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

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422 questions

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?

A MyNarcolepsyTeam Member

I am amazed at all the replies! I think anyone with Narcolepsy can relate to the experiences and emotional difficulties that go hand in hand with Narcolepsy: it is a 24/7 and insideous disease! I was… read more

posted August 17, 2023

Do You Consume Or Avoid Caffeine?

A MyNarcolepsyTeam Member asked a question 💭
A MyNarcolepsyTeam Member

I have to have caffeine! My neurologist has suggested decreasing a bit which I have done but still need some. With the narcolepsy and migraine issues no caffeine at all is a no go for me for sure.

posted April 18, 2023

What Aspect Of Narcolepsy Worries You The Most?

A MyNarcolepsyTeam Member asked a question 💭
A MyNarcolepsyTeam Member

Medications constantly becoming ineffective

posted February 27

How Do Beverages With Caffeine Affect Your Narcolepsy?

A MyNarcolepsyTeam Member asked a question 💭
A MyNarcolepsyTeam Member

To me, caffeine is just an ingredient in some drinks I like. Coffee and soda mainly though long ago I was loving redbull. I can't feel any difference after drinking a soda other than it tasted good.

posted May 22

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

A MyNarcolepsyTeam Member asked a question 💭
A MyNarcolepsyTeam Member

I have not been forced to stop driving. Everywhere I drive is within 15 miles. If I have to go farther I ask for help from support group (family). They love me and understand what I am going through.

posted December 22, 2022

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

A MyNarcolepsyTeam Member asked a question 💭
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, 2022

Did Anyone Else “diagnose” Themselves First?

A MyNarcolepsyTeam Member asked a question 💭

Has anyone else figured out that they had narcolepsy before their doctors? I always have trouble getting my doctors to truly listen to what I’m saying, and for them to not say that EVERYTHING wrong with me is because of my anxiety/mental health. No one would listen, so I talked to my psychiatrist and told HIM I was pretty sure I had it, told him my symptoms... HE referred me to a sleep specialist, I did the studies, and now it’s confirmed. I’m 32. I’ve been having symptoms since I was a kid. 8th… read more

A MyNarcolepsyTeam Member

It sucks that alot of people say the same thing. Doctors need to be more involve and if they really have a passion for their career, that they went to school for so many years. They should start… read more

posted January 29

Do Stimulants Help?

A MyNarcolepsyTeam Member asked a question 💭

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!

A MyNarcolepsyTeam Member

I’m taking Modafinil and it is helpful. At times I feel a bit anxious in the mornings after I’ve taken my modafinil.

posted July 13, 2023

What Symptom Of Narcolepsy Do You Find Hardest To Manage?

A MyNarcolepsyTeam Member asked a question 💭
A MyNarcolepsyTeam Member

EDS

posted September 25, 2023

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

A MyNarcolepsyTeam Member asked a question 💭
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, 2022 (edited)
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