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Hi all,

Just taking a survey to see whether all of you take the flu shot, whether your doctors recommend it non-equivocally, and how it affects you.   Even before I had dysautonomia symptoms, I would react adversely to them, and haven't actually had one since developing the dysautonomia; therefore, am a little hesitant.  I know it is silly, as the results of getting a virus on top of our existing problems would be even worse.  Thanks for any feedback.

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For me, I always take the flu shot. I have been sick with the flu while having POTS and I was really really sick. Also, it took a long time to recover. I need to add that I dont have adverse reactions other than a warm and painful spot which takes about a week to heal. Hope this helps!

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I worked in med field always got mine... Day after my flu shot in 2013... I had my first pots crash. I never did well after the flu shot but never had the flu. Fast forward two years with new allergy type reactions( mast cell) allergy test revealed allergy to egg ... So no vaccine for this girl. I think this was addressed in a newsletter last year 

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I have received both flu and pneumonia vaccines in the last few years. I did not have any adverse effects from either one. (The pneumonia was not to be vaccinated to prevent infection. It was for a vaccine challenge to check how my Ig reacted.) 

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I had the flu shot once and was dizzy for 2 weeks.  They even split the dose--gave me half the injection one week, the other half the following week (this was way before i was diagnosed with dysautonomia and thus, didn't have many signs).  I also go the pneumonia shot last year and i ended up getting cellulitis in my arm w/in 12 hours.  Not sure that had anything to do w/the dysautonomia but I decided to try it since i was unwilling to try the flu shot again.  It was more of a 'test' for me.

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  • 2 weeks later...
  • 11 months later...

I don't receive flu shot or pneumonia. Some of my Drs think I should while others think I shouldn't. Being that I have an IgA deficiency, and something autoimmune going on, So far we've decided against it, my Neuro and I. Neuro just because he's been treating me the longest. 

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I’m a bit squeamish about needles but I get the shot religiously every year.  I might have skipped a year or two but then I got the Swine Flu one summer and it went into pneumonia for 3 weeks.  I was so bad that (104 fevers) that I don’t remember much of that time.  Every year I get a bit nervous about getting the shot but I do it and I’ve never had an issue.  I have a lot of allergies so I make sure I get a latex-free one.  They also have some that are preservative free.  I take the shot because when I run fevers or have viral infections I get crazy arrhythmias.

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I have no complications, and I should not from a dead virus. I am 60, my primary takes no chances. I get told, not asked, I'm getting a flu shot and whammo it's in and over. I adore my primary and completely trust him. I have my yearly physical next month and I expect a pneumonia shot or anything else he can zap me with. I would be worried if he didn't vaccinate me regularly for everything.

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  • 2 weeks later...

perhaps it depends on your own body? And you might ask the place your getting it for  an ingredient list and do some research. I avoid getting the flu shot because my neurological symptoms feel so autoimmune driven.  They all include some ingredients that irritate the immune system intentionally so that there's sufficient antigen response to build antibody immunity. Common additives (depending on company producing it) include: 1. thimerisol - an organoMERCURY compound. There was huge public concern that this ingredient was causing neurological adverse effects for kids in the MMR vaccine, and so today, paediatric MMR vaccines generally no longer contain it.  2. Formaldehyde (for preservative - scary) 3. Aluminium (because of the huge immune response it causes). 4. Chicken Egg protein (personally I avoid eggs like the plague because of the issues they cause me - I think it's the lysosomes that are in the egg white. The white is meant to protect the yoke from infection - a beautiful thing in nature - and harmless to a normal body, but for someone like me with autoimmune problems, it's BAAAAD news. 

I don't know if I'm actually doing the right thing or not, but muddling through to try to stay on top of this illusive thing we call 'health'.

With all that being said, I do sometimes get the flu shot, because as many of you have expressed so well, influenza with dysautonomia is disaster! So, the post is not to minimise that reality. Personally, I wait a little bit into the season and see what it's like. If it's a year with lots of cases, then you can always get it (it takes 2 weeks to work well after the shot). But if it's a light year or there are other factors, you might think twice. For instance, last year people in our region were getting Influenza A, almost no Influenza B, and a lot of the people who tested positive for it had received the flu shot... so I opted not to get it. 

Good luck, great question and one I wrestle with every year

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  • 2 years later...

I don't get the flu shot, either, largely because the autonomic specialist I saw said they've actually been seeing a significant correlation between the flu vaccine and patients getting, or having a worsening, of their dysautonomia after the shot. 

I was on the fence about it, especially this year because there were so many fatalities with the flu, but after researching it (and knowing I have also had severe flares after vaccines in the past), I decided to take other preventative measures. I avoid crowded places, wear a high quality face mask, and be as healthy as possible nutritionally. I also ask friends and family to let me know if they're sick, so that we do not come into contact if they are. 

It sure is tricky, though, and as mentioned above, it seems some people are fine with the vaccine, whilst others have a severe relapse / flare which makes them bed bound. 

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