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Narcolepsy Type 1 (Narcolepsy with Cataplexy)

Sleep Health | Last Active: Apr 10, 2023 | Replies (23)

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@timbrownfl

I have type 2 diagnosed this year at 63 (I've had the sysmpptoms for a few years), but you're telling much of my story. Stimulants make me more alert between naps, but doesn't stop them. Next comes Xywav. Have you heard of that?

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Replies to "I have type 2 diagnosed this year at 63 (I've had the sysmpptoms for a few..."

Yes. I've never been on that but was on Xyrem. It didn't really help me sleep, I would wake up every hour or two and my cataplexy was much worse when I got up in the middle of the night. I cracked my ribs and always had welts on my head from cataplexy it was so bad. Xyrem made me so hungry but despite getting up every night eating anything I could find I lost almost 50 lbs in the first 3 or so months and kept it off. I kept taking it because I was afraid of gaining it back until the copay went up, then I stopped taking it. Hydrocodone seems to help prevent cataplexy also. I only have problems in the middle of the night and shake it off by the time I've stumbled to my bdrm door. If I don't take it for 2 or 3 days cataplexy comes back. It's only hydrocodone, not codeine or oxycodone that really prevents my cataplexy for some reason. It seems nothing works on me the way it's supposed too.