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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.

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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

Is Anyone With Type 1 Narcolepsy, Which Includes Cateplexy, Had Any Success With Meds Which Help Reduce Cateplexy? Prescription Or Other?

A MyNarcolepsyTeam Member asked a question 💭
Boise, ID

My cateplexy is becoming more frequent as time goes on.

George W.

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A MyNarcolepsyTeam Member

After 3 years I had to stop the XYREM. I had excessive weight loss and frequent wakings during the night.

I currently take ’indica pm’ 10mg THC and I sleep so well. No sensation of feeling high… read more

What Medication Do You Take For Your Narcolepsy?

A MyNarcolepsyTeam Member asked a question 💭
Dunlap, TN

I’m currently on 60mg Vyvanse and 30mg Adderall a day and I’m still struggling to stay awake 😭 hoping to try Lumryz here soon. Tried Xywav and couldn’t wake up for the 2nd dose.

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A MyNarcolepsyTeam Member

I'm on 4 meds. 300 mg Provigil (200 mg when I wake up, 100 mg at 11:30 AM), 45 mg generic Dextrostat (20 mg when I wake up, 15 mg at 11:30, 10 mg at 4 PM), 35.6 mg Wakix with breakfast, and Lumryz 6g… read more

Did Anyone Else “diagnose” Themselves First?

A MyNarcolepsyTeam Member asked a question 💭
Idaho Falls, ID

Has anyone else figured out that they had narcolepsy before their doctors? I always have trouble getting my doctors to truly listen to what I’m saying, and for them to not say that EVERYTHING wrong with me is because of my anxiety/mental health. No one would listen, so I talked to my psychiatrist and told HIM I was pretty sure I had it, told him my symptoms... HE referred me to a sleep specialist, I did the studies, and now it’s confirmed. I’m 32. I’ve been having symptoms since I was a kid. 8th… read more

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A MyNarcolepsyTeam Member

It sucks that alot of people say the same thing. Doctors need to be more involve and if they really have a passion for their career, that they went to school for so many years. They should start… read more