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Covid 19 Vaccine

Hello- I am 30 years old have narcolepsy with cataplexy (NT1) and I am reaching out to see if anyone with narcolepsy has received the vaccine? If you have, did it impact your narcolepsy or cataplexy in any way? I have been diagnosed for around 8 years and tried so many medicines and the only thing that works are vyvanse and adderal so I of course 1. Don’t want to make my current narcolepsy worse but also 2. I honestly can’t really afford for it to get worse given I live on stimulants to function a normal ish life. Please let me know yalls thoughts. Not trying to get political in any way. I just want to try understand if it has impacted narcos in any way. Thank you!

  1. hi I'm 31 with N2. I got my shots (pfizer) back in April and May of this year. Only thing that I experienced was a very sore arm after the first shot!

    1. Thank you! I definitely agree everyone is different but I still appreciate hearing from you as I can’t find research and I don’t expect any actual research or findings of people with N to come out for a few more years. Have you heard or seen of other people’s experiences online? Just wondering if you can help point me in a direction where I might be able to read more just to better educate myself and weigh all possibilities. Thank you!

      1. Heya! I talk to a lot of people on narcolepsy facebook groups, that's probably the best place to ask for a wider opinion, I believe! Hope you find the information you're looking for! Please share anything interesting that you find! 😀 Take care, Iris x

    2. Hi! I received the vaccine back in February and haven't had any side effects or changes in my symptoms. In fact, I've had a couple friends with narcolepsy that got covid (prior to vaccines were a thing), and had their narcolepsy symptoms worsen. I'm not a doctor or anything, but I would rather feel safe with the vaccine than to get covid and potentially have worsened symptoms. Good luck!
      Xoxo/Zzz, Gabrielle

      1. thank you for responding! I found multiple things you said to be helpful and interesting. I apologize in advance for the questions…. 1. You have multiple friends with narcolepsy?! Curious how you met them? I really haven’t met anyone with N before but I think it’s really great yall have each other. 2. Do you or any of your friends have Narcolepsy with Cataplexy? 3. When you say worsen with COVID do you mean the symptoms worsened during the time period they had COVID or continued to be worse even after? 4. What vaccine did you get? Once again, I really really appreciate you responding as I recognize this is decision I have to independently make but hearing just experiences from people who actually have N can definitely help me make a more educated or mindful decision. I haven’t had COVID but jobs are starting to mandate the vaccines and honestly part of me feels like I might feel less anxious if I get it as long as it doesn’t somehow make my symptoms worse.

      2. Sorry it took me so long to reply!

        1. Yes! My sister actually has narcolepsy. Being a genetic disorder, there are many families that have multiple people with narcolepsy. However I have many friends with narcolepsy that I met through online support groups. I would suggest googling Wake Up Narcolepsy and visiting their website to find more information about those!

        2. Most of my friends have N w/Cataplexy.

        3. One of my friends in particular (she has N/Cataplexy) got COVID in summer of 2020 (prior to vaccines), and ended up having long-covid. She dealt with COVID symptoms for many months, and her narcolepsy sort of morphed into chronic fatigue syndrome. She hasn't been very active in the support group since early last year, so I'm honestly not sure how she is doing now.

        4. I got both doses and my booster with Moderna.

        I am very happy to hear that you are considering this from all angles. I fully believe in the vaccine and that it is saving people's lives. Ultimately the decision is yours, but I would suggest talking to your doctor if you have more specific questions.

        Good luck!

    3. Heya! I have received the vaccine and luckily felt no significant side effects at all. Of course it's important to keep in mind that everyone is different and it's impossible to know how one individual will react. I know a lot of people in the narcolepsy virtual community and it really is different for everyone. I can only advise you to do what you think is best for you as I personally don't really believe that other people's experiences will ever be a good judge for anybody else's unfortunately. Hope this helped somewhat! 😀 Take care, Iris x

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