Kids used to work on farms more often than not, decades and decades ago! Now more kids go to college than ever before.

So stop saying it doesnt exist. Meet an kid with SEVERE and OBVIOUS ADHD and you will know...it doesnt.

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