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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.


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.
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?

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.


Steve Hutchison

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