Idiopathic Hypersomnolence (CNS)
 

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.

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

hello dabbo
 

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:

i have idiopathic hypersominia
 

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:

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?

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:

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:

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

Idiopathic Hypersomnolence
 

So I've got this diagnosis... Anyone try any homeopathic cures? My insurance will only cover provigil if I gain 30 pounds and I don't think that is in my best overall interest...

Anyone also have autonomic dysfunction in the form of orthostatic hypotension ie I get light headed and my vision goes to black and white if I stand up too fast.

Hypersomnia
 

i have idiopathic hypersomnia too!!! you are actually the first person in a very long time that i have heard of with this as well, seeing as this is not so commonly found. I had very similar sleep study results, though my record of continued sleep without wakening is 19 hours consecutively. When I fall in these extreme situations I only wake up starving hungry or I have to desperately go to the bathroom, but then I just immediately fall back asleep once I've finished; do you find this similar to your own situation? I have even been known on more than one occasion to fall asleep on the toilet, in my plate of food, and on my textbook with pencil still in hand. I need on average 12-13 hrs nightly else I build up a sleep deficit, probably only so high because I haven't finished growing yet! But I would love to hear back soon!!!!

Then you may outgrow it. It's common for adolescents to need more sleep than children or adults - sometimes as much as 12 hrs. In high school, I was taken to a doctor for falling asleep in class & elsewhere; my mother suspected narcolepsy. During a period when I had EB virus (Mono) I was sleeping up to 16 hrs a day. You may just be at the long end of the scale - especially if you're in any kind of growth/development spurt.

Has anyone checked your blood sugar levels? That can account for odd sleeping patterns/requirements too.

After I got to college (and stopped growing) my sleep patterns returned to normal (for college students)... :p

Doc

Thanks for the comforting words but I have all the other diagnostic requirements for hypersomnia as well :/ Extreme difficulty waking up, it physically hurts, and for a while after I'm completely disoriented and act drunk. I also exhibit many symptoms of long term sleep deprivation, mainly cognitive impairments, such as restricted short and long term memory functions, deteriorated motor skills, no spatial awareness, and my vision (20/20) gets very blurry the more tired I am. And migraines have the days I'm awake.

No matter how much sleep I get, I still feel almost drugged I'm that tired! It literally feels like a perpetual hangover/jetlag, you know?

i have idiopathic hypersomnia too!!
 

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 :(

idiot physicians
 

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.

Idiopathic Hypersomnolence here too!!!
 

:confused:

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!!:eek:

The insurance companies are getting ridiculous!!! Nuvigil works very well for me but my current insurance has denied it twice stating that because I dont have narcolepsy, sleep apnea or wear an apparatus at night they wont cover it...... I even sent research on it, which is now being called primary hypersomnolence but they denied it again...... They did approve Ritalin which raises my already high blood pressure but they didn't care to hear about that....

Hi Sleepy, Welcome.

I do not have hypersomnolence, however I have had flus & viruses that have been the catalyst for other conditions (chronic migraine, IBS), and I have met others who have likewise had seemingly simple viruses after which they have never been the same. The migraine complex turned out to be one that is documented as being brought on by reactivation of Epstein-Barr.

Little consolation, I know, but having experienced it firsthand, I do believe you.

Doc

I was diagnosed with idiopathic hypersomnolence when I was in high school. It was horrible; I missed out on so much! I was prescribed Dexamphetamine just to be able to live a ‘normal’ life. I hated taking this as I believed it made me depressed so I stopped taking it.
Later on I started ‘self medicating’ will illegal drugs. It was the only way I was able to work and study. This had consequences though and eventually stopped. I tried so hard to do what everyone else does without any form of help. I would be late for everything, sleep during my morning tea and lunch break, sleep when I got home. My house was a disaster as I could barely keep on top of it.

I started living on energy drinks causing me to gain so much weight. My body went into starvation mode as I slept through most meals. I could barely look after my children. They were late to school every day. My husband has never understood and just believes I’m lazy. I tried seeing doctors explaining to them how tired I was and asking to go back on some sort of medication again. I told them what I was diagnosed with and none would listen. Everyone put it down to stress, depression, lack of exercise, weight, snoring you name it!

Due to the amount of weight I gained I was eventually placed on Duromine. I was told one of the side effects for not being able to sleep. Well I didn’t have this side effect; it did however give me just enough energy to live a ‘normal’ life. For the first time in about 10 years or more I was able to do basic household chores, look after the children, have a restful night sleep (I even had dreams), work. I was so happy and with it! Unfortunately Duromine is only meant as a short term weight loss drug. Now I’m back to my crap life again. I’m yet to find a doctor willing to help. I am new to the area I currently live in hopefully I will find help here.

Nice to meet you!!