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Was wondering why I have been feeling so crummy and off-balance emotionally today.

Today is the ninth of May. Six months ago, December 6th, was the day we found out that Penny was riddled with cancer, when they did the CT scan and found the tumors. So it's been muttering about the back of my mind. And, I had to go back to the hospital - to the doctor's office - today.

I saw the neurologist I had been referred to. I've been using Provigil to moderate my narcolepsy for about five years now. It keeps my baseline alertness levels up and helps me function, without the wired-buzzy edge that Ritalin gives me.
So, around January of 2004 I realized that I was still having episodes of EDS (excessive daytime sleepiness) but I was able to deal with them by taking naps, by sleeping in late every other day. At Intel, it was also a problem, but there, I dealt with it by going to a quiet place outdoors and taking a 15 minute nap, and it wasn't an issue. Strangely enough, at Tek, there isn't such a place. If there was, I would schedule 30 minutes at 2:30, every day, and I wouldn't have any trouble.

I learned that in the seven years since they've known exactly what causes narcolepsy - lack of a particular neurotransmitter due to autoimmune processes that kill the cells that make it - for some reason, there's been no progress whatsoever on a drug to supplement that neurotransmitter. The treatment is still Provigil or Ritalin or dextromethamphetamine. Yay. Provigil, which doesn't do enough, or speed. So he suggested small doses of ritalin in the afternoon, so I have a new prescription. I'll try it with one or two of my remaining pills from when I went off the stuff, and if it works, fantastic.

Left work early today, though - I had reflux, that somehow crawled up to behind my eyes and throbbed, making it hard to focus on the screen. I'm told by a co-worker that this is exactly how his migraines were working.

I also made a loaf of lovely bread-machine bread, which I will have to give away - it's tasty, but it contains a half can of finely diced chipotle pepper, which tends to go all hot and spicy in my stomach. Not what I need when the reflux is refluxing.

Comments

( 9 comments — Leave a comment )
invisiblewolf
May. 10th, 2006 04:49 am (UTC)
Crap. Anniversaries like that are just horrible. *hug*

Interestingly, when I was living in Seattle, I went out on a date or two with a guy who was also narcoleptic. He was working in the biomedical industry as a research chemist, though I don't believe he was working on a solution to his own problem. Come to think of it, I think he said he was working on a 'better' version of Viagra.

Ah well.

-Spiritwolf.
foomf
May. 10th, 2006 05:14 am (UTC)
I assume he wasn't experimenting on himself :)


There are a number of drugs that work better than viagra at what viagra does, but they've got these "side effects" that aren't very nice at all.
foomf
Jul. 11th, 2006 07:17 pm (UTC)
Hm. This reply just arrived today (July 11th).

I miscounted, too. It was only 5 months.

Tomorrow and Thursday will be bad - six months from the day she left. I'm working hard on being glad for her that she's no longer in the prison of a body that wouldn't work, and that she was called because there was something she was needed for, and that she went into joy, all things confirmed by prophetic dreams (mine and others). I think it's mostly the loss of what could-have-been.
kjc
May. 10th, 2006 04:51 am (UTC)
I tried Provigil once. I don't think I'm narcoleptic, but I have trouble falling asleep, my sleep is often non-restful, and it's nearly impossible for me to wake up. I did a sleep study and they found nothing. So the sleep specialist gave me a 'scrip for Provigil.

Anyway, after I took one pill, I couldn't sleep for 36 hours. Then I decided to stay up a little while longer so I didn't invert my sleep patterns. Unfortunately, that made me sick.

See, I used to get these horrible, absolutely debilitating digestive attacks where I'd be in agony (whimpering, panting, unable to cry or read or so anything really) lasting for anywhere from 8 to 40 hours. Four doctors (two GPs, two digestive specialists) failed to diagnose it (though they proscribed a variety of different things). I finally figured out myself: it was a combination of reflux and gas. Maybe I twisted some portion of my intenstine? I don't know. But OTC anti-acid plus anti-gas fixed the pain when it would threaten and now I just don't have them anymore. They stopped as mysteriously and randomly as they started. Fuckin' weird.

My point? Oh, yeah. I did have a point. Medicine goes where the money is. Right now the money's in acid reflux and insomnia. There's no money in too much sleep, only in not enough. Also, there are no real doctors like HOUSE who figure out all the different and conflicting conditions and imbalances we have. We have to do it ourselves, without medical degrees. And that really bites. You have my sympathies.
foomf
May. 10th, 2006 05:11 am (UTC)
Provigil is very popular with the military right now. See, for people who have normal sleep function, one 200MG dose of provigil a day means you can go for three or four days without NEEDING SLEEP AT ALL. And that means, no reduced capacity. No hallucinations, no drowsing off, no spiders around the edges of reality, and here's the kicker: After the end of the prolonged awake period, eight hours puts them right back to normal.

Wish it worked that nicely for me :)

There's a LOT of money in treating narcolepsy, but in the US, there's also a 10 year ghastly expensive process required to get a drug cleared.

It protects us from fraud, but also from useful and legitimate medications, like the sunscreens you can get in Europe that actually work for more than six hours without washing off.
kjc
May. 10th, 2006 05:17 am (UTC)
Hmm. I wonder what my dosage was. I should check.

Any idea if not responding to it properly is an indicator of anything?

foomf
May. 10th, 2006 05:31 am (UTC)
Nope, they don't know how exactly it works yet.

The dosage was probably 200 mg, which is the standard for everyone.
foomf
May. 10th, 2006 05:13 am (UTC)
I assume, by the way, that they checked you for breathing obstructive things? Have you tried melatonin OTC tablets? They help some people who have trouble getting to sleep.
kjc
May. 10th, 2006 05:15 am (UTC)
Yes, that was part of the sleep study (though I barely managed two sleep periods with all the wires and crap attached to me).

I didn't think it would be that - I have no tonsils or adenoids and I don't snore much. No one who's observed me sleeping (more than one person, surprisingly enough) has noticed apnea.

I haven't tried melatonin. I should ask my drug people if it'd be ok with the cocktail I'm currently taking.
( 9 comments — Leave a comment )