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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.

What Aspects Of Narcolepsy Are You Grateful For And Worried About Lately?

A MyNarcolepsyTeam Member asked a question 💭
San Francisco, CA
November 20, 2023
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A MyNarcolepsyTeam Member

I can’t say I like anything about Narcolepsy. It is debilitating and has affected my whole life. Losing my driving license was the worst of it. I worry about the long term effects of taking my medication. I have been on Dexamphetamine and Fluoxetine for over 10 years. I have to take 4 tablets just to function and even then can fall asleep. There is nothing else I can take and I worry about developing Alzheimer’s, it would be awful.

November 20, 2023
A MyNarcolepsyTeam Member

Hmmm🤔

I think it's the vivid dreams as a bonus.

Rem within 4 minutes was in my sleep latency test, so it's to be expected.

BUT at the same time it mixes me up if it was a dream or reality.

For most of my life I've been sleepy every 2 to 3 hours..the worst is between 2pm and 5pm and 10pm to 12am. Then there is a cortisol push to wake up at 3 am or so. Go potty, drink water, go back to sleep. Best sleep is now between 4am and 10am...life says get up and be awake though. So I push through, try not to drive much, try to keep safe.

I'm tired. 😴

February 17
A MyNarcolepsyTeam Member

I am grateful that it is not a condition that is going to kill me.
So many people do not understand the condition and it is frustrating😉

November 21, 2023
A MyNarcolepsyTeam Member

I live with Narcolepsy type 1, I have it all. Cataplexy spells, possible seizures, severe sleep apnea, vivid dreams and hallucinations, and rls. God Bless us a who try in this judgemental world. May all have a good day on me.

February 19
A MyNarcolepsyTeam Member

Sometimes. I write down some of them.

February 18

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