Hypersomnia

Posted by nrake @nrake, Jul 27, 2011

I am desperately searching for successful treatments of idiopathic hypersomnia. Has anyone else been diagnosed with this?

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I was diagnosed with this several years ago. I have been taking Ritalin as prescribed and it has helped considerably. It has really made a difference in my life.

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I was origionaly diegnosed with narcolepsy 5 years ago but recently found out it was IH. The meds help some but i feel my life slipping away more and more.

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That is my question too, exactly……and desperate

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@whamo01

I was origionaly diegnosed with narcolepsy 5 years ago but recently found out it was IH. The meds help some but i feel my life slipping away more and more.

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Me too and feel the same way. I wish I could find an effective treatment. Started on modafinil, the effects of which soon stopped and my symptoms then seemed worse. Recently started on dexamfetamine which does not seem to be doing much. I feel so useless, to my family especially

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@kim99

I was diagnosed with this several years ago. I have been taking Ritalin as prescribed and it has helped considerably. It has really made a difference in my life.

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Could you explain how it’s made a difference to you and if you’d tried anything else previously?

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@kim99

I was diagnosed with this several years ago. I have been taking Ritalin as prescribed and it has helped considerably. It has really made a difference in my life.

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I hadn’t tried anything before starting the Ritain. It took some time and adjustments to the dosage for me to feel better without getting jittery or hyper. I take a combination of dosages including extended release throughout the day. The biggest difference I have felt is that I’m not exhausted just trying to drag myself through the day anymore. I still get tired if I haven’t gotten enough sleep but it is not the all consuming exhaustion that I had been battling.

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Methylphenidate. I take up to 90mg per day, a combination of 10 & 20 mg. I am alert and awake. It has been a life saver.

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Although I wouldnt wish this diseaae on anyone, it’s nice to know I’m not alone. Many people have never heard of it and look at me like I’m crazy. Tired of medication side effects and fighting prescription insurance denials!

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Dr David Rye at Emory University uses other meds. He also started a forum at Hypersomnia Foundation that is helpful.

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