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Real members of MyNarcolepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
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Ok Was It A Shocker Being A Adult Finding Out You Had Narcolepsy?

Ok Was It A Shocker Being A Adult Finding Out You Had Narcolepsy?

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
A MyNarcolepsyTeam Member

It really was a shock. I can reflect on my whole life and see the symptoms from my earliest memories.

posted November 22

What Aspect Of Narcolepsy Worries You The Most?

What Aspect Of Narcolepsy Worries You The Most?

posted August 19
A MyNarcolepsyTeam Member

That it’ll get worse with age.

posted November 4

What’s One Thing You Wish People Who Aren’t Living With Narcolepsy Could Understand?

What’s One Thing You Wish People Who Aren’t Living With Narcolepsy Could Understand?

posted August 26
A MyNarcolepsyTeam Member

I wish they could understand that it is not that I am lazy. I get tired. Also that I am not losing my mind when it comes to the cataplexy spells. They are very rough on the body.

posted October 12

Were You Forced To Give Up Your Driver's License After Your Diagnosis? How Did You Cope?

Were You Forced To Give Up Your Driver's License After Your Diagnosis? How Did You Cope?

posted September 10
A MyNarcolepsyTeam Member

I was young when I got diagnosed, so I never had a driver's license, but I decided myself that I would not attempt to get one, because it was a danger for people around me to be on the road with the… read more

posted October 21

What Analogy Would You Use To Help Someone Understand What It’s Like To Live With Narcolepsy?

What Analogy Would You Use To Help Someone Understand What It’s Like To Live With Narcolepsy?

posted June 3
A MyNarcolepsyTeam Member

1. You know how you get your 7-8 hours of sleep from 10:00pm-6:00am? Since my brain skips the normal sleep stages, I get my 7-8 hours of sleep over a 24 hour period in fractured increments, which… read more

posted October 30 (edited)

Do Stimulants Help?

Do Stimulants Help?

When I was first diagnosed beginning of high school, my doctor had me try a couple different treatments. One of them was Ritalin, but I was wary of pills and didn't want to go that route. College has really been testing my limits, and I'm starting to fall behind. Do stimulants help any of you guys? Which kinds help the most? Do side effects outweigh the pros? Thank you!

posted June 1, 2020
A MyNarcolepsyTeam Member

Only way I can get through anything academic for a sustained amount of time is with stimulants. Adderall and Vyvance have given me the best results. Other stimulants I've had increase sweating and… read more

posted July 29

Do You Consume Or Avoid Caffeine?

Do You Consume Or Avoid Caffeine?

posted November 4
A MyNarcolepsyTeam Member

Absolutely,...Me Too

posted November 29

How Do You Manage Your Narcolepsy At Work?

How Do You Manage Your Narcolepsy At Work?

posted September 16
A MyNarcolepsyTeam Member

It’s hard. I nap as needed

posted November 8

What Is Your Morning Routine?

What Is Your Morning Routine?

posted September 2
A MyNarcolepsyTeam Member

Do know any thing about using essential oils fir treating narcolepsy symptoms? I have just started using them and Frankenscence seems to help energize me and keep me awake somewhat during the day… read more

posted October 13

What Is Your Favorite Hobby?

What Is Your Favorite Hobby?

posted August 12
A MyNarcolepsyTeam Member

Lucia, I listened to Chain of Fools, and you guys sound great! I'll have to listen to the others. What a nice way to spend time with friends doing something you enjoy, and others love to sit, relax… read more

posted September 17
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