Narcolepsy Forum Posting

Posted by Alex_C on December 01, 2000 at 20:52:18:

Hi all,

Hope you can all stay awake during my message.
Ok, here's my story. Your assessments are much appreciated. For my entire life (currently a 26 yr-old female), I have always had difficulty sleeping, as in, I have NEVER felt well-rested. As a child, while sleeping, I would walk around my house, take showers, talk, get up and yell at the TV, etc. I would wake up several times a night, and was always tired during the day, no matter how much I slept. Finally, after I started falling asleep in class every day in college, and in my books while studying, I had a sleep test (they determined that I woke up very frequently--"arousals of unknown etiology") and a MSLT, during which I fell asleep immediately for each nap though didn't really go into REM sleep. That was about four years ago, and things have gotten progressively worse. I was falling asleep every day in front of my computer, would get up and walk around, have a drink of water, come back, fall asleep, etc. I fell asleep driving on the highway, but fortunately stayed in my lane; I fall asleep in very small meetings at work, where people have to notice, and a few weeks ago I fell asleep during a one-on-one conversation with a co-workers--I could barely stay in my chair, much less stay awake. I recently moved to Boston,MA and just had another sleep test, and though the doctor did not schedule another MSLT (he was waiting to get the results of my previous test), he did test for upper airway resistance, though that was very slight and probably not the problem--I am still waiting for his interpretation/diagnosis. Previously, my primary care physician had put me on Ambien to keep me from waking up at night, but I was a complete and total zombie during the day and still falling asleep. My neurologist took me off of that and has placed me on Provigil for a trial run--I practically begged him to give me something, anything, because I was so so tired every day and I was becoming completely depressed and terribly irritable (my poor boyfriend). It is such a feeling of complete and total despair, being that tired--I am sure you can all relate. Anyway, I regularly experience HHs, though they haven't really been scary, just extremely vivid (I often narrate them to my boyfriend until I fall asleep mid-sentence), though I have had horrific nightmares and quite often used to wake up with this terrible feeling that someone was pushing on my stomach and wouldn't stop--again, my poor boyfriend, who I would interrogate afterwards. I have extremely vivid dreams, during which I have told myself in my dream that I am dreaming. My memory is terrible, I will often find myself doing things and not remember how/when I started them, I cannot focus for a two seconds and I get in a total haze where people have to practically snap their fingers in front of me to get my attention. So much for multi-tasking. As far as cataplexy goes, I have never actually collapsed, though I vaguely recall feeling very giddy while laughing very hard, where my stomach feels rather weak and I am laughing though it is no longer really even funny, but I can't control it. The sleep tech did say that I completely crashed out within 4 minutes, was woken by this machine buzzing, though promptly fell right back to sleep.

So, here's my dilemma: The provigil has really helped me, and though it seems to be wearing off a bit, I can actually stay awake for almost the entire day (though I still wake up several times at night). What the heck am I going to do if my doctor does not diagnose me with narcolepsy and takes me off of this medication?

Did your symptoms set in slowly like this? Do the symptoms seem to increase over time, or do they level off?

On a side note:
Does anyone else get terribly thirsty from taking Provigil? Never mind that it has completely eliminated my appetite during the day, which is not good.

I swear, if one more person tells me to go out and exercise, I am going to throw myself into the big dig. Besides, I am in great physical shape and all of my tests check out, though my blood pressure is rather low and I have poor circulation.

Well, that was quite a novel, sorry, but I can't say enough about this problem. Please reply with any suggestions, thoughts, miracle cures (I wish) that you may have!

Night, Night.

Alex

Follow Ups:

• Provigil comments Merrill 14:58 12/05/00 (0)
• Re: Diagnosis pending--help me out here... Greg in Oregon 23:06 12/04/00 (2)
  • Re: Diagnosis pending--help me out here... PHILIP 09:38 12/12/00 (0)
  • THANKS. Alex_C 17:46 12/06/00 (0)
• Re: Diagnosis pending--help me out here... Scott Larson 17:54 12/02/00 (0)

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