Posted by mstr9 on June 06, 2008 at 10:21:13:In Reply to: Re: what about me? posted by ahr on May 28, 2008 at 11:11:52:
This post is kind of old, so I don't know if you'll read this, but I figured I should respond anyway. Most sleep med clinics are pulmonary based. That means that they specialize in sleep apnea and restless leg syndrome. To get a proper diagnosis of narcolepsy you need a Multiple Sleep Latency Test (MSLT). This type of test involves a series of naps as well as a night monitoring and primarily looks at the interval between latency and REM sleep. For this you need a sleep clinic that specializes in neurologicaly based sleep disorders.
Also be careful with the meds. It's been my experience that many people with narcolepsy don't respond correctly to the medication. This is because the standard treatment focuses only on the symptom without ever considering the cause. Stimulants treat daytime fatigue, but narcoleptics only get a very small amount of restful sleep during the night. My last study showed 27 minutes of stage 3 sleep with no stage 4 over an 8 hour period. Imagine treating someone who gets one half hour of sleep a night with stimulants during the day! I know its embarassing to fall asleep during the day, but it seems to me to be a better alternative than depriving the body of that rest altogether. So, to the uninitiated, sleeping pills seem like an alternative, but this disorder is not simply a matter of sleep. It has been my experience as it was yours that sleeping pills make things much worse.
In your post you mention having several major symtoms of narcolepsy. These are cataplexy (momentary loss of muscle tone associated with heightened emotion), hypnocognant hallucination (dreamlike hallucinations which can span the boundaries between REM and sleep latency phase), automatic behavior (continuance of behavior even after sleep onset), and, of course, daytime solmenence (being sleepy all the time). I'd say that any doctor who knows narcolepsy would simply use the MSLt to confirm the diagnosis. You have to really look and you may have to travel, but there are professionals who know this disorder. Don't put this off; an official diagnosis is the only way you can protect yourself in the professional world and people who fall asleep inappropriately are certainly frowned upon.
I hope this helps.
- Re: what about me? ahr 09:18 6/10/08 (0)