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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

Don't give up. There are many more medications available today than there was just a few years ago. There are stimulants (Adderall, Ritalin, dexadrine) then there are non stimulating meds newer to the… read more

posted December 30, 2022
Do You Consume Or Avoid Caffeine?
A MyNarcolepsyTeam Member asked a question 💭
posted November 4, 2022
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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
What Aspect Of Narcolepsy Worries You The Most?
A MyNarcolepsyTeam Member asked a question 💭
posted August 19, 2022
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A MyNarcolepsyTeam Member

But I have a neurologist that say down with me about two years ago. And this what we did. It take generic and provigil the Ritalin is more for alertness and the provigil is for focus. Works wonders… read more

posted January 22
Were You Forced To Give Up Your Driver's License After Your Diagnosis? How Did You Cope?
A MyNarcolepsyTeam Member asked a question 💭
posted September 10, 2022
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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 💭
posted August 26, 2022
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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
What Analogy Would You Use To Help Someone Understand What It’s Like To Live With Narcolepsy?
A MyNarcolepsyTeam Member asked a question 💭
posted June 3, 2022
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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)
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!

posted June 1, 2020
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A MyNarcolepsyTeam Member

Adderall is useless for me and imho shouldn't be a base medication for testing narcolepsy 1 or 2 because it doesn't address the histamine levels in our brains like other stimulants do such as… read more

posted December 12, 2022
How Do You Manage Your Narcolepsy At Work?
A MyNarcolepsyTeam Member asked a question 💭
posted September 16, 2022
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A MyNarcolepsyTeam Member

I'm retired now, for 2.5 years (yay me!!) but I would nap on my lunch break and eat lunch at my desk while working. Sometimes catch a little microscope on a 15 minute break. I also had FMLA with time… read more

posted January 6
What Is Your Morning Routine?
A MyNarcolepsyTeam Member asked a question 💭
posted September 2, 2022
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A MyNarcolepsyTeam Member

I've not used Frankincense before to help energize me, but I recently started using it at night, along with lavender oil, in my aromatizer to help me fall asleep and reduce my nighttime narcolepsy… read more

posted December 27, 2022
What Symptom Of Narcolepsy Do You Find Hardest To Manage?
A MyNarcolepsyTeam Member asked a question 💭
posted July 21, 2022
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A MyNarcolepsyTeam Member

Waking up in the morning and realizing I been sleeping on the toilet all night! Did that last night!

posted May 19
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