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Anyone with idiopathic hypersomnia?

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It hit me when I was twenty and progressively (rapidly, really) grew worse these past years. At one point I slept 22 hours a day and barely dragged myself out of bed at that. The weird thing is that I also have symptoms of narcolepsy, though my sleep study did not show me to be narcoleptic. I have frequent hallucinations upon waking like narcoleptics do.

My life was nonexistent until I scoured the internet for alternate treatments for my hypersomnia -- adderall alone wasn't cutting it, and some of the stims made me manic. If any of you are struggling with idiopathic hypersomnia, I cannot recommend Clarithromycin (antibiotic), Minocin (antibiotic), or Levothyroxine (thyroid medication) enough. Doctors don't know WHY these medications help people with IH, but a lot of the time they do, and it can be a life saver. Currently I am on 25 mcg of Levothyroxine and the difference is night and day. The drug Flumazenil (used in benzo overdoses, I believe) is supposedly to be the best alternate treatment, but I don't need it with the others available.

Just wondering if anyone else here suffers from idiopathic hypersomnia (or just plain hypersomnia) and what their experience with treatments/coping has been like. :) I also wanted to share the info about Flumazenil/Clari/Minocin/Levothyroxine, just in case someone isn't getting enough relief from stimulants and needs something else like I did.

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My sleep doctor said my sleep study was inconclusive as to what type of hypersomnia I have because I was tested on all my psych meds, and I'm lucky to have a great response to ritalin, but a light box inproves it. 

I have this weird issue with waking up at night, though it turns out to be a normal amount of sleep.  Sometimes it is sleepwalking that is creepy like acting out my dreams.  It is a huge problem that we haven't really focused on yet. 

I have the hallucinations before I go to bed especially if I'm very tired and try to stay up and they're creepy.

Edited by Banana Smurf

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Hi Smurf.  Long time no see.  I decided to unfreeze myself and check out old friends to see how they are doing?   The light box thing seems to help me a bit with depression.  That or I guess the Vit D which I seem to lack.

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    • By Rabidtears
      I just finished doing a sleep study. One was psg and the other was mslt? They were checking for narcolepsy, but my admitting dx was hypersomnia. Anyways, I know with narcolepsy you can have hallucinations, auditory, visual, as well as olfactory. I have had at least one of each. The one dealing with my sense of smell is more of a distortion though. What should be a very unpleasant smell tends to smell rather delightful. I think it's called eusomia. Examples are usually dealing with poop! I smelled bacon at my in laws and they said there was no bacon but was probably dog poop I smelled.
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