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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.

How Many Of You Become EDS-free With Your Medication? Is It Even Possible?

A MyNarcolepsyTeam Member asked a question 💭
Buffalo, NY

My EDS, from what I gather, is quite severe. Because of this, it does not take much for my stimulants to become ineffective. I am constantly informing my doctor about this. The messages are mostly ignored or met with shrugged shoulders at this point because I have taken the highest amount of any option you can think of. My doctor is also against a routine cycling of prescriptions to keep my body "guessing" even though I'm sure it would help. While my Xyrem prescription seems to be helping my… read more

December 13, 2023
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A MyNarcolepsyTeam Member

I began taking Wakix several years ago. 7-10 days in and the changes were life altering. It's like I looked out my window and could see colors again. My overwhelming desire to sleep 24/7 was improving too. I still struggle when it's overcast, rainy, etc. and I don't drive during afternoons/evenings hours.

December 21, 2023
A MyNarcolepsyTeam Member

Following this post! I take 2 different stimulants at max dose and a wakefulness promoting med at max dose, along with an antidepressant. Changing combos works for about two weeks and then back to looking and feeling like a zombie. I am battling EDS constantly throughout each and every day. It would be nice to get an idea of what a realistic therapeutic goal is for us.

December 14, 2023
A MyNarcolepsyTeam Member

I also develope a tolerance EXTREMELY QUICKLY to all meds! My current doctor is apparently against amphetamines and also not willing to "cycle" my meds! So now she's wanting me to try Xywav. I have decided to give it a chance. Still waiting to hear from insurance company sooo?..... We'll see ..?..

December 21, 2023
A MyNarcolepsyTeam Member

I have the same problem as you, my doctor prescribed me xyrem, while waiting for the medication my doctor told me to use mediknet, it's a medication used to treat Adhd but in my case I got told to use it during the day as a temporary fix, I take abt 4 pills a day and they do help me with the EDS but as I said it's a temporary fix, I take the pill and it helps me for like 2h.

January 8

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