Connect with others who understand.

Sign up Log in
Resources
About MyNarcolepsyTeam
Powered By

Questions & Answers

Get practical advice and insights from people who understand

Don't see your question? Ask one here
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.

Featured Q&A

Which Narcolepsy Symptom Surprised You The Most?

By A MyNarcolepsyTeam Member 24 answers

What Tips Would You Share To Help With Seasonal Allergies?

By A MyNarcolepsyTeam Member 12 answers

Could You Share Any Dietary Changes And Tips That Have Helped With Narcolepsy?

By A MyNarcolepsyTeam Member 13 answers

How Does The Cold Affect Your Narcolepsy?

By A MyNarcolepsyTeam Member 20 answers
464 questions

If You Stop Taking Stimulant Meds How Soon Do You Feel Withdrawal Symptoms (besides Sleepiness)?

A MyNarcolepsyTeam Member asked a question 💭
Albany, NY
A MyNarcolepsyTeam Member

Next day, I wouldn’t call mine withdrawals tho, my tounge and feet get numb , I have bad facial twitching in my sleep, and I am as tired as I used to be without the meds. I never crave the meds or… read more

April 4

Did Anyone Have Surgery Or A Bad Virus Before Learning They Had Narco. ?

A MyNarcolepsyTeam Member asked a question 💭
Texas (for now

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

January 30

Is It Normal To Lose Body Control After A Narcolepsy Episode?

A MyNarcolepsyTeam Member asked a question 💭
Fairfield, VT

The other day I had fallen asleep because I had forgotten to take my medicine. When I woke up I stood then took a step and my whole body crumpled beneath me. I couldn't even reach out my arms to stop the fall. This has never happened to me before but I also have never gotten right up after an episode. Normally I gather myself together mentally and then move. So I didn't know if this was something I should worry about.

A MyNarcolepsyTeam Member

I have a drop in BP the neurologist & my Dr's tell me it's not cataplexy. I have had those spells going on 10-12 yrs.they were few & far between until the last 3-4 yrs often I can catch myself & sit… read more

November 7, 2023 (edited)

How Do You Ensure You Get Your Medicine On Time Each Month? (CVS Caremark)

A MyNarcolepsyTeam Member asked a question 💭
Philadelphia, PA

Three months in a row I have struggled to get my Nuvigil 200mg (60 count) rx. CVS always has it on backorder, and now my new pharmacy took 5 days to get my meds. I work full time, so I make a lot of mistakes when I am unmedicated.
Anyone with CVS caremark? What is a less stressful way to get your meds on time?
Idk if it's my state... PA only allows 2 days before the rx is out, and no auto refills. I can't keep going through this, and I know I'm not alone. :(

A MyNarcolepsyTeam Member

My doctor called in my scripts Modafinil & 2 dosesages of Ritalin on Friday and I was told that they are on back order! REALLY!??! I seriously cannot remember when the last time my meds were… read more

May 28, 2023

Wondering About Any Results / Opinions Of The Medication Xyrem?

A MyNarcolepsyTeam Member asked a question 💭
Owensville, MO

I am considering asking my doctor if/when possible I may try this medication. First wanted to find out how it has worked for anyone who has tried it.?.

A MyNarcolepsyTeam Member

I wont try it. The warnings alone scared the crap out of me.

March 14

(edited) Has Anyone Tried Light Therapy Glasses?

A MyNarcolepsyTeam Member asked a question 💭
Wilson, NC

I'm going to purchase luminette 3 glasses to help with my EDS. (Edit: I removed "blue" from my question since I noticed I may have misnamed them.)

A MyNarcolepsyTeam Member

Here's the wording from the Luminette 3 website
Luminette® emits a safe blue-enriched white light peaked at 468 nm. This wavelength is proven to be the most effective at triggering the body's… read more

December 12, 2022

Anyone Else Having Issues With The Adderall Shortage? Anyone Else Noticing A Difference With The Different Brands And Manufacturers?

A MyNarcolepsyTeam Member asked a question 💭
Holland, MI
A MyNarcolepsyTeam Member

Omg! Yes! Last month I got mine from Walmart because nowhere in over 109 miles had it and it was like I was taking nothing !

September 26, 2023

Has Anyone Else Heard About This?

A MyNarcolepsyTeam Member asked a question 💭
Florence, SC

Looks like a new, timed-release version of Xyrem/Xywav might be available soon that will eliminate having to wake up and take a second dose.

https://investors.avadel.com/news-releases/news...

A MyNarcolepsyTeam Member

MichaelYJ did your 2nd dose get you to sleep? Do you eat your dinner hours before you go to bed?

Just curious if your stomach is full, you will have slow absorption. If your last meal was finished… read more

September 9, 2022

Does Anyone Nap At Work?

A MyNarcolepsyTeam Member asked a question 💭
Denver, CO

I currently live close enough to work that I can come home to nap if needed (1-3 times daily), but will be moving soon and will live over 1 hour from the office. Has anyone worked out a sleeping arrangement in the office? If so, what did your setup look like?

A MyNarcolepsyTeam Member

I can if needed. I work at a daycare, and I only get 30 minutes for lunch, but one of my managers will come in and cover for me if I’m really struggling or feel like I need a longer break. I usually… read more

September 14, 2022

What's The Worst Situation You Fell Asleep In?

A MyNarcolepsyTeam Member asked a question 💭
San Francisco, CA
A MyNarcolepsyTeam Member

Anytime I am driving is a bad situation, waiting for a doctor's app via Zoom, on a test that was really important.

October 8, 2023
Continue with Facebook
Continue with Google
Lock Icon Your privacy is our priority. By continuing, you accept our Terms of Use, and our Health Data and Privacy policies.
Already a Member? Log in