Narcolepsy

Minerva624
Minerva624 Posts: 577 Member
in Motivation and Support
Any narcoleptic folks around here? I was just officially diagnosed and have yet to start any medications. My main challenge is staying fit. I have no problem maintaining a healthy weight but I've lost a lot of lean muscle recently and struggle to slip back into my exercise routine. Any tips?

Replies

  • Minerva624
    Minerva624 Posts: 577 Member
    Anybody? :) Even secondary advice would great; like if you have a friend with narcolepsy and tips on how they are able to stay fit and strong.
  • dgage8
    dgage8 Posts: 28 Member
    I have narcolepsy too!!! without my provigil it's really tough, not gonna lie. Even with my meds, running and exercise are crucial. I think narcolepsy is a huge hurdle in being healthy. For so many reasons. I hope you are able to get on a good medicine regimen- it is a life changer. In ways you can't even imagine.
  • deseablev
    deseablev Posts: 26
    I have it and my recommendation is to find a time that works for you. For me it's early in the morning because it forces me to do it because I know (mentally) I have to start my workout at a certain time in order to finish in time to get ready for work. I also find it helps me gain more energy with I workout in the morning, and most importantly when I work out consistently. Working out every day actually helped me gain a little more energy. When I try working out in the afternoon or evening I have much less energy, so I either make excuses and put it off since I am not in a time crush or I am too tired after a needed nap, etc. So get in a routine; the more in shape you are the easier it is too.
  • nisijam5
    nisijam5 Posts: 9,964 Member
    My daughter takes Zyrem, it is the only med she takes...I am not sure what meds you are on or if you have insurance. She did not like the Concerta, Ritilin or provigil as they made her feel (anxious). But, she's in school full-time for pre-vet and works about 20 to 25 hours a weeks at a barn doing barn chores.

    Her best times are in the morning. Her most tired are when she sits and after meals. For her, it's best to just keep moving.

    Hope this helps...
  • Kontxesi
    Kontxesi Posts: 86 Member
    I know this is an old thread, but I know there are others who need to see it.

    I was diagnosed 4 months ago. My doctor started me on Nuvigil, which caused me to lose 13 lbs in the first two weeks. I gained it all back plus some in no time.

    Nuvigil kept me from falling asleep at stoplights and at my desk, but it left me very foggy. It also caused a really annoying speech impediment and was too expensive for me. I was switched to Adderall two months ago. It works well for me and gives me the energy I need to get to the gym. (It does raise my already-elevated heart rate/blood pressure, so I have had to start taking beta blockers twice a day instead of once.)

    I have tried getting up early to go to the gym before work, but I reset my alarm every single time. I am supposed to be at work at 6AM and just can't make myself get up earlier. I am currently going after work every day for 30-45 minutes of cardio. I haven't added in strength training yet, but I plan to soon.

    Without medication, there is no way I would be able to keep up a gym routine.

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