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Waterlemon

827d

Hi! I’m 18 and i was diagnosed with narcolepsy without cataplexy when i was 16/17. i have little tiny bouts of cataplexy (loss of muscle tone in my legs when i laugh or get excited) but i wouldn’t say it’s anywhere close to the point that i need treatment for it. anyways, i know most people are diagnosed later in life than 18. my mom worked with a neurologist and was able to get me in for a sleep study because she was seeing a lot of narcolepsy patients with the same symptoms i was having. a lot of people with narcolepsy struggled before they were diagnosed because they were called lazy, and although my family doesn’t say those things now, i still feel really bad about myself sometimes and feel ashamed that i’m not as productive as i’d like to be. are there any ways that you’ve been able to handle or overcome these feelings? along with feelings of hopelessness- i often sit and think about how i’m afraid i’ll just be ‘too tired’ to do the things other people do (ex. having children, full time work, etc.) anybody have any advice?

Top reply
    • lizziemay

      821d

      i take 150-200 mg modafinil every day and it has basically rescued me

    • lizziemay

      821d

      i take 150-200 mg modafinil every day and it has basically rescued me

    • AliceAnn

      824d

      Feel free to reach out if you have any questions.

    • AliceAnn

      824d

      I am in charge, not my narcolepsy. It will not stop me from doing things that matter to me. Ask for help. Find the right meds. Honestly, my husband is supportive and understanding so that’s a huge help. It gets better. Sometimes it’s worse and sometimes it’s better but you’ll learn to deal with it and ask for help when you need it.

    • Waterlemon

      824d

      i haven’t had a diagnosis for long but i have tried a good amount of different options for treatment, i take adderall twice a day for EDS and imipramine for sleep paralysis, along with xywav. things have absolutely gotten better, there was a day last week that i forgot to take my second adderall and didn’t notice until the late afternoon! so that’s a happy victory lol, i just still struggle with feeling lazy etc. sometimes.

    • kayshay

      826d

      I just turned 30, and I was diagnosed at 27. My life has changed immensely since I was diagnosed and began treatments. I still deal with tiredness and fatigue, but it is soooooo much better than I ever imagined it could be. Maybe look into treatment??

    • JaebaeB04

      826d

      I’m sure you’re not it’s completely out of your control

    • Vicky2

      826d

      I feel like a failure too.

    • JaebaeB04

      827d

      The feeling of being lazy never changed for me personally it stands as a constant reminder of how much of a failure I am I can’t get my sleeping schedule together or do anything without falling asleep i missed all of school this year due to this and some other problems and I have to repeat it I can’t even express emotions correctly because of cataplexy attacks so I’m at an all time low but I hope it gets better for you

    • Vicky2

      827d

      I am turning 40 in 6 months and I have chosen not to have kids because of being tired. Also, I haven’t worked full time in 10 years. It was killing me back then. The best advice I can give is to only make plans once or maybe twice a week and then sleep the rest of the time. For me, this disease has gotten worse as I’ve gotten older. I have tried stimulants, but none have really helped enough for a “normal” life. I am sorry that you have to deal with this too ☹️

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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