How do most people feel, how long they have been dealing with narcolepsy, cataplexy. Is it when they get a diagnosis or before a diagnosis?
I feel I have been dealing with since I was 7years old.I could never make it to school on time. I always had a nap in the park on the way to school,wake up and arrive at school just in time for reccess. When I did make it on time, it was because ,I would lean on my little sisters shoulder.She would guide me to school ,I think I must have been sleep walking. I was diagnosed 12 years ago. Myself 47 years of dealing with it ,maybe more ,so having narcolepsy with cataplexy is normal for me ,just a lot easier with the right treatment ,not so easy knowing what it is.
Hi Shan, you have an amazing story. the teamwork with your sister is very sweet. I was 40-ish when diagnosed, and have been sleepy since I was 10 or so. I’m 57 now, and was fighting sleep trying to go back to school five years ago when I got migraines and depression, too. I’ve finally stopped fighting it because I couldn’t overcome it. I’m different from most folks and I have to respect that. I was determined to be like others, but I’m not. Diagnosis was the reality check, acceptance came later.
I could have written that myself Carol even though my condition is different to all of yours:
I’ve finally stopped fighting it because I couldn’t overcome it. I’m different from most folks and I have to respect that. I was determined to be like others, but I’m not. Diagnosis was the reality check, acceptance came later"
After two years of pain and panic a neurologist agreed my diagnosis and then there was nothing to do but fight for more recognition (other medics were harder to engage), have them eliminate any dangerous reasons for the condition and at last accept that I will never be the same again and look for ways to make the best of it. With that acceptance came a certain peace to help deal with the daily battle.
When did you come to terms with narcolepsy Shan? That was an awful long time before you were diagnosed. Did diagnosis make a big difference?
According to what I have read and videos I have watched, 10 to 15 years is how long to diagnosis but if our members are anything to go by it is more like 10 to 30 years or longer:(
Cataplexy showed up around 15. Autonomic Behavior showed up in elementary school 2 types. Narcolepsy we discovered Jr high but probley earlier. We saw a Shrink who gave us the name cataplexy but he was a quack claimed he could cure him. Had no idea what was going on. Drs Shrinks and Counselors and worthless medican. DX at 2010 or 2011. Sons now 29. Drs Shrinks and Counselors not any better