3 replies to this topic

[Maximilian]

I've been diagnosed with narcolepsy, I have all symptoms except the cataplexy, or if I do it is minor.

Will I eventually develop (a more noticeable) cataplexy??

[ibzom]

I would like to know the same. I was diagnosed in mid 2011 and I have no signs of cataplexy as of yet. Does it develop over time or later on?

[Hank]

Some people will develop Cataplexy within several years after EDS begins. Others will never develop Cataplexy. There is no way to know and it is different for each person. Xyrem is a medication that is licensed for Cataplexy and does a great job managing it. There are ways to manage life around Cataplexy as well. LPGA golfer Nicole Jeray is an encouragement for me with my Cataplexy. She is a pro golfer who could not get excited on the golf course because her knees might buckle. Now she is diagnosed and benefiting from Xyrem- Google her if you are interested. It all sounds so scary when you read about it. Many people live good lives with it. I am not minimizing the impact of it, but a good life is still possible. I have Cataplexy and I completed a triathlon last year. I am not pushing myself that hard right now, but I did it. I just did not get excited crossing the finish line. I know others without either Narcolepsy or Cataplexy who are unhappy and inactive.Llike everything else, it ultimately comes down to attitude. And I find that my attitude is so much harder to manage than my Cataplexy.


So, I genuinely hope neither of you ever develops Cataplexy. If you do, I hope you take encouragement from people like Nicole Jeray who have found ways to live well with it.

[munky]

Some people will develop Cataplexy within several years after EDS begins. Others will never develop Cataplexy. There is no way to know and it is different for each person. Xyrem is a medication that is licensed for Cataplexy and does a great job managing it. There are ways to manage life around Cataplexy as well. LPGA golfer Nicole Jeray is an encouragement for me with my Cataplexy. She is a pro golfer who could not get excited on the golf course because her knees might buckle. Now she is diagnosed and benefiting from Xyrem- Google her if you are interested. It all sounds so scary when you read about it. Many people live good lives with it. I am not minimizing the impact of it, but a good life is still possible. I have Cataplexy and I completed a triathlon last year. I am not pushing myself that hard right now, but I did it. I just did not get excited crossing the finish line. I know others without either Narcolepsy or Cataplexy who are unhappy and inactive.Llike everything else, it ultimately comes down to attitude. And I find that my attitude is so much harder to manage than my Cataplexy.


So, I genuinely hope neither of you ever develops Cataplexy. If you do, I hope you take encouragement from people like Nicole Jeray who have found ways to live well with it.

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