Might have Narcolepsy, what do you think?

[RFehr613]

So I started having issues falling asleep at the wheel on highways.  I didnt think anything of it for a year or 2 until I was speaking with my cousin about it.  She is a few years older than me and said she started noticing the same thing when she was my age (23 at the time), and shes since been diagnosed with Narcolepsy.  She said the problems progressed into her falling asleep at lights.  Then her falling asleep at dinner.  Finally after being diagnosed, she was put on a medication to keep her alert (Cylert maybe?) and she says its helped.  Well my parents are seriously concerned that I may have it as well.  Obviously its not a HUGE danger in everyday life, but when it comes to driving...yes, it can be very dangerous.  For me it has gotten so bad that if I take a drive on the highway longer than an hour I MUST get a 24oz coffee and an energy drink (I stay sugar free to prevent crash as well).  But even then, Im still dosing off.  It doesnt matter what time of day it is, how much sleep I got the night before, or how wide awake I was prior to the trip.  Ive tried rolling the windows down in the dead of winter, blasting my stereo, turning off my stereo, slapping myself HARD in the face multiple times.  Theres no stopping it.  Its like something is pulling my eyes shut and even though I know its happening, theres nothing I can do about it.  I even try opening my eyes and I feel my eyebrows move, but my eyelids dont open lol.  Ive woken up on the other side of the road multiple times, broken off a side mirror on a telephone pole, and almost gotten into many accidents.  I shouldnt be alive now.  It seems to be getting worse now too.  This past Memorial day I went down the shore.  On my way back, I was in crazy stop and go traffic, not exceeding like 15mph for a few hours.  I had my GF in the passenger seat (which a passenger usually helped before), but this time I just couldnt stay awake.  I KNEW if I kept trying to drive, Id rear-end the car in front of me.  So I asked my GF to drive (Id have done it earlier but she was sick...turned out to be pancreatitis :( ).  And lately, after thinking about Narcolepsy a lot, Ive realized that Im always dozing off at work.  I work in retail and things can get pretty slow and boring at times, but I DO have a computer to entertain me lol.  However, I still find myself dozing off.  Funny thing is, once something or someone wakes me from dozing, its like I never fell asleep....Im wide awake....then a minute later, dozing off again lol.  And Im not sure if its related, but my entire life Ive always fallen asleep trying to read a book or long article.  Now, I DO have reading comprehension problems and slight Dyslexia, but Id think those wouldnt make me fall asleep.  I find it hard to find interesting books so that could explain it.  However, I read a lot about bodybuilding as its of great interest to me, and I still doze off reading that stuff.  I know I need to get tested (obviously).  Theres an issue as Im moving to VA to work on my Masters at Virginia Tech in 2 weeks.  VT is 7-8 hours from here (Philly).  Thats a loooong drive when you fall asleep at the wheel EVERY time youre on the highway.  Cant get an appointment with my cousins doc until August 20th and Im willing to bet its the same with any sleep doctor since specialists are always hard to get appointments with.  I guess I may have to find one down at VT.  Anyway, what do you guys think of my situation?  Does it sound like Narcolepsy?  I havent noticed any cataplexy unless you consider my eyelids shuting loss of muscle strength lol.  I will def get tested, just thought Id get some other pinions first since I have to wait anyway :/

[RFehr613]

anyone?

[RFehr613]

really?  no one?

[StressedInsomniac]

I'd recommend that you go to your doctor and get him to run some tests. It sounds like Narcolepsy. I think you should also stop driving, if not for your safety - for the people around you.

Best of luck :-)

Ben

[RFehr613]

Thanx for replying.  I will be getting tested, I just cant get an appointment right a way :/  Im also moving to VA so that could pose some other issues with docs and insurance.

I really cant stop driving since I need to get to work somehow.  But once I start grad school down at VT, I wont be driving nearly as much and probably rarely ever on the highway.

[LexiFaye]

My narcolepsy started off just like yours, the driving, and embarrassingly I would fall asleep on the toilet.

I am now on Provigil, stinks cause it's expensive, but I was a danger to myself and others. I have to agree that driving is dangerous for you and those around you.

Finding out all this does take time too. You'll get a sleep study, which is usually an overnight and next day stay at the hospital, then it'll take a couple weeks to read those. Then you'll have to try to get an appointment. The run around is the worst part... I wish you well. Keep us updated.....

[RFehr613]

Thanx a lot, Lexi.  I appreciate the support!  Hopefully Ill determine the problem and find a resolution in a timely manner :/

[wnorm56]

I was diagnosed with Excessive Daytime Sleepiness,or Idiopathic Hypersomnia about 4 years ago after being tested at a Sleep Disorder Clinic ( Multiple Sleep latency Test). I take Ritalin and can now drive without dozing off.I can stay awake in movies, etc now. I am 56 years old and have probably had this condition my entire life.
Good luck

[RFehr613]

Well I really need to get to a doc asap.  I just started a tough engineering summer course and i keep falling asleep any time i try to read :(  and not to mention, my concentration ***** when I'm working out problems...maybe some Ritalin would help with that as well :/

[kmil1999]

At least you know what direction to start looking at.  I was dx with seizures before they figured out I had Narcolepsy!  I even had automatic behaviors and was able to complete simple tasks while I was asleep!!  Once you are dx, it can be treated and things will get much better for you!  Hang in there.   Karen

[RFehr613]

whats dx?

[kmil1999]

dx is diagnosis or diagnosed.

[RFehr613]

ah ok thanx