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

Posted April 5, 2005 9:44 AM by jennie

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

Posted April 5, 2005 10:12 AM by Georgiana

Oh no. Oh no.

Posted April 5, 2005 10:17 AM by Anna Feruglio Dal Dan

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

Posted April 5, 2005 10:20 AM by Jill Smith

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.

Posted April 5, 2005 10:31 AM by Beth

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

Posted April 5, 2005 10:38 AM by Ronit

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.

Posted April 5, 2005 10:39 AM by Kimberly

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

Posted April 5, 2005 10:44 AM by sdn

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*

Posted April 5, 2005 10:47 AM by mayakda

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?

Posted April 5, 2005 11:01 AM by Madeleine Robins

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

Posted April 5, 2005 11:02 AM by Kate Nepveu

What Sharyn said, exactly.

Can I send you any cheap drugs from Canada?

Posted April 5, 2005 11:18 AM by Jo Walton

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

Posted April 5, 2005 11:23 AM by Alex Cohen

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.)

Posted April 5, 2005 11:41 AM by Epacris

(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!

Posted April 5, 2005 11:47 AM by Alex Cohen

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?

Posted April 5, 2005 11:56 AM by Georgiana

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

Posted April 5, 2005 12:31 PM by PiscusFiche

More good thoughts from here, Teresa.

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

Posted April 5, 2005 12:37 PM by Lois Fundis

Joining the Sharyn bandwagon ...

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

Posted April 5, 2005 12:48 PM by Debbie Notkin

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.

Posted April 5, 2005 12:54 PM by Dan Hoey

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.

Posted April 5, 2005 1:08 PM by Sal

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.

Posted April 5, 2005 1:08 PM by Suzanne M

Sympathy, sympathy. Sleep disorders suck.

Posted April 5, 2005 1:16 PM by Mris

Best of luck for improvements.

Posted April 5, 2005 1:38 PM by Vicki

Sympathies.

Posted April 5, 2005 1:44 PM by Randolph Fritz

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

Posted April 5, 2005 1:51 PM by Christina Schulman

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.

Posted April 5, 2005 2:05 PM by BSD

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

Also, I owe you e-mail.

Posted April 5, 2005 3:06 PM by elise

You remain in our prayers, Teresa.

Posted April 5, 2005 3:11 PM by Claude Muncey

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.

Posted April 5, 2005 3:23 PM by Michael Weholt

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!

Posted April 5, 2005 3:42 PM by Emma

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!

Posted April 5, 2005 3:49 PM by Skwid

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.

Posted April 5, 2005 3:53 PM by Michael Weholt

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.

Posted April 5, 2005 4:06 PM by Andy Perrin

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.

Posted April 5, 2005 4:07 PM by charlie

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.

Posted April 5, 2005 4:11 PM by Xopher (Christopher Hatton)

It may seem sensible, but it never helps.

And never turn into a snake.

Posted April 5, 2005 4:51 PM by Alex Cohen

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 ...)

Posted April 5, 2005 4:53 PM by Charlie Stross

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

Posted April 5, 2005 5:15 PM by Victor Raymond

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

Think about it.

Posted April 5, 2005 5:43 PM by Xopher (Christopher Hatton)

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

Posted April 5, 2005 5:52 PM by Mitch Wagner

Very sorry to hear this. Get OK soon.

Posted April 5, 2005 6:15 PM by Henry

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

Posted April 5, 2005 9:30 PM by Steve Taylor

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.

Posted April 5, 2005 9:34 PM by Mary Dell

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.

Posted April 5, 2005 9:42 PM by Mary Dell

I hope science catches up with humans soon!

Posted April 5, 2005 10:06 PM by Marilee

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.

Posted April 6, 2005 12:34 AM by Tom Whitmore

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

Posted April 6, 2005 3:05 AM by Bill Humphries

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.)

Posted April 6, 2005 3:28 AM by pericat

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

Posted April 6, 2005 4:01 AM by David Goldfarb

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.

Posted April 6, 2005 6:06 AM by Jonathan Vos Post

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

Posted April 6, 2005 7:53 AM by jane

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.

Posted April 6, 2005 8:47 AM by Bill Blum

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 (-:

Posted April 6, 2005 10:59 AM by Suzanne

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"

Posted April 6, 2005 12:21 PM by Mac

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.

Posted April 6, 2005 2:28 PM by Jeremy Osner

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.

Posted April 6, 2005 2:55 PM by Lenora Rose

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.

Posted April 6, 2005 2:55 PM by Lenora Rose

Darn. I thought it hadn't posted.

Posted April 6, 2005 2:56 PM by Lenora Rose

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!"

Posted April 6, 2005 3:00 PM by Xopher (Christopher Hatton)

Loris speaks with forked tongue. Pictures at 11.

Posted April 6, 2005 3:21 PM by Jonathan Vos Post

I hope things turn around soon.

Posted April 6, 2005 4:37 PM by Deborah Green

Please be well.

Posted April 6, 2005 4:47 PM by Michelle K

Warm alohas from Hawai'i.

Posted April 6, 2005 9:43 PM by Linkmeister

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.

Posted April 7, 2005 1:55 AM by Barbara Gordon

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

Posted April 7, 2005 2:32 AM by Anarch

My sympathies; I hope you find a solution.

Posted April 7, 2005 11:28 AM by Paul Clarke

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

Posted April 7, 2005 2:00 PM by rhc

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

Posted April 7, 2005 3:41 PM by jon singer

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

Posted April 7, 2005 5:02 PM by Mary Kay

"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?

Posted April 8, 2005 11:26 AM by Tiger Spot

Sorry to hear this. Hope it gets sorted.

Posted April 8, 2005 12:22 PM by Eimear Ní Mhéalóid