Connect with others who understand.

Sign up Log in
Resources
About MyNarcolepsyTeam
Powered By
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 Well Does Modefil Or Provigil Work For EDS And /or Cateplexy?

A MyNarcolepsyTeam Member asked a question 💭
Mcallen, TX
September 25, 2020
View reactions
A MyNarcolepsyTeam Member

I am now at the age of Fourty. I first started falling asleep everywhere at the age of seventeen. I am currently on along Modafinil for my Narcolepsy. I take 400 mg a day but I am still napping two to three times a day. I am going to be three years in with an actual diagnosis. I am going to take some advice and ask my family practice to refer me to a Neurologist. Any other suggestions?

February 13, 2021
A MyNarcolepsyTeam Member

See a neuro who lists narcolepsy as a specialty. My first happened to also have it himself. He was a miracle worker for me as I tend to go straight to the floor w/no warning, fall asleep like a drunk at family gatherings or my precious daughter(s) drop by. Before Dr X began treatment, they thought I was over-medicating and treated me like a dog. When I could no longer be accepted in physical therapy, narcolepsy was listed as the cause.
ATLAST, a reason that made sense (age 60 at that time). I was referred by a GP to a neuro, who by chance knew all about it first hand! He started me on adderall and xyrem. But did not know if I had cataplexie til that Easter when I kept falling asleep and my daughters were furious cause I seemed uninterested in their tales.

So my eldest shot a vid. with her smartphone and they were hooting & hollering about it; I asked them to send it to my doc.
Classic cataplexie.
Now I take adderall 3 times a day and xyrem for @4-years then that Doc moved away. I have been without now going on 9-mos. due to insurance. I went from traditional medicare to a PPP and lost all specialists except pain management and a pc! It's been hell too. 4-concussions, tried Ritalin but Primary was scared to raise the dose beyond 20mg tid and it couldn't do anything so he finally just this week put me back on adderall, thank goodness. I just switched to an Advantage Plan and am calling a neuro in San Antonio with a renowned Neuro Narcolepsy specialty. Can't get there soon enough!
Interested in what's the deal with elderly sufferers.

November 20, 2020
A MyNarcolepsyTeam Member

Don't listen to music when you are driving, it makes it worse. Listen to NPR or anything stimulating to keep your mind actively listening.

May 13, 2021
A MyNarcolepsyTeam Member

See if your insurance will allow a home sleep study. I’m not sure what is involved but you could keep your schedule & still get the test done.

January 17, 2021
A MyNarcolepsyTeam Member

I take provigal and it dont touch my cataplexy. It helps me stay awake. I take it in combination with Ritalin

October 3, 2020

Related content

View All

Does Anyone Have Less Severe Cataplexy And Could Explain What It Is Like?

A MyNarcolepsyTeam Member asked a question 💭
Boston, MA

Is It Possible To Have Cataplexy Without Narcolepsy?

A MyNarcolepsyTeam Member asked a question 💭
West Covina, CA

Did Anyone Else “diagnose” Themselves First?

A MyNarcolepsyTeam Member asked a question 💭
Idaho Falls, ID
Continue with Facebook
Continue with Google
By joining, you accept our Terms of Use, and acknowledge our collection, sharing, and use of your data in accordance with our Health Data Policy and Privacy policies.Your privacy is our priority Lock Icon
Already a Member? Log in