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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?

posted 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

posted 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.

posted March 27
A MyNarcolepsyTeam Member

Mine was flagged too

posted 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.

posted 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. :)

posted March 15 (edited)

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