Idiopathic Hypersomnia (Page 1)

I just came across your post and was wondering how you are doing? I've been diagnosed with the same thing after tests and doctors for over a year now. This thing we have is rare and I too am from Kentucky. That might just be a coincidence, but my doc and I are supposed to talk about clinical trials in August.

I got dx'ed a few months ago. I tried Nuvigil because my insurance won't approve Provigil. I think they are very closely related. Anyway, I felt sort of "foggy" for the month that I took it. I was getting strange headaches which were not bad but slightly there,hard to decribe. I had a bad tasted in my mouth some day. I had increase thirst. I was so sensitive to sounds and smells (esp when someone at work burned toast!)
I finally called the doctors office about these symptoms. They switched me to Adderall XR. I now feel more energetic and good. I started realizing that I was not doing well with Nuvigil. I felt awake constantly all day. I did get tired after 2p, slightly. I called the doctors office and got the dose increased. This has helped me immensely. I did not tell me employer. I did my job well before and now I don't have to struggle to stay awake like I did before. It's sad when you accept things to be normal when they really aren't. Thing can feel better! I didn't realize how tired I've been and that I had this problem for a long time. I am 44 yrs now. I went in the sleep study because I thought I had sleep apnea. I never know there was a dx like this. I wished I would known about this long ago. It changed the way I lived and did things. Good Luck

Hello 1rose,

I just got dx'ed two weeks ago with idiopathic Hypersomnia . Was not sure what to make off it. In 2008 it started that I could not function at all. Went to my regular doctor and he was good. Done blood test which revealed the outragous amount of B-12 in my system and one thing I did forget was the Ebstein Virus showed up. Which I was diagnosed with in 2003. He put me on Adderall . This year since my doctor moved away my current doctor was hestitant to continue the treatment. So I done research and tried Nuvigil and provigil. The Nuvigil did not do anything for me and really the Provigil just kept me awake for about 2 1/2 hrs. I had Meyers Infusion done which the nurse practioner noticed my slow speech. My Rheumatologist than told me go to ahead and have a sleep study done, which I did and now have IH. There are to forms of IH and I just done some more research and I had plenty of head injuries, menigities and the Ebbstein Virus. . I was for two weeks on 500mg Nuvigil which did not help at all and today was put back on Adderall XR. I did forgot to mention I had the Ebbstein virus so when I see my neurologist in two weeks I will tell him. Adderall helped me before to stay awake and to focus at my job. I have also Myfacial Pain syndrome which I believe causes the IH since I cant stay still for long. So like you I am almost 44 years old now and been struggling with this now for the last three years. I wish you all the best and hope there is a happier enjoyable future for us with this diagnoses.

Since I was a little girl, I have suffered from episodes of long sleep. On weekends I will sleep anywhere from 12-15 hours. The only reason I wake up is because my husband wakes me. If I didn't have someone to wake me up, there is no telling how long I would sleep.
On the other side of the coin, I have a full time job. When I don't sleep at least 10-12 hours, I am totally unable to wake myself. My husband attempts to wake me 7-8 times a morning, to which I may only remember 2-3. Those 2-3 times I do not feel conscious. I feel like I am in a fog. I care deeply about my job, and I know this is not intentional.
I've taken Tramadol as a pain relief, and the next morning I woke up with absolutely no problem. I tried the Tramadol again last night, and the same thing happened. I was able to wake up with no issues whatsoever. I believe Tramadol to be somewhat of a stimulant. It makes me hypersensitive to everything.
I am seeing a sleep specialist in a week and I could not be more excited to finally have some answers. Does this sound familiar to anyone? Do you think I could be suffering from hypersomnia?

I have been diagnosed with Fibromyalgia and Chronic Fatigue, and dealt with being late for work just like you for about 6 months before finally having to stop working altogether - I've been on Long Term Disability for almost 2 years and my condition has gotten progresively worse, despite breif periods of relief.

Don't expect much sympathy from your employer - its not that they won't have concern for you personally, its just that from a business standpoint, all employees need to be held to the same standards for performance, and those individuals who are unwilling or in our case unable to comply will be dealt with accordingly.

Before you're faced with serious disciplinary consequences, you must take urgent steps to obtain effective treatment and if you're faced with an untreatable problem a I was, you must take steps towards legal disability. Without that, you are not serving yourself well, and will ultimately flounder as a result of your illness, something that is unfair and unnecessary.

my son was recently diagnosed (june 08)with idiopathic hypersomnia, big words for debilitating sleepiness--he has lost jobs, had trouble finishing semesters in school--last week had slept for 36 hours straight, missing a whole day--not the first time, but the way.

I just wonder if anyone has had a successful recovery from this disorder--and how they got well. he is taking adderall and meds for depression. I am not seeing any improvement. I am concerned about his future. If he can only sleep, what kind of life is he going to have...

I don't know if you would call this a success story or an act of God. I have IHS, and Trigeminal Neuralgia. I did not like the jittery, agitated feeling I had while taking provigil- especially when coupled with a migraine or constant TN pain. I tend to feel side effects even with low doses of anything. I developed Trigeminal Neuralgia 10-15 years ago. I was finally diagnosed with it five years ago & was put on gabapentin. It is the first medication I have ever managed to continue taking long-term, because the improvement in TN pain episodes is significant. While reading this forum, it occurred to me that in the years since I started gabapentin, I have had a significant improvement in the IHS - to the point I can drive by myself for a couple hours and not have to stop for a nap. I used to have to stop sometimes after 30 minutes (!) I still occasionally have my moments and I do feel sleepiness as a side effect of gabapentin, so modify when I take it if I'm going to be driving all day in a situation where it will be impossible to nap. But I don't even have a second thought any more about driving places an hour or two away. There is an undeniable and incredible improvement in the IHS. I don't know if there is a connection to the gabapentin, but that is the only thing that has changed. Perhaps it would be something to ask your son's doctor. It's a pretty old med, there is a generic equivalent, it has a huge dosing range and relatively few side effects. I MUST SAY I AM NOT A MEDICAL PROFESSIONAL, JUST SOMEONE WHO NOTICED SOMETHING ABOUT MY MEDS AND MY CONDITIONS. If the gabapentin is actually what helped me, perhaps it could help someone else.

Well I would LOVE to know more about this topic because I have been going nuts trying to figure out what is wrong with me...I am taking a sleep study on the 10th of this month. This was the only thing on the internet I could find that resembled my problem but after reading about it, it just sounds like a death sentance. I am sick of living like this but it doesn't look like there is much out there other than to "regualte your sleep pattern and take drugs" and MAYBE that might help. Ugh,.
I need a minumum of 0 hours aof sleep each night, plus naps.
There have been days where I never woke up and slept right into the next day.
Sometimes when I wake up I feel drunk or goofey and can't get it together. It also feels like my face is "droopy" when I sleep too long. I have always been a sleepy person...I used to skip class in high school to come home and take naps. I am 34 now though and it has only gotten worse.
I hate feeling this way and don't want people to think I am "Lazy" because I am not. I am just exhausted and tired all the time and nothing helps! I will post again when I get done with my sleep study to let you know how it went.... Hope you are doing better yourself!

Hi this very sad it so difficult to cure this disorder. My sympthoms are not that severe like your Nalla but i am just 23 and I am afraid it would get worse (it WAS much worse last 5 years).

One insight that I have regarding this issue (maybe there is any corelation):

- did anyone have acne problems in the past?
- were anyone on a retinoid treatment (like roaccutane)

I was recently diagnosed (this week) with idiopathic hypersomnia. I have been experiencing these symptoms (extreme sleepiness despite how much I sleep or nap) for about 4-5 years now (I'm 21). When I was about 14 or 15 (before any of the hypersomnia issues began) I took accutane (for acne, of course) for several months.
That's interesting that you would ask about treatments like accutane... I never thought about a connection between that and any later issues I developed, but that would be a definite possibility.
I am wondering - Did you ask because you took it too?

Hi zbr5, I don't know if you will get this (it's been a few years since you posted), but I have primary/idiopathic hypersomnia and have had acne my whole life. I was on several courses of accutane over the years... Have you heard from other people? Thanks!

I am about to be tested for likely idiopathic hypersomnia, and the first other symptom I had besides the tiredness is acne. I haven't been on a retinoid treatment, though.

Hi zbr5, I don't know if you will get this (it's been a few years since you posted), but I have primary/idiopathic hypersomnia and have had acne my whole life. I was on several courses of accutane over the years... Have you heard from other people? Thanks!

Hi, I'm 39 (F) and have tried all kinds of things for my idiopathic HS. Provigil worked like a dream until I became immune. I tried 3 days on and 3 days off but that just meant I had the energy of a normal person half the time and would crash the other half. I have found tremendous success with ritalin as an adult (as a teenager it wasn't good, but the science has improved and your chemistry changes as an adult. also I think they tend to give you too much- I don't think you need a lot of either one of the drugs I've tried- provigil or ritalin. more isn't better (in fact it is counter productive imo). You just need enough that it makes you feel awake and rested after 8 hours of sleep). That's my 2 cents anyway. I have been able to accomplish so much more due to the ritalin, but sadly, it seems to be losing it's effectiveness now. I may consider taking a month or two vacation from it (I dread the idea of going back to sleeping all the time though)to see if it would work again if I re-introduce it. Don't get me wrong- it still helps- just not as much. I also notice that stress, excitement and travel (though I love to travel) can send me into a month or two hangover of oppressive exhaustion. Exercise helps (at least until I stop moving , but I find it extremely hard to get out and do it sometimes (although once I commit to a class or schedule and work out the logistics, I seem to be able to exercise a lot). Also I eat a healthy diet and try to limit sugar, alcohol and caffeine, which I believe helps (particularly the sugar/simple carbs) although it doesn't cure it by any means. Oh, and @zbr5, no bad acne problems for me (therefore no retinoid). My thyroid is a tiny bit low so my doctor is experimenting with different thyroid meds for me. I wonder a little if maybe that is impacting the effectiveness of the ritalin. Hmm. Also my dad has it too and responds pretty well to Ritalin (though still takes naps like I do- they are just shorter and more refreshing on ritalin). Anyway, just thought I'd share my experience. I do wonder if there are any new advances in understanding the causes. Sometimes I think it ties in with ADD (I am not hyperactive, but sometimes my mind is and it seems like I knock myself out with overwhelm) and also maybe with the profile of a more creative person (I am highly creative- is this a common trait associated with IH?)

Hi, I'm new. Alot of boards are closed to new postings so this is a test before I type out story. Thanks.

Hi, first time here. I was diagnosed with idiopathic hypersomnia a few months ago after a nighttime sleep study followed by a daytime nap study. I don't have apnea but can basically fall asleep at any time of day.

I had my follow up a few days ago and was prescribed ritalin. It's only my second day on a low dosage (5mg 2x per day) but I feel weird (speedy). I feel like I am getting high instead of taking something to combat a physical/mental illness.

I have definitely been super low-energy my entire life and am a kind of interested to see if this will make me feel like I would ideally feel with normal energy. I am a grad student and work so I need all that I can get. But I also have a bit of social anxiety so I don't know if this will make me come out of my shell or just make me jumpy and overthink every social interaction.

I hope someone is out there who feels the same and maybe we can support eachother with advice and anecdotes. I want to feel better with feeling like a speedfreak.

Hello
I have been been ultra sleepy for most of my life, with increasing severity. I slept through school and after that I just laid down on my bed and stayed that way ever since. I sleep 12-16 hours and is very sleepy the rest of time. I perform like a moderately drunk person, bad motor coordination and mentally slowed down. I'm very close to being dead lifestyle wise.

I've tried a few things that I would like to share. First, I did the mistake of not getting a bunch of tests to get a clear view of what's going. I just went straight for the uppers. I spent a year or two on ritalin which worked well, almost making me normal but then I burned out and feel 10x worse than before. I later found out there a number of things that could have prevented that but now is too late. There are many drugs and so called dietry supplements out there than can accomplish almost the same as stimulants but it's unfortunately so easy to get ahold of an upper.

My advice regarding Ritalin is to not take it unless you are completely checked for any possible underlying condition such as slow thyroid, testosterone, hgh etc. Also, make sure your body is tuned to the optimal with diet and supplements before starting. Make sure you don't lack any nutrients such as vitamin D. Third, see how much you can get out of supplements in terms of reducing the problem. There are many out there such as various amino acids, 'racetams, AlCAR, ginseng and so on. Many of them have a marginal effect but the right combination can help cut your need for stimulants. Finally, when you have done all that, don't take ritalin alone. It will not last if you do that. You have to take it with other meds, that way you can reduce the dose/side effects + most importantly you will not burn out. Feeling 'wired' is definitely a BAD sign, it means you are building tolerance quickly and it's not too healthy either.

The whole problems with uppers is that they're not sustainable on their own but you often learn that too late. I'm completely burned through now, not even illegal stimulants have any significant effect on me(not that I would want to take them).

This is not medical advice

PS: I get acne too, it seems like oversleeping makes it worse

ihadi this condition for years, it got worse and worse and since i started to work in the hospital, what means early hours, my social life came to a total halt. all i can do is work and sleep. i feel suicidal, not because i want to die, but cos i don't want to live. every day is a struggle. i cry every morning when getting up, feel groggy all day,and always exhausted. i really feel desperate and depressed. never had acne problems, though, all blood tests came up clear, so no thyroide or anth like this. will try to get appt with neurologist.. horrible way to live a life...

I am so glad to see that I am not alone in having this disorder! You're right, this is no way to live. Feels like I am just drifting along, in a daze. It is so frustrating. I have no social life because I have no energy to do anything, sometimes I barely make it through work- the drowsiness causes me to make mistakes and I can't lose my job! Sometimes I just want to totally give into it and stop the constant struggle. I'm not saying that I don't have my good days, because I do, they are just very few and far between. Even if I get 12 hours of sleep I am still exhuasted. And no one understands. It is so easy for soomeone to say just take a nap or just get up and get moving, quit being lazy- if only it was that simple! My doctor is trying me on different medications, but starting out slow because I've "wigged out" on them before. Nuvigil seemed to help for just a little while, but it's like my body has become immune to it- almost back to square one! Why is it so hard to find effective treatment and treatment that stands the test of time?!

just because your thyroid blood work came back normal doesnt mean it is not your thyroid first of all they lowered the range for the tsh test(on the blood work) and not all doctors know that or acknowledge it plus not all thyroid problem show up on blood work you should try the basal body temperature test all you need is a thermometer and check your under arm body temp upon waking(test pioneered by broda barnes) if your temp is well under 97.8 you probably have thyroid problems you can find a doc by contacting brodabarnes foundation i had idiopathic hypersomnia for 20 years and now cured

What are the symptoms of this illness and how do they diagnose you? Some days I have energy and other days I can't get off the couch and feel like I want to sleep all day.

fatigued tired and any other thyroid symptoms weight problems feeling cold chronic infections hair loss joint pain sometime depression dry itchy skin bowel problems and many more but you don't necessarily get all symptoms sometimes just a couple -regular doctors give you blood tests {which you have to check the ranges, many doctors changed the range of the tsh test to 3 instead of 5 so if you have symptoms and your tsh is above 3 you may need thyroid medicine} and urine test but some doctors also use this temperature test when you have symptoms but the blood work comes back normal as the blood tests for thyroid are not very reliable you can do the temperature test yourself

my daughter is 16 and diagnosed with idiopatic hypersomnia ...she had her sleep study and that's what the doctor said...
she is homebound and no longer at school. she has maybe a half of a good day every week.her meds are not right yet..
i am going to make an appointment with an idocrinologist monday to get to recheck her thyroid...i just pray that is the problem...since that does run in the family.

thanks for the help...

i must tell you that my daughter was miss diagnosed with bi-polar disorder first...

i had been misdiagnosed with ADD for 5 years, then idiopathic hypersomnia(have been on every stimmulant in the book and even tried xyrem) till i was 23, I then discovered hypothyroid. though i must warn you even if her tsh comes back in normal range check the exact number as many endocrinologist wont care as long as the number is somewhat normal and the range has been lowered to 3 or some as low as 2.5 many doctors wont tell you that. i had been to endocrinologists my whole life and my tsh was around 5 so even though some considered it high i was never treated because the doctors felt it was close enough to normal. and I agree if you feel fine and have no symptoms but if you are always tired it must be treated good luck to (if you have trouble getting your endocrinologist to work with you you need to find an integrative or alternative md or you can contact the broda barnes{brodabarnes.org} foundation that is how i found a doc to help me)

My brother and I have also been very tired growing up. We would sleep everywhere we would go so my mom would alway say what good kids we were. How bad are kids that are sleeping? Anyway he has had 2 car accidents falling asleep driving and I have come close many of times. Getting up for work was always so hard. And staying awake all day was the worst. Then a nap everyday as soon as I got home and to bed early. I did a sleep study at age approx 40. Took me that long before any doctor would actually do something. They diagnosed me with sleep apnea in which I cannot sleep with that contraption on me and I slept less with it. About 3 months ago I started taking Provigil. It was wonderful. I get up early wide awake and stayed awake all day and at bedtime I was out. Now I still get up early but by 1-3 oclock I cannot keep my eyes open. I tried taking a bigger dose but no change. Now my anxiety I guess is acting up. I feel I cannot get enough air and have to really try and relax plus I am now taking klonopen for it which sometimes helps. Plus I already take celexa for about 9 years and trying new cybalta to see if it works better. So far no success. I get so tired of being tired and I think my breathing issue is making me more tired. I have good mood days and other days I just want to cry. I hate the I feel most of the time. I am wondering if I should go see someone else?

Hi all with idiopatic hypersomia.
i feel i lost 40 years of my life before i got diagnos with this disorder,feeling all my life being treat as lazy one, a least now i know this wasn't true.i'm hard working person,and no one can tell me i'm worse that any one else.keep faith&keep do you best,and all will be fine.i find out that less sleep make my disorder less complicated,if i sleep more then 6.5 hours a night that make me more tierd. with ritalin 60mg a day,10mg every 2 hours i'm existing,but this is not life.if i need have to done anything at evening i take extra dose.but i never sleep more then 6.5 hours,because i'll be not able to do anything,the more i sleep the less productive i'm.and i can't affore it.but no one understand my disorder,and is very hurtful.living alone life avoiding criticism from others.learn living with myself after 8 years ago i was diagnost with this crasy sleeping disorder.peace to all of you.

Hello I am a 33 year old stay at home mother of 2 children. I used to work until about 3 or 4 years ago. I really had not choice but to stop working. I was so tired all the time. I was also so depressed I think from being so tired and not being able to just take naps as needed because of working. Being a single mom you do not have that luxury. So instead I did everything I had to do to stay awake. I would not sit unless I had to or I would fall asleep almost instantly. It got so bad that I finally started falling a sleep standing up. I went to the doctors office and told them that something was wrong that I would sleep 10 to 14 hours a night and would wake up so very tired that I would have to lay down and take a nap in less then an hour and it would last at least 2 to 3 hours then wake up and still be tired. I could not watch movies I would fall asleep every time. I could not do anything with out falling asleep even sex. It was so bad. So I went to the doctor to see about sleep apnea which is what I thought it was. He thought that it was narcolepsy boy was I shocked did not believe him. Through keeping a sleep diary I found that I had been doing many many things in my sleep. I was cooking meals while talking on the phone with my mom, I was driving, I was cleaning, I was taking care of my baby. I found all this out because with the diary I would put down when I woke up. I could not remember falling asleep. The more I did this the more I realized that there were periods of my day that I could not remember like how I got some where when driving. The trip would seem so short. I could remember leaving and then remember looking for a parking spot at the mall about a 20 minute drive on a 70 mile and hour road. I was having waking dreams which I thought were real so I thought that I had some kind of schizophrenia. I had found out that I was falling asleep 11 to 18 times an hour all day long. I caught some of them but not all of them. I stopped driving. I went for my test it ruled out apnea and narcolepsy as well. I had idiopathic hypersomnia. I wake up 200 times an hour from R.E.M sleep to the almost waking state just not enough to know that I am waking up. So no matter how much I sleep I am always tired. I was diagnosed with Bi-Polar disorder a few years back. Now that I am on Provigil for this I feel so much better. I am not even on the meds for bi-polar. I believe that I was mis-diagnosed. Which sucks. I do worry about becoming used to it and hope that it does not happen. I was on aderall for a while. I worked so well then it slowly stopped working and it did not work at all. I had to go on provigil. I feel that I was cheated out of life. I slept through it with out knowing and was on all kinds of meds that made me feel weird for bi-polar which I did not have to begin with. I wonder how much bi-polar is mis-diagnosed for IH. I am not sure with the Ritalin but with the aderall it makes your BP go up. Mine was way up. I had to come off immediately. I bp was 175/54 usually I run about 78/55. That has been my norm for my whole life. I am so glad that this med works for me. I hope that you all have the same luck with it that I have. It is so terrible to have this no one believes you they just believe that you are lazy. I am not lazy I am just tired. There is a difference.

I''m RuthAnn, 25yo white female from western Washington. Since around high school I was really hard to get up for school in the morning and fell asleep in class once in a while. As I got older I''ve been sleeping more and more, although I''m a "nite person". I slept from Sunday morning until Thursday night right before this last Christmas only waking up for about an hour (maybe 2) each day for the b-room or to eat something, then I was real tired and went back to sleep for another 14+ hours or so. I don''t really have much acne but my doc thinks I have neurodermatitis which causes my unusual acne type skin "thinys" that are around my upper back, chest, shoulders, and neck but they do tend to show up more when I have my major sleeps. Is anyone else able to stay awake for a day or two sometimes? I used to work 6am-3pm and then 9pm-5am on Fridays and I would just find it easier to stay up then to try waking up from a nap between shifts and if I had something to do Sat I would go do that but then have work that night so I wouldn''t sleep Friday, Saturday and Sunday morning - usually crashed at dawn Sundays. I have my first neurologist appt wednesday (may 12) and hope they just don''t tell me i''m lazy, lol. anyone have any insight?