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Narcolepsy Type 1 (Narcolepsy with Cataplexy)
Sleep Health | Last Active: Aug 4, 2025 | Replies (28)Comment receiving replies
I developed narcolepsy with cataplexy over 40 years ago. The cataplexy was so bad that it made it relatively easy for a neurologist to diagnose. Most of the medications available in 1980 were stimulants to help me stay awake, but they had little effect on cataplexy. Thankfully, I started xyrem in 2005, and it was a miracle for me after years of falling asleep at all the wrong times. The last 4 or 5 years it is not quite as effective in terms of sleepiness, but it really controls cataplexy. Actually, I control much of my cataplexy because I have learned what triggers it and try to avoid those situations. For me, the worst cataplexy happens when I say something funny and people laugh. This means I really curtail my personality unless I am with family/friends. Be careful if you start Xyrem/Xywav -- at the beginning it can really knock you out quickly. Most people I know who use it have taken some bad falls in the middle of the night. Some sleep walking resulting in night eating. We put up a gate at the top of the stairs to prevent me from going downstairs and grazing and to prevent falls. Xywav is a low sodium dosage of Xyrem. I would strongly rec. you take it. Results are the same EXCEPT you are not taking in a day's worth of sodium each night. Over 15 years of Xyrem and I now have CKD -- chronic kidney disease which is not reversible. The pharmacists working with Xyrem/Xywav assure me the meds are the same without the huge dose of sodium in xywav. In my opinion, they should only be selling Xywav since the kidney problem doesn't materialize for many years, but when it does, there is no real treatment. I have met older people who have been successfully treated with the codone, but they usually don't talk about it, fearful that it will be taken away from them if their doctor is found to be prescribing it routinely.
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Yes, I broke 3 ribs falling not once but twice in one night. I always had knots on my head from hitting the doorknob in the bathroom, lol. When I was on Xyrem I was constantly eating night and day but mostly at night. I lost weight though, 40lbs in something like 4 months maybe less. My primary care was really worried about it, but I told her I positive it's the Xyrem I'm on. I was really worried when I had to stop taking it over cost that I would gain it all back, but I didn't. If I could afford it I would get back on it. I really hate the antipsychotics and antidepressants like Trazodone, Quetiapine and others that leave me feeling out of it all day. I feel like they're damaging my brain. The copay for it is twice what my income is. I do talk about taking hydrocodone or oxycodone for Narcolepsy with Cataplexy on several forums, I also write law makers, the CDC, NIH, DEA about it. It's the one medication that has actually really worked and turns out there's a reason it does. I feel that it's very important for people to know that, for science to have it documented. My last specialist made it a point to write on my scripts and in my visit summaries that I take it for Narcolepsy with Cataplexy, not for pain. My new one is afraid to put why I take it. He isn't doing himself, me or anyone any favors and I'm worried because I am so vocal about it, it will come back and bite him in the you know what. I will fight anyone, DEA included if they try and harass him or interfere in anyway with my treatment, but I'd rather not have too. I have told him I want to know right away if someone does say something, he did when my insurance company wrote him suggesting I take other medications, which I have and do and tells him opiates cause sleepiness and should not be used for Narcolepsy. I about went through the roof! I sent them all the studies and articles I could find and told them it would be in their best interest not to make recommendations on things they obviously know nothing about!