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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.

Has Anyone Lost Weight After Diagnosis Of Narcolepsy/treatment?

A MyNarcolepsyTeam Member asked a question 💭
Sacramento, CA

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?

March 14
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A MyNarcolepsyTeam Member

I’m in moda 200mg, 100mg extra if needed but I don’t usually take it because it is too much so then I can’t sleep. I take melatonin 6mg at night

March 15
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 I’d like to keep at least a bit of the booty.

March 27
A MyNarcolepsyTeam Member

Mine was flagged too

March 15
A MyNarcolepsyTeam Member

My weight was steady for a few years after diagnosis. But in recent years, as my meds (particularly stimulants) become less effective, I have gained about 25 pounds. I eat too much and am too exhausted to move enough. I tried adjusting my food intake but then I would rebound. It's so hard.

March 15
A MyNarcolepsyTeam Member

"The content you are trying to post is not allowed on MyNarcolepsyTeam. Please
consider revising your post."

Tell me what I cannot say. Nothing was strange.
Wtf, I thought mentioning 'Sex'tons comment at the end of my post did it.... can I not mention the name of a medication I'm on? Any Moderators around? Tell me what got flagged!!! Only a tiny fraction of the reply I typed got through... why?
Anyhow-
What meds are you on, was one of my questions... I told mine and got Blocked... :) 20 min of 'revising' and still No. ?

;) ah, life. :)

March 15 (edited)

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