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April 8, 2005

Neurological update
Posted by Teresa at 07:35 AM *

Big relief: I have a new neurologist, and am once again receiving my old standard medications. They haven’t been working as well as they have in the past, but this is still an improvement, because for a while there I wasn’t getting any at all.

So far, the new doctor seems like a good guy. Here’s a first: he’s funny. You’d think more neurologists would have a sense of humor, but they don’t, so this one’s a find. He and I also exchanged words about my previous neurologist, which was very reassuring.

As part of this change of administration, I’m going to have to do an overnight sleep study next week and another a month later. That’s normal. Whenever I get a new neurologist, I know I’m going to spend some time in a sleep lab with electrodes stuck to every available surface. The good part here is that unlike some sleep tests, these won’t require that I go off all my medications for two weeks.

We’ll look at the test results and go onward from there. This is all very reasonable.

Another reason for optimism is that I think this guy might actually understand my basic position: that in spite of the fact that I have a seriously gaudy case of cataplexy (if you surprise me with a joke, I’ll fall down like a puppet whose strings have been cut), cataplexy is not my biggest concern. I laugh, I fall over, I get back up again: no big deal, except that it sometimes upsets other people, and so far they’ve all survived the shock. I’ll take that any day over the available anti-cataplectic drugs, which render me stunned, forgetful, and mildly incoherent. I don’t think the idea is that they prevent cataplexy by making me so stupid I can’t catch the jokes, but that’s how it works out.

I’ll never forget bowling a strike at a big narcolepsy support group meeting by getting all the medical professionals in the room to drop their jaws simultaneously. I did this by saying “I’d rather fall over.” I explained to them that without anti-cataplectic drugs I had a life, albeit one that intermittently involved falling over; but that when I was on those drugs, I really didn’t have a life at all. I thought this was a reasonable viewpoint, but explaining it didn’t make them stop looking at me as though I were an alien.

I don’t know. Maybe I’m unusually shameless about falling over. The way I see it, my spells of cataplexy are harmless, temporary, not my fault, and—if bystanders feel like asking me what’s going on—can even be educational. However, if people are going to insist that someone in the transaction be embarrassed, I’d lots rather it be them than me. The falling-over thing happens to me much oftener than it happens to them, so having them be the ones who get embarrassed spreads the chagrin around much more equitably.

(I do try to be polite. In the presence of a standup comedian, I sit down.)

What does matter to me? Wakefulness. Maintaining mental alertness. That one gets me where I live. Being undermedicated is like being demoted to a slow-clock-speed single-tasking computer with no proper access to directories, one where you can only find your files by searching for character strings. It just plain sucks.

Physical alertness. That’s important too. It’s hard to have a decent life when you’re weak, clumsy, and constantly feel like you’ve gone 48 hours without sleep.

Integration is the one that’s hard to explain. I don’t lose my faculties evenly. Mathematics, navigation, multitasking, large-scale organization, and a sense of duration fade out first, in approximately that order. Words, text, pictures, and music are more durable; but when you lose your larger road map, you tend to stumble from one still-available neighborhood to another, with undiminished appreciation but not enough volition.

(Furthermore, if I were better medicated, that last paragraph would have less Greco-Latinate vocabulary in it. I can feel the presence of better sentences lurking nearby. I just can’t reach out and grab them. Perhaps another day.)

Integration is important. Way back when I was a literary criticism reference series editor, and was losing my ability to do the kind of large-scale synthesis the job required, I had a neurologist reply to my plea for readjusted meds by saying, “There’s no test we could devise that would show you as being anything other than a very intelligent woman.”

I mark that as the moment when I really started loathing him. Someone who’s hung out his shingle as a neurologist has to know that there’s more to the mind than can be measured by standard IQ tests. Someone who’s decided to specialize in sleep disorders ought not be snotty about anecdotal data, especially when it’s coming from someone who’s been his patient for years and has never lied to him.

“Right now,” I said, speaking rather more slowly and clearly than I had before, “I can’t parse anything more complicated than a Georgette Heyer novel. If I can’t read complex texts, I can’t keep my job as a litcrit editor. If I lose my job, I’ll have neither the income nor the medical coverage to pay for appointments with you.”

Only then did he agree to increase my dosage: despise, despise, despise.

Have I mentioned how hard it is to find a good neurologist who specializes in sleep disorders? As one neurologist explained to me while speaking off the record, the hot research is in other areas, and the money’s in strokes. Narcoleptics are always troublesome and idiopathic, they never get well, and the most effective drugs for their condition will bring you under the scrutiny of the Feds.

Thank goodness for the few doctors who think we’re interesting.*

I just turned 49. I’ve been a diagnosed narcoleptic for more than twenty years now. I have some idea of who and what I am, what I want to do, and what I need if I’m going to do it. I persist in believing that life and narcolepsy can both be managed better than they have been. I go forward in hope.

Comments on Neurological update:
#1 ::: Elese ::: (view all by) ::: April 08, 2005, 04:09 PM:

Teresa, I really identify with your situation. I suffer from a severe mental illness. My illness has only stabilised by me taking so much medication that I need to sleep at least 16 hours a day. Coupled with the memory loss and migraines I periodically consider just dumping all my meds. In my case, I know life with the meds is better than life without, so I never up doing it. But I dream of a new world with medication without side effects. Side effects SUCK.


I hope the new neurologist can help you.

#2 ::: Emma ::: (view all by) ::: April 08, 2005, 04:23 PM:

Oh, BRAVO! Finding a doctor that at least makes an effort to understand you, the person, rather than "they", the symptoms, is such relief!
And, I ask you, what's so bad about keeling over with laughter? :-)

#3 ::: Skwid ::: (view all by) ::: April 08, 2005, 04:27 PM: do you feel that the increased usage of ROFL has aided in people's reactions to the cataplexy or made them more disbelieving that someone would actually have no choice in the matter?

I, for one, am unsurprised that neurologists are a generally unhumorous bunch. One of the most dull undergrad classes I've taken (my degree is in Psych) was "The Science of Laughter," with it's attendant dull text Humor and Laughter. Very dissapointing. About all I took from that course is a reaffirmed belief that "Mind," and particularly the emotional mind, is very much not entirely synonymous with "Brain."

Anyway, here's hoping for continued pharmaceutical stability.

#4 ::: Heatherly ::: (view all by) ::: April 08, 2005, 04:53 PM:

I've kept my neurologist through several location changes, despite an hour-long commute, precisely because of his sense of humor and personality, as well as his good skills.

And having 'brain fog' because of CFIDS, I empathize so much with integration difficulties. Not only in simply dealing with the mental pea soup itself, but in trying to describe the symptoms or the experience to doctors? Frustrating beyond measure.

Crossing fingers that this doctor continues to be reasonable, works with you, and hopefully finds some ways to improve the standard medications.

*sending hope from PA*

#5 ::: Aconite ::: (view all by) ::: April 08, 2005, 04:58 PM:

I explained to them that without anti-cataplectic drugs I had a life, albeit one that intermittently involved falling over; but that when I was on those drugs, I really didn’t have a life at all.

It's also an expression of a generous impulse on your part, to allow others to tell the story of how they actually made you fall down laughing. Who doesn't get egoboo from something like that?

#6 ::: Melissa Mead ::: (view all by) ::: April 08, 2005, 05:00 PM:

A doctor with a sense of humor's a keeper, and one who also listen to you is even better.

Hope it works out well.

#7 ::: Deborah Green ::: (view all by) ::: April 08, 2005, 05:03 PM:

I'm happy to hear the news! I hope your new doctor works out.

#8 ::: Beth ::: (view all by) ::: April 08, 2005, 05:04 PM:

I go forward in hope.

What a lovely way to put it.

I'm so glad to hear that things are improving for you, Teresa. It's wonderful to know you've found a doctor with a sense of humor. And a sense of humanity.

::continuing to think postive thoughts in your direction::

#9 ::: Anna Feruglio Dal Dan ::: (view all by) ::: April 08, 2005, 05:10 PM:

It is actually one of my goal in life to make you fall down. I live in hope too. :-)

In the last months I've been suffering from increased sleepiness and general stupidity and utter inability to concentrate as a side-effect of depression. I don't seem to find a doctor that takes me seriously on that front. Neurologists tell me it's psychogenic. Psychiatrists tell me that I seem to be doing OK, considering that I'm not suicidal. I explain that I can't work any longer and they just look politely helpless.

I so feel for you.

#10 ::: Kate ::: (view all by) ::: April 08, 2005, 05:13 PM:

Oh I'm so very glad to hear/read that you have a new Neurologist! Here's hoping that he is a good one indeed, and that his sense of humor is a precursor to this!

I saw mine yesterday. she's very happy with my progress, despite the new complication showing that I may be allergic to one of my meds.

#11 ::: CHip ::: (view all by) ::: April 08, 2005, 05:14 PM:

I have watched such problems but not had to deal with them myself; from what I've seen and read, hope at least makes life easier and can help. (Note that by "hope" I'm assuming neither of us means the sort of tranked-to-the-gills feeling that has been the basis of hard jokes about the profession of psychiatry.)

I think I can see where both you and the specialists were coming from. At a guess, most of their patients aren't on the high end of the live-by-their-wits scale; some are may even be in jobs where just falling over is life-threatening. (That's \may/ -- I don't know whether (e.g.) heavy-machinery operators are allowed to take anti-cataplexy drugs.) The specialists \should/ at least be able to see what's important for the specific patient, but applying a template is easier to learn -- and is what too many of them are forced to do by medical economics. I also suspect from my dealings with the medical profession that too many doctors are trained to be mechanists (not dealing with anything non-material, e.g. intellect), and even atomic mechanists (dealing with isolated pieces instead of the entire physique). It's tempting to rant about med-school training, but I don't know enough to speak knowledgeably about it; my dealings (mostly in biomedical research) exposed me to the more mechanistic side of medicine.

Treatments in many fields have improved since the 1950's, when Kornbluth's only choice to prevent a heart attack was medicine that dulled his mind; it sounds like narcolepsy is being closed in on, just at a different pace. But acting as your own advocate -- being specific about and attentive to your condition, as you are -- seems to be the best choice for anyone who doesn't fit a template closely; I can think of at least three people I've know who probably would have been better off if they'd been as attentive to their own symptoms and their physicians' professionalism as you're being I'm glad to hear you've found someone who will work with you, not just out of a book. That he has a sense of humor also sounds like a very good sign.

#12 ::: Jon ::: (view all by) ::: April 08, 2005, 05:14 PM:

So do you think this new neurologist learned to be funny just so he can run tests on people like you?

#13 ::: Randolph Fritz ::: (view all by) ::: April 08, 2005, 05:16 PM:

"Integration is the one that’s hard to explain."

What you are describing sounds very much like the "concentration" that fails in ADHD.

Good luck with your new doctor.

#14 ::: Allen Baum ::: (view all by) ::: April 08, 2005, 05:33 PM:

I can only dimly imagine what you're going through - its hard for me to empathize without personal experience, but I'm learning as I get older (and get more direct second-hand experience with friends suffering from similar issues)
I went to a talk on sleep disorders at Cafe Scientifique here in Palo Alto last year; the speaker was from Stanford medical center, which has a sleep disorder clinic. It was not a very good talk (I think they're very dumbed down).

Regardless, I talked to him afterwards, and mentioned that I knew someone with a sleep disorder, described what I knew about yours - and he got pretty interested, and said you should look him up if you're in the area.

I thought that was unlikely, given where you live - but if you were planning to come out this way, I could probably dig up his name (yea Google)...

#15 ::: Madeleine Robins ::: (view all by) ::: April 08, 2005, 05:36 PM:

Oh, hurrah. I'm glad you've got a good doctor, and a start on fixing the meds situation.

One would think that even the neurologically healthy would get the difference between being intelligent and feeling like you can't access your intelligence, like trying to put your finger on quicksilver.

My memory is that despite the cataplexy you could fall to the floor without spilling a drop of coffee from the mug you were holding...that's not just intelligence, that's talent. And it's not like you fall over all the time--there were whole days at Tor when you stayed upright despite everyone's best efforts, although those may have been days when Anna Magee was out of the office.

Again, hurrah. And a little dance of hope.

#16 ::: Xopher (Christopher Hatton) ::: (view all by) ::: April 08, 2005, 05:37 PM:

What a relief! And you write better in your current impaired state than I do on my best day.

With ADHD, multitasking is NOT an issue. In fact for me the Cylert impairs that slightly, isn't that odd? It's SINGLE-tasking that's hard for me.

I remember when Fanoclasts met at Stu Shiffman's. All comfy chairs and carpets; you falling over became a way of counting the evening's good jokes -- once we realized it was harmless.

#17 ::: Xopher (Christopher Hatton) ::: (view all by) ::: April 08, 2005, 05:41 PM:

BTW my sleep specialist was tickled pink when I called her a "somnologist." Try that on your new guy.

#18 ::: Robert L ::: (view all by) ::: April 08, 2005, 06:15 PM:

You’d think more neurologists would have a sense of humor, but they don’t, so this one’s a find.

As you may know, my late father was a neurologist before he switched to psychiatry. He did have a sense of humor, just a rather strange one.

#19 ::: Charlie Stross ::: (view all by) ::: April 08, 2005, 06:21 PM:

Your account of what it's like to lose integration gave me a sense of deja vu, until I realized it's just like my experience of coming down with 'flu a couple of years ago:

I first noticed I was off colour while reading "Effective Perl Programming" (clue: heavy code wizardry). I suddenly found that it was too much effort to understand stuff I'd been reading the day before. So I switched to reading a C. J. Cherryh novel. An hour later I found I couldn't concentrate on it, so I switched to Harry Potter. Two hours later, I realized I couldn't remember the past three pages of that, so I switched to a mostly content-free comic book. After an hour of that, it was finally too much, so I crawled into bed.

A while later the fever chills set in and I was delirious for the next 12 hours.

Anyway, if a doctor told me to cheer up and stick with Harry Potter for the rest of my life, I'd be strongly tempted to punch them in the mouth, too. Good luck with the new neurologist, and I hope they turn out to be a keeper!

#20 ::: Lisa Hertel ::: (view all by) ::: April 08, 2005, 06:23 PM:

I have found that, when you have an unusual health problem, it's best to go to someone who is a top specialist in that problem (if possible). They're usually affiliated with large teaching hospitals.

As to your prescriptions, keep to the same pharmacy, and make sure they know your diagnosis. This will help alleviate some of the suspicion engendered by chronic use of controlled substances. Since such substances are physically addictive, it's not surprising you would require ever-increasing dosages.

#21 ::: Ulrika ::: (view all by) ::: April 08, 2005, 06:25 PM:

I can feel the presence of better sentences lurking nearby. I just can’t reach out and grab them. Perhaps another day

I know this doesn't make you feel better, but these three sentences remind me of a friend of mine bitching that his eyesight has worsened so that now it's only 20/15. The rest of us aspire to what you do when you're in slow loris mode.

#22 ::: Graydon ::: (view all by) ::: April 08, 2005, 06:27 PM:

This is very cheering news.

May it lead to much more.

#23 ::: Heatherly ::: (view all by) ::: April 08, 2005, 06:46 PM:

Lisa: In my own experience, the top specialists are generally those with the least amount of personality and humor. As well as bedside manner or patience. I know that's not true of all specialists, but those I've encountered seem to have inflated egos proportional to the size of their inflated bills.

#24 ::: mayakda ::: (view all by) ::: April 08, 2005, 06:50 PM:

Oh yay! Good news at last!
I would be immensely flattered if someone fell down laughing at one of my jokes. The best I've been able to manage is causing some coughing fits.

#25 ::: Tiellan ::: (view all by) ::: April 08, 2005, 07:01 PM:

So if I run into an interesting woman at a convention, tell her a good joke and she falls over, that's probably you? I'll keep note of that. Seriously, I'm glad you've found a good doctor, and are improving now.

#26 ::: HopefulJo ::: (view all by) ::: April 08, 2005, 07:02 PM:

I really liked the blog and am linking you up on my site... you might like it there. Come visit when you have time.

Thanks for your outlook on your life. Refreshing...

Jo Ann

#27 ::: Anarch ::: (view all by) ::: April 08, 2005, 07:12 PM:

Integration is the one that’s hard to explain. I don’t lose my faculties evenly. Mathematics, navigation, multitasking, large-scale organization, and a sense of duration fade out first, in approximately that order. Words, text, pictures, and music are more durable; but when you lose your larger road map, you tend to stumble from one still-available neighborhood to another, with undiminished appreciation but not enough volition.

I can tell you, not just to the day but almost to the minute, when my most recent, destructive bout of CFS hit (the Thursday before Spring Break in 2002 at around 4pm), because I was in the middle of working on a problem set for a complex analysis class. One minute I was fine. The next, I could quite literally feel neurological connections turning off. It was the mental equivalent of the lights going off one-by-one in an auditorium; a slowly diminishing light and a slowly gathering dark. What was particularly frustrating was that I knew this problem wasn't hard and that I knew that I knew how to solve the damn thing... I just couldn't make the appropriate connections.

It was all downhill from there. Nine months, give or take, of mental degradation and oblivion. I couldn't absorb anything new or synthesize anything old. [Charlie Stross' anecdote about reading difficulty was more or less the story of that year for me.] Had I not been on a research fellowship, I would have been forced to leave grad school; as it was, I was able slink through that year unnoticed, although I'm still dealing with the ensuing repercussions.

As an addendum to that story, one of the most euphoric moments of my life was the following year when I was redoing that problem set in the process of finishing the incomplete I'd garnered. I sat down with it, puzzled over the definitions... and within ten minutes I'd solved it. I finally understood what it was to exorcise a demon. Truly a glorious thing.

I had a neurologist reply to my plea for readjusted meds by saying, “There’s no test we could devise that would show you as being anything other than a very intelligent woman.”

I had, modulo gender, an almost identical response from the neuropsych testing I had towards the end of that wretched year. Given my "stellar" IQ test results -- and despite my very specific protestations about the deficiencies of the method -- the sleep disorder clinic here simply refused to treat me any further. That was it. When I protested, I was basically told that I couldn't be experiencing the problems I was claiming because they didn't show up on the tests and, in passing, they mentioned that no test would ever be able to diagnose those problems. If I'd been compos mentis I would have been delighted to strangle them on that contradiction; as it was, I just whimpered and staggered away.

[This was all exacerbated by the fact that a) due to a bureaucratic mixup my insurance hadn't covered the testing and b) the sleep disorder clinic promptly lost my test results for a year. Not a happy experience.]

#28 ::: Greg van Eekhout ::: (view all by) ::: April 08, 2005, 07:59 PM:

Hoping things continue in an upward direction for you.

#29 ::: TomB ::: (view all by) ::: April 08, 2005, 08:30 PM:

I learned about the falling down thing by telling a joke while we were standing on a concrete floor. Ouch. Funny is not always good. My apologies again. It's not likely I can stop myself from telling jokes, but maybe I should start them with "now everyone please sit down."

I am so glad that you have found a doctor who will pay attention to you. Perhaps he recognizes your need to be mentally alert because he is himself.

Good luck,

#30 ::: Jonathan Vos Post ::: (view all by) ::: April 08, 2005, 09:07 PM:

If one's neurologist starts cracking too many jokes, you are in a mutated version of the Seinfeld episode where he objects to his dentist telling Jewish jokes. Why, as a Jew? No, as a professional comedian.

Teresa: Please let us know what they say when you have the electrodes taped to your scalp, you're in the sleep lab, and you explain that it is professionally necessary that you blog your science-fictional dreams, especially if they're set in the Flatiron Building.

Charles Stross:

But could you have read "Harry Potter for Dummies?"

Best of luck, seriously, Teresa.

#31 ::: Marilee ::: (view all by) ::: April 08, 2005, 09:34 PM:

Good news about the new neurologist! Was it the first Capclave where we were in half of the consuite and you fell out of your chair laughing and a teenager came over and said "I thought I was the only one who did that!"? You explained to him what it was and that he should see a doctor.

I know other Kaiser patients who have the same neurologist that I do, and none of them like her as much as I do. She's Polish, straight-forward, says what she thinks, and that works well with me. She's also the one who read my entire foot-tall chart and went to talk with the x-ray tech in order to properly diagnose why I had the big stroke five years earlier.

We wear the same odd shoe size and commisserate over that.

#32 ::: Jason ::: (view all by) ::: April 08, 2005, 09:41 PM:

"maybe I should start them with 'now everyone please sit down.'"

Tom, I think this was the first thing I ever learned about Teresa. Someone (can't remember who) told me "If you're going to tell her a joke, suggest she sit down first."

Teresa - Good luck with the new neurologist!

#33 ::: Michael Weholt ::: (view all by) ::: April 08, 2005, 09:59 PM:

Anna Feruglio Dal Dan: It is actually one of my goal in life to make you fall down. I live in hope too. :-)

LOL (but not falling down). I confess this evil urge has visited me, as well.

Ulrika: ... The rest of us aspire to what you do when you're in slow loris mode.

Ain't that the truth.

Teresa, it's always such a relief when we see one of these long posts from you after you've been having trouble. Hope things continue climbing.

#34 ::: Teresa Nielsen Hayden ::: (view all by) ::: April 08, 2005, 10:14 PM:

Hey, Michael. Can you hear the re-medication kicking in?

Hi, guys. Starting to come back here. Not everything, not yet, not hardly; but there's more light. Light is beautiful.

#35 ::: Anarch ::: (view all by) ::: April 08, 2005, 10:18 PM:

It is actually one of my goal in life to make you fall down. I live in hope too. :-)

Just run up behind her and push ;)

#36 ::: Michael Weholt ::: (view all by) ::: April 08, 2005, 10:45 PM:

Hey, Michael. Can you hear the re-medication kicking in?

I certainly can. And with Spring coming on, I heard some birds today too. Sort of the same thing. In a way.

#37 ::: Bruce E. Durocher II ::: (view all by) ::: April 09, 2005, 02:10 AM:

It is actually one of my goal in life to make you fall down. I live in hope too. :-)

A Psuedo-Guy-Smiley "Frowny Angel" muppet works wonders, as those of us in a hallway during WorldCon found out. I still feel stupid about that--I had a half-smile on my face because of something someone had said and I sort of leaned forward as Teresa went down because I couldn't figure out if I should try to help her up or not. Now I worry that Patrick must think of me as the grinning fool that loomed over his wife as she collapsed...

#38 ::: Kate Yule ::: (view all by) ::: April 09, 2005, 02:13 AM:

I had a neurologist reply to my plea for readjusted meds by saying, “There’s no test we could devise that would show you as being anything other than a very intelligent woman.”

Suzy Becker, author/illustrator of Everything I Need to Know I Learned From my Cat, also wrote the wonderfully titled I Had Brain Surgery; What's Your Excuse?, from which I gleaned the following tip: if you're going to have any kind of brain surgery, meet the doctors & therapists who will be evaluating your recovery before you have the procedure. Her idea of "better enough" and theirs were wildly divergent. (I hope I never need this tip....)

#39 ::: Jill Smith ::: (view all by) ::: April 09, 2005, 06:50 AM:

Err... yeah. What Ulrika said.

#40 ::: jane ::: (view all by) ::: April 09, 2005, 07:58 AM:

I think Parick is well used to grinning fools who loom over his wife as she falls.

T--I am so glad you have new hope with the new neurologist. You were so down when we last talked.

Charlie--I had the same sort of symptoms a number of years ago, only it wasn't flu in my case. It was that I had forgotten to take my thyroid meds too many days in a row. Grow stupid through lack of chemistry. I finally noticed when I almost had an accident three times in one day, not noticing--or at least no holding the information in my head--that a car was coming from my right.


#41 ::: Matt McIrvin ::: (view all by) ::: April 09, 2005, 10:42 AM:

“There’s no test we could devise that would show you as being anything other than a very intelligent woman.”

And asking the patient whether she feels completely debilitated doesn't constitute a test? I thought that a standard yardstick for diagnosing mental or neurological illness was that if it causes a significant problem in your life, it's a significant problem.

#42 ::: Matt McIrvin ::: (view all by) ::: April 09, 2005, 10:58 AM:

Charlie's flu story reminds me that I often find that my ability to concentrate on things and, especially, motivate myself to do things drops to about 50-60% of normal in the three or four days before I come down with overt cold symptoms. My particular brain is calibrated such that if I just feel fogged, useless and hopeless for no discernible reason, it's a pretty good sign that I've caught some virus or other; and there's a kind of relief when my head plugs up and I can identify a physical cause. To feel that way all the time would be a nightmare.

#43 ::: Edo ::: (view all by) ::: April 09, 2005, 11:22 AM:

Teresa, just adding my voice to the chorus of relieved readers.

#44 ::: Georgiana ::: (view all by) ::: April 09, 2005, 12:18 PM:

Huzzah! I'm so excited for you Teresa. It's so hard to get a new doctor and explain everything satisfactorily when your brain is not performing as well as you know it should. Good for you for making this happen. (Good for Patrick also as I imagine he is quite supportive.)

You have done an incredible job summing up how I feel. I have a neurological dealie of my own called pseudotumor cerebri or idiopathic intracranial hypertension (I don't think mine is idiopathic per se, I got it post meningitis). It's all the fun of a brain tumor without the movie of the week. Medication is not working for me. The physical symptoms are pretty appalling but it's the mental stuff that drives me nuts.

Thank you so much. I get so much encouragement reading your blog, not just from you but everyone else in your community. There's a book about brain surgery? I can't believe how surprised I am to read that but of course that is just more fogginess on my part.

I am on track to have "routine" brain surgery (a ventriculoperitoneal shunt) in the next few months. The first step is another lumbar puncture on Wednesday. I have a serious clotting disorder and so far the neurosurgeon's attitude has been that everyone does these shunts, they pass them off to first year residents because they are so simple, why on earth do I worry? And if we can get through the post surgery without a hematoma from the clotting disorder then everything is fine. Nothing else is important.

But I say this is my brain, this is me, this is the essential me you're fiddling around with here. I have this horror that I'll come home from the hospital and I won't like Neil Gaiman anymore. I'll just read Dan Brown and think he really is the most intelligent writer on the planet. I'll go from reading and writing in my spare time to watching The Apprentice and American Idol. And worst of all, I will look back at my former self with a snobbish attitude and wonder why on earth she wasted her time all those years with that stupid writing and acting.

I hope I haven't taken up too much space talking about me, me, me. I feel so validated by your words that I really want you to understand what a positive effect you've had on me. I've been sitting here crying since I started the post but it's not because I'm sad it's because when I hear you say that having a neurological illness is not our fault and we absolutely deserve decent care and the hope and goal of a return to clearheaded fitness, it's like part of me is hearing it for the first time and yelling YES!

#45 ::: Andy Perrin ::: (view all by) ::: April 09, 2005, 12:39 PM:

Did the sun come out from behind a cloud? It's definitely brighter in here. I'm glad things are looking up, Teresa.

#46 ::: Scorpio ::: (view all by) ::: April 09, 2005, 02:05 PM:

I sympathize with your description of anecdotal diagnosis. I have a good psychopharmacologist who actually believes what I say. It helps.

The description of an antidepressant that works is "It stops the crawly electrical sensation that is right under the skullbone, and there is finally silence in your head. And you aren't really aware of the crawly sensation until it stops."

Try prescribing to that. It's idiosyncratic. It's also accurate. As you say, finding someone who can work with that is a real joy.

#47 ::: Paula Kate ::: (view all by) ::: April 09, 2005, 02:27 PM:

Great to hear the light's coming back.

#48 ::: Marilee ::: (view all by) ::: April 09, 2005, 03:49 PM:

Georgiana, your insurance should have some way to appeal the surgeon's decision of using the resident. If you have other problems, then a resident probably isn't up to it. When I needed a dialysis port, I turned out to be weird in my chest and they couldn't get a shunt in, so it's in my Kaiser chart -- only Kaiser surgeons can put in central lines. The shortest time so far has been three hours.

Also, talk to the anesthesiologist. They're responsible for much of the rest of you, and they may not want a resident, either. (When I had the little benign mass out of my wrist, the anestheologist decided not to use Versed, just a local block, and then she had the recovery nurse get me out as soon as I was dressed, so I'd be off her responsibility.)

#49 ::: Mary Kay ::: (view all by) ::: April 09, 2005, 04:05 PM:

I haven't read the other comments yet, I just want to say that my reaction to reading this is the intense desire to give you a big hug, not for comfort, but just because you're a particularly wonderful you. Why do we live on opposite coasts dammit?


#50 ::: DJ Clawson ::: (view all by) ::: April 09, 2005, 09:20 PM:

Big reader, rare poster. I usually don't like throwing encouraging phrases around about concern, because I don't care for them when I get them myself, but I will say this: I know what it's like to have a chronic but not terminal illness - and it sucks, suck, sucks. There's really no other way to put it. And then having to choose between the illness and a medicine with side effects that are aguably worse than the illness itself - that just makes it worse. Still, you're in New York, and they have the best doctors in the world. That doesn't mean you'll be okay, but it's within the realm of possibility. Good luck.

- Marsha

#51 ::: Larry Brennan ::: (view all by) ::: April 10, 2005, 12:46 AM:

I am so glad that things are coming back together for you. Having a doctor you have a good rapport with is one of the things that makes for proper treatment.

I'm not surprised to hear that most neurologists are difficult. The only one who's ever treated me wouldn't shake my hand out of fear of contagion. In fact, he ranted about it for five of the fifteen minutes he spent with me. Thankfully, I didn't need to go back.

I hope things continue to improve for you in every way.

#52 ::: Tiger Spot ::: (view all by) ::: April 10, 2005, 01:34 AM:

I'm glad you've found a new neurologist!

What's the asterisk towards the end? I'm on a new computer and it doesn't seem to want to do the little floaty-box thing that the old one did.

#53 ::: Sarah Avery ::: (view all by) ::: April 10, 2005, 01:36 AM:

I did this by saying “I’d rather fall over.” I explained to them that without anti-cataplectic drugs I had a life, albeit one that intermittently involved falling over; but that when I was on those drugs, I really didn’t have a life at all. I thought this was a reasonable viewpoint, but explaining it didn’t make them stop looking at me as though I were an alien.

Medical schools are beginning to hire faculty members from qualitative disciplines in an effort to produce doctors who are a little more clueful about this kind of thing.

I spent a while working as an ethnographer for a medical anthropologist, and her data for one study showed very clearly that her field informants--poor women with HIV/AIDS--would refuse medications their doctors told them were necessary for living out the year, if those medications made it too difficult for the patients to prepare meals for their children right now. The doctors just did not get it. Patients who had priorities that were more important or urgent to them than their personal survival were labeled as non-compliant, and you can imagine how the quality of care deteriorated from there.

The cheerful side of my bit of anecdotal evidence here is that this study, which paints a rather damning picture of physician attitudes, just landed my old boss a job at a teaching hospital where the faculty knew they were clueless about how patients think and wanted very much to do better.

#54 ::: Lois Aleta Fundis ::: (view all by) ::: April 10, 2005, 04:34 AM:

I'm glad to hear you found a good doctor, and are back on your meds.

He and I also exchanged words about my previous neurologist, which was very reassuring. Reminds me of a conversation I had with my current dentist about my previous dentist.

#55 ::: Vassilissa ::: (view all by) ::: April 10, 2005, 05:50 AM:

Georgiana: one of my friends has PTC. It sounds extremely unpleasant. Medication didn't work for my friend either. I hope your surgery is successful.

Teresa: it is so good to see that you're getting better treatment.

“There’s no test we could devise that would show you as being anything other than a very intelligent woman.”

I've been there. It can be surprisingly difficult to get it through to a neuropsych (or related professional) that intelligent != in working order.

#56 ::: Charlie Stross ::: (view all by) ::: April 10, 2005, 09:12 AM:

Speaking wildly parenthetically -- and at risk of veering off-topic -- as someone who worked in (then bombed out of) a related speciality many years ago (okay, so I started out as a pharmacist before I learned better), I've seen doctors from both sides of the counter as it were ... and the one conclusion I've reached is that the training turns out excellent specialist mechanics but lousy human beings.

If you take an eighteen year old and subject them to 100 hour study weeks for a couple of years, then work 'em for 80-120 hours a week for a couple more years so they see lots of ambulatory case studies, of course they're going to look proficient at dealing with the problems. And the professional mystique is easy enough to learn by example from the consultants. But (with a few notable exceptions) they tend to Not Have A Life during their late teens and early twenties, at the time when most of us are learning how to be functioning adult members of society. And while they tend to straighten out over the next decade, the consequence is that junior doctors often relate to their patients (us!) about as well a high-functioning autists.

(And the sleep deprivation doesn't help, either. There's no way in hell I could have survived in a house officer's posting.)

Now we get to neurology. Wildly generalizing again, it's a tough speciality with a lot of strange stuff to assimilate, and the patients -- folks they see day in and day out -- are mostly a little bit weird. That makes for even less socialization than in other medical specialities ...

Long term, the solution is to raise the retirement age and cut the hours during training specifically to give the young 'uns room to grow as human beings. But I'm damned if I can see a way to pin a qualitative price on that which would convince those who hold the purse strings that it's a good idea to shorten the working life of doctors (but not the cost!) just in order to give them more time to kick back and chill out. And until that happens we're going to keep seeing doctors who view us as a bundles of isolated walking symptoms rather than as human beings with problems who need helping to lead a normal life.

#57 ::: Lucy Kemnitzer ::: (view all by) ::: April 10, 2005, 10:29 AM:

So, Charlie, we should expect my kid to be an excellent doctor -- he's taking the slow way to medical school and he'll be probably close to forty by the time he takes practice.

#58 ::: Shunra ::: (view all by) ::: April 10, 2005, 01:03 PM:

The neurologist's response reminds me of a series of pleas to obstetricians. I'm a writer and translator and I live in and by my brain. During pregnancy, my vocabulary was impacted, big time. And I simply couldn't get that fact through to my doctor.

It went away after the fourth trimester. I relied on good editors and only lost a few clients. But I have not yet heard any (male) doctor willing to admit that pregnancy had anything to do with inability to hold a complete sentence.

The doctors I discussed this with thought it was aging or an unrealistic evaluation of my skills. Funny, outside of pregnancy I've been able to translate complex work (literary, legal, technical, medical - whatever rolled down the pipeline) with no difficulty.

I think the problem is iatologic.

#59 ::: Jonathan Vos Post ::: (view all by) ::: April 10, 2005, 01:22 PM:


"Your suggestion that logicians should take part in psychiatry only makes Dr. Szasz's point at the conclusion of his book THE MYTH OF PSYCHOTHERAPY, that what he calls 'iatrologic' should replace any medical pretentions that psychiatrists and psychologists have."
T35 (Szasz)
Commentary 38

Exchange between David Herman and Paul Franceschi
4 September 2002, posted 8 October 2002

Great term! Thanks for pointing us to it. I visualize Spock, in his 7-year itch, lying on a Freudian couch and saying to Silverberg's robot shrink: "Highly uniatrological!"

#60 ::: Charlie Stross ::: (view all by) ::: April 10, 2005, 01:54 PM:

Lucy: if only your kid was more typical of the way people enter medicine ...

#61 ::: Shunra ::: (view all by) ::: April 10, 2005, 02:11 PM:

Thanks, JVP!

I've been heading towards a book on how to get through to doctors (baby steps: my first article on the subject will be published in the local paper this week), so that iatomorphic words have been tripping off the keyboard rather glibly, of late.

Amusingly, the single most prevalent comment from doctors has been: "We are not mind readers, TELL US WHAT'S GOING ON!" (And they variously indicated the all-caps in their original interviews, both in person and over the phone).

Patient-education, and doctor-education, is long overdue in this country where physicians are the new priests. (They wear a costume, they worship in central temples, they dispense healing sacraments, they are trained out of humanity... ...priests.)

#62 ::: Larry Brennan ::: (view all by) ::: April 10, 2005, 02:59 PM:

Shunra - perhaps the chain has fallen off my comprehension sprocket this AM, but "they are trained out of humanity..." has be a bit confused. Do you mean that they are trained out of (as in away from) their own humanity, or they are trained in the cause of humanity. I'd buy either, or both...

By the way, I think most doctors would be offended when compared to priests - they'd rather be compared to gods.

#63 ::: Shunra ::: (view all by) ::: April 10, 2005, 03:24 PM:


intentional ambiguity, there. The humanity is trained out of them, and their training leads them out of the rank and file of the folks who bleed when they're poked and are scared when they're hurt.

And my experience with doctors is that they are MOSTLY nice people, overworked and under-breathing, with communication skills that need improvement and a weight on their hearts, minds, and shoulders that prevents them from seeing that their everyday situations are strange and terrifying for the patients for whom this is neither routine nor familiar.

And then there are the prize jerks. THOSE ought to lose their licenses.

Interviews with a couple of doctors who'd been patients brought up great situations, including a doctor running after the surgeon who had just given him 3 minutes of his time and a cursory glance and saying: "You come right back here, I'm not finished with you". If only we all had what it takes (including presence of mind) to do that.

#64 ::: Georgiana ::: (view all by) ::: April 10, 2005, 04:31 PM:

Marilee - thank you for the excellent advice. I pay extra for a POS plan so I can go to another doctor. If I am not totally happy with everything this guy has planned then I have no qualms about switching to someone else. He needs to feel that this is just as important as I do or it's not going to happen.

Vassilissa - thank you. If your friend is interested in joining a pretty decent online support group they could email me at and I will give them information.

Lucy - the best pediatrician I ever heard of was a lady in Texas who had eight kids and then when to medical school in her 40s. She had a wonderful bedside manner and you knew when she talked about something scary like seizures from fevers she had experienced them with her own kids and she understood why you were so upset. Quite a lot of midwives used to begin after their children had grown. I think there is a lot to be said for having that life experience and being more relaxed because you aren't trying to juggle quite so many things at once.

#65 ::: FranW ::: (view all by) ::: April 10, 2005, 08:19 PM:

I ran across an interesting abstract (I can't access the entire article, unfortunately):

Neurology. 2004 Jun 22;62(12):2300-2. "Diet therapy for narcolepsy." Husain AM, Yancy WS Jr, Carwile ST, Miller PP, Westman EC.

The effects of a low-carbohydrate, ketogenic diet (LCKD) on sleepiness and other narcolepsy symptoms were studied. Nine patients with narcolepsy were asked to adhere to the Atkins' diet plan, and their symptoms were assessed using the Narcolepsy Symptom Status Questionnaire (NSSQ). The NSSQ-Total score decreased by 18% from 161.9 to 133.5 (p = 0.0019) over 8 weeks. Patients with narcolepsy experienced modest improvements in daytime sleepiness on an LCKD.

IIRC, Teresa, you sometimes follow the Atkins diet. If you've noticed any correlation between being on the Atkins diet and a lessening of your narcolepsy, you might want to consider sticking to low carb on a regular basis.

#66 ::: Lydia Nickerson ::: (view all by) ::: April 11, 2005, 02:53 AM:

Sleep disorders, bah! Should you ever be offered the choice of having a serious sleep disorder, of having polio and paralysis from the waist down, I recommend the polio.

(Pop quiz, children: What is the worst way to waked up? No, Jeffrey. The worst way to wake up is driving 80 miles per hour in the median.)

I was first seen by pulmonologists, who agreed that sleep apnea was the problem. They also thought that it might be a good idea for me to change the anti-depressants I was on. This made me cry;.

Innocent that I am, I belielved them. I didn't let anybody change my meds, though. Just sleep apnea. Well, then I'll wear a silly mask and I'll be fine.

Then I saw a neurologist, in fact, one of the leading neurologists in the field of sleep disorders. His current specialty was people who got up and ate significant amouts of food while remaining asleep, as in clinical definition of sleep for the entire episode. Pretty damn interesting.

I gather I was boring. He recommended that I get more sleep, and counseled against Provigil or any other narcoleptic drug since my mania was largely under control. (I think that "under control" means that I haven't ended up in any institutions, such as jail or the funny farm .

The next guy was also a neurologist, and he too wanted to mess with my psych drugs I told my shrink this, and she began to do the equivalent of cursing in two languages. However, she just happened to have Marshall McLuhan working in her clinic right then, so she showed him my chart. This was the first time an actual mental professional, you know, some one with background in my more dominant health issues, had looked at the chart. I gather the first thing he was was,"Why isn't this woman on 400 mgs of Provigil?} I was on 50 mg. My shrink was unfamiliar with the drug and afraid of sending me into a manic state. Evidently, mostly it doesn't.

The nicest thing about a psych sleep guy is that he understands the sleep issue in relationship to the brain crip issue. He doesn't have this silly idea that if we can just wean the patient off this anti-depressant which is known to disturb sleep patterns, all will be better.He's got a pretty .clear picture of what drugs I'm on, and why, and how they interact with sleep, which gives him a shot at finding an answer that doesn't involve turning me back into a maniacal suicidal zombie. Kinda a downer to live with, but great at parties. :-)

My shrink and this other shrink also agree that the sleep disorder is a part of the over-all disorder of manic-depression. That means that they need to be treated together, not as separate health issues. Oh, and I also got a diagnosisd. Sleep disease level 4. Doesn't that sound impressive? Not that it is likely to impress the University and provide me with accomodation. Ah, well, Can't have everything.

#67 ::: marrije ::: (view all by) ::: April 11, 2005, 04:43 AM:

Georgiana, if I'm not very much mistaken, you are the person who sent Neil Gaiman a message about her meningitis ages ago, right? And didn't he write this incredibly sweet reply? I'm sad to hear that you're still so troubled by the aftereffects. That sucks.

But perhaps it will give you just the tiniest of lifts to hear that I recently completed a novel about a guy who struggles back to health after the same illness, and that that particular novel most likely started with reading your message on Neil's blog.

I hope the operation goes well and that you regain all your powers soon. And YES you deserve the decent care!

#68 ::: Julia Jones ::: (view all by) ::: April 11, 2005, 05:58 AM:

Glad to hear things are getting better. I hope this guy sticks around long enough to make for serious improvements in your treatment.

#69 ::: Kip W ::: (view all by) ::: April 11, 2005, 10:13 AM:

"I'd rather fall down."

I understand. When it looked like my choices were life with kidney stones and dairy products, and life with no kidney stones and no dairy products, I thought I'd just have to keep eating dairy and have a stone every year or two. Luckily, that hasn't turned out to be the choice -- but how much sense would it make to let my skeletal system suffer for fear of recurring agony? I can say that I know what my choice would be, because I made it once, after which I got a reprieve and a norbal life. (Which is kind of funny. Ha-ha funny; not ha-ha-thud funny.)

#70 ::: Jon Sobel ::: (view all by) ::: April 11, 2005, 10:32 AM:

Glad to read the good news, if a few days late. Neurologists do seem to be an iffy bunch. My wife recently was referred to one who didn't even want to talk to or examine her, just wanted to immediately hook her up to some painful electric-shock testing device. She walked right out on him. I still like my family doctor's attitude when I come to see him. Knowing full well that I'm essentially healthy, he says, "What the fuck do you want?" Puts things in perspective.

#71 ::: Melissa Singer ::: (view all by) ::: April 11, 2005, 10:54 AM:

My daughter, who basically considers Teresa part of the furnishings of her life, was until a couple of weeks ago completely unaware that Teresa even had a disability. Teresa was just Teresa to dd. Which says much about Teresa.

Now, having listened to me describe Teresa's recent woes to my mother, dd has a new ambition: to make Teresa fall over. This should be interesting, as I suspect Teresa has heard every knock-knock joke in the universe, and that's dd's stock in trade these days . . . .

#72 ::: Mary Dell ::: (view all by) ::: April 11, 2005, 11:28 AM:

It's an odd sensation to be reading this today when I've been reading Making Book all week. I'm impressed by how much you sound the same when you talk about it--the 25-year-old you and the 49-year-old you. The intervening years don't seem to have made you more resentful of the burden, or any less inclined to try whatever might help you live the life you want.

For some reason, I have this image of your narcolepsy as "Rover," the giant menacing baloon from The Prisoner, but you're getting on with things from inside it rather than letting it suffocate you or carry you back to the island.

#73 ::: mary ::: (view all by) ::: April 11, 2005, 08:30 PM:

I hesitate to comment in this thread because I’m “neurologically normal” and “this isn’t about me”, but I think I understand exactly what you’re saying. First the easy one: for 2 decades I told my husband “Don’t make me laugh!” when we were playing any kind of sport, because although I don’t fall down, I lose all strength; I can feel my muscles become weak. “Helpless laughter” is an excellent description. If we were hitting golf balls at a range I’d have to lean on my club, weak in the knees, until I stopped laughing (and for a couple of minutes afterward). If we were bowling, I’d have to clutch the ball in both hands while I staggered around unsteadily.

Now the more difficult concept: you say the first thing you lose is math, well math is my bread and butter and I can believe it. I have a PhD in math and I’ve built a career working with very complex computer codes used to study fluid flow. I’ve been successful because I have the ability to hold in my mind a complex piece of logic, like mapping the way through an elaborate labyrinth in my mind. I believe this is equivalent to your being able to read and understand a long complex sentence (not my forte!) Same skill, different part of the brain? Anyway, I can only do it when I’m Stone Cold Sober.

For six years I worked at Lawrence Livermore National Lab, a nuclear weapons lab in Northern California. Every Friday I had lunch with “the guys”, and we always shared a bottle of wine. I’d have a single glass, or maybe two, with a large sandwich. When I got back to my office I’d have lost the absolute clarity I needed to do my job. Even if I couldn’t feel the effect of the alcohol at all, I couldn’t hold the labyrinth in my mind. For at least a year I followed a pattern of going out to lunch on Friday, working in the afternoon, then going to work on Monday morning, discovering the work I’d done on Friday afternoon was crap, and rewriting it. I finally stopped writing code on Friday afternoons.

Had I developed a neurological condition the equivalent of being under the influence of a single glass of wine all the time, it would have had a devastating effect on my career, and I’m sure no test would have identified any problem at all.

#74 ::: Georgiana ::: (view all by) ::: April 12, 2005, 01:15 AM:

marrije - goodness what a memory you have! You are exactly right, almost two years ago I wrote to Neil about what I thought were temporary memory problems post meningitis and he was amazingly kind and thoughtful. I've seen him twice since then, once at a reading in New York 10/2003 and then at Fiddler's Green where I got to go to dinner with him and some others. He is unfailingly kind and concerned and I think maybe it's kind of nice for him to talk to someone who understands what it was like for him when he had his own bout.

I am more than a little uplifted at the news of your novel, I am gobsmacked and extremely curious. Do keep me updated on its progress and I will be one of the first to buy it. Thank you for the kind thoughts, they are really appreciated.

#75 ::: Lenora Rose ::: (view all by) ::: April 12, 2005, 01:29 AM:

Mary: I know that one! The sudden weakness in the hands due to giggles. In archery, I've learned to sober-and-focus faster than I can when doing anything else, but I still periodically have to grumble at someone for cracking a joke while I'm on the line. I can usually shoot and follow a conversation, but not jokes. The physical effects are a mite too much for that kind of co-ordination. No, I doubt it's even a shadow of what the sudden collapse is like, but yes, it can mess with you even in less clear-cut situations.

Teresa, I'm glad things are looking up, and I hope the Neurologist fulfills the promise he's shown so far.

#76 ::: Jonathan Vos Post ::: (view all by) ::: April 12, 2005, 11:46 AM:

Neuroscientists Locate 'Imaginary' Colors

"To most people a 'red-letter day' is merely a metaphor. But it’s everyday reality to a synesthete who sees the alphabet in colors.... Synesthesia, a condition characterized by one sensory experience generating another – so that shapes have tastes, for instance – is estimated to affect between 1 in 200 to 1 in 2,000 people. The most common form involves seeing specific letters or numbers (graphemes) in specific colors. For these individuals, known as grapheme-color synesthetes, an ordinary '5,' in black ink on a white background, always appears red or a 'k,' greenish-blue."

"According to research published in the March 24 issue of Neuron, not only do these grapheme-color synesthetes really see the colors they report, as measured in behavioral tests, but functional magnetic resonance imaging (fMRI) of their brains also shows activation in the color-selective regions of the cortex when they view black-and-white letters or numbers...."

My wife and I do not have this neurological effect as strongly as, say, Nabokov, but we do agree on the personality of some digits, and on the color of an electron. I told my (visually gifted) Math students over and over: "Every number paints a picture. Every picture tells a story. So every number tells a story." Those stories are now my most prolific genre, amounting to over 400 of my 1200 publications, presentations, and broadcasts. But not right for the definition of "story" on this blog!

On the other hand, what does Teresa's brain look like on functional magnetic resonance imaging when she's editing Science Fiction? Laughing? Eating the result of one of her recipes? Does her taste areas of the brain light up when she's editing a recipe? Quick, someone -- apply for a NIMH/SFWA Grant!


Interesting and clearly written tale of Math/Computer Science versus Wine. There is some strong evidence that one performs better at mental tasks if in the same "setting" as one learned them. Thus, students who study for an exam while drinking beer test better if they have beer at exam time. This covers both internal environment, and external. They found, for instance, students who study for an exam while one foot is in a bucket of water test better if they have THE SAME foot in a bucket of water at exam time -- but not the other foot! I happen to know some students who were able to do advanced Math while on LSD, but that was in the 1960s...

#77 ::: mary ::: (view all by) ::: April 12, 2005, 01:22 PM:

"Thus, students who study for an exam while drinking beer test better if they have beer at exam time."

Thanks, Jonathan! You've just explained why my son sometimes performs poorly on tests for which he has studied diligently: no keg in the classroom.

#78 ::: Xopher (Christopher Hatton) ::: (view all by) ::: April 12, 2005, 01:37 PM:

But less well than students who studied without beer and take the test without beer. (Those who study without and test with are obviously the trailing group.)

#79 ::: mayakda ::: (view all by) ::: April 12, 2005, 03:02 PM:

I still like my family doctor's attitude when I come to see him. Knowing full well that I'm essentially healthy, he says, "What the fuck do you want?" Puts things in perspective.

That reminds me of my family dr, who is a pearl of great value. Whe trying to figure out if I really did have high blood pressure, she said "It's possible that you have white coat high blood pressure. In which case, the solution is simple: stay the hell away from me."

#80 ::: Teresa Nielsen Hayden ::: (view all by) ::: April 12, 2005, 03:39 PM:

There are too many comments I want to make here, and today I have to go off to White Plains to be rigged up with electrodes and other gadgets for an overnight sleep test.

This much, then, and more to come:

Elese: Of course side effects suck. That's because when a drug company develops a new drug, they sort out the set of all its effects, classify the saleable/desirable effects as "effects," and call the rest of them "side effects." For example, phenylpropanolamine was originally developed as a decongestant, but its side effect, appetite suppression, turned out to be much more saleable. It was repackaged as Dexatrim, the appetite suppressant that (as a side effect) also clears your sinuses.

Even if the drugs are doing something important, it still sucks to need sixteen hours of sleep a night, and to have memory loss and migraines. It isn't just arbitrary perversity that makes mental patients stop taking their meds. Those things can be nasty.

Emma, keeling over with laughter is a problem if you're on the stairs or are crossing a busy street. Some people will be upset by it no matter what you do, and others will be calm and practical no matter what, but I find that everyone in between is likelier to cope with it well if I act like it's no big deal.

It helps that what sets me off is the combination of laughter and surprise. As Debbie Notkin pointed out shortly after I was diagnosed, laughter is something you most commonly do with friends. Some narcoleptics have their cataplexy triggered by fear or anger, which can be very inconvenient. And some of them are set off by sexual arousal, which makes me think I got off easy.

One of the smartest things anybody ever said to me about narcolepsy was said by Bill Gibson: if you're stuck having a condition like this, the science fiction community is a good place to do it, because they're used to assimilating weird ideas. He was dead right. They have.

There's an old documentary film about narcolepsy called Keep Us Awake! It's full of stuff like the narcoleptic dogs at Stanford getting overexcited while playing fetch, and keeling over to go to sleep for a few seconds. It's very cute footage. However, there's also a disturbing segment about a woman with a bad case of cataplexy. Her face is absolutely wooden, because she's spent her life trying to avoid any strong emotion that might trigger it.

Maybe she has a killer case. I don't know. But when talking about it brings on the kind of strong emotion she's been trying to avoid, setting off her cataplexy, her body language looked to me like "Oh no! Oh no! I have cataplexy! I'm going to fall over!" Agitation only make it worse, of course. Then you get the woman's little daughter running in, visibly distressed and trying to figure out what she can do to help, because her mom's having cataplexy. She's taking her cues from her mother, and it's making her upset. The fact is, no very terrible things are going to happen to her mother, beyond what's happened already. They should both chill out about it. If I reacted to cataplexy like that woman, I could easily turn manageable fits of limp giggling into major collapses.

Getting upset because you have cataplexy is as counterproductive as hyperventilating because you've just been told you have asthma, or going around in a constant state of barely-suppressed fury over having high blood pressure, or grinding your teeth because you're worried about the cost of dentistry.

Once you've gotten past the novelty of having cataplexy, the only reasonable course is to sit back, admit that you have it, examine the effects it's generating, and figure out what you can do about them.

Samuel Johnson is one of my heroes, in part for his reaction to having a stroke:

"On Monday, the 16th, I sat for my picture, and walked a considerable way with little inconvenience. In the afternoon and evening I felt myself light and easy, and began to plan schemes of life. Thus I went to bed, and in a short time waked and sat up, as has been long my custom, when I felt a confusion and indistinctness in my head, which lasted, I suppose, about half a minute. I was alarmed, and prayed God, that however he might afflict my body, he would spare my understanding. This prayer, that I might try the integrity of my faculties, I made in Latin verse. The lines were not very good, but I knew them not to be very good: I made them easily, and concluded myself to be unimpaired in my faculties.

Soon after I perceived that I had suffered a paralytick stroke, and that my speech was taken from me. I had no pain, and so little dejection in this dreadful state, that I wondered at my own apathy, and considered that perhaps death itself, when it should come, would excite less horrour than seems now to attend it.

In order to rouse the vocal organs, I took two drams. Wine has been celebrated for the production of eloquence. I put myself into violent motion, and I think repeated it; but all was vain. I then went to bed, and strange as it may seem, I think slept. When I saw light, it was time to contrive what I should do. Though God stopped my speech, he left me my hand; I enjoyed a mercy which was not granted to my dear friend Lawrence, who now perhaps overlooks me as I am writing, and rejoices that I have what he wanted. My first note was necessarily to my servant, who came in talking, and could not immediately comprehend why he should read what I put into his hands.

I then wrote a card to Mr. Allen, that I might have a discreet friend at hand, to act as occasion should require. In penning this note, I had some difficulty; my hand, I knew not how nor why, made wrong letters. I then wrote to Dr. Taylor to come to me, and bring Dr. Heberden; and I sent to Dr. Brocklesby, who is my neighbour. My physicians are very friendly, and give me great hopes; but you may imagine my situation."

There's your man: wakes up, realizes he's suffered a seriously debilitating stroke, and calmly proceeds to take inventory of what's missing, what remains, and what he can do about it. The part I love best is the test he devises, and the way he evaluates the results.

Skwid: " do you feel that the increased usage of ROFL has aided in people's reactions to the cataplexy or made them more disbelieving that someone would actually have no choice in the matter?"

I can't judge that. The use of ROFL certainly keeps the image in mind, but there are other common phrases that are descriptions of cataplexy: my jaw dropped, I was paralyzed with fright, you could have knocked me over with a feather, etc.

Everybody has cataplexy once in a while. Narcoleptics just have it oftener and more severely.

Heatherly: My neurologist is a couple of hours from here. He's worth the journey.

"...having 'brain fog' because of CFIDS, I empathize so much with integration difficulties. Not only in simply dealing with the mental pea soup itself, but in trying to describe the symptoms or the experience to doctors? Frustrating beyond measure."

Amen. As it happens, I'm pretty good at observing and describing all these symptoms and mental events. I keep thinking that ought to be a plus for them. Usually, though, they interrupt me a sentence or two into it.

Aconite, the first year I taught at Viable Paradise, one of the students instantly grasped that cataplexy was a way of keeping score, and did his best to dry-mop the floor with me throughout the week.

I'd always rather hear the jokes and fall over than not hear them. At Tor, the rule is that the person who made the joke gets two points and has to help me up off the floor. A partial collapse scores one point. A three-pointer is a joke so funny that it brings on an uncontrolled fall. Those are rare and can be painful, but they're worth it. When I threw my back out for a week or two over one of Mike Ford's flashes of wit, I whimpered a little every time I had to twist or bend over -- and then giggled, remembering the joke.

Anna FDD: "In the last months I've been suffering from increased sleepiness and general stupidity and utter inability to concentrate as a side-effect of depression. I don't seem to find a doctor that takes me seriously on that front. Neurologists tell me it's psychogenic. Psychiatrists tell me that I seem to be doing OK, considering that I'm not suicidal. I explain that I can't work any longer and they just look politely helpless."

Pobrecita! If you only had a few bizarre physical symptoms to go with your real problems, they'd understand that you're in trouble and need treatment. Bastards.

Sometimes I wonder if it's a class thing: if they started treating everyone who was going through life in an exhausted haze, where would it end?

I was reminded of this a while back when I read a news story about an interesting study. You know the stress tests that ask whether you've lost a loved one, had to move, been fired or changed jobs, been injured or assaulted, had any of those things happen to someone close to you, and so on and so forth, within the last year? The logic is that people who get a high score on those tests have an increased chance of developing a serious illness.

Some researchers got to thinking about it, and realized that people who live in a state of intractable poverty are under that kind of stress all the time. They decided to try full-scale intervention treatment on some of them and see what happened, even though their test subjects hadn't been diagnosed as being especially depressed. Miraculous to tell, a surprising number of them felt much better and started pulling their lives together.

And that's why we can't treat just anyone who comes in complaining of confusion, fatigue, and general malaise. It would be as unsettling as giving the same full-scale help to the children of the poor that we give to well-to-do tots who have learning disabilities.

...More later. I'm off to see the neurologist. When next you hear from me, I'll be picking bits of electrode paste out of my hair.

#81 ::: fidelio ::: (view all by) ::: April 12, 2005, 04:44 PM:

Best of luck with the tests, and with leading the new doctor in the paths of wisdom. And with shedding the electrode paste.

#82 ::: Randolph Fritz ::: (view all by) ::: April 12, 2005, 05:13 PM:

"if they started treating everyone who was going through life in an exhausted haze, where would it end?"

Awake to emptiness...

#83 ::: ben ::: (view all by) ::: April 12, 2005, 05:57 PM:

"(I do try to be polite. In the presence of a standup comedian, I sit down.)"

For whatever reason, those statements side-by-side made me giggle a bit.

Thank you for creating a space, however ephemeral, where it's been okay to come out and say, "people say I'm bright, and I believe them, but it doesn't matter a damn if I can't hold state, and I can't hold state unless I can get treatment for this illness I didn't bring on myself."

#84 ::: CHip ::: (view all by) ::: April 12, 2005, 06:42 PM:

Some researchers got to thinking about it, and realized that people who live in a state of intractable poverty are under that kind of stress all the time.

This has been suggested in other topics here, e.g. the single mother whose son committed suicide due to bullying; I'm not surprised the researchers got results, but I'm also unsurprised by the lack of general intervention -- although there are times when the thought of an approach amounting to "This large fraction of the population needs medical help" is frightening not because the need may exist but because of some of the types (actors, not patients) who would be attracted to a mass intervention.

#85 ::: Marilee ::: (view all by) ::: April 12, 2005, 07:28 PM:

Heh. Electrode paste. When I had my sleep study a couple of years ago, it was too far away for me to drive home after so little sleep (they kicked you out at 6am) so I got a hotel room nearby and stayed there until the time for the test. When I went back to the hotel, I found it full of business people checking out and staring at the electrode paste in my hair. I showered and went to bed for a while before I checked out.

(No sleep apnea, no snoring. I wake up frequently during the night and go right back to sleep, but I know why that happens and it doesn't have anything to do with being sleepy all the time, which was solved by moving the Prozac to nights.)

#86 ::: Chris ::: (view all by) ::: April 13, 2005, 06:08 AM:

I hope your day in White Plains went OK: evoked potentials and EEGs can make you feel like you're on both sides of Mystery Science Theater.

I'm also glad about the new neuro. Over 20+ years with multiple sclerosis, I've had something along the lines of 12 neuros and put them in three categories: good auto mechanic, bad auto mechanic, and fully integrated human being. The best of that last category are often completely overwhelmed with patients.

As for the drugs, I trust modafinil is one? It has sort of changed my life, in the 8 months or so I've been taking it - you mean MS fatigue doesn't have to rule my life? The cognitive stuff is far trickier, of course.

And I secomd/third all those who tell you that your prose style is far cleaner and more salient than you fear.

#87 ::: Tina ::: (view all by) ::: April 14, 2005, 07:58 AM:

Belatedly, I am glad to hear that you have found a new doctor and things are looking up. Less belatedly: 20 years after my one and only sleep study I still remember what a big pain it was to get the electrode paste out of my hair. Which is completely trivial, but about the only point on which I fully understand what you're going through. I can empathize with the rest, though, and I really admire the matter-of-fact way you approach it, and, as others have said in other ways, how gosh-darn together you are for someone who isn't functioning where they ought to be. That's Coping.

I'd offer you about half my insomnia to counteract the narcolepsy if it were that simple, though. :/

#88 ::: mayakda ::: (view all by) ::: April 14, 2005, 09:55 AM:

I remember my 2yo having electrode paste in her hair but I don't remember what I used to get it off. Baby oil, probably.

Thanks for sharing the Samuel Johnson excerpt. That is amazing.

#89 ::: Metal Fatigue ::: (view all by) ::: April 14, 2005, 10:58 AM:

Make sure to use extra conditioner. Last time I had a sleep study, the electrode paste left patches of frizziness.

#90 ::: Marilee ::: (view all by) ::: April 14, 2005, 06:20 PM:

Maybe they've changed electrode paste, mine came right out with shampoo. I'd never had a sleep study before, but I knew it incorporated an EEG, of which I've had plenty, but somehow I completely forgot about going home with the paste in my hair. I would have taken a scarf if I'd remembered.

(oooh, ahhh, Peapod is here, time to put groceries away)

#91 ::: Lydia Nickerson ::: (view all by) ::: April 15, 2005, 06:16 PM:

When I was in for my fourth(!) sleep study this January, the tech mentioned that the electrode paste had been significantly improved and it would wash right out. She was right, it did.

Mind, it was a two day study, so I had to wander around the hospital for a day with electrodes still stuck to my head, and a braid of wires that came down my back and over my shoulder, and my hair the most awful, bird's nest you've ever seen.The hospital workers didn't bat an eye, but other people in the cafeteria looked rather horrified. I think they must have thought I had a fatal disease. I didn't mind the staring, but the cafeteria food was truly terrible. I ended up going to Mcdonalds, even though the cafeteria food was free. I mean, how can you screw up iceberg lettuce and blue cheese dressing?

#92 ::: Mary Aileen Buss ::: (view all by) ::: April 15, 2005, 06:59 PM:

how can you screw up iceberg lettuce and blue cheese dressing?

Limp and/or brown around the edges and all the wrong seasonings, respectively?

--Mary Aileen

#93 ::: Senseless ::: (view all by) ::: April 15, 2005, 08:08 PM:

You really have my sympathy in having to deal with Doctors.

At the time of my accident, the loss of my scalp was always the number one topic reguardless of why I actually made an appointment.

"You say your shoulder, elbow and wrist hurt? You try and pick up something and have a sharp pain and drop whatever it was you were picking up?..... Well that's interesting, let me see how well your scalp is healing."

I had numerous other injuries, and the loss of my scalp was the most life threatening, but if I made an appointment to be sure my arm isn't damaged, and my scalp is already being treated, then please humor me and look at my arm!

The worse part is that my injury severely effected my speech. It takes longer to get a thought out, and I tend to mix up words. My now 15 minute attention span made me think the injury was very similar to an extreme case of ADD. Maybe a medication to treat that could benifit me, but twice I made an appointment to see if that was an option, and both times instead of saying "Would a med for ADD benifit me", I accidently asked if a med for Alzhiemers might help. That led to a brief discussion on the fact that my injury could not be similar to someone with Alzhiemers because the latter is caused by plaque or something, and there is no point in continueing this conversation, but opened the door once again for the perpetual question, "Let me see how your scalp is healing?"

I wish you the very best in your hunt for a good physician!

#94 ::: Jonathan Vos Post ::: (view all by) ::: April 15, 2005, 08:09 PM:

Seriously, has anyone here seen this, who can tell us more?

Hakase No Aishita Sushiki (The Mathematical Formula Loved by a Professor) (2004)
Yoko Ogawa

In this Japanese novel (winner of the Yomiuri Literary Prize), a young single mother is hired to care for a famous mathematician who is suffering from long-term memory loss caused by an accident. Despite the mathematician's anti-social behavior, the woman studies mathematics in order to understand him better.

#95 ::: kate ::: (view all by) ::: April 16, 2005, 02:37 AM:

Huh. Did they tell you you had a "mild" brain injury, Senseless? (Talk about your misleading definitions.) You've probably done all the reading yourself, but the thing is that sort of injury often affects executive function (organizing thoughts, concentrating, getting the sequence of events right when doing stuff, getting started on doing stuff, etc etc) and also, among other things, produces (relatively) mild aphasia. (No, I know I'm not telling you anything new.)

Given as AD(H)D is, so far as they can figure, caused by neurotransmitter problems, and not actual physical brain injury, I wouldn't think it'd make sense to give you stimulants, but who knows. Your doctors sure don't, given as they're not /paying attention/ to you.

(Have you taken to writing your questions down before you go to medical appointments? I do that, and I don't even have aphasia.)

#96 ::: Jonathan Vos Post ::: (view all by) ::: April 16, 2005, 02:46 AM:

David Letterman tonight referred to the New York City subways as "the Bipolar Express."

#97 ::: P J Evans sees comment spam ::: (view all by) ::: October 24, 2006, 10:00 PM:

Holly, Hayden and Paula all talking about how nice the site is and pushing their own pages (with random-letter names).

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