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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.
394 questions
Anyone Using The Single Dose Medication? Is It Working For You?
A MyNarcolepsyTeam Member asked a question 💭
When's The Best Time To Exercise For Someone With Narcolepsy?
A MyNarcolepsyTeam Member asked a question 💭
A MyNarcolepsyTeam Member

All the time except a few hrs brfore bedtime

posted February 17
Have Any Studies Been Done That Equates Narcolepsy With Being Exposed To Ingesting Toxic Chemicals?
A MyNarcolepsyTeam Member asked a question 💭
A MyNarcolepsyTeam Member

I have no read anything about toxic chemical ingestion. Only autoimmune syndrome.

posted April 2
What Kind Of Natural Remedies Are Good For Type 2 Narcolepsy?
A MyNarcolepsyTeam Member asked a question 💭
A MyNarcolepsyTeam Member

I agree about smaller meals, especially if you have any difficulty with acid reflux . If you do have acid reflux or sinus drainage you can also raise the head of your bed by 5 or so inches. I also… read more

posted February 8
My Polysomnogram And Mslt Both Showed A Complete Lack Of Delta Wave Sleep... Any Others Here With Same Test Results?
A MyNarcolepsyTeam Member asked a question 💭
A MyNarcolepsyTeam Member

Four minutes of N3? You're LUCKY! My result was literally zero seconds. ;)

posted February 13 (edited)
I Started Taking Sunosi About A Month And A Half Ago And So Far So Good. Is Anyone Else Taking It? What Are Your Results/side Effects?
A MyNarcolepsyTeam Member asked a question 💭
A MyNarcolepsyTeam Member

It does. Or did I should say. Priced right out of another med. $895 per month. Back to the drawing board. 😞

posted March 14
Does Anyone Know If You Can Carry Sodium Oxybate On An Airline?
A MyNarcolepsyTeam Member asked a question 💭
A MyNarcolepsyTeam Member

Yes, but the bigger question is whether it is allowed in another country if you are traveling out of country. I had my doc write a brief letter noting my prescription and dates of travel.

posted January 28
Hi, Did Anyone Take Ambien Regularly For Insomnia And Were Told They Had To Go Off Of It For The Mslt? Or Were You Able To Still Take It?
A MyNarcolepsyTeam Member asked a question 💭
Did Anyone Have Surgery Or A Bad Virus Before Learning They Had Narco. ?
A MyNarcolepsyTeam Member asked a question 💭

This has no connection to Covid unless someone else has their personal experience relating to it.

I was 10? Bad tonsils (something else)? They removed them and I got so sick I had to return to hospital. After lots of tests everyone was freaked out because somehow I had Epstein Barr (Mono - the kissing thing)🤮. Every person that knew me said, “that’s impossible.”
I didn’t eat or drink after anyone and didn’t even like my food touching on my plate (still dont). Plus at 10 I wasn’t having… read more

A MyNarcolepsyTeam Member

I had a normal sleep study the summer of 2021 in preparation for my gastric sleeve surgery. Got sleeved at the end of September and while recovering I got covid (Delta) the first week of December. By… read more

posted January 30
Does Anyone Else Struggle With Getting To Places On Time? (No Matter How Hard You Try Or The Hoops You Jump Through To Get There On Time) 😩
A MyNarcolepsyTeam Member asked a question 💭

I am consistently always always always 5-10 minutes late. The perfectionist inside this Narcoleptic body absolutely hates it, to the point of extreme self hate and I swirl down into depression and very low self esteem, if any. I don't have much support from family or friends. They are always quick to point out my flaws and especially my lateness or cancellations with getting together because I'm too afraid to drive (as I can be having a really really really bad day and I don't feel safe driving)… read more

A MyNarcolepsyTeam Member

Chance, thank you for the advice and for making me laugh.😄

posted January 24
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