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Re: Likely, it's narcolepsy + sleep apnea

Posted by utopizen on November 8, 2003, at 22:17:08

In reply to Re: Likely, it's narcolepsy + sleep apnea, posted by zeugma on November 8, 2003, at 19:19:03

> I will call my doctor as soon as possible and tell him about this. I have had sleep problems all my life but the EEG was done before I developed the hypnagogic attacks at 23.
>

Late teens/early 20's is when people typically get Narcolepsy, that's common for the disorder. Sleep-deprived EEGs and neuro evals are an important step because docs need many potential problems ruled out before treating you, and these tests take a few weeks to schedule, then a few weeks to review, then a follow-up appt., then scheduling an appt. with a different kind of doctor (if you have apnea, you need to see a pulmonary specialist to determine it).

Are you tired in the day after sleeping 7-9 hours? I've been tired since puberty, and it's seem to have gotten much worse the past several months. I'm 20.

I have "atypical N," because Narcolepsy typically includes symptoms like hypnagogic hallucinations, sleep paralysis, and in some, cataplexy, among other problems. I just went in to my neuro over a shoulder shrug twitch I get now and then, and ended up with the diagnosis that it's a manifestation of REM behavior, and relates to my sleepiness.

The problem is, this is a very long process. Unlike any other area of medicine, sleep medicine doesn't take into account that the patient's quality of life is a priority. Everything revolves around objectivity, which translates to ruling everything out, which translates to a long road before even receiving treatment-- I've taken 4 separate tests myself, including the EEG.

So get started ASAP. Your psychiatrist should know of a neurologist who is board certified in sleep medicine, and from there your neuro will know where to see a pulmonary specialist (your gasping at night is a telling sign of apnea, and it's not as related to your dreaming as you might believe.

More likely, your lack of ability to breathe at night causes you to have a scary dream, which causes your heart to race, which is done to wake you up to gasp for air.

Many people with narcolepsy have another sleeping disorder, including apnea. I have narcolepsy and apnea myself, and find Xyrem and CPAP to work great. Your symptoms are actually more common for narcolepsy, my lack of such symptoms made it difficult to initially diagnose me-- they have to treat me w/ CPAP first, and didn't want to treat my narcolepsy with Xyrem until they ruled out the possibility that CPAP could resolve all my problems in case all I had was apnea.

Your psychiatrist, unless he or she would prefer some other specialist to do it, is likely going to manage any meds related to your condition after you're diagnosed by the specialists (neurologist, pulmonary specialist, etc.) My pulmonary specialist didn't feel comfortable prescribing meds and told me to have my psych to deal with it, I'm not sure if that's because he does that with everyone or because I was already seeing my psych. for social anxiety and ADD meds (Desoxyn + Klonopin).

What I did to speed things up was see a psychiatrist that was a pioneer in sleep medicine. I saw him for a one-hour consult because that's all he does, he's a professor at Tufts and is very busy guy, expert. Knowing Xyrem was promising for my condition, and knowing an expert would likely agree with my ideas because they're as smart as I am about the thing, I saw him and he told my psychiatrist to give me Xyrem.

Since my psychiatrist knows he's one of the biggest names in sleep medicine, he's not going to go against his opinion. They feel more comfortable, because they can always say, "Dr. X advised me to give X drug to Patient X after Dr. X saw Patient X."

It's better than having to whine for a year and a half and them not listening to you... although the p-doc I found now is much better than the guy I found before.

ONE OTHER THING-- Xyrem CAN'T be taken with a benzo like Klonopin, or any other CNS depressants (say, Straterra, Celexa, you name it, it's quite possibly going to be a CNS depressant). Respiratory depression can result, so if you ever do decide on Xyrem w/ your doc, you need to be off Klonopin at that point.

The alternative is trycyllic antidepressants or SSRIs or others in a cocktail, and those have lots of side effects. So I chose to go off Klonopin because I decided social anxiety disorder wasn't fun, but at least Xyrem lets me function enough to not be painfully tired. Also, you can try switching to Tranxene-SD or something, Klonopin's useful in a few things like RLS or Social Anxiety Disorder, but if you have generalized anxiety disorder, you've got many options with benzos.


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