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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.

Featured Q&A

Where Else Do I Go When I Get No Help From Sleep Programs When I Get Is That "everything Is Ok"....no Problem Found ?

By A MyNarcolepsyTeam Member 10 answers

Does Anyone With Type 2 Narcolepsy Ever Experience Jerking In There Sleep

By A MyNarcolepsyTeam Member 6 answers

Which Narcolepsy Symptom Surprised You The Most?

By A MyNarcolepsyTeam Member 28 answers

What Are Your Top Tips For Dealing With Narcolepsy In The Heat?

By A MyNarcolepsyTeam Member 17 answers
497 questions

Narcolepsy And Severely Sleep Deprived

A MyNarcolepsyTeam Member asked a question 💭
Stafford, VA

Even though I sleep 9-10 hours a night, my neurologist said that I have been severely sleep deprivation for over a year and it is effecting my memory and cognition to the point of being diagnosed with Mild Cognitive Disorder.. Anyone else?

A MyNarcolepsyTeam Member

I’m glad to hear Lumryz is helping. How many milligrams? I tried it but had to stop due to side effects. I was a week on the 4.5mg, I started the 6mg and next day had to go back to 4.5mg. After a… read more

June 30

Are You Frustrated With Finding Effective Treatments For Narcolepsy?

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

I've been doing pretty well with modafinil, 200 mg, for the last 15 years or so. In addition, I find that doing exercises that stretch my neck, upper back, and shoulders right before bed help head off… read more

14 hours ago

Does Anyone On Here Have An At Home Job? It's Been Hard Driving To Work And Staying Awake. Started Wakix So I'm Hoping That Will Help Soon

A MyNarcolepsyTeam Member asked a question 💭
Rossville, GA

I have narcolepsy with cataplexy and it's hard to do certain jobs. I have to keep busy constantly

A MyNarcolepsyTeam Member

I know the vibes all too well

June 27

Does Anyone Know How To Start The Process Of Getting A Service Dog For Narcolepsy?

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

I had a 110 lb Weimaraner with whom I had an extremely close relationship. He slept with me and went every where I went. Not a service dog but very smart. He woke me up to take care of getting him… read more

August 31

Does Anyone Ever Spontaneously Come Out Of This Ever? I’m Just Looking For Any Hope Whatsoever.

A MyNarcolepsyTeam Member asked a question 💭
Kcmo
A MyNarcolepsyTeam Member

Yes, there are cases that have totally recovered. Very uncommon but it does happen.

June 30

I Just Want To Find Hope. How Does Somebody Like Me Ever Find A Relationship? I Fear I Will Never Be Worthy Of Having A Good Relationship

A MyNarcolepsyTeam Member asked a question 💭
Kcmo
A MyNarcolepsyTeam Member

Everyone I have ever met with narcolepsy is married. At 79 I have had 2 long marriages myself. Don’t give up. Sometimes it just takes a long time to meet the right person.

August 31

I Get Extremely Tired With Narcolepsy After Hard-core Swimming Class As Soon As I Eat Anything After Workout

A MyNarcolepsyTeam Member asked a question 💭
Connecticut, CT
A MyNarcolepsyTeam Member

I run, and with longer runs, I bring glucose tablets or maple syrup. I put a Gatorade like mixture in the water in my camelbak. (Dextrose plus a little salt) . Helps level it out.

June 30

Which Meds, Prescription Or Non, Have Worked The Best To Help Lessen The Sleepiness During The Day For You? Same Question, But Cateplexy?

A MyNarcolepsyTeam Member asked a question 💭
Boise, ID

GeorgeW.

A MyNarcolepsyTeam Member

I took Xywav for over 2 years, very helpful with sleep. I had trouble maintaining my weight. I’m 5’ 7” and lost over 30 lbs with xywav. Down to 110lbs. My provider discontinued prescribing it. Now I… read more

August 6

How Does Everyone Handle The Appetite Rollercoaster? I’m Not Hungry All Day But Get Hungry In The Evenings.

A MyNarcolepsyTeam Member asked a question 💭
roxietish315@aol.com

I take 60 mg of addrrall XR in the mornings just to be able to do any sort of daily activities and some afternoons I have to take a 10 mg adderall tablet just to get through the rest of the day.

A MyNarcolepsyTeam Member

Don’t take too many stimulants. I have never taken stimulants, but all the western medicines I have taken can only control the dosage and then the dosage becomes larger and larger. In the past, the… read more

June 16

How Do You Guys Get The Most Out Of This Site? I See A Lot Of People Don't Come Online Frequently And I Need Support With The Functionality

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

This site is very awkward and frustrating to use (for me) and navigate around in, as well as having huge, empty, space filling areas of…really, nothingness. I’m sure whatever professional website… read more

June 12 (edited)
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