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Narcolepsy? Sleep Apnea? this sucks


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Can anyone give me some information on Narcolepsy and sleep apnea? I know no one can diagnose etc but I'm more looking for general knowledge/experience. I haven't been able to find much on the internet and want to know more before I talk to a doctor. I've been having these symptoms for 1 maybe 2 years now. I always chalked it up to antipsychotics but I decided not to take them anymore -I've been off for months - and am still having a lot of trouble. It's really frustrating because I'm missing a lot of information that I need! It's like I'm going unconsious not falling asleep - I have no control over it. It's really embarassing especially since I love my classes and it probably seems like I'm being rude or am uninterested. A professor last year yelled at me about it and I felt so terrible I cried for 3 hours but I really can't help it and would much rather be awake! Here's some stuff that may be important?

 

• I do not snore, I do have trouble fallling asleep at bedtime, and a lot of trouble getting out of bed in the morning

• I have days where "sleep attacks" are a problem and days when they're not. The ratio is probably 1:4 

• When they are a problem, some of the time it's like Im dreaming while awake, I hear my professors say things that I know they can't have said and I use logic that makes NO sense. It's also sometimes like Ijust black out - i realize an attack is hitting and then an hour later I wake up and the class is over and I can;t remember a thing. 

• I usually get them sitting in class or doing homework but have had them driving and in the middle of conversations.

• When I get them my muscles go very limp and I have a hard time getting them to work again

• I do get that thing where when you wake up you can't move but only when I'm sleeping in my bed - not sleep attacks

• If I can I will sleep for long periods of time. last weekend friday night I went to bed at 11pm woke up 11am the next day, ate breakfast then slept from 12pm to 6:30pm then 9pm to 11am the next day. 

• Sleep attacks seem to happen regardless of caffine intake and how much sleep I have had the nights before. I've tried eating altoids, drinking water, chewing gum etc and fall asleep regardless. 

 

I really don't want to do a sleep study. :(  any insight would be awesome. I'm having a tough time with this.

Edited by em3424
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Do you have a neurologist; that is who diagnosed me with narcolepsy

 

Before I was medicated I fell asleep ALL the time.  I was constantly in need of a bed. 

 

It took about a year to diagnose.  I had to do sleep charts for I think 2 months, and had to see him 1-2 times a month so he could follow me and I could report back to him how I was doing.

 

I did have to have a sleep study, but it didn't show anything because I couldn't go off of all medications (no one wanted to risk me relapsing into full blown psychosis).  Apparently, according to my neuro, you need to be off all meds to really get a true report.  He did the sleep study on me anyway though just in case he saw any signs of it.

 

He still was able to diagnose me with narcolepsy though, because of the severe sleepiness and hallucinations I was having despite being on all the meds (see sig at bottom), and it just getting worse every time I saw him. 

 

He put me on Provigil, and it helped 100%.  I still sleep a lot, but nothing like I had been doing before starting that.  And I can exercise now (I have energy back).

 

But I would consult with a neurologist with all your concerns.

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  • 3 weeks later...

On my first sleep study they said I had sleep apnea and gave me a cpap. I didnt think it helped me stay awake during the day. The sleep dr gave me provigil and that helped alot. It didnt take way all of the sleepiness but it got much much better. I recently had another sleep study after losing 50lbs and no longer had it. My pdoc wanted me to have a different type of sleep study to see if I had narcolepsy. You spend the night with all the goodies attached, then  the next day they let you sleep on a schedule and see how long it takes you to fall asleep.

 

 

My pdoc wanted me to have one, but the deductable was prohibitive and I never did it. Just stuck with the Provigil.

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