Xywav Narcolepsy/Hypersomnia Med

Hello @timbrownfl, I did a search of Connect and did not find any posts with member discussing the Xywav medication (https://www.xywav.com/). While we wait for other members who may have tried Xywave, I thought I would share this Jan 2023 report from the FDA Adverse Event Reporting system.

-- Evidence of Accidental Dosing Errors with Immediate-Release Sodium Oxybate: Data from the US Food and Drug Administration Adverse Event Reporting System:
https://link.springer.com/article/10.1007/s40801-023-00351-9

Is your sleep medicine doctor recommend the medication?

Hi, yes I am aware of that kind stuff, but I will certainly look at the link. My sleep neurologist thinks I should go with it. We will titrate the medication slowly under the supervision of the manufacturer. Their studies did not have a horrible incidence of side effects or accidental dosing, and they make you go through some training before starting the drug. I'm always careful about dosing, and they encourage you to set up ahead of time since the drug is taken at night. They will call me before I start.

I'm pretty desperate, John. Life starts in the a.m. with 4 to 5 hour increments of wakefulness separated by 1 to 1.5 hour naps, then regular sleep at night. The naps are followed by painful episodes of depression/anxiety and fear of the future. I have little time left for things like appointments and groceries. Psych meds have not helped much (I admitted myself to a hospital psych floor in '21). I'm sure you have a whole lot of knowledge about how sleep disorders affect mental health. Throw in my wife's breast cancer, and things very tough here. Thankfully she is receiving massive encouragement from her co-workers.

I hope I’m not taking too much risk with Xyway.

Time for a nap!

Thank you for the additional info. I know it can be a real struggle but it sounds like you have a pretty good sleep neurologist and a plan to keep moving forward. Hoping you can return and provide some great experiences with Xywav and how it helped you.

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I've been taking Xyrem (Xywav is the new-ish generic, I believe) for about 10 years. I remember being really freaked out about trying it, too. I even chickened out the first night, lol.
Have you been diagnosed after a sleep study/MSLT?
I had to go through every drug on the list and finally found a combo of a few that worked for me. Ironically, the drug shortage has hit my most effective drug and I've been without since mid-December🙄. Good times...
Honestly though, the stims are what really saves my bacon. The Xyrem is helpful in that I know I'm getting restorative sleep. I don't dream at night when I'm on it but I do during the day when I take naps.
The biggest adverse effects (for me when my dosage was too high) were bed wetting and literally falling asleep on the toilet and falling off. There are a few private fb groups, but they got a little toxic and depressing ( we're sleepy so we are bound to get grouchy occasionally). I haven't been on FB for a few years so I'm not sure what their status is now.
Happy to answer any and all questions you have🙂

Yup I've had 4 sleep studies. I haven't started Xywav yet. Maybe I'll ping you when that happens. Thanks

Sounds good!
I'm very sorry to hear about your wife's cancer. It can be very draining to be the caregiver too, so make sure you're taking care of yourself!