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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.
398 questions
I've Been On Xyrem For Several Years And My Prior Authorization Has Been Denied.
A MyNarcolepsyTeam Member asked a question 💭

My doctor will appeal it, but how can the insurance company decide that I magically no longer need this medication???

A MyNarcolepsyTeam Member

Every year a insurance company can and most likely will drop prior authorization and you start over. I always make sure every year my insurance pays for everything the next... everyone needs to know… read more

posted March 24
Has Anyone Lost Weight After Diagnosis Of Narcolepsy/treatment?
A MyNarcolepsyTeam Member asked a question 💭

I have consistently been losing weight for a few years without trying. I’ve lost around 30 lbs in 2-3 years. Doctors are disagreeing on the cause, one seems to think it’s my meds for narcolepsy, although I’ve only been on those six months. Curious to know if anyone lost/gained weight once diagnosed and beginning treatment?

A MyNarcolepsyTeam Member

Over thirty pounds! I think it’s all the amphetamines.

I know people will hate me for saying this, but I hope I don’t lose too much more. I’m losing some muscle with it and, let’s just say, at my age… read more

posted March 27
Has Anyone Ever Taken Wakix While Pregnant?
A MyNarcolepsyTeam Member asked a question 💭

I spoke with my sleep specialist, my doctor, the manufacturer, and panther x pharmacy. They did not have any information if the medication is safe to take when pregnant. They said there were animal and few clinical trials but I don't know. My sleep specialist told me to ask my doctor. My doctor told me to ask the manufacturer and it seems like I am getting the runaround. The pharmacy told me that there are few clinical trials with pregnant women and medications with lots of medication not just wread more

A MyNarcolepsyTeam Member

I would definitely read up on that

posted March 16
Does Anyone Sleepwalk Since Diagnosed? I Have Started Doing That Some And Also Doing Things I Don't Remember Doing.
A MyNarcolepsyTeam Member asked a question 💭

When I have an episode of dozing, as I am waking up, I start talking strange things. I really don't know how to explain it. So weird and strange!

A MyNarcolepsyTeam Member

While I have never experienced sleep walking, I do sleep talk! Apparently it is a part of narcolepsy. I also experience very vivid dreams which tend to blur with reality. This has led to me running… read more

posted April 4
Has Anyone Tried Something Called LUV? They Are Liquid Drops Sold Online. Also, Does Anyone Else Have ADHD Symptoms? I Have All! I'm 59
A MyNarcolepsyTeam Member asked a question 💭
A MyNarcolepsyTeam Member

I have also seen these but have not tried them I would also like to know if anyone has had good results with these

posted April 4
If You Stop Taking Stimulant Meds How Soon Do You Feel Withdrawal Symptoms (besides Sleepiness)?
A MyNarcolepsyTeam Member asked a question 💭
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

posted April 4
Help With Finding Doctor/neurologist ??team In My Area…(Los Angeles Suburbs) For Daughter 19 In Bad Shape? Where Do I Start???
A MyNarcolepsyTeam Member asked a question 💭

L.A area
Need Sleep Study
Narcolepsy type 1 ( Dr. refer)
Daily attacks

Has Anyone Tried The Sodium Oxybate For Narcolepsy?
A MyNarcolepsyTeam Member asked a question 💭

I struggle heavily with sleeping anxiety at night and my doctor is trying to get me it. Wondering if anyone can speak to their experience so I can gage an idea! Thanks!

Ever Heard Of Reading-induced Narcolepsy?
A MyNarcolepsyTeam Member asked a question 💭

I pretty much can’t read more than 2-3 pages of a novel without dozing off. Makes life quite weird at work when I have to read film scripts. Watching TV/ films is also pretty bad. Don’t know when I watched a whole movie/ even in the cinema.

What is helpful is when I want to nap… all I need to do is read for a few minutes.

A MyNarcolepsyTeam Member

Sounds like we're the same, although I'm never up for that long. I have no problem falling asleep at night if I can read a bit, but I tend to wake up a lot in the night. When I wake up in the middle… read more

posted March 14
Does Anyone Else Experience "absent Sleep Attack" , Where You Don't Fall Asleep In The Typical Way But Get Brain Fog Moments?
A MyNarcolepsyTeam Member asked a question 💭

Where you dont fall asleep but have no ability to focus, hear, or comprehend. It only lasts minutes but it takes a min or two to shake it off

A MyNarcolepsyTeam Member


posted April 1
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