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Anyone have medical input on mRNA Covid vaccines and Dysautonomia


Sushi

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To "get the vaccine or not" is a question that many of us will have to face. I was wondering if anyone who sees an autonomic specialist has raised this question with their doctor? Since this is a brand new type of vaccine we can't really extrapolate from our experiences with conventional vaccines. Thoughts?

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@Sushi - I do have thoughts, although not sure if they are backed up scientifically. I do not get the Flu vaccine for a simple reason: the ( desired ) immune reaction that occurs following the Flu shot triggers my POTS symptoms. I am very sensitive to histamine and other immuno-active substances ( due to their vaso-active reaction ) and it sends me for a tailspin, at least that is how I have explained it to myself. ( I also get flares from seasonal allergies and insect bites ). 

However - when it some to COVID I will take the shot. Getting the Flu makes me sick and I will have to recondition afterwards, usually takes me about 4 - 5 weeks to get back to being able to exercise at all. With COVID the risk of getting severely ill is so much greater, and the resulting bedrest etc will set me back so far that I am afraid of going full blown into collapse ( with me meaning inability to get out of bed at all or I take seizures and other times faint ). Needless to say I take the risk of having a "regular" flare from the shot versus many months of h*** from COVID. 

I am not at all anxious about getting COVID, since where I live there are very few cases and we live very remote. But if I have the chance to be able to avoid it with a shot I will do so, it will certainly ease any concerns at all. 

 

 

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Yes I have decided I will have it . We live in rural area , the first wave we had very few cases but even after a lockdown cases have surged here in our part of Wales . Chest infections /colds often result in me being sent to hospital to be put on a nebuliser and flares my symptoms for months , like Pistol really don’t want to go back to being bed bound . 

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I don't get flu vaccines. I haven't had one in 30 years. The last one made I had me sick for six weeks after. I will get a covid vaccine but only if Dr Fauci says its safe and effective. I do live in an area where it's high risk and getting worse. I'm not sure how many "regular people" have access to the best treatments right now and I think my chances of making it if I got it would be slim without heroic treatment. The best are the monoclonal antibody cocktails but they will never have enough of that for regular people. It's just not possible. 

Hoping for a vaccine and a better spring.

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I get any and every vaccine.  I will be getting the shingles vaccine soon due to my age.  I have never had an adverse reaction and to/for me the small risk of an adverse reaction is preferable to getting sick.  When I do get sick, even with a bad cold, I get a POTS flare up that lingers for weeks.  With COVID, there are just too many unknowns about long term problems, not to mention short term complications.  If Dr. Fauci gets the vaccine, I am getting it too.

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I'm having it as well although I don't get the flu jab as I'm largely housebound and my family all get the jab so the chances of me getting flu are small.  Considering Covid can trigger POTS in previously healthy patients I dread to think what sort of a flare it could create in someone who already has dysautonomia.  As I don't get the flu jab and I am under 50 I probably won't get access to the Covid jab for a long time and will have a chance to see what reactions people are having to it before I take it.

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I get the flu shot every year, and it always causes a flare. However, it is worth it for me to possibly prevent getting sick with the flu, which sets me back for a minimum of three months. I find I catch every germ that is going around and always get very sick. Ultimately, the decision on whether to get the vaccine will be made by my doctor.

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  • 2 months later...

I also get the flu shot every year without a reaction. However I got the first of the two Covid vaccines and it has left me extremely exhausted. 
I don’t think there’s a choice but I’m worried about a severe flare from it has Covid itself has been associated with chronic fatigue.

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@Mady - I am glad you got the shot and the fatigue is probably from the immune involvement, which can flare POTS badly. Hang in there and remember to exercise gently, despite the fatigue, to avoid worsening orthostatic intolerance. I know this is hard but do it anyway! Best wishes! 🧡

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I'm not sure about the mRNA aspect of the Moderna shot. It seems concerning that it destroys this protein. How are we to know that this protein is ALWAYS bad? Do the viral mutations make the same protein? We work differently. How do we know this won't be a problem for us? Down here it seems everyone is getting the Pfizer shot so it may not be an issue for me.

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