This was really helpful, thank you. I have all the symptoms of type 1 narcolepsy, but the worst for me is being unable to maintain any sleep pattern. I can't stay asleep for more than a couple of hours maximum, and can't stay awake more than that either. Plus I'm in Rem state and lucid dreaming the whole time I'm asleep so it feels like I never turn off. I'm on 15mgs of dexamfetamine at present but still sleep on it. I'm hopeful Xyrem might be helpful. Cheers and good luck to you.

I was diagnosed with narcolepsy without cataplexy about 6 months ago. Modafinil and Armodafinil worked for the first 2 days, then I went to Ritalin and that didn’t work at all. Lastly I got on Adderall 40mg per day, that kinda worked for me but I noticed I was much more tired when I was coming off the medication. About 3 months ago I started taking Xywav and it was amazing! For the first time is years I slept without waking up every 30 minutes. I actually only woke up once that night to take my second dose. My doctor wants me to increase to 4.5 twice nightly because I still have some tiredness and sleep attacks but overall it’s much better. I’m actually very lucky I guess, I don’t have any side effects of the medication. For the most part I don’t even need to take Adderall anymore. Some days are worse than others and it’s on those days I take Adderall. Like on my days off I don’t take Adderall because I can stay busy. At work I have to sit for long periods staring at a screen watching cameras in a low lit area so I get very very tired. Actually the worst of the tiredness is from early morning like around 5 am to 1 pm. Even then though at work I only have to take 1-2 10mg Adderall. Y’all…. I hate the dry mouth from Adderall!!!

I was diagnosed with Narcolepsy with cataplexy about 2yrs ago and have tried modafinil, Nuvigil both made me super sick and now on Adderall and I just can't handle these crashes and migraines 😫. She mentioned this med to consider when I was there and gave me information on it to consider when I got back for my follow up in a month(which was 3wks so my appointment is next week with my sleep doctor) I think I'm gonna consider this. The only thing that petrifies me is being super sick from it like the 1st 2 meds did. Thank you so much for the follow up

I had the essential tremor before I started Xyrem. But it has definitely gotten worse. I was increased to 4g and had horrible jaw pain before falling asleep with first dose. So dropped back to 2.5g. Ty for the info.

Waiting to start xywav. Thanks for sharing your experience

You review is kind of confusing. I can’t tell if it worked or not. It sound like it worked for on 30 days and then you started to revert back….just confusing.

The epworth sleepiness scale is not very good for those taking Xyrem. The sleep on Xyrem is not natural and not compatible with the epworth scale.