Diagnosis Of Idiopathic Hypersomnia?????

Lounge By cakelady2266 Updated 15 Sep 2011 , 8:18pm by tigerhawk83

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cakelady2266 Posted 14 Sep 2011 , 3:11am
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No I'm not making up the name up. A while back I ask for advice about C-Pap machines and why I wasn't feeling more rested with one. Well my Dr. says I don't have sleep apnea I have idiopathic hypersomnia. I thought he was jerking my chain. Yeah I got the idio plus t part down pat.

I have read up on the subject, which is vague at best. Basically you sleep but never feel rested and you are tired all day. So I have a prescription for a stimulant type medicine and I still have to use the C-Pap.

I was wondering if anyone had a diagnosis of this or any type knowledge about living with or overcoming it? I'm doing fairly well on the medication but not sure that it is something I want or need to take long term.

I would appreciate any feed back.

Lynn

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tigerhawk83 Posted 15 Sep 2011 , 8:18pm
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Basically it means they don't really know what is going on. Idiopathic means no known cause and hypersomnia is excessive sleep or sleepiness. So this is essentially a descriptive diagnosis and not really a "cause" Sounds like they can't really call it narcolepsy but is more than sleep apnea. I would guess C-PAP and stimulants are the right approach - continue to track your problems.

As weird as is sounds - keep a diary of when you sleep, how much you sleep, how good or bad you feel after sleep, what your activity level is, when during the day you get sleepy, when you take your meds - anything that you think is relevant. As a physician, it is very helpful to have detailed specifics. I do this with my pain patients and their medications and it does make tweaking drug dosages easier and possibly finding triggers to problems.

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