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April 5, 2005

Minor housekeeping note
Posted by Teresa at 09:15 AM * 72 comments

My problems with my narcolepsy medications, referred to here some while back, have not been cleared up. Instead, they’ve gotten worse and weirder.

I live in hope of some constructive resolution of these matters, in much the same spirit that subway riders, who always get told “thank you for your patience” at the end of PA announcements explaining why their train has been stalled in the dark for twenty minutes, will have actually been waiting in patience.

In the meantime, the continuing forecast calls for slow writing and lots of little textual and HTML glitches. Please be patient.

Addendum: Patrick and I just now managed to simultaneously Particle and Sidelight the same item. I knew we’d do that one of these days. The item is Patricia Storms’ The Amazing Adventures of Lethem & Chabon, which I heard about from Marc Laidlaw.

Comments on Minor housekeeping note:
#1 ::: jennie ::: (view all by) ::: April 05, 2005, 09:44 AM:

I'm sorry to hear "worse and weirder." Best wishes for better meds, and soon.

#2 ::: Georgiana ::: (view all by) ::: April 05, 2005, 10:12 AM:

How utterly frustrating for you. I'm very sorry.

#3 ::: Anna Feruglio Dal Dan ::: (view all by) ::: April 05, 2005, 10:17 AM:

Oh no. Oh no.

#4 ::: Jill Smith ::: (view all by) ::: April 05, 2005, 10:20 AM:

Positive thoughts flowing up from the South. Best wishes for a better outcome.

#5 ::: Beth ::: (view all by) ::: April 05, 2005, 10:31 AM:

Oh no!

::thinks strong positive thoughts for Teresa::

In the hope that cute animal pictures might prove cheering, here is a picture of my new kitten. His name will be Moose, we think.

#6 ::: Ronit ::: (view all by) ::: April 05, 2005, 10:38 AM:

That's a damn shame. I'm so sorry.

#7 ::: Kimberly ::: (view all by) ::: April 05, 2005, 10:39 AM:

Oh no. Teresa, my high-maintenance-asthma medication-induced empathy is extreme.
This is a terrible thought--but when my asthma meds get all squiggled, I just get so tired, tired above and beyond the exhaustion that comes of not being able to breathe. Just exhausted from trying to fix it. And I was thinking, "Gods, I would be so tired if it were me..." and then I thought, "Well, I have asthma, but Teresa's got narcolepsy."

Tired, indeed.

Many good thoughts for chemical balance and coping fairies.


#8 ::: sdn ::: (view all by) ::: April 05, 2005, 10:44 AM:

oh, fuck. i love you. is there anything i can do to help? i am serious.

#9 ::: mayakda ::: (view all by) ::: April 05, 2005, 10:47 AM:

Well, that sucks. :(
Oh, I read this short in Pop Sci, which says they've been noticing that brain MRI's have an anti-depressant effect on people and on stressed rats. Any chance of getting an MRI? It might not help the narcolepsy, but maybe it would make you feel better for little bit. *weak grin*

#10 ::: Madeleine Robins ::: (view all by) ::: April 05, 2005, 11:01 AM:

Oh hell. I'm sorry, Teresa. May one at least hope that there are scores of highly paid scientists working to resolve the difficulty and get you chemically straightened out?

#11 ::: Kate Nepveu ::: (view all by) ::: April 05, 2005, 11:02 AM:

If there's anything I can do that would be helpful, please don't hestitate to say so.

#12 ::: Jo Walton ::: (view all by) ::: April 05, 2005, 11:18 AM:

What Sharyn said, exactly.

Can I send you any cheap drugs from Canada?

#13 ::: Alex Cohen ::: (view all by) ::: April 05, 2005, 11:23 AM:

You have, no joke, given me an anxiety attack that has lasted all morning. Please be okay.

#14 ::: Epacris ::: (view all by) ::: April 05, 2005, 11:41 AM:

Oh dear, one was hoping that no news on that side was good news.

At least with your connexions around the globe, you can be sure of positive, hopeful thoughts arriving from all directions at all hours, like a happy sort of cocoon being woven. (I'm reminded of the faeries setting up Titania's bed for the evening.)

#15 ::: Alex Cohen ::: (view all by) ::: April 05, 2005, 11:47 AM:

(I'm reminded of the faeries setting up Titania's bed for the evening.)

No, no! Are you crazy? We are not doing that. We are, urr, faeries brewing doppio espresso lattes for Titania. And we're poking Teresa. Poke! Poke! Don't be sleepy!

#16 ::: Georgiana ::: (view all by) ::: April 05, 2005, 11:56 AM:

I know some of us are serious insomniacs. Couldn't we upload some of our insane sleeplessness and download some of Theresa's excessive sleepiness?

#17 ::: PiscusFiche ::: (view all by) ::: April 05, 2005, 12:31 PM:

I'm sorry to hear that your narcoleptic woes are still hanging heavy. I wish I knew something that could help....

#18 ::: Lois Fundis ::: (view all by) ::: April 05, 2005, 12:37 PM:

More good thoughts from here, Teresa.

(And Beth, that's an adorable kitty!)

#19 ::: Debbie Notkin ::: (view all by) ::: April 05, 2005, 12:48 PM:

Joining the Sharyn bandwagon ...

Ask if you need something, please! Or get someone to ask for you.

#20 ::: Dan Hoey ::: (view all by) ::: April 05, 2005, 12:54 PM:

Teresa, I'm very sorry to hear this is happening. Most of what I know about narcolepsy I read in Making Book, and at that time you seemed to be struggling in the dark for a solution that might not even exist. Since then, you attained years of what appears to be a reasonably controlled life, and then there was that messed up dosage (and all the illnesses, and all the stress, and all the other shit). I can't tell whether you are back to the numb struggle, or clawing yourself up to the acceptable life style, but I hope you can find the energy that you applied to the task in years past. Remember you got on top of it once, and take heart from that victory.

I will sing power chants for you. Please make taking care of yourself your priority. Use the slow writing and the groping through darkness to that end, the recovery. That is what you need your energy for. The rest will wait for when you are well.

Of course, there are times when you just have to wait for the healing, and if working and writing helps pass the waiting, I'm not telling you to stop. Just that it's easy to let the things you know how to do crowd out the hard, uncertain, and ambiguous work you need to do.

I hope some of this helps. Get well soon.

#21 ::: Sal ::: (view all by) ::: April 05, 2005, 01:08 PM:

Best thoughts tossed your way from California. Most of what I know of narcolepsy comes from Making Book which I recently handed off to the older younger guy after making him promise to give it back when he's done.

May the meds be fixed and you return ... soon.

#22 ::: Suzanne M ::: (view all by) ::: April 05, 2005, 01:08 PM:

Oh, hell.

I'm mostly a lurker, but I'm very sorry to hear about this trouble. I hope things start improving soon.

As always, if there's anything we nearly-anonymous blog readers can do to help, aside from keeping you in our thoughts and prayers, you need only ask.

#23 ::: Mris ::: (view all by) ::: April 05, 2005, 01:16 PM:

Sympathy, sympathy. Sleep disorders suck.

#24 ::: Vicki ::: (view all by) ::: April 05, 2005, 01:38 PM:

Best of luck for improvements.

#25 ::: Randolph Fritz ::: (view all by) ::: April 05, 2005, 01:44 PM:

Sympathies.

#26 ::: Christina Schulman ::: (view all by) ::: April 05, 2005, 01:51 PM:

I'm very sorry to hear that. It sounds like sleeping through the Bush administration is a better idea in theory than in execution.

#27 ::: BSD ::: (view all by) ::: April 05, 2005, 02:05 PM:

Buggration. Few things are worse than psychotropic meds you know are ALMOST right (so you can't just go off them) but are just wrong ENOUGH to be nastily unpleasant. I know this from personal and immediate-witness experience, so you (and Patrick, and everyone else who is close to you) have my sympathy.

#28 ::: elise ::: (view all by) ::: April 05, 2005, 03:06 PM:

Dang it. Extreme good med-luck wishes en route. Will be thinking of you.

Also, I owe you e-mail.

#29 ::: Claude Muncey ::: (view all by) ::: April 05, 2005, 03:11 PM:

You remain in our prayers, Teresa.

#30 ::: Michael Weholt ::: (view all by) ::: April 05, 2005, 03:23 PM:

Damn. I've always thought of sleep as Kindly Old Grampa Slumber. What a nightmare it must be to have Twisted Grandfather Stupor in your family, always after the little one. I hope the police come and arrest him for you soon. He needs to be put where he belongs.

#31 ::: Emma ::: (view all by) ::: April 05, 2005, 03:42 PM:

My sympathies. I have massive insomnia, and have had since childhood, and have given up on medication; mostly it makes me muzzy (somewhere between muddy and fuzzy), so I know a little of the troubles sleep disorders bring. But mine is as a gentle rain to your hurricane. Hope it gets straightened out SOON!

#32 ::: Skwid ::: (view all by) ::: April 05, 2005, 03:49 PM:

Just adding to the general cry of "Crapola." I've developed sufficient coping mechanisms that I (more or less) don't need to medicate my attention disorder, which is a blessing. I'm very sorry to hear that a solution wasn't forthcoming past the (obviously) temporary fix you'd found when we talked at ConDFW, and wish you the best of luck in your search.

Hard to believe that you'd be having this much trouble in The City...seems like that's the sort of place people usually have to go to resolve those kinds of troubles...

Patrick, please take care of everyone's favorite Loris as best as possible, in the meantime!

#33 ::: Michael Weholt ::: (view all by) ::: April 05, 2005, 03:53 PM:

Patrick and I just now managed to simultaneously Particle and Sidelight the same item. I knew we’d do that one of these days.

Funny you should mention that. I've always wondered how you kept it from happening.

I'd imagined negotiations lasting deep into the night. Clocks stopped just before midnight. Brief, cryptic statements to the press. Then the two of you emerging, bleary-eyed, onto the steps of Union Hall and waving in the light of dawn an agreement bearing both your signatures. Mimosas and bagels all around.

Well, I guess not.

#34 ::: Andy Perrin ::: (view all by) ::: April 05, 2005, 04:06 PM:

That's not good. (A completely inadequate phrase, I know, but I mean it sincerely.) I hope you get better, for whatever value of better it's reasonable to hope for.

#35 ::: charlie ::: (view all by) ::: April 05, 2005, 04:07 PM:

Some people have reported success with 2 gm/dy inositol (a B vitamin), folic acid (B vitamin), chromium polynicotinate and magnesium oxide. If your metabolism doesn't absorb any of these well, your brain will hit the snooze button: you need to supplement to make up for malabsorption. I don't know if it will work for you. Send your dear husband to a nutrition store and try it for a month. It shouldn't mess with your other meds, so it's worth a try.

Offered in the spirit of a helpful friend and a longtime reader. Your wonderful skill with words brightens my days. Thanks.

#36 ::: Xopher (Christopher Hatton) ::: (view all by) ::: April 05, 2005, 04:11 PM:

I've been putting off commenting to this thread, hoping I could come up with something better than "That sucks, and you're in my thoughts." Which is better than nothing, but it's frustrating not to be able to help. Not, I'm sure, as frustrating as not being able to BE helped.

I can offer the best advice I ever got for this sort of situation: Do not despair. It may seem sensible, but it never helps.

#37 ::: Alex Cohen ::: (view all by) ::: April 05, 2005, 04:51 PM:

It may seem sensible, but it never helps.

And never turn into a snake.

#38 ::: Charlie Stross ::: (view all by) ::: April 05, 2005, 04:53 PM:

Please be okay.

(Lots of sympathy here: I'm suddenly adjusting to finding myself on medication for life, and having to go back to a consultant for monthly adjustments, and it's no fun even when the stuff works, sorta-kinda. Can barely imagine what it must be like when it doesn't ...)

#39 ::: Victor Raymond ::: (view all by) ::: April 05, 2005, 05:15 PM:

Oh, no. I hope things improve for you soon, Teresa.

#40 ::: Xopher (Christopher Hatton) ::: (view all by) ::: April 05, 2005, 05:43 PM:

Alex: for shame. Besides, turning into a giant snake might actually HELP Teresa.

Think about it.

#41 ::: Mitch Wagner ::: (view all by) ::: April 05, 2005, 05:52 PM:

Teresa, I'm sorry your health hasn't improved.

#42 ::: Henry ::: (view all by) ::: April 05, 2005, 06:15 PM:

Very sorry to hear this. Get OK soon.

#43 ::: Steve Taylor ::: (view all by) ::: April 05, 2005, 09:30 PM:

Bugger. That's rotten. Hope things get better really soon.

#44 ::: Mary Dell ::: (view all by) ::: April 05, 2005, 09:34 PM:

Oh, that sucks. When I find myself in the dark tunnel (my tunnel is named "PTSD") it helps to walk around the house going "hey God, where's my fucking window?" or "yeah, I got your lemonade right here!"

But I derive joy from sarcasm. YMMV. Hang in there...I hope something improves soon.

#45 ::: Mary Dell ::: (view all by) ::: April 05, 2005, 09:42 PM:

p.s. please, do not interpret the link I just posted as meaning that I adhere to the feel-goody-affirmation school of life wrangling. I offer the link purely in a spirit of sarcasm.

#46 ::: Marilee ::: (view all by) ::: April 05, 2005, 10:06 PM:

I hope science catches up with humans soon!

#47 ::: Tom Whitmore ::: (view all by) ::: April 06, 2005, 12:34 AM:

I send best med wishes too (and a wish that I could spend about a month trying visceral massage techniques with you to see if that would balance things better).

Beth, that is indeed an exceptionally cute kitten.

#48 ::: Bill Humphries ::: (view all by) ::: April 06, 2005, 03:05 AM:

You're in my thoughts, and I hope your doctors can get your medical stuff sorted out soon.

#49 ::: pericat ::: (view all by) ::: April 06, 2005, 03:28 AM:

I don't know if turning into a snake would help, but speaking just for myself I couldn't turn down the opportunity, if it came knocking. Slithering.

I think I'd miss my toes, though.

(Quickening loris thoughts from the other coast, to join with all the other good wishes.)

#50 ::: David Goldfarb ::: (view all by) ::: April 06, 2005, 04:01 AM:

I have little to add beyond "what they said" -- you're in my thoughts, and I hope things get better for you.

#51 ::: Jonathan Vos Post ::: (view all by) ::: April 06, 2005, 06:06 AM:

Teresa, my family and I hope that all turns out for the best. We note that there are more and more people in the world who must be medicated for the rest of their lives, for viral, neurological, vascular, or other reasons. All the extraterrestrials will need to do, if this goes on, is to crash the pharmaceutical databases...

To remake that Twilight Zone episode, surviving the nuclear apocalypse in the bank vault, the danger is not in breaking your eyeglasses on the steps of the library, but in not being able to find those essential pills...

Please feel better. The party beseeches the hostess, without whom we can't enjoy her hospitality.

#52 ::: jane ::: (view all by) ::: April 06, 2005, 07:53 AM:

Having just seen and hugged you in person, I want to reiterate the sharyn plea right here in your blog: let me know if there's anything I can do to help, ie kneecap a doctor, the gummint, or the stars. Or conversely send chocolate, jujubes, or thin mints. Or just hold you and Patrick in my heart.

Jane

#53 ::: Bill Blum ::: (view all by) ::: April 06, 2005, 08:47 AM:

Mary wrote:
p.s. please, do not interpret the link I just posted as meaning that I adhere to the feel-goody-affirmation school of life wrangling. I offer the link purely in a spirit of sarcasm.

Having been subjected to the 'feel-goody' nonsense associated with the various -anon organizations while I was growing up (thanks to familial involvement), I find it hard to keep a straight face when I come across some of the slogans.

#54 ::: Suzanne ::: (view all by) ::: April 06, 2005, 10:59 AM:

Good thoughts also heading your way from western Massachusetts. For the first time this year I heard spring peepers last night. I would share with you the joy and energy I derived from that, if only I could.

Hang in there. Winter is quickly fading away, and as the days get brighter outside, hopefully brighter times will also come for us inside (-:

#55 ::: Mac ::: (view all by) ::: April 06, 2005, 12:21 PM:

good thoughts coming to you from the woodsy Pacific NW, also.

Wishing you all the best; also, rapid stabilization and speedy recovery to your usual, vibrant, on-line "self"

#56 ::: Jeremy Osner ::: (view all by) ::: April 06, 2005, 02:28 PM:

Mary's post inpires sickly humorous thoughts of the Narcoleptics Anonymous meeting down at the Y every Thursday... Theresa, I wish you good results and hope things shape up for you quick.

#57 ::: Lenora Rose ::: (view all by) ::: April 06, 2005, 02:55 PM:

Xopher, if Tersa turned into a snake, we wouldn't hear from her ALL WINTER!

Teresa, best wishes. I hope those working on your meds find the breakthrough soon.

#58 ::: Lenora Rose ::: (view all by) ::: April 06, 2005, 02:55 PM:

Xopher, if Teresa turned into a snake, we wouldn't hear from her ALL WINTER!

Teresa, best wishes. I hope those working on your meds find the breakthrough soon.

#59 ::: Lenora Rose ::: (view all by) ::: April 06, 2005, 02:56 PM:

Darn. I thought it hadn't posted.

#60 ::: Xopher (Christopher Hatton) ::: (view all by) ::: April 06, 2005, 03:00 PM:

Lenora Rose, I was thinking about the ability to turn into a giant snake. At, say, the doctor's office. "I'm ssssure you will now conssssent to write the necessssssary presssscriptionsssss!"

#61 ::: Jonathan Vos Post ::: (view all by) ::: April 06, 2005, 03:21 PM:

Loris speaks with forked tongue. Pictures at 11.

#62 ::: Deborah Green ::: (view all by) ::: April 06, 2005, 04:37 PM:

I hope things turn around soon.

#63 ::: Michelle K ::: (view all by) ::: April 06, 2005, 04:47 PM:

Please be well.

#64 ::: Linkmeister ::: (view all by) ::: April 06, 2005, 09:43 PM:

Warm alohas from Hawai'i.

#65 ::: Barbara Gordon ::: (view all by) ::: April 07, 2005, 01:55 AM:

As above. What they said. And another offer of cheap drugs from Canada if they would be at all useful.
A cool rock is in the mail to you (rhodonite). I looked up its alleged therapeutic qualities but none of them seem to be particularly needed (patience? confidence? good hearing?). It's kind of pretty though.

#66 ::: Anarch ::: (view all by) ::: April 07, 2005, 02:32 AM:

Another well-wisher here. Keep us posted if you feel inclined; we're all rooting for you.

#67 ::: Paul Clarke ::: (view all by) ::: April 07, 2005, 11:28 AM:

My sympathies; I hope you find a solution.

#68 ::: rhc ::: (view all by) ::: April 07, 2005, 02:00 PM:

I'm sorry to hear that, Teresa. Your blog is a bright spot in my day.

#69 ::: jon singer ::: (view all by) ::: April 07, 2005, 03:41 PM:

No idea whether this is appropriate, nor whether it's compatible with the things you're already taking, but it's worth looking into: go to PubMed and type the words

carnitine lipoic

into the search field. Most of the work has been in rats, but recently some studies in humans are coming up, and they look pretty good. Remember, though, that you have to take GRAMS of acetyl-L-Carnitine per day -- a few hundred milligrams isn't going to do a thing; that plain-ol' Carnitine is NOT the same, and won't do what you want; and that you have to balance the amounts of ALC and Lipoic Acid. (I think I recall something about 600 mg of ALA/day, but don't trust me on that.) Seth Breidbart has just mentioned K-ALA (the potassium salt) to me, but I haven't had a chance to look into it yet. I think the deal is that it's more stable.

Hope this is helpful, or at least interesting --
jon

#70 ::: Mary Kay ::: (view all by) ::: April 07, 2005, 05:02 PM:

Well shucks. Just this past weekend some of us were speculating that your increased posting was a result of getting meds and stuff straightened out. I'm darned sorry to hear we were wrong. As you know Bob, I've had psychotroopic drug problems myself and I'm deeply deeply sympathetic. Would that could help!

MKK

#71 ::: Tiger Spot ::: (view all by) ::: April 08, 2005, 11:26 AM:

"Worse and weirder." That's not good at all. I hope everything gets straightened out, and you turn into a speedy quick loris.

I feel a little odd about asking this, in a possibly-leaning-over-to-look-at-the-train-wreck kind of way, but what does "weirder" mean in this context?

#72 ::: Eimear Ní Mhéalóid ::: (view all by) ::: April 08, 2005, 12:22 PM:

Sorry to hear this. Hope it gets sorted.

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