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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.
422 questions

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

A MyNarcolepsyTeam Member asked a question 💭
A MyNarcolepsyTeam Member

All I can tell you here is, from what I read, is that symptoms can ease as a person ages, in cases of idiopathic narcolepsy
In my case, no, as my (secondary) narcolepsy is caused by radiation damage… read more

posted 4 days ago

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 💭
A MyNarcolepsyTeam Member

I did! Hang in there! There’s a lot of people in the world. Yes, it’s going to be more of a challenge, (goes without saying, yeah? 😸) but don’t give up. I met my sweetheart after I got narcolepsy, so… read more

posted 4 days ago

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 💭
A MyNarcolepsyTeam Member

Hello, Cindy-
I’ll spare you the technical cause & effect terminology here. Simplified; people stay awake much better on an empty stomach. Evolution-wise, If we got sleepy when we’re hungry, we’d go… read more

posted 4 days ago (edited)

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 💭

GeorgeW.

A MyNarcolepsyTeam Member

I've been on instant release Adderall since diagnosis in 2011 and it's worked well enough, so I've been afraid to try anything else. However, it can affect my ability to fall asleep some nights and I… read more

posted 3 days ago

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 💭

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

Honestly, eating is last on my list of things to do, and many times I simply don't
I was never a foodie, (I weigh a whopping 105 lbs) and now, given the choice, I'll nap over eating every time. … read more

posted 2 days ago

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 💭
A MyNarcolepsyTeam Member

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

posted 21 hours ago

Can We Compare Notes On Cataplexy? I Think I Just Had My First Spell. How Does This Compare To Yours?

A MyNarcolepsyTeam Member asked a question 💭

I think I just had my first cataplexy episode.

After a half hour teleconference which involved a lot of intense attention, I was standing Discussing the call with my wife in the kitchen.

All of a sudden my legs became super wobbly and felt like they were going to give out. My arms also felt rubbery.

It was difficult to start movement like my legs wouldn't do what I wanted them to do.

Superintense sleep attack with it.

A MyNarcolepsyTeam Member

My Cataplexy is usually associated with emotions. So I try to suppress laughter and crying which isn’t the best.

posted June 2

What's A Common Misconception About Narcolepsy?

A MyNarcolepsyTeam Member asked a question 💭
A MyNarcolepsyTeam Member

Absolutely! And the damage those misdiagnosis can do to the ego are pretty damaging for some of us. The people around us don’t correct those misconceptions. And like you say, even loved ones are… read more

posted 1 hour ago

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

A MyNarcolepsyTeam Member asked a question 💭
A MyNarcolepsyTeam Member

looks great.. expensive...

posted June 5

Hello! I Am Moving From The US To Spain For School. Does Anyone Have Experience In Obtaining Medication In Europe, Specifically Modafanil?

A MyNarcolepsyTeam Member asked a question 💭

I have diagnosed Narcolepsy, with 200mg Modafanil 2x a day.

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