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Ok Was It A Shocker Being A Adult Finding Out You Had Narcolepsy?
A MyNarcolepsyTeam Member asked a question 💭

I was dynose for Narcolepsy at a young age. I had to deal with it and on my own learned how to help myself. When in my 40tys I found out What I had and got on med. I would say being young in some ways coping was a learn g thing not saying it's easy young or older , but for some reason I would think it would be crazy finding out older. What you think - the ones that got it later in the years?

posted July 4, 2020
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A MyNarcolepsyTeam Member

Being diagnosed was actually a relief. I finally had a reason other than "I was lazy" or "I wasn't trying hard enough", or the worst, "I'm just rude". Eventually the other shoe fell off & I was depressed about how long & how much I missed because of my battle with narcolepsy, but at least now, I'm better equipped to deal with it.

posted November 7, 2022
A MyNarcolepsyTeam Member

My diagnosis of narcolepsy with cataplexy was finally made in April 2014. I was just about to turn 50 and had began having the symptoms of narcolepsy and cataplexy when I was 11 or12 years old. But I believe I had it from far earlier. I remember my mother would always tell people that you could set your clocks by watching me. Asleep at exactly 9 p.m. every night, awake at 7a.m. every morning. Like someone flipped a switch. So I had dealt with so much by that time and had so many tests, medications, and doctors even sleep doctors say that I didn't have it when I finally got the diagnosis it was like I had my vindication for all the insults, embarrassments, and accusations.

posted August 23, 2020
A MyNarcolepsyTeam Member

Its crazy but even today my records say Daytime Solmnolence or excessive daytime sleepiness. NARCOLEPSY RIGHT why cant they just say that

posted July 10, 2020
A MyNarcolepsyTeam Member

I was sitting in the waiting room for my sleep study and I had a sleep attack(Cataplexy) so I couldn’t respond to the nurse when she called my name. The doctor thought I was having a seizure so they called an ambulance. I can’t even count the times I was taken to the ER by ambulance. I was in my PCP’s office to see a podiatrist and I had another sleep attack so my PCP was called to the exam room. He told my friend she has Narcolepsy, a bad case of it but that’s what she has. The diagnosis is bitter sweet because I was thankful they found the cause of symptoms but Narcolepsy is no picnic!😩

posted November 12, 2022
A MyNarcolepsyTeam Member

I was in my 40's when diagnosed. I kept telling my Dr. Something is wrong with me because I'd wake up while driving and be an inch away from hitting a parked car. This would happen so often. Then I was driving my son to school and my hot coffee being spilled in-between my legs woke me up on the freeway. I'd drop my phone , cereal bowls, plates , coffee cups. I'd even talk from what I learned just right. Ow here is called automatic behavior. I split my face open and had 3 concutions in 2 months and I finally crashed my car on the freeway with my child and dog innthe car with me. Thankfully no one was involved but us and no one was hurt but it wasn't until this that my Dr. Started listening to me and realizing I wasn't full of crap. It's been a difficult journey thought because mess haven't really helped . I lost my license and my family was over having to give me rides so they told me I had to lie to my Dr. So I can get my license back it's all ao weird..

posted June 24, 2022

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