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  • Who else has dealt with Covid?

    Posted by susana-m on June 13, 2024 at 6:01 pm

    I was a week from getting the vaccine when my HHA brought plague to our home. That was February 2021 and we haven’t felt the same since.

    We didn’t need to go to the hospital and it’s not long-haul Covid but it has affected a lot of things. More tired, short of breath and tolerate the heat a lot less than before. That’s a problem in sunny south Florida.

    As if we didn’t have enough on our plates with SMA.

    When I’ve asked the doctors, I get the same response: we don’t know how it affects SMA patients, we don’t have enough data. So what’s your experience?

    alyssa-silva replied 1 month ago 3 Members · 8 Replies
  • 8 Replies
  • deann-r

    Member
    June 14, 2024 at 10:16 am

    My caregiver brought me Covid shortly before the vaccine came out. Around Thanksgiving 2020. Thankfully it was a mild case with cold like symptoms that I managed to fight off with my usual sick protocol. No long-Covid either. Honestly I haven’t had a cold since which makes me happy but nervous at the same time. I’ve had some bouts of vertigo that I’ve never dealt with before. I can’t link it specifically to Covid though.

    Lately I don’t tolerate the heat and sun as well as I used to. Sad because I used to relish hot summer days. Not sure if that’s from Covid, switching treatments or just getting older. Air quality issues probably don’t help. I make sure my umbrella is up and I can stay hydrated. On poor air quality days I stay in. Are there steps you can take to mitigate your symptoms?

    • alyssa-silva

      Member
      June 14, 2024 at 5:00 pm

      Not to change the subject, but you know I’m the vertigo queen. Have you gotten that checked out before? Happy to answer any questions you may have. I’ve been living with it since 2017!

      • deann-r

        Member
        June 15, 2024 at 9:22 pm

        The vertigo is new to me over this year. I was hoping it was a one time time thing, but it’s happened a handful of times. So far I haven’t figured out what’s triggering it. So far lying down helps but sometimes not an option. I’ll mention it at my next appointment but it’ll either go nowhere or lead to more tests. Is there anything in particular that brings you relief?

  • alyssa-silva

    Member
    June 14, 2024 at 5:09 pm

    I’m sorry to hear this. I haven’t had Covid, so I can’t speak to these symptoms or answer your questions. But have your doctors checked your respiratory function and CO2 levels? I’ve been heat intolerant for years now. But I agree. That’s a serious problem to have in Florida.

    Also, do albuterol nebulizers help with the shortness of breath?

  • susana-m

    Member
    June 14, 2024 at 8:42 pm

    Residual Covid symptoms can be really subtle, the kind that are often mistaken for normal aging. Or a reaction to global warming, or maybe it’s that our cities have more concrete and are actually hotter. (Was going to include menopause, but there is nothing subtle about that process)

    Been well hydrated which helps more than I expected. My O2 levels are always in the high 90s but haven’t checked my CO2.

    There comes a point where I’m just over checking one more health issue, you know?

    What helps the vertigo?

    • deann-r

      Member
      June 15, 2024 at 9:36 pm

      Yeah it’s definitely hard to pinpoint what’s from what. I don’t even want to consider the “m” word. I always thought hot flashes would be welcome since I’m such a freeze baby but maybe not.

      It’s tough to know what to get checked out. How do you make the call?

    • alyssa-silva

      Member
      June 18, 2024 at 9:30 am

      Vertigo is difficult to treat. Add SMA to the mix, and you have a pickle. If vertigo is caused by loose crystals in your ears, then there are maneuvers you can do to put the crystals back into place. I’ve done them before. Because I’m very petite, my mom was able to throw me into the positions (i.e., upside down hanging, face first to the floor, etc). The trick was to basically induce vertigo by quickly tossing me into different positions. I don’t know how someone with SMA and of average size could do that. It was difficult for my mom to handle me, and I’m super lightweight.

      But if it isn’t crystals, maneuvers won’t help. Of course, I’ve had both kinds of vertigo. Now, mine is chronic and labeled as vestibular migraines. At my last appointment, my ENT (whose specialty is vertigo) said they’re finding a combination of Aleve and magnesium is treating vestibular migraines. I haven’t tried it yet, but my mom, who also has this problem, tried taking Aleve a few days in a row and said it helped her vertigo tremendously. This was without magnesium too. I don’t know if you could take Aleve, but it might be worth discussing it with your doctor. I’m going back to the ENT on Monday to talk to him about it.

  • susana-m

    Member
    June 17, 2024 at 6:37 pm

    What is the biggest problem in front of me? Which health challenge is it interfering with the things I want to do?

    I’ve made a conscious effort to start addressing all the baseline things that have to be addressed with normal aging but the reality is you’ve got to address the thing that’s gonna make the biggest difference.

    And, for the record, menopause is not just a few hot flashes. Not one of the older women in my life ever warned me about the reality. A hot flash actually means that you’re head to toe sweating in under a minute, a good nights sleep is rare, you’ve no idea why you’re in this room, put your car keys in the refrigerator, your eyesight can be fuzzy for two hours and then return right back to normal, some get blinding headaches that leave no trace. There are doctors still deluding themselves that hormones do not affect every single part of your body. This is what happens when the majority of medical research was originally based on white men, they never included the fluctuations of woman’s hormonal cycle. Good times ahead!

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