What is Narcolepsy
The main characteristic of narcolepsy is overwhelming excessive daytime sleepiness (EDS), even after adequate nighttime sleep. A person with narcolepsy is likely to become drowsy o...
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sleep study scheduled!
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So i met up with the sleep doc again after doing his trial of Mirapex for possible restless legs (all it did was make me sleep MORE than i already do during the day and had a harder time waking up... totally not what i need lol). So, next stop? Night time sleep study with the day-time nap study if the night study doesn't show anything diagnostic.
He seems to think its narcolepsy now, and did mention the possibility of starting stimulants at some point to help me stay awake during the day but he wants to wait until we have the results of the sleep study to find out if its narcolepsy or "some other rare sleep disorder" first. I did get it scheduled so that I can be off my Desipramine for 2 weeks without it interfering with my schooling (yay!!) (Desipramine helps me sleep lighter and less, so I can actually wake up in the morning instead of my normal zombie-coma-sleep!...and I don't feel the need to sleep nearly as much or have the level of fatigue i usually do when I'm on it). I'm a little bit nervous about the sleep study, simply because I've never slept with a bunch of stuff attached to me! Nor do i purposefully take naps because i have a hard time waking up from them if its planned.. and so my 30min nap turns into 1-2 hours unless its the kind of nap where I can't help but to pass out...that hits suddenly, and i have no choice in the matter..those always include dreaming and i usually wake up within 5-10min. So... i don't know. Guess we'll see.. any tips to prepare me? =) Its not until Dec 22nd and 23rd... so, guess i'll keep chugging my energy drinks while i study in the meantime so maybe i'll stop passing out! =) Posted on 11/09/09, 08:11 pm |
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Send your doc and every doc to:http://med.stanford.edu/school/Psychiatry/narcolepsy/symptoms.html
The first line is "Narcolepsy is a frequent disorder"...second most common after sleep apnea. Docs have to stop thinking of narcolepsy as a zebra! Docs aren't comfortable making exotic diagnosis...what will their colleagues think? 
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There was a presentation at the conference where many "parasomnias" (I think I have the word right) were shown to be related including restless leg and hyposomnia- That even though there is a low rate of narcolespy per say occuring in multiple family memebers. The presenter was able to demonstarte that there is a high incidence various parasomnias being present among family members... just FYI... there was a good discussion that evening at dinner about where or not that theory contradicted the autoimmune theory...the discussions at dinner with other PWN were as interesting as the presentation I attended during the day.
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Sasha
I have one of those doctors would consider N a rare disorder. he finally has become comfortable with calling me IHS, but putting N on my paperwork he so my insurance will continue to cover my xyrem. At this point in time I really don't care what he calls it as long as he treats it.
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