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Idiopathic Hypersomnia!

by (361)
Updated October 31, 2014 at 3:13 AM
Created May 04, 2011 at 12:47 AM

I have always complained about feeling sleepy all day long (but somewhat fresh in the night) for almost ten years (I am male, 25 now). When I am sleepy, I just cannot control it (but I don't fall down like narcolepts). I thought that may be its a cortisol issue (high in am, low in morn). However I don't feel tired during the day, but plainly sleepy and my libido is pretty good. But there were other cortisol symptoms like I gained too much weight around the waist last time I tried gaining weight (while doing starting strength workout). So its confusing whether its cortisol or something else. After going paleo, I was somewhat better, but not fully cured. I finally took a few sleep studies and found out that I sleep well in the night (no apnea) but daytime sleep study revealed that I am just idiopathic hypersomniac, somewhat like narcolepsy. They made me sleep 5 times during the day for 20 mins each and each time I fell asleep within a minute. So the doc thinks its hypersomnia and I asked him about cortisol issues, but he brushed it out saying my electrolytes will be wacky if i had cortisol imbalance. So my question is, is there anybody with narcolepsy here? Is it worth taking medication? How far paleo has helped and what other change would you recommend? And could this just be a cortisol issue?

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1457 · August 29, 2011 at 1:42 PM

You have to love medical jargon. That just means you are excessively tired and they cannot figure out why...

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361 · May 04, 2011 at 3:56 PM

no, nothing like that.

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361 · May 04, 2011 at 3:55 PM

Thank you! Yes, he didn't say its narcolepsy, because I don't have cataplexy and he said I was not dreaming during the naps (though I was!). In any case, he suggested I could take nuvigil.

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5 Answers

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20 · August 29, 2011 at 12:48 AM

In my opinion, your diagnosis of idiopathic hypersomnia is exactly correct. I was also diagnosed with this a few months ago. I was very sleepy, for many years, but attributed it to staying up too late frequency, or drinking excessively. Now two years out of college, my sleep and drinking got within the healthy range but my daytime sleepiness got worse and worse. In reality, people with hypersomnia or narcolsepy do not just fall over asleep in the middle of doing something. That only happens on TV, or if your sleepiness were that bad- you would be on permanent disability. I for one, have never fallen asleep "on accident." I would get very very very sleepy and the urge to lay down and take a nap became almost irresistible. But I always made myself get up, walk around, talk to someone, etc to keep myself from falling asleep.

Falling asleep in under one minute during the Mult Sleep Lat test is HUGE. That shows extreme sleep deprivation. My results were similar (my sleep time averaged under three minutes, but no REM cycle- hence they ruled out Narcolepsy). I'm currently taking Nuvigil and I looooove it. I had nausea and headaches from it for the first week, but after that my body adjusted and I feel like a brand new person- my sex drive is better, i'm not as cranky, i'm not making myself sick with caffeine everyday, I can concentrate better, and I'm just NOT SLEEPY ALL DAY. Also, about the weight gain thing- I lost fifteen pounds after being diagnosed. Apparently, being sleepy all day slows down your metabolism so that could be part of the weight gain you noticed. I really think you owe it to yourself to try to medication for at least two weeks (the doctors will usually give you a two week sample.)

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190 · May 04, 2011 at 1:29 AM

Narcolepsy is different than hypersomnia. It is possible that the MSLT (daytime sleep study) missed it, but probably not. Narcolepsy isn't very common and usually presents with additional symptoms. Cortisol is likely, especially given that you have more energy at night. -Clinical Director of AASM accredited sleep disorders centers

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361 · May 04, 2011 at 3:55 PM

Thank you! Yes, he didn't say its narcolepsy, because I don't have cataplexy and he said I was not dreaming during the naps (though I was!). In any case, he suggested I could take nuvigil.

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0 · January 09, 2012 at 9:53 PM

I also had a sleep study and an mslt consistent with idiopathic Hypersomnia. In my case, I figured I likely had chronic fatigue syndrome since all this started after I had mono in high school. Turns out one of the treatments for CFS is cortisone replacement. Started it this past week.

Holy fetch is all I have to say. It's like being a new person. Sleepiness 80% better, I don't feel like garbage in the morning, and I have some "oomph" in myself through the day again.

Long term corticosteroids are bad, is the conventional medical wisdom. But I'll be looking into this (low dose corticosteroids) to see if it's viable for me in the long run. Good luck to you as well- I haven't found much literature on this as I've searched.

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889 · May 04, 2011 at 3:19 AM

Could it be that you do have narcolepsy but it is exhibiting differently because you are paleo? So you're not showing the same symptoms the way someone else on SAD would?

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361 · May 04, 2011 at 3:56 PM

no, nothing like that.

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2435 · May 04, 2011 at 2:56 AM

Try a different doctor.

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