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Narcolepsy Type 1 (Narcolepsy with Cataplexy)
Hi there. After years of unexplained symptoms, my daughter was finally diagnosed with narcolepsy type 1, aka narcolepsy with cataplexy. I too suffer from hypersomnia, but the cyclical nature and neurological symptoms seems much more in line with Kleine-levin syndrome. Does anyone know if there’s a connection between the two? Also, kleine-levin is so rare I feel like it would be hard to get a doctor the take me seriously. It was hard enough getting my daughter diagnosed with narcolepsy—it took years!
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As I mentioned I don't have cataplexy, but the other symptoms are bad enough. I'm alrey taking hydrocodone. What did you have to do for this @sleepstate?
What did I have to do for what? I'm not sure what you mean. Yes the fatigue, sleep paralysis, no energy and depression it all triggers is worse than my cataplexy is. I've been on a low dose of my meds 34 and 28 years and slowly become tolerant to it. It doesn't work nearly enough to live life every day anymore. It does if I increase it but my Dr is too worried he'll have the feds on him if he does. I don't blame him. The way things are he might. It's terrible, so many people are having their meds reduced or cut off and really suffering because of over regulating.
Sorry, I must hav misunderstood something. I have a strange case where my symptoms didn't hit until I was 61. Maybe I can hang in there before my meds stop working.
Adderall works.
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.