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.
464 questions

Can It Be Difficult Getting Diagnosis Even With Sleep Study?

A MyNarcolepsyTeam Member asked a question 💭
Newport Pagnell, UK

I am struggling to get a diagnosis although I am getting increasingly convinced I have narcolepsy. MSLT was 6 mins average but no REM onset during the naps. Sleep lab was very hot and lab CPAP very noisy so I don't think it was typical as I usually srart dreaming as soon as I go to sleep. I have so many vivid dreams every night, many of them lucid and it is exhausted. Waking hallucinations are frequent too and usually accompanied by sleep paralysis but Doc said no narcolepsy. Is this possible?

A MyNarcolepsyTeam Member

I hit REM sleep but my sleep latency was 12 minutes so I haven't been officially diagnosed yet. My primary believes the antidepressant i had to stop taking before my test wasn't fully out of my system… read more

November 7, 2023

Are There Any Artist?👀🎨

A MyNarcolepsyTeam Member asked a question 💭
Budapest

Hey there!
I was wondering if there were any artist among us who are deeply inspired by narcolepsy caused visions/nightmares. If you are one let me know in the comments! Or if you know some artists like that, feel free to link them below! As an artist with narcolepsy myself, I'm always interested in what inspires others like me.

A MyNarcolepsyTeam Member

I’m working with ideas of disability. Thinking hard about invisible disabilities. I’ll see what comes up.

November 12, 2023

Is It Weird That I Can Still Feel Sleepy (and Sleep) On 60mg Of Vyvanse? Anyone Else?

A MyNarcolepsyTeam Member asked a question 💭
Atlanta, GA
A MyNarcolepsyTeam Member

Thank God no one was hurt, my first clue that something was wrong was when I started falling asleep behind the wheel in broad daylight.

January 31

I Am Diagonosed With Severe Sleep Apnea

A MyNarcolepsyTeam Member asked a question 💭
Brisbane, AU

Hi Folks,

I am diagonosed with severe sleep apnea, and I am struggling to continue to wityh my CPAP Therapy. Tried different masks but still feel claustrophobic and uncomfortable. Is there anyothe therapy,meds etc I can explore?

Cheers,

A MyNarcolepsyTeam Member

That`s a high dosage I would say

June 23, 2023

New To Forum / Anybody Experience With A Drug Called Xyrem?

A MyNarcolepsyTeam Member asked a question 💭
New Jersey, NJ

I was diagnosed with narcolepsy in 2006. My wife and I are expecting a baby so I once again saw a sleep specialist here in the US (I moved from Europe). They are suggesting a drug called Xyrem; can anybody share their experience with it?

For context: I have been taking other (not very helpful) medications for the past 10+ years. The doctor's description of Xyrem was a bit odd (e.g., having to wake up during the night to take a second dose?), so was curious to see if anybody has tried this and… read more

A MyNarcolepsyTeam Member

Personally, I found it to be horrible. Sooooooo salty, hard to take and I found it weird to get up just to take another dose. I stopped using it.

February 17

Is Anyone Taking "2" 200mg Brand Name Provigil Daily? .

A MyNarcolepsyTeam Member asked a question 💭
Bristol, VA

And on the 2 / 200mg name brand Provigil daily. What time span between doses and on the second dose is there a cut off time? Based on if you take it any later you wouldn't be able to fall asleep. Or what?

A MyNarcolepsyTeam Member

I took it for a while, and it did not help me at all, and gave me major headaches.

April 18, 2023

What Specialist Will I Need To See To Visit In Order To Figure Out If I Have Narcolepsy.

A MyNarcolepsyTeam Member asked a question 💭
Florida City, FL

I’ve have sleep apnea yet after 21 years of dealing with sleepiness I’m getting frustrated on which sleep disorder is happening. Starting to have a paralysis upon awakining each morning k

A MyNarcolepsyTeam Member

Start with a day & all night sleep study with sleep doctor

April 18, 2023

Wakix?

A MyNarcolepsyTeam Member asked a question 💭
Lawton, OK

Has anyone been able to get on Wakix? My doctor has spent hours and hours per patient attempting to get them on Wakix with no success! What is the deal?

A MyNarcolepsyTeam Member

Hoping things have gotten better and you can stay awake longer for driving.

February 16

Has Anyone Been Diagnosed With Borderline Personality And Narcolepsy 2? What Drugs Are You On?

A MyNarcolepsyTeam Member asked a question 💭
Austin, TX
A MyNarcolepsyTeam Member

Yep, I fall asleep at the dinner table...with food in my mouth!!! I just cannot sit still - I always fall asleep. If I get upset, I also have a lot of trouble staying awake.

September 20, 2023

How Often Should A Person With Narcolepsy W Cataplexy Have A Sleep Test?

A MyNarcolepsyTeam Member asked a question 💭
Rocky Mount, VA

I was diagnosed in 2015 which was my first and only test; should a patient be tested again after so many years

A MyNarcolepsyTeam Member

@A MyNarcolepsyTeam Member Hello 👋🏾
I am also waiting for another study
Which is scheduled for August.

March 22, 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