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Idiopathic Hypersomnia... I have what?!

So I have just gotten home from a sleep study (overnight and an MLST) and my doctor's diagnosis was Idiopathic Hypersomnia. He said in his 20+ years I'm the third patient he's ever had with this. I've fought sleep as long as I can remember, a constant and major nuisance in my life disrupting every aspect of it. As an adult I just turned to major doses of caffeine and still did not feel "normal". I have been put on sleeping pills then my doctor decided that I had severe depression since the sleeping pills didn't work. So after 5 years on anti-depressants and still no change he FINALLY decided to send me to a sleep clinic. It feels weird to have finally found something that the symptoms fit me exactly. So now that I start my two new prescriptions of Methylphenidate (instant and long acting) tomorrow I'm not sure if I should get back on my anti-depressant since I had to come off of it for the sleep study. My sleep doctor said he didn't feel I was depressed but did not say one way or the other to get back on it. I have felt fine off it once I got past the withdrawls. So having this sleeping disorder will I ever feel normal?
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replied December 27th, 2011
i wasn't diagnosed with this but have all the symptoms. and yes, it has interferred with my life for as long as i can remember. i too was on anti-depressants which helped but the thing that changed my life was a med called Provigil. It is typically used to treat narcolepsy, but it helped me so much i can't even tell you. no daytime sleepiness, no need for naps during the day, no dragging, fall asleep like a normal person at night, etc. i had to go off it when i was pregnant and strangely didn't need it anymore after he was born so i don't take it anymore. but while i did it changed my life. i felt normal. sleep is so important! most ppl take it for granted. maybe this would work for you too?
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replied January 11th, 2012
I have the same diagnosis for the same symptoms, and have also struggled with this for years through multiple doctors prescribing one anti-depressant after another; my sleep study came back with no apnea. My latest doctor started me on Adderall about 8 months ago, and I've gone through the same story time and again since: a dosage works FANTASTIC, for a while... so we move up on the dose, all is great for a few weeks or a month or two and then it's not enough anymore, again. I started out on 10 mg instant release, twice daily; I now take 30 mg extended release, twice daily, and I'm told this is the highest dose she will allow. It did work fine for a few months even, but for about the past 6 weeks the daytime sleepiness has been back, some days in force, and one issue is that stimulants of this type prevent one from falling asleep even if they're overwhelmingly tired. So it's not even possible for me to take naps during the day, even though some days I go through crushing tiredness.

To summarize: your mileage may vary, but it's likely methylphenidate will work well for you for a while, but you may find yourself continuously having to increase the dose and maybe to the point where no further increases are possible and your symptoms persist (or recur) at the maximum dosage.

Oh, and for what it's worth, I am and have been on since starting the Adderall an anti-depressant - Effexor (venlafaxine) XR. Although I don't feel "normal" (I empathize with your choice of words), I still feel better than I did a year ago, so I'm content to leave well enough alone for now.
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