My doctor is trying to get me on Xyrem because every stimulant I've tried has no effect. I have type 2 narcolepsy so my insurance keeps denying the medication because I don't have cataplexy. Does anyone have any recommendations on what I should do?

Cataplexy & Narcolepsy

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  • EsVanner


    I just recently got diagnosed with type 2 as well. I am also getting a lot of push back from the insurance for both of the medications my doc has prescribed for me... We sent in everything they've asked for and they are being vague back. I hope you figure it out!!!💕

  • erinjaeger


    I have type 2 as well. I’m on adderall and provigil and might get onto wakix in the future which has a really good financial program

  • strugglebus


    What is type 2 narcolepsy?

    • erinjaeger


      narcolepsy without cataplexy

  • Michmarie


    Which stimulants have you tried? Personally, I see Xyrem as a last option. There are lots of things you can try before that

    • Libby123


      provigil helped me more than ADHD medications and also gave me way less side effects, but did still give me slight anxiety/irritability and i would still fall asleep on it

      • erinjaeger


        i love provigil!! im also on adderall but provigil never gave me side effects that actually affected me

  • ChrysB


    I'm Type 2 also. I take Nuvigil (like Provigil with less side effects). I've taken Xyrem in the past. It took lots of persistence from me and my doctor requesting reconsiderations and appeals with the insurance company. We finally had to do a three way conference call hearing with the insurance medical review board (including doctors, nurses, administration, etc), my sleep specialist, and myself. My sleep doc had to present meds we had already tried that didn't work, results from tests, his official diagnosis, and his reasoning to why he felt I needed this medication to be approved as an exception. It worked. It was covered by insurance finally. Be persistent.

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