Anyone else have Excessive daytime sleepiness - Idiopathic Hypersomnolence (Central Nervous System)? Doc said that its almost like being narcoleptic, but without the REM sleep. The sleep study revealed that I only spend 6% of my sleep in "deep" sleep vs the average of 18-20%....anyone else have this problem?

Hi there dabbo,
I just saw you have a couple of unanswered threads on this forum. I don't have this problem so I can't really help you with that. I have RLS which affects my sleeping but nothing like you have.

How're you getting on?

Have the doctors worked out some way of helping you?

getting on ok, thank you for asking.... CPAP machine helps (when I make it upstairs to bed, that is). Meds to help me fall asleep, meds to help me stay awake during the day, along with a whole host of meds for other problems. It all seems to be neurological, and it kinda freaks me out at times - I wonder if I'm missing the big picture.

How many hours do you sleep in total - day and night ?

At one time I slept for 14-15 hours per day, but it was due to having slept only 6 hours per night for several months previously.

usually about 6-7 hours per day. I may have an afternoon nap on occasion.

I have no idea if I "fit" in here .... I just love to sleep so I sleep long and hard.
I almost always go to bed by 9:30 - sometimes at 8 PM - and sleep soundly until 7 AM. By 9 or 10AM I'm desperate for an hours nap. At noon or 1PM I need another nap. After dinner it's sometime another nap.
I want and love sleep.

dabbo i have idiopathic hypersominia. sounds like we are haing the same problems. pills for up and pills for down and nothing seems to really do the trick along with other pills. the machine didnt help me. i have a 1-2 minut sleep time what i mean to say is it only takes me 1=-2 minuts to fall asleep with out the provigil. normal people take 9-10 minuts. the provigil keeps me awake but i am so tired even with it. with out it i have almost walked into a moving car because i was half asleep.

This is exactly what my life is like! The machine didnt work for me (because i dont have sleep apnea > and did anybody try that natural-light lightbox thing either? didnt do ****, so if you didnt please dont bother :P i take a butload of adderall in the morning to wake me and more in the afternoon so i dont crash. i usually fall asleep in less than 3 minutes, and iv been told i sleep like a corpse ;P the worst is when you have the medicine in your system and are physically "up" but your entire body is screaming because you're just that tired

dabbo i have not been diagnosed with that malady. i can say that i am tired all day and that 6-7 hrs of sleep is a good nights sleep for me. i recently changed endocrinologists and this new dope decided i was depressed and trying to conceal it. he prescribed trazodone and that is why i am up at 3:56 am, still awake after retiring at 10pm. so now i really am depressed. my situation is different in that I have had a total thyroidectomy to remove cancer. the thyroid plays a role in sleeping and not sleeping. thyroid hormones do a lot of regulating and one of the things regulated is the heart. too many can rev you up and later you crash and are tired. too few and you are tired all the time. to keep the cancer from coming back they use the too many approach on me. i wish i had a med that kept idiot physicians out of my life. the ones that tip me from the frying pan into the fire.

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!!