What is Hypersomnolence?

I was diagnosed with idiopathic hypersomnolence approximately two years ago after many sleep studies. Unfortunately, I am allergic to provigil, nuvigil, and aderall. Ritalin has been the only medication I do not have a reaction to, and so I take 20mg extended release each day. My doctor does not allow me to work or drive without it. My MLST had me falling asleep in less than 60 seconds.

I am getting ready to travel to a different time zone with a three hour time difference. It is a short trip with two full days of travel and two days there. The flight back will begin late at night after I would normally be asleep, and will probably feel even later to me because of the time difference.

Any recommendations on what time of day to take the medication in these cases? I usually take it as soon as I get up and have little energy by late afternoon. On the weekend when I don't have to work, I try to wait a few hours before I take it so I can be more alert throughout the afternoon/evening for my family.

I have been fighting this for a long time. I have gone through the sleep studies and they did diagnose hypersomnolence, restless leg syndrome and sleep apnea. I fall asleep in less than five minutes when driving, which has now caused a severe fear of cars. I no longer drive at all and as a passenger, I have panic attacks at the slightest hint of a car stopping too fast or being too close to the car I am in; it is nearly paralyzing.

I have multiple health issues and take a lot of medications, but at present they have me on Adderall to try to assist with the hypersomnolence. I take 40mg a day -- 20 in the morning and 20mg in the afternoon but I still feel drowsy all the time and God forbid if I got behind the wheel of a car, I would still fall right to sleep. I am not sure what else I can do to combat this horrible condition. They tried me on Provigil and I had an extreme allergic reaction to it, nearly killing me, so I will not attempt that and am scared to try any other medication than the Adderall. Any advice would be wonderful.

I've been diagnosed with hypersomnolence and I take 300 mg of Provigil and as needed I add 10 mg at a time of Ritalin. This seems to allow me to stay awake, but as soon as I sit, I get droopy eyed.

Try Modafinil 100mgs a day. I have a much better quality of life now.

I am 72 years old, work 40 hours per week and drive an hour each way. My insurance company said I am too old to stay on Ritalin. That's the only thing in 13 years I've found that works. So now what? Is it true I'm too old to be on it?

How is it possible to have narcolepsy and hypersomnelence?

I was diagnosed with hypersomnolence about five years ago and have been taking dexamphetamine since this time. I found 2 x 5 mg was initially enough, but over the past few months I've been suffering chronic tiredness again and cannot stay awake during the day.

My dose has been increased to 3 x 5 mg and I was also put on Edronax, which I gave me terrible side effects, so I ceased taking it immediately. I'm not comfortable with increasing my dosage anymore, yet 3 x 15mg is not working for me. What medication have people found to be the best?

I am 60 years old and have just been diagnosed with Hypersomnolence. I cannot get medical insurance, being self employed, so does anyone know where I can go for help with this syndrome? The Doctor who diagnosed me is my family Doctor and had insurance at one time, but I had to pay full price for the office visit recently and this was the result. I have been turned down for medical insurance from two major companies because of this illness and my neuropathy in both legs and feet. Desperate here in Knoxville, Tn.

I had a neurological episode in Mar 2010. No diagnosis was ever given, just follow-up with a neurologist. I had already been diagnosed with sleep apnea and was using a cpap. He said the cpap wasn't adjusted high enough and prescribed a new new unit that would record my usage.

In Jun 2010 I began falling asleep at work and sleep a lot in the evenings and on weekends. In Jul my neurologist diagnosed me with hypersomnolence and put me on disability and restricted my driving privileges. I tried provigil in varying dosages but no help, next ritilin in varying dosages again no help.

Now I am on nuvigil 250 mg for two months. It seems to help some but some days I can't stay awake more than a few hours and others I am awake and lucid for 8 to 12 hours. My wife is going crazy as we are getting to the age of retirement but I am now on long term disability and no longer occur retirement time. My job will be held open for me for about seven more months but I don't know that I will be able to return then.

Is there anyone else who has dealt with a similar problem and might offer some words of advice?

My diagnosis was finally upgraded from hyper somnolence to narcolepsy. My pulmonologist added Concerta to my daily dosage of Nuvigil and it has helped a lot. You have got to be your own advocate!

My previous pulmonologist put me on a CPAP even though my apneic episodes were the minimum required to qualify for a CPAP and told me to come back in six weeks. So, I found a new Pulmonologist who looked at the results from my MALTese and said sleep apnea wasn't my problem. I fell asleep each time in under one minute and went directly into REM three out of five times, which is narcolepsy.

Change Doctors if you have to. Demand testing (MSLT). Demand changing prescriptions if they aren't working. I am so glad to be out of the fog after so many years!

I am 57 yrs old and was diagnosed with hypersomnolence seven years ago. I am on Provigil 1 - 2 100 mg a day. I do not sleep for long periods of time usually 45 min. to an hour at a time. I am exhausted all the time and my health has been going down fast.

I can fall asleep within three minutes. I am still working, but it is a struggle. I have to take a nap on my lunch hour. It has changed me and I am not able to stay focused, organized and feel like I am in a fog most of the time. I am desperate for help. The doctors only say we don't know.

I've had chronic hypersomnolence for 45 years with no relief. I've seen probably 20 or 30 doctors, and the only thing that might've caused it was mono when I was 25. But, nothing seems to help as they've tried everything. I keep thinking someday I'll find relief, but my days are running out and I've missed out on so much fun that I couldn't participate in. --Rosie

This site was very helpful to me. My neurologist just recommended NuVigil, also. She also recommended another set of sleep studies since my husband has been complaining about my snoring and restlessness at night.

She thinks that I'm probably having sleep apnea which would also explain why taking the maximum amount of Provigil and Wellbutrin still isn't enough to keep me awake.

I was just diagnosed with severe hypersomnolence and narcolepsy. Can anyone gives some advice on this?

Nuvigil is just a newer version of Provigil. It is supposed to be longer acting. However, if you research NuVigil there is some interesting information on how drug companies "re-invent" certain medications. Such is the case with ProVigil and NuVigil. My doctor supplied me with samples until I see if Nuvigil will work properly.

I'm glad also to have found this site! I was diagnosed with severe hypersomnolence in 1992 and was told not to drink caffeine after 1 p.m. That's it!

A teacher of mine at the police academy confronted me one afternoon after about sleeping through his entire class. I was so embarrassed. I tried to make a joke of it by telling him "Don't take it personally, I sleep through all my classes." That's when I had my second MSLT and was again diagnosed with severe hypersomnolence but this time they prescribed Provigil.

I don't think I could live without it; I know I couldn't stay awake without it! The only problem I have had is the max allowable isn't enough.

I take 2 200mg every morning (5:30am) and it only lasts until 2 or 3 p.m. I also started taking Wellbutrin, which is time released, in the morning and it helps me get through mid-afternoon. I still end up fighting to stay awake past dinner time, though. This is the first I've heard of Nuvigil from anon64759. Anyone else know about it.

It is wonderful to hear from other people with similar sleeping problems. I have just recently been diagnosed with mild hypersomnolence and started taking Nuvigil.

I had to cut the dose in half because of severe depression and weird facial movements. I differ, however, because I have a long REM sleep. I dream every single night and they appear to end just as soon as my numerous alarm clocks go off.

I have tried music, not eating or drinking after six, lights on, lights off, and I still dream, dream, dream. I am exhausted in the morning because I feel like I have been everywhere during the night!

I have been like this all my life and it seems to be getting more extreme as I age (52). The doctor is hoping the Nuvigil will at least help me get going in the mornings but at a loss at the excessive dreams. I would love to just have a night with a "blank screen" in my head!

i have recently started having narcoleptic type episodes over the past seven months. I have fallen asleep at work and even on the road while driving.

I have gone for an EEG and that came back slightly abnormal, so they sent me for a over night polysomnogram which has now come back as possible hypersomnolence.

I have looked at the recommended medication but I am really afraid to take a stimulant (I have a history of drug abuse) and am currently taking lithium for bi-polar disorder. Can anyone relate?

I was on provigil for a short time. The only side effect I had was horrible depression. Back on ritalin.

I take three tablets of regular ritalin and three tablets of sustained release ritalin every day. This is a horrible sickness to have and what makes it worse is that people unfamiliar with it act like it's a joke. It's so frustrating.

I have had hypersomnolence since 2007 and I have been on Provigil 200mg/2 times a day for since that time. Without it I would be sound asleep within 3 minutes of closing my eyes. (and that was during the MLST) I have no apnea, no narcolepsy. I still am very tired. I also have trouble at night with nightmares (because I take other medications for borderline personality). I am happy on the provigil, actually. I wouldn't be able to hold a job without it. I couldn't even drive at my worst.

Does anyone else have trouble with nightmares? --mew

anon152505 You sound just like i did when i was in school. My mom had a friend who was a RN. All the doctors testing for it. Try Epstein Barr. it happens to be in the family as mononucleosis and i believe can be a virus. When I had it I was so overly tired I would fall asleep in school, almost standing up. Everyone thought since I was a teenager I was just up late. Until I had been diagnosed. It would come and go when I got older. But I have been told it can also lie dormant in your system.

I was diagnosed with fibromyalgia one year ago (had it for three) and early this year was diagnosed with idiopathic hypersomnolence as I can fall asleep within one minute if I let myself.

I have been taking legal dexamphetamine (30mg a day - 5 tablets taken at intervals during the day). So far they seem to be working. They are not accumulative so you feel the effect straight away and, according to my doctor, they have no extreme side effects.

You can work out when you need to take your tablets. For example I started with 2 in the morning, 2 at 11am and one in mid afternoon but found that 3 in the morning and 2 at 11 or 12 works better for me.

It's worth a try if other drugs aren't agreeing with you. good luck everyone.

I have been diagnosed with Idiopathic Hypersomnolence for over 6 years now. I stared on Provigil, which was great until my hair started falling out and my legs now have permanent swelling.

Has anyone else heard of these symptoms? I now take 4 Ritalin a day, at a higher dose than is legal. I have to get a prescription each month and take it into the drugstore each month. I still have "bad" days.

I've been diagnosed with Hypersomnolence and have started to take Provigil. It's helping me during the daytime. I was wondering if anyone knows how Hypersomnolence affects night time sleep? I feel as if I'm sleeping all night long, but still exhausted when I wake up.

I've worked graveyard shift for many years and lately I've been falling asleep during work, after work sooner than usual, and having almost an immediate sleep response to the sun going down to sleep. Could it be hyersomnolence or Narcolepsy?

I have always been a very sleepy person, I always slept from 9 to 12 hours per day, but when I was going through adolescence my schedule changed and I slept only 6 to 8 hours at night and I had to take long naps (4hours) to be awake, and also I was going through periods where i felt extremely tired, and I had low pressure, the lowest was 60, but when I would go to the doctor the exams said that everything was OK with me. I had to live with that but now that I'm 19 years old, those periods almost disappeared, I have them only 3 or 4 times in a year but I still don't know what it is, if it is Kleine Levin Syndrome or not. Please help me. --Marianela, Bolivia

I recently underwent a overnight polysomnogrpahy and multiple sleep latency test (MSLT) and was not diagnosed with narcolepsy but with severe hypersomnolence because during my MSLT there was only one instance of REM. My doctor prescribed me with Provigil 2 200mg pill/day. I was experiencing headaches and feeling dazed/looking through a window or zombie like all day and experiencing soreness in my eyes so I moved down to 1 200mg pill/day and it seems to be working okay with only occasional problems, but I have not been super regimented on taking it every morning.

I am glad I finally mentioned the problem to my doctor to get diagnosed. I was lucky there hasn't been any fatal accidents. If you are experiencing problems with sleeping you should definitely seek professional help, even if it is determined to be poor sleep habits!

I was diagnossedwith Narcolepsy about 3 months ago and my original diagnosis was severe hypersomnolence.

The main difference for me, from what I understand, is that I go into REM in about 5-10 minutes.

Provigil has helped me incredibly. I am currently on 2 pills of 200mg a day.

I always thought it was just me not getting enough sleep. My problem started back in my early high school days.

I highly recommend getting tested if you have ANY problems with sleeping or staying awake. I hate hearing stories of family of friends that have died or been seriously injured due to someone falling asleep.

Be safe,

Eddie

I have just recently been diagnosed with hypersomnolence. I went through the MSLT and regular sleep study and my results came back that I didn't have narcolepsy, restless leg syndrome, or abnormal oxygen levels. So, my doctor wanted to experiment with Provigil.

I have been on Provigil for about 3 months now and it has helped so much. I went from one tab/day(200mg) to 2tab/day(400mg) and am currently on 1.5 tab/day(300mg). I realized the 200mg wasn't helping enough and the 400mg caused some heart palpitations so I dropped back down to 300mg. I also had bad headaches for the first few months and had to take a lot of ibuprofen but I currently am very happy with the medication. I recommend trying it out, but give it time to work itself into your system.

Safe driving!

Amanda