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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.

Is There Anyone With Narcolepsy (Type 1 Or 2) Who Tries Managing Without Medication?

A MyNarcolepsyTeam Member asked a question 💭
Copenhagen, DK

Is there anyone with narcolepsy (Type 1 or 2) who tries managing without medication? I'm still searching for something that effectively alleviates my symptoms without side effects that outweigh its benefits. I have tried ritali and modafini so far, but both of them lead to major mood swings and even personality changes that I was not willing to accept. Furthermore, they elevated my puls significantly which made me feel super edgy all the time. In the meantime I wouldn't mind staying off the meds… read more

November 15, 2023
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A MyNarcolepsyTeam Member

I could live without me medication but I know for a fact I couldn’t keep a job, and I would sleep most of my day away on and off. I was diagnosed late in life and also go days without my meds when waiting for my prescription to be filled at the pharmacy, so that gives me a reminder of how my life would be without my meds and I also hate to rely on medications but we just have to learn to accept your self and think of the medication as something we need. If you are ok with most of your day feeling drained and can make the time to nap repeatedly throughout the day then try to follow the narcolepsy diet and scheduled naps. Personally I wouldn’t go back to my life without meds as it is still very hard daily with my meds . I am on vyvanse I have tried Ritalin also and hated it for the same reasons. Vyvanse doesn’t seem to affect my moods but I did have to get used to eating normally on my meds because first few years It was hard to keep an appetite.

December 13, 2023
A MyNarcolepsyTeam Member

I initially tried Ritalin and no way will I take that again. I felt angry and frustrated. Adderall works better for me but I hate having to depend on meds.

November 26, 2023
A MyNarcolepsyTeam Member

Naps

November 25, 2023
A MyNarcolepsyTeam Member

Please read NUTRITIONAL HEALING by Phyllis A. Balch

November 15, 2023
A MyNarcolepsyTeam Member

I like taking calm in the evening to help the edginess

November 15, 2023

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