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Group: Forum Members
Active: 3/23/2008
Posts: 2 |
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| Quote: 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 |
Hi Tracey, I am facing this problem for last 3 years now and it has got worse in the last 6 months or so. Went through several tests / scans etc. . Recently just a week back underwent MSLT and polysonography, which ruled out Sleep Apnea and Nacrolepsy. Doc says it is Idiopathic hypersomnia. I am not sure yet if the diagnosis is correct. I am in touch with doctor friends, who are trying to get me a second opinion with another specialist. I am on Modalert 200mg daily, which seems to keep my eyes open but causes lot of strain around the head / eyes. Vyas |
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Group: Forum Members
Active: 3/23/2008
Posts: 2 |
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| Quote: 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 p... |
Hi This is quite useful. I have gone through pretty much the same process as you for the last 3 years now. Only last week, I did a polysonographic plus MSLT. Five naps during day time at intervals of 90 minutes, for 20 minutes each. I slept on all five ocassions, but no REM sleep. The previous night Polyson test showed very mild apnea, cannot cause the kind of day time sleepiness experienced. As a kid, I used to have very deep sleep and had habit of sleeping in the afternoon. No one could dare to wake me up. But I never had problems keeping awake even if I had not slept for 2 consecutive nights. I am now on modalert 200mg daily (stimulant, which I think is provigil / modafil), it keeps me awake but cause tension / aches the eyes and surrounding region. I have found that I feel better when the sun is out, and it seems to get worse during winter / gloomy days. RVV |
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Group: Forum Members
Active: 5/16/2008
Posts: 1 |
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| I was just diagnosed with Idiopathic Hypersomnia last November. I have been tired for as long as I remember. My favorite past time is too sleep. I'm ALWAYS tired, always have been. I had complained to my doctor but since my Mom and brother both are the same way I figured it was genetic thing that I was going to have to live with. Last November at another dct's appt while checking my symptoms he asked me if I had been tired. I start laughing at him and said "Dr, I've been telling you how tired I am for years.." And that's when I was sent to the sleep clinic. Long story short, my oversight sleep test proved that I didn't have apnea and my daytime sleepiness study had me falling asleep within 5-6 minutes, which is slightly longer than an narcoleptic but much shorter than the average person. My sleep doctor prescribed Provigil, 200 mg once a day. I was overjoyed that I was finally going to be this other person, this person who enjoys life and doesn't count the hours until I can sleep again. The Provigil didn't work. I could take a Provigil and then go back to bed. I was upset, so disappointed. Then the sleep doctor bumped me up to 200 mg twice a day. I was starting to feel better. Then he added Ritalin so I would take a Ritalin in between the Provigil's. Now, I am SO much better. I alter my dosage depending on my days, sometimes 200, sometimes 400 and rarely 600mg. I am so thankful that my medication is finally working. I can actually get through a whole day without thinking about taking a nap. I have heard that after a while the Provigil will stop working for me. I pray that never happens... |
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Group: Forum Members
Active: 5/28/2008
Posts: 5 |
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| I think I have idiopathic hypersomnia... I am having a sleep study done in two weeks to try to get more definitive answers. I am getting freaked out and nervous- but I am nervous because I am so afraid the test won't show anything. Does that make sense to anyone? Probably does, since you cool people are all like me.  I so badly want a name for what is wrong with me. The doctor said he thinks it may be hypersomnia, but won't say for sure yet. After learning more about it, my mom (a nurse, that always helps to have mommy be so understanding  ) is so convinced that is what I have. The symptoms fit me so well, except I dream all the time and remeber them vividly, which is more a narcoleptic thing... But what if I have the test and the doc is like, nope, you're fine, you really are just lazy? Or what if the day of the MSLT (I might have those initials wrong... I'm sleepy) I'm not tired like I normally am and don't fall asleep like I usually do and they think I am a big drama queen? Argh. I've read some of you have had more than one sleep study. So am I wrong in feeling like this is my one chance to be taken seriously? |
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 Posted 11/12/2008 10:14 PM |
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Group: Forum Members
Active: 1/13/2009
Posts: 1 |
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| im a 26 yr old male who was diagnosed 3 years ago with this, my doctor had been great for me. though improvements have been mild, a few things that may help some of you out are.... Try a different alarm everynow and again, i use my cell phone alarm and change the ringer every so often. support is great to have as well, i have had issues with relationships, job and parents about it since ive had it. If you have someone to wake you up, that can affect your response, if your awoke in an aggressive manner well chances are you'll re-act with aggression. Dont do anything too nerve wrecking before bedtime, chill out watch some tv anything to relax before bedtime, dont go to bed with a heavy mind! it helps. another thing my doctor told me which does make sense is that I.H. could be an offspring of ADHD or ADD that may have went untreated or treated improperly, which i did have. I cant be sure how long i have had this disorder but like the rest of you i knew something had to be done. my sleep record is actually 28hrs straight without waking for anything!!! I have had an overnight sleep study and a nap test done and my stats blew away all the doctors that seen them, I do hate having this but all you can do is make the best of it and do what you can and maybe one day there'll be a clear answer to this. i hope ive helped some of you out, if anyone has any questions feel free to drop me a line and maybe i can help! |
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| Posted 11/17/2008 5:50 PM |
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Group: Forum Members
Active: 11/21/2008
Posts: 1 |
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I'm new to the forum- as a matter of fact, I'm not entirely sure that this is the right place for me to start asking questions, so please bear with me. I've had insomnia since I was 10 years old. I was diagnosed as a Fibromyalgiac, as well as having Chronic Fatigue Syndrome. In combination, I have little chance of sleeping well. However, lately, I've either HAD to sleep up to 18 hours a day or I haven't been able to sleep at all(2-4 hours a day). I'm not sure WHAT I have in regard to hypersomnia, but would welcome any insight or similar issues. All I know is that either I'm so exhausted either way that I simply can't function reasonably; I miss appointments, can't remember to pay bills, return phone calls, etc. It's misery! |
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| Posted 1/11/2009 10:17 PM |
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Group: Forum Members
Active: 1/17/2009
Posts: 1 |
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It sure is nice tio find others who are dealing with this. i was recently diagnosed and in doing research think I have had this most of my life. It recently accelerated to from being manageable to being a nightmare. i was off work for a few months and am now fighting for the insurance money. It seems no one understands this is not just about feeling sleepy. I get sleep attacks that if I ignore them, I will fall asleep anywhere. My brain goes fuzzy and I do the automatic responce thing. Scary when I drive for a living. I tried one medication whcih did not work well and now am taking Concerta. While it helps most days, some days are still a write off. Does anyone have any ideas for a better medication? |
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Group: Forum Members
Active: 3/8/2009
Posts: 1 |
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| Hello, I have read many of these listings. I have found that many of you are very diligent in your search.. I would have to agree that this is a life long troubling issue. I would also like to refer to that many of the listings state sleep studies that have been done many years ago. There are alot of changes and new understanding that may be applicable. I would also like to add that one may have more than one sleep disorder at a time and that ruling out a diagnosis in favor of another more seemingly applicable may possibly hinder complete resolve and future diagnosis. It is quite possible (very rare of course) to be diagnosed with OSA, Narcolepsy and insomnia all together. This would generally take a lengthy time and mulitple sleep studies and likely numerious medication trials to complete. My point is that if one truly desires to find the truth behind there symtoms they sould follow the advice of there physician and keep them informed as diligently as possible to the continual symtoms and also resolved ones. Understanding that each diagnosis and applicable therapy is not one that will likely be discontinued with a future diagnosis, but likely have it's therapy added to the therapy already being used. My purpose is for each individual that suffers from a sleep related issue as I do find there resolve as I did. Have to use a Hannibal device (as stated in one of the listings) better known as a CPAP machine and or having to take unwanted medications are a seemingly unfortuante dealings some of us need to experience each night to ensure quality sleep and even more importantly to ensure that all the other Serious health risks involved with untreated sleep diorders are kept in check. THank You for reading!! |
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Group: Forum Members
Active: 2/28/2009
Posts: 1 |
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Hi there. I just left my "sleep doctor's" office yesterday and was told he does not know how to help me. He is putting me on a combination of drugs to see if that will help with daytime sleepiness and help me perform better at work. I am in danger of losing my job. Anyway, I am trying a combo of adderall and provigil. I asked him if I have a diagnosis and he said that he has to be honest, he does not know what is going on for me. He has helped be cause he is the first doc that didn't just pass me off and say you have idopathic excessive daytime sleepiness. He was able to look at the two sleep studies I have had and saw that I spend very little time in delta sleep. There is no evident reason for this. I do not have sleep apnea or RLS or any of the other "typical" ones. (please know that I am not discounting those disorders) At one time my PCP thought I might have narcolepsy but that has been ruled out since the discovery of no delta sleep. I am a 49 year old woman. I have a history of depression but it is managed with medication and I know when I am depressed and I actually have felt really good the last couple years. I am happy with my life except now this sleep thing. I read in a message somewhere that mononucleosis may be somehow connected with some sleep disorders. I had an extreme case of it in my Junior year. I was in bed for 3 months right through the summer. I really think that I have not felt right since then. I have always needed more sleep than others. My kids remember me saying all the time "I just need 10 minutes to sleep". I have felt lazy all my life, not being able to keep up with others and their energy. My ex-inlaws have a dark house and so do my parents. When I went there, I would just want to sleep. Not just "want" to HAD to. I have had sleep attacks when driving where I would pull over and sleep for 10 minutes and feel better which happened on long drives. When I realized I have a problem, I had just had what I thought was a good nights sleep. I got ready for work and started the 11 minute drive. I didn't make it; I had to pull over for a sleep attack. I had been fighting these attacks at work and actually did fall asleep at my desk many times. So my work quality of work is excellent, it just takes me so long to get things done. I do disability case management and have to be able to process my cases in a timely fashion but have not been able to keep up. I am now facing a 6mth work improvement plan. I don't know what will happen after that. I have, on my own, asked my PCP to schedule me with a Psychiatrist to check my meds and also a Psychologist to do some cognitive testing. I have had all the neuro testing, CT, all that with no problems. Then my next step is to go to a place my sleep doc knows that specializes in people with sleep disorders other than disorders caused by physical problems. I know this is long but I feel alone out here. Any thoughts out there? Anyone relate? Would love to hear from anyone. I am getting scared about the possibility of losing my job. I am single and have no one to rely on for help which I don't want to do anyway. aauuughhh! Sometimes I just have to vent. I am glad I found this site. |
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Group: Forum Members
Active: 2/28/2009
Posts: 1 |
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Tamara
You may have more than one problem. A great primary doctor did not take my complaints of always being tired even if I sleep 10 or more hours. After ruling out the usually problems she sent me to the sleep center. There after the over night sleep study and multiple sleep latency test I was diagnosis with idiopathic hypersomnolence. The doctor put me on Provigil and I take 400 mg a day. That worked somewhat but I was stil tired. When I went back to the doctor and a bit of a discussion she said I also have what they call a "sleepy brain" or more commonly called Long Sleep Time. People with long sleep time need anywhere from 10 to 12 sometimes even 14 hours of sleep. The problem was being complicated by the fact that I was always a night person and am better if I can go to bed at 4am and get up around 1 or 2 pm (circadian rhythm disorder). My job use to have flex hours so that I could work that schedule but then the night hours were eliminated so I had to work a more normal schedule which was making things more complicated as I was not getting enough sleep.
She said fighting my normal sleep cycle is not helping. Since I have a bit of flexibility with work I am trying to work out a schedule that works for me.
You sound alot like me (especially the dark house as I don't like bright lights and even have room darkening shageds). You are not lazy.
You need to find a really good sleep specialist.
Once you get the right diagnosis you will have some leverage with work as under the American Disabilites Act that do have to try and work something out for you.
Simon
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