By Anonymous - 20/09/2009 05:03 - United States

Today, I found out I have hypersomnia, which is basically being constantly tired. I've been treated with depression for years because the symptoms are similar. I've failed out of college three times because of this. Now, I think I really am depressed. FML
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BeHarsh27 tells us more.

OP here. I've been on 3 different depression meds before this. The first didnt do hardly anything, the second made me really moody and pretty much angry constantly no matter the situation, and the last seemed to help some, but not all that much. I had a sleep study not long ago and actually got some concrete results from it. I can fall asleep in minutes (normal is like 15 to 20 I think) and I get to REM sleep in less than 15 minutes (again, normal is like ~1 hour). So its not a problem with me not getting to sleep for the one suggesting pot, lol. As of now I'm taking Ritalin, the second recommended drug for hypersomnia. The "suggested" medication is Provigil, but its way too expensive for me to afford even with insurance. The times I tried to go to school was for music performance. I did progressively "better" each time I went, being better prepared each time, but that still didnt keep me from sleeping too late, missing classes, and subsequently getting so far behind that it seemed useless to go anyway. I'm currently looking into game design schools (level design specifically, not programming/animation) as I got a little burned out on the music thing. Thanks for the feedback, its good to know theres others out there dealing with the same thing I am.

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Ouch. My mom has that too. She's been prescribed a medication that's pretty much the exact same as speed, and it still barely even gets her to a normal level of wakefulness.

kiit_fml 0

That sounds very similar to what my boyfriend has (he refuses to see a doctor, so I guess we'll never know)... and he failed once, then dropped out the second and third times because he either couldn't stay awake, or couldn't wake up to go. It sucks to have and it interferes with pretty much every aspect of life. I really do hope things get better for you =

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Poor you... I have hypersomnia too. And for those who are saying "it's depression", it's not. This can be simply ruled out by an exam called a polysomnography, which can determine whether your constant tiredness is caused by depression, or by a psychosomatic syndrome, or by any sleep problems. Hypersomnia is really difficult to treat, because it's very rare (I'm quite surprised at the amount of "I have that too", this sickness affects 4 person for 100'000) and not really well known. Some treatments work with some people, you basically have to try a bunch of them. And I can totally understand your being depressed, it's quite hard to have people give you medication and insist that it should be working, and if it's not, then it's your fault because you don't want to get better (I've had that). At least know they can give you a better treatment.

I wonder if it could be caused by Celiac disease. feeling very tiered all the time is a symptom. try googling the symptoms and see if it can help you to talk to your doctor.

OP here. I've been on 3 different depression meds before this. The first didnt do hardly anything, the second made me really moody and pretty much angry constantly no matter the situation, and the last seemed to help some, but not all that much. I had a sleep study not long ago and actually got some concrete results from it. I can fall asleep in minutes (normal is like 15 to 20 I think) and I get to REM sleep in less than 15 minutes (again, normal is like ~1 hour). So its not a problem with me not getting to sleep for the one suggesting pot, lol. As of now I'm taking Ritalin, the second recommended drug for hypersomnia. The "suggested" medication is Provigil, but its way too expensive for me to afford even with insurance. The times I tried to go to school was for music performance. I did progressively "better" each time I went, being better prepared each time, but that still didnt keep me from sleeping too late, missing classes, and subsequently getting so far behind that it seemed useless to go anyway. I'm currently looking into game design schools (level design specifically, not programming/animation) as I got a little burned out on the music thing. Thanks for the feedback, its good to know theres others out there dealing with the same thing I am.

I was on prozac last before I had the sleep study. Helped a little with my "depression" but definitely not enough.

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mozrox 0

Aw... That really sucks. Hopefully now that you know what's going on, you'll be able to get help and maybe go back to school.

@OP : Ritalin is often prescribed for hypersomnia, but sadly, it doesn't really do anything for this disease. It's used because it's a good medication for narcolepsia, and hypersomnia is sometimes assimilated to narcolepsia, but it shouldn't be treated the same way. Have you tried Modasomil ? (it might have a different name in the US) Currently, I'm treated with Wellbutrin (a quite recent variant of Edronax), it's an antidepressent, but as my doctor said, really shouldn't be given to depressive people ^^ It acts by stimulated the production of noradrenalin and dopamine. For me, it's the only medication which has worked so far, although it has also its lot of side effects. Maybe you should try it if Ritalin doesn't work. @Gardenho : sorry to say that, but if you can manage by setting multiple alarm clocks, you're not hypersomniac. Hypersomnia doesn't only make you tired all the time, they give you a whole bunch of neurological problems, and THAT can make you fail college, or work, or anything. When you can't concentrate at all because your body and brain react exactly the same as these of somebody who hasn't had any sleep in the past 50 hours, when you get hallucinations because of the "lack" of sleep although you sleep 15 hours a day, when you can't even think of doing simple chores because it means that you'll feel bad for a week, it's really hard to cope with the disease and manage things.

Setting multiple alarm clocks wasn't my solution for curing hypersomnia. One of the OP's complaints was that he couldn't wake up in time for class. I've found that setting two or three alarms at close intervals will wake me up better than one alone. It doesn't make me any less tired during the day, but I can at least get out of bed. There are varying intensities of most diseases. Maybe I am only a moderate hypersomniac, but hypersomnia is, for me, not a disease, but rather a symptom of my depression. I deal with both. I have to.

Oh, ok. I was talking here about the disease called hypersomnia, not about hypersomnia as a response to a medication, or as a symptom to another disease. Depression very often causes hypersomnia, that's why the really few people who suffer from hypersomnia are most of the time diagnosed with depression and treated with antidepressent medication. In the case of depression, of course, a lot is in the head (although depression has a big physiological compound too), and it's true you really have to fight it and make everything you can, because when treated, and after a while, the symptoms will disappear. With hypersomnia (the disease, not the symptoms), you can fight all you want, the tiredness will not disappear, and it's really, really difficult to function normally, even if you manage to wake up (which you can, of course. The problem is not waking up (very difficult, though) or falling asleep (which you do abnormaly quickly when hypersomniac), it's coping with the extrem tiredness all day long :(

Two things that you must get checked to make sure you have the correct diagnosis: 1. You need to have a sleep study done in a sleep lab to rule out obstructive sleep apnea. 2. You need to have your vitamin B12 level checked and the level should be between 350-900. If it's lower than that, you most likely have pernicious anemia, and must be treated for it. I say these things because my sister and I were misdiagnosed for years while having pernicious anemia, because it's considered a rare disease. My sister was diagnosed with narcolepsy and chronic fatigue syndrome, and they said I was depressed. After starting the monthly - intra-muscular shots in our buttocks - we both improved. Most doctors don't know about pernicious anemia, and a lot that do, don't know what they're talking about. Feel free to contact me if you need to know more, as my sister and I have done a ton of research and have lived with the condition for 18 years. As for the sleep apnea, I knew I snored, but was always tired. I finally got the referral and was tested in a sleep lab, and found out that I have moderate sleep apnea. That means that every time I slept without my C-PAP, I was risking my life because I was stopping breathing up to 60 times an hour. Good luck.

It's really strange the way doctors sometimes think. At least where I'm being treated, hypersomnia is given as a diagnosis in the last resort, because it's what's called a "garbage sickness", they give you this diagnosis when everything else has been ruled out. For my case, doctors were so sure it was depression they didn't even bother making blood exams. Consequence : I, too, had pernicious anemia, but it was not showing in the blood (blood cells are anormally big in the case of pernicious anemia, mine were perfectly normal), although my level of B12 was somewhere between 75 and 85... I then got what's called a tetrapyramidal syndrome, which, basically, means that the peripherical nervous system is degenerating (B12 is involved in the growing and maintaining of nerve cells). I could have died. Luckily, I was hospitalized and given the proper medication before any irreversible arm was done, but it's probably what triggered my hypersomnia. Sleep apnea, as well as restless leg syndrome, can also cause tiredness. Actually, a whole lot of problems can cause tiredness. I wish the doctors were really more involved in what they are doing, before giving out irrelevant medication. BTW, antidepressents which work as serotoninergic (Prozac, for example) are totally useless in the treatment of hypersomnia. (and yes, I know quite a lot about the disease and the treatments, I've been sick for 2 years and a half. Feel free to contact me by PM if you have any question. It's really hard to have a sickness no one cares about, even the doctors...)

Thanks for the info, I'll take that into consideration. I had a couple blood tests done, and I'm thinking that would have seen a B12 deficiency if there was one. I've been taking multivitamins more often lately as well just to try to cover any other bases, since it cant hurt :P I've only been on the Ritalin for a month now, and will probably try a little higher dosage to see what it does. So I may look into other possible treatments if this doesnt help as much as I'm hoping it will. I had a sleep study (mentioned in an earlier post), and it showed that I didnt have sleep apnea. I noticed after the test that I'd get startled awake from not being able to breath just before falling asleep. I talked to my neurologist about it and he said it was nothing to worry about and that they did see that on the test. It has only happened like 4 or 5 times, so I didnt think it was an issue unless it persisted while I was asleep. And a little bit of humor out of this situation: I just got back from NY visiting a HS 'friend' for a week. At least 5 of the nights she said that I would start mumbling things only 15 minutes after we went to bed. Seeing as most people dont get to sleep in this time, yet I can get into REM sleep in nearly this period of time, I am apparently very prone to talking in my sleep and someone else witnessing it. I'm pretty sure one of the nights I said something in the lines of "No Jesus, I dont like spicy foods", but I'm not certain. LMAO Apparently us hypersomniacs are very entertaining to sleep with.

Thanks for the info. Yeah, the prozac was for the "depression" so it didnt work. I'll look into the B12 thing, and just mentioning that I had blood tests and yours didnt show there makes me curious as well. I'll surely keep up with the vitamins as well and if I see an improvement in general (not just after taking the uppers :P) I'll at least have an idea what its from. You all have been surprisingly helpful in a very short period of time. Really glad I posted this. :)

Thanks ^^ For the B12, the anemia was shown by the really low B12 count, but my blood cells hadn't grown bigger, so the doctors said "no, it's not pernicious anemia, B12 is really low but apparently your organism can cope with it". I took some B12 pills, but it didn't do any good. Later, they discovered I have a genetic disease and my body can't assimilate B12 by the stomach, I have to get injections. So now I do injections every three months, but that's ok, my B12 has returned back to normal. Things you should check too, as someone said, is celiac disease. A blood test can rule that out, but it's not always efficient, sometimes giving false positive or false negative, but if you do a gastroscopy, the doctor can take some cells from your stomach and analyse them, and normally it should tell if you have celiac disease or not. I hope not, because celiac disease is extremely uncool. I had to test eating like the people who have celiac disease for two months, just to see if I would get better, and that means you can't eat pastas, you can't eat bread, you can't eat pizzas, you can't eat cookies, etc. etc., unless they are made with special flour. I hope you'll get a working treatment and you'll get better !!!

Ouch, that would suck, because I work at a Papa Johns. lol. Thanks again for the extra info, I'll keep it in mind. I dont think I've had any life threatening episodes or whatever to indicate this, but its good to know none the less. It sucks just going to a doctor and just expecting what he says to be the most informed opinion.

That really sucks... :-/ 4th times the charm?