Posted by Nyx on September 02, 2009 at 20:21:08:In Reply to: unsure posted by alwayssleepy29 on August 31, 2009 at 10:50:36:
Congrats on finally getting to a sleep doctor, and one that recognizes the limitations of the MLST and diagnostic factors required to assign the narcolepsy diagnosis officially. Generally when your MLST doesn't show the requisite two REM occurrences during the four naps, short onset, etc., you'll be diagnosed with idopathic hypersomnia (which basically means that they know you're incredibly tired, but don't know why). So, they'll give you provigil and see if it helps or not.
I was initially diagnosed with idopathic hypersomnia before they re-evaluated my test and found the requisites for narcolepsy, and during that time my doctor started me on provigil. At first it was great, but over the next few weeks I found that I was growing increasingly more tired. So they increased it from 100 mg in the morning and 150 mg in the evening to 200 mg twice a day. The headaches and neck tension I'd been having got even worse, only now I felt like I was senile. I was constantly forgetting things to such a dramatic degree that it was terrifying. After three days of feeling like I'd become an idiot, I stopped taking it.
I talked to my doctor and he had me switch to ritalin. He said he usually starts someone on provigil, then ritalin, then adderall, dex, etc., eventually perhaps trying xyrem, until something does the trick (taking into consideration the quantity you need to take, and the side effects). Now, the tricky thing here is that I don't know whether your doctor will feel comfortable with prescribing stimulants if you're not officially diagnosable as narcoleptic. I suppose you'll just have to ask them. But I certainly wouldn't accept this state of fatigue.
And until you get in to see him, find the dose of provigil or nuvigil that helps the most, but with the least amount of side effects. I'm guessing you're already doing that. The other thing you could try is scheduled naps. This helps some people, but does absolutely nothing for others. Basically, don't just wait until you're so tired you're crashing. Proactively schedule in a 30 minute nap BEFORE you get tired (perhaps over a lunch break if you work). Some people find that it will help them stay awake for a few hours afterward.
Anyway, good luck, and I hope your doctor helps you find something that works. They may just end up diagnosing you with narcolepsy based on your symptoms, or retest you at some later point. Feel free to post back about how things go....