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Beckylaine

Frustrated

6 posts in this topic

Hi all! 

I am new to this site and have still not been "diagnosed"with N.  I have been falling asleep while driving since the age of 18 (I'm now 31) and tend to fall asleep anytime i sit still for more than 20-30 min.  As a teenager I remember my dad telling me I was sleeping my life away, and unfortunately I still am.  I had my first sleep study and mslt a few weeks ago.  I did not meet the diagnostic criteria for N bc I only went into REM during 1 of my naps.  However, I was napping during the time I was supposed to be awake, which I told my md.  Prior to this I had been taking Vyvanse for almost a year, which didn't help me at all.  After my mslt, my md prescribed nuvigil 50mg and told me to increase to 100mg after a few days, which I did.  I made it through last weekend with no naps, which is highly unusual, but on Monday when I increased my dose to 100mg I left work early and came home and took a 4 hour nap.  I was so frustrated!  During my sleep study I had some suspicious activity on my eeg, so I had a 24 hr ambulatory eeg yesterday.  I resumed the nuvigil 100mg today.  I will say today is the first day I haven't come straight home and gone to sleep, although I probably could.  I realize that 100mg is a fairly low dose and that the effects may increase with time, but I am sick and tired of being tired. My IH makes it difficult for me to work a full day and spend time with my family.  My md said we could repeat the mslt, but is there a point in doing that?  If he is going to treat me with nuvigil & it works, do you think I should repeat the mslt for a possible diagnosis of N or just remain someone with IH?

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I was diagnosed as IH until my cataplexy started showing up.  Never even had a MSLT.  My sleep doc says MSLTs are junk -- that there are too many false negatives and positives.  Try the HLA Typing For Narcolepsy blood test, from Quest Diagnostics.  The only other option is to go to Stanford and get an LP.

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I just wanted to also say that it doesn't matter whether you're a textbook narcoleptic or IH, unless insurance is involved.  What were the results of your PSG?  PSGs do not tell the whole picture either, and I'm afraid nothing does when it comes to sleep.  The brain is a chemical system -- all the PSG does is look at electrical activity, with just a few wires.  The brain is a lot more complicated than that.  There are subcortical arousals that a PSG won't even see.

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My PSG was negative for apnea & my sleep efficiency was about 94%. I don't really care what my diagnosis is, I'm just ready for treatment that helps.

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How many spontaneous arousals (3-15s) or micro-awakenings (> 15s)?  How much time in Stage 3?  How many stage shifts?  Do you sleep long times?  > 10 hours may be true GABA-related IH.  Flumazenil worked on those patients.

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I have to get a copy of results. I don't remember everything....

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