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BreBee04

Updated 1y ago

Need advice on getting Xyrem for type 2 narcolepsy

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?

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EsVanner

2y

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!!!💕
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erinjaeger

2y

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
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strugglebus

2y

What is type 2 narcolepsy?
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erinjaeger

2y

narcolepsy without cataplexy
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Michmarie

2y

Which stimulants have you tried? Personally, I see Xyrem as a last option. There are lots of things you can try before that
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Libby123

2y

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
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BreBee04

1y

my doctor has tried me on modaphinil, Vyvanse, and Concerta:/
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ChrysB

2y

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.

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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