I have had this disorder for about 20 years now.....the wonder drug at the time was Cylert which was taken off the market. Since that time I have battled with insurance companies trying to get approved for Nuvigil or Provigil but because I am not diagnosed with narcolepsy, sleep apnea or use a machine at night I am not a candidate.....WHAT???? I have taken Ritalin but that raises my blood pressure and I am already taking 3 different kinds because I have an inherited BP disease......

I am about at my wits end..........I have tried over the counter energy/wake up supplements, B 12 under the tongue, etc. I have to drink a bottle of 5 hour energy just to be able to attend classes...... Without any type of stimulant I can sleep 24/7 with short periods of wake up to eat or go to the bathroom...... I fall asleep after drinking a half a pot of coffee - sitting up!!

I finally asked my doctor if I should be back in for another sleep study, which she agreed. In trying to explain to the office rep at the sleep clinic she didn't know what idiopathic hypersomnolence sydrome is or primary hypersomnia as it is being called now..... She said we don't give medications is that is what you are looking for..... I was stunned for a moment and said - you don't treat sleep disorders with medications>>> then said, hey if you can keep me awake without medications I would be overjoyed....

I was first diagnosed with chronic fatigue syndrome but I was falling asleep driving after drinking several cups of coffee. Had the sleep study - nothing during the night but the next day I had a very hard time staying awake for the two hours between the nap studies, once they had to wake me up to tell me that I would ruin the study..... nope I was falling asleep within minutes until the last nap which took 10 because I had a migraine from lack of caffeine.......

Sorry to ramble on like this but I am so frustrated at this point because it seems I have to chose between taking Ritalin and possibly having a stroke/heart attack or not take it and sleep 24/7........

I am curious as to whether any of you had any strange flu like illnesses before you started having these issues...... I did and have never been the same....

My thoughts and prayers go out to all of you that suffer from this odd disorder!!