Has Anyone Tried CBD For Narcolepsy?
Has anyone with narcolepsy had any luck with CBD reducing the effects and/or other positive results wih less dattime sleepiness?
Did you take it orally as an oil or in another form?
George W.
There was a recent medical study that showed unintentional weight loss. Providers are aware and concerned, there maybe a reduction in the dose or discontinuation. Especially in younger children was the weight loss noted. I’ll see if I can get a copy of the medical article.
I’m fortunate, my daughter educates people that need assistance with insomnia. She educates people about CBD. I’m almost 70 yo and she convinced me to try to take the CBD gummy’s. I was hesitant at first, but I’m glad that I did try it. I sleep well. I had been on XYREM and lost over 49 lbs and was hospitalized. Now I sleep well and have a healthy appetite. All of my physicians were supportive of me using CBD.
When I started taking Xyrem many years ago, my metabolism became extremely high. I lost 5 lbs each night in my sleep, and during the day, I felt like Superman. I had enormous energy. I just wanted to run all the time. I felt invincible. Obviously the weight loss became extremely dangerous. I spoke to my doctor and he took me off of it for 8 months. Then I started back at a low dose and titrated up to a maintenance dose that worked. Once I restarted, I never had the metabolism/weight loss issue again. Those 8 months were torture not having this medication. Years later when Xywav became available I switched to it, because it has a fraction of the sodium of Xyrem. I still take Xywav. It helps, but my Narcolepsy is not well managed, and I still struggle every day. I am now considering hemp-derived CBD for daytime, and from what I have read above and elsewhere, for sleeping better at night. I have read that CBG is helpful at night, but I haven't found where to get a tincture of this that is Hemp derived. The CBD I am considering buying is a Full Spectrum Tincture, so it should have CBG in it. I live in a Cannabis prohibition state, so I cannot use Marijuana derived product. I have tried all of the medications for daytime symptoms and none worked for me for the long-term. NuVigil worked like magic for a few months and completely removed my daytime symptoms. Then it only worked for a couple of hours and kept me awake all night even though I was taking Xyrem.
Great Teri, different approaches work for different people, Good on you for looking out for yourself, Keep It Up.
Best wishes.
George W.
I have also used IAVA Entourage Night watermelon gunnies with THC, CBN and CBG one each night and I now sleep for 7-8hrs. It is a life changer for me!
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