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Diagnosis of Hypersomnia

Hi all,

(I wanted to post this as a different discussion, but this is really a follow-up/update on my initial question found here: https://narcolepsy.sleep-disorders.net/forums/does-your-daily-schedule-affect-narcolepsy-symptoms#reply-164293.)

My sleep study has been completed, and I have a diagnosis of hypersomnia. I will ask my doctor the following questions, but I don't seem him for 3 weeks! My diagnosis of hypersomnia is really confusing for me because that's rather generic. The doctor ruled out narcolepsy, so I guess that leaves idiopathic hypersomnia (ID) or Kleine-Levin syndrome. My condition doesn't sound like Kleine-Levin syndrome, so I guess it's ID. But why isn't my diagnosis that? Can someone be diagnosed with just general hypersomnia? Sounds like I am...

Ugh...I just want answers. The answers come like bread crumbs. My initial visit with the doctor was May 2, my sleep study was June 22 (I had to wean off of my meds), and now my follow-up appointment is on July 14th. So much waiting.

Thanks,
Isabel

  1. Hi . Can you email or message your doctor and ask for more specifics? Most likely, you have idiopathic hypersomnia, but only your doctor will know for sure. Keep in mind that it is really hard for doctors to distinguish between idiopathic hypersomnia and narcolepsy. A future sleep study might result in a different diagnosis. Here is an article about the differences between the two that might interest you: https://narcolepsy.sleep-disorders.net/clinical/type-2-idiopathic-hypersomnia. The important thing is the treatment you receive and whether it helps. Hopefully, your doctor will recommend treatment or therapies that greatly improve your quality of life. I hope this helps. Please keep us updated as you learn more if you don't mind. I will be thinking of you. - Lori (Team Member)

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