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

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!!!

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?

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

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.

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....

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)...

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?