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 Posted 2/21/2007 11:22 AM |
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Group: Forum Members
Active: 10/18/2007
Posts: 3 |
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Looking to compare those with this same disorder who would like to compare treatments! Desperate for somone who can relate! Maybe we can help eachother! Tracey |
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Group: Forum Members
Active: 2/25/2007
Posts: 1 |
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Hello Tracey. My name is Lisa and have idiopathic hypersomnia. I sleep for at least 12 hours a day. I´ve done a sleep study overnight, couple of years ago. But the doctor didn´t have any suggestions for treatment. I had to force my primary physician to give a referral to the sleep clinic. I am so desperate to find any treatment/medication who can help me to reduce the amount of sleep I need to function during the day. Unfortunately I have to find this myself, I don´t have a doctor who will do it for me. I also would like to come in contact with others of this disease, who can share their progress in this matter. Lisa |
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Group: Forum Members
Active: 3/6/2009
Posts: 3 |
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Hi Tracy, I have Idiopathic Hypersomnia. I am right now at the point of losing my job or going on disability. I have had an attorney for over a year to help me with my position at work. What kinds of problems are you experiencing? Any different problems, besides sleeping? Theresa |
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Group: Forum Members
Active: 5/19/2007
Posts: 3 |
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| Hey, i've been researching a little lately because I've been sleeping so much and I think this is what my problem is. I have always slept a lot and always still been tired throughout the day. But today I realized how bad it has become. I actually slept for 13 hours and I still feel tired. At first I thought it was narcolepsy but I don't have those muscle problems or seeing wierd things before sleeping. Has anyone actually got treament or advice on how to fix this problem? |
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Group: Forum Members
Active: 5/19/2007
Posts: 3 |
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Hypersomnia that develops after a viral infection, such as atypical viral pneumonia, mononucleosis, or Guillain-Barre syndrome, usually develops within weeks or months after the infection. Individuals complain of fatigue and somnolence and may sleep most of the 24-hour day. The outcome is favorable, but the resolution may take months or years. [14]
I can't believe this... I had mononucleosis in middle school and my mom has always said it has seemed like I have never recovered from it. (the sleepiness part) |
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Group: Forum Members
Active: 5/19/2007
Posts: 3 |
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Treatment of idiopathic hypersomnia is far from satisfactory. Stimulant drugs, such as dextroamphetamine, methylphenidate, mazindol, or
581
pemoline, are the most commonly prescribed medications
dextroamphetamine = adderall
I need to try this asap. |
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Group: Forum Members
Active: 10/18/2007
Posts: 3 |
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About me...  Hmmm in a nutshell I had always had a problem waking up. It has been said, that I would be very mean and nasty to anyone who would attempt to wake me, cursing and screaming. I don't recall being like this. There was VERY little that could wake me up after trying stereo alarm, as well as those clocks that guaranteed for people to hear; not me! I have even been fired from jobs for over sleeping on more than once occasion. I was the blunt of most jokes and constantly hearing "Tracey is sleeping her life away" or I heard this was all in my head, and I wasn't waking up because I didn't want to. My average was 12 - 14 hours at a time. One occasion I slept 18 hours! About 8 years ago I went to a sleep study. The first night was ok, I felt a lil uncomfortable, so I was able to wake up on request easier than I'd ever have done. However, at that time I was diagnosed with sleep apnea. I denied this diagnosis after researching sleep apnea and reading it has very little to do with excessive sleep. I did my next study hooked up to the machine used for people with s.a. I felt like Hannibal Lector and was uncomfortable (to say the least). In the morning, a tech came in and woke me up. She was laughing and asked if I remembered anything that night, I did not. She explained that one of the many wires connected to me had come off and they were not getting a proper reading, she said I could not be woken and it took 2 techs and a housekeeper to roll me over to reattach the wire. I WAS SOOOO EMBARRASSED! I continued my research on sleep problems for excessive sleep and found Idiopathic Hypersomnia and it sounded like they were describing me! I went to a sleep doctor who argued my problem as Sleep Apnea. I left this doctor, in search of another. I found my current doctor 7 years ago at Johns Hopkins Hospital in Baltimore, MD. I went to another sleep clinic and had another test. This test was different, as I was not allowed to sleep through the night, but was woken up several times and was not suppose to go back to sleep; sometimes I could not stay awake, other times I fought it. (I was suppose to stay awake for 10 -15 minutes at a time) I advised my 2nd doctor of my research and he had me keep a diary for a week on my sleeping habits. At the time after practicing in sleep disorders 11 years, he had never seen anyone with my problem. Currently he treats 2 others with the same problem. He explained that people go into 3 stages of sleep. The first you are in as your are falling asleep, the second stage is the longest, and the third you are in about 15 minutes before waking up. I was not leaving the 2nd stage. I was placed on Pemoline, my doctor referred to as "time released sleep lol. This was my miracle!!!! I could wake up on my own only using an average alarm clock. Sometimes I would wake up a few minutes prior to my alarm. Unfortunately this medication has sine been removed and is no longer available. I have research this disorder as best I can and have looked for “studies” being conducted, about this disorder. My current doctor advised, I am unlikely to find any research being done, because it is so rare. For “studies” to be conducted, there has to be a certain number of people who suffer from a disorder, otherwise it is not cost effective! Go Figure!!!! After trying approximately 4-5 different meds that had I had no response to I was placed on Dexedrine Spansules. (which I currently take also be advised this medication for name brand is $397, Generic can be found for $187). This worked better than anything, although not as well as the Pemoline! Despite comments made by “really stupid” this condition is a life long illness and although I have yet to see anything linking this disorder to any viral infections, it is closely linked to some type of psychotic disorder such as depression. ( I have been diagnosed with depression at 21, I am now 38) All I guess any of us can do is keep researching, and make postings on web sites such as this and compare other peoples relations to this disorder!  |
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| Posted 5/31/2007 11:22 PM |
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Group: Forum Members
Active: 7/26/2007
Posts: 4 |
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| Idopathic Hypersomnolence, from what i have read, is a life long disorder with no cure at this time. It is different than narcolepsy in that we do not feel refreshed after naps and the stimulant medications used to help control daytime drowsiness do not work as well on us as with narcolepsy patients. It does require a lifestyle change and typically a person begins to show symptoms in their teans to twenties. I use to be able to hold down three jobs two kids and a marriage. Now i struggle with 3/4 time work and 3/4 time school and single parenting of 2. It is very frustrating when you are adjusting to the different level of functioning and I have to grieve over all of the things that are much more difficult for me to do now. Certain antidepressant medications help with how long we remain in REM sleep, my doctor informed me after my sleep study that I go into REM sleep way too fast and stay there way too long, although i have trouble waking up. Alarms don't wake me up, a phone ringing use to wake me up but not anymore, only a human really can wake me up now days. Hypersomnolence is not related to psychotic disorders, many of the psuchotropic medications cause drowsiness but that is different. Symptoms of hypersomnia are often misdiagnosed as depression because some of the symptoms are similar (like sleeping more, lol) but it does not mean a person is truly clinically depressed. A person may become depressed about losing abilities due to the disorder also but no research I have come across states it is significantly linked to any mental illness. |
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| Posted 10/17/2007 7:52 PM |
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Group: Forum Members
Active: 7/24/2009
Posts: 14 |
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After not being able to wake up in the morning pretty much my whole life, I underwent treatment for depression about 2 years ago (docs thought sleeping = depression). When the sleeping got worse while I was on antidepressants, my internist suggested a sleep study in January this year.
The results led to a second study with an MSLT, which suggested narcolepsy and restless leg. I then was sent to a specialist who did a third sleep study and second MSLT while treating me for restless leg. The drug treatment (Requip) made me sleep way more and I almost lost my job from oversleeping. The third sleep study results showed I went into REM in one of the 5 naps, so now the doc says idiopathic hypersomnia and Restless Leg.
Now I quit taking the RLS meds and am searching for a new doctor. Also, I'm trying to convince myself that even though I have a diagnosis that has no good treatment course I'm not doomed. Anyone else have experience treating RLS and IH?
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Group: Forum Members
Active: 3/22/2008
Posts: 1 |
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| Hello there. Im a 24.f. from australia, i may have some info for you here in my story, i have tried to make it as short as possible concidering....I have been suffering with alot of symptoms for the past 5 years. At first my GP (1)of 14 years sent me for a brain scan which showed sinus. He then sent me for a EEG, i am unsure of these results. I then ended up in emergency dept due to family concerned about me acting extreemly drunklike (when sober,lol) I then was sent to an adult mental health team who only could see me for 3 months, which they did and if they could not treat what i had i was moved to the primary mental health team, Who i have liased with for 1.5 years. In this time the phych i seen gave me lots of valium then started depression medication Effexor xr which in the end gave major suicide thaughts and severe other symptoms, which then they upped the dose....and then upped it more untill i vertually slept night and day. I was then told i had to slowly cut down and ween off of this medication (go figure), (Which was a major nightmare) felt like a major heroin user locked in a room for a month! With knowing a drug called Duromine helped me with the symptoms i accuired* that to help me. I had to order a sleep study (2 month wait) and was prescribed Lexapro... which i dont think helped at all but was instructed to keep taking it, i had the sleep study (off duromine for 5 days prior) which GP(1) says minor apnoea. I had my daughter seeing a different GP (2) who likes or is good with dealing with childeren, while there with her i asked him what he thaught, an hour later, a refferal to a psych which he spoke to on the phone while i was there, and was given advice to keep me on the duromine untill i see him (for ADD inattentive type on the referral). i seen him urgently (2 week wait) The sleep study clinic reguested to have a MSLT, which i waited 2 months for, did it then a month for the result. I seen the psych who confirmed the inattentive ADD but said the sleep and tiredness was a seperate condition, he wants the MSLT results befor he can do more. He viewed my school reports, Gave me more duromine prescription, he will be putting me on other stimulant nect i see him, which he said would me dexamphetamine or ritalin, which ever affects me better, and wants to see me again with my mum and he says it was there when i was a kid. Only 3 days ago i got the MSLT results which rule out narcolepsy and cataplexy, but says Confirmed hypersomnolence. 1 REM sleep out of 5, sleept in all 5 aswell. which this brings me here, i see the ADD psych on the 2nd of april with mum in toe. I hope this gives you a bit of info, Take Care! Leah. |
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