Idiopathic Hypersomnolence (CNS)

[dabbo]

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?

[Lara]

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?

[dabbo]

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.

[Van Coover]

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.

[dabbo]

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

[Wren]

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]

Wren- I didn't know the cause of it until I had a sleep study. I just assumed that I wasn't getting enough sleep. Here's some info on it though...
Idiopathic Hypersomnolence (http://sleepdisorders.about.com/cs/sleepdeprivation/a/idiopathic.htm)

[moonstar]

hope things are getting better for you.. too much or too little sleep throws off everything.. loose your balance in life.. i was falling asleep during the day and going into a comma like state sleep(with no rem) for 10 -12 hrs per day for months..i was tested for so many different things..i am also suffering with rsd,fibromyalgia,and trigger finger (of my right thumb)--i work nights and was missing 2-4 days a week for months..i was tested for so many things..went for my second sleep study and i am still the same as i was last year.. i stop breathing 20 x's an hour.. i seem to realy sleep for 2-4 hours a night--well... i am up most nights till 6am--then rest until i have to get my autistic brother (terry) up for his program..he leaves at 9..then i pass out ...and get up go to work...and the routine starts up again..round and round the days go..
the cpap machine didn't work for me..they are going to try to find me a mask that works better and i will try again...


for every new dr...oh and there has been so many in the past 14 yrs of this nightmare....for every new dr----all new tests---and then the wait---

anyway...i hope you have some better days and more peaceful nights--- we can only hope and pray----- take care--- moonstar :hug:

[kaddidle]

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?

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.:grouphug:

[grammyto09]

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?

Recently dx with that myself however at 2nd opinon, dx with narclopsy due to HLA gene and prior sleep study done incorrectly. You are not to take antidepressannts for several days prior to the test as these meds interfere with Rem sleep testing.

I was taking Provigil...but had to double the normal amount and it still was not effective. I had to take short term disability...as I fall asleep while talking with people on the phone. I still will fall asleep anytime I sit down to relax. I have had these symptoms for the past five years.

What are they doing to confirm diagnois and treatment for you?

[grammyto09]

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?


Yes! I was dx with this about 4 months ago and given Provigil to help me be able to function at work during the day(.I was told that the most common side effect of this medicine is weight loss and hair loss. I don't mind the wieght loss but the hair loss was horrible. I now have a very short haircut but mly hair is so thin now.) I kept getting worse and needing additional medication increases, which I felt were not good. I sought a 2nd opinion and after review of the sleep studies done , I was told that I most likely have Narcoleposy and a breathing disorder. I have another sleep study tonight for further clarification of dx.

Trust your own knowledge of your body and I would have a 2nd opinion from another neurologist. All of this dx process has taken about 6 months and I still am not better , however, I feel more on the right track now, to getting my life back. I obtained a great job at about the time all of this problem started for me. I took short term disability recently to get everything under control so that I wouldn't loose my job. If this is available to you, I would consider it also. I had trouble learning anything new and remembering anything new, which caused a trememdous stress environrment. I feel certain that the stress made everything worse. The real trouble with sleep disorderes is that you look perfectly fine and people are unaware of the seriousness of your illness. I haven't been able to drive for months because I fall asleep while driving. I hope that you don't experience this, but if you do, don't take a chance driving. Should you have an accident while driving, it is considered a felony offense because you knew you had a sleep disorder. I was not aware of this law at all. I am in Texas and our state is the last to do any type of legislation when it comes to our autos and our guns. You may want to check out the laws in your state.

I wish you the best for your future treatment!!!:grouphug::grouphug:

[dabbo]

THank you all for the support and advice! As you can see, I probably should have gone to bed like 3 hours ago.... but, I have chronic nerve pain/brachialplexopathy/Thoracic outlet syndrome, and I CAN"T sleep right now since I can't get comfortable. ARGH!

I moved to Nashville from the Memphis area this past May, and finally found a sleep doc up here in september. All we did was change my dose of provigil, and I'm still trying to figure out when to take them... 1 (200mg) when I wake up, 1/2 (100mg) when I get to work, 1/2 at lunch if needed, or 1 in the mornting, and 1 at lunchtime. Any suggestions? :eek:

[Jaspar]

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?

Whether or not it is narcoleptic, perhaps you would still benefit from taking Provigil/Nuvigil in the daytime (prescription required) and helpful sleep supplements at night.

Jaspar