Our difficulties with current flu vaccine and dysautonomia

SOC

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I'm sharing our experience with this year's flu vaccine in case it can help anyone else.

First, so there's no confusion, I am generally in favor of killed virus vaccines. My daughter and I usually get flu shots, and years when we haven't, we've seriously regretted it.

We had this year's flu shot 10 days ago. Both my daughter and I have had some exacerbation of dysautonomia symptoms starting within 36 hrs.

I don't have serious dysautonomia symptoms, so all I noticed was a little additional fatigue and occasional mild tachycardia. Nothing that would concern me at all.

My daughter, however, has always had much more severe dysautonomia symptoms and was already on Florinef and extra potassium. Nevertheless, since the flue shot, she has had recurring bouts of dysautonomia that have caused her to leave class abruptly or miss class entirely -- a big deal for this kid. She's having near-syncope, OH/OI, nausea, and GI issues. She got compression socks. They're helping quite a bit, but not enough to ensure she's gets through all her classes two days in a row.

I'm not mentioning this to discourage anyone from getting a flu shot. I just want to let you all know that for us, at least, this year's flu shot seems to be having more than usual effect on our dysautonomia symptoms, so it might be wise to be prepared for that. I don't think I would have avoided the flu shot for my daughter if we had known this in advance, but we might have be better prepared so that her experience was less upsetting for her.
YMMV
 

Sallysblooms

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It is nice of you to voice your concern and tell what happened. I am so sorry about you and your daughter. I sure hope the Dysautonomia get better soon so at least she can stay in class and move better. I have had POTS for a year and a half. I took the flu shot for years after having two HORRID bouts of the flu.

BUT, I didn't have the shot last year or this year. I looked at the ingredients and I cannot have one of the preservatives so that makes the choice easy for me. I work hard on my immune system so that is all I will do.
 
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For what it's worth, I had a bad reaction to this year's flu vaccine. Lips and tongue swelling and asthma and wheezing. Puzzles me as I have never had an adverse reaction to the flu vaccine - either before or after the onset of FM and ME/CFS symptoms.

Anyone know if there were new or different preservatives or other components?
 

glenp

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I am not. I went by what my CFS physician recommended which was no. He gives an antiviral to take at the first sign of flu instead of getting a shot

glen
 

SOC

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This year's flu shot includes H1N1, so I suppose there could be something involved there that may be affecting us differently. We both had H1N1 last year, so I wasn't concerned about the exposure to it, but I know next to nothing about the preparation of flu vaccines. Maybe it was just a different preservative? :confused:

We've never had problems with the flu shot before, so who knows what's up with us this year.

Glenp, I wish we could rely on our doctors to give us the antiviral. Last fall, we took our daughter into the PCP 4 times in 2 weeks with her flu-like symptoms and he kept telling us it was just allergies and to "wait until it frosts". :Retro mad: We finally took her to another doctor who did a chest x-ray and found pneumonia. I didn't know you could get pneumonia from seasonal allergies. :rolleyes: By then it was too late for the antiviral. Sheesh.
 

SOC

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Quick update -- we're both doing fine, now. I don't seem to have any more issues from the flu vaccine. My daughter was still struggling a bit early this week. Now she's wearing compression socks and doubled her Florinef and potassium, she's doing okay, though.
 
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I realize different CFS doctors have differing recommendations, but I would not be able to ever take a flu shot. The adjuvants (essentially toxic substances like aluminum or thimerosal) in the vaccines can be neurotoxic and I have enough neuro problems already!
 

SOC

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I realize different CFS doctors have differing recommendations, but I would not be able to ever take a flu shot. The adjuvants (essentially toxic substances like aluminum or thimerosal) in the vaccines can be neurotoxic and I have enough neuro problems already!
It's unfortunate, isn't it, that our illness been neglected so long that there's not even enough research for there to be agreement on basic things like flu shots, even among the best CFS doctors. We got our flu shots from our CFS doctor, but I know there are others that recommend avoiding flu shots..... Sad.

I'm still glad we got our flu shots -- my daughter's roommate has been down with a stomach flu for a week or so. I'd hate to imagine where we'd be if my daughter caught that. :eek:
 

glenp

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I am glad that your daughter is doing better, this illness is so scarey, especially when we know things are not going well but the doctor does not!

I still have my tamiflu from last year - my cfs physician says to have it on hand to take at the first sign and not have to wait. I would not know the first sign - I don't think many of us do unless it is maybe bronchial or something?? I have been lucky to have doctors that give me "extra" meds just to have on hand as when we are sick many of us alone cannot make it out to the doctor.

glen
 
C

Cloud

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That must be really hard having a kid with this disease. I'm glad your both doing better.

I thought this years flu shot was a 2fer? Doesn't it have both the h1n1 & this years expected seasonal flu?

There is so much conflicting info on the safety of vaccines for us.....but for me, anything that affects my immune system sends me into a prolonged tail spin and that includes vaccines. But catching the flu will do the same...so I take my chances not vaccinating and just do my best to avoid infections.
 

SOC

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That must be really hard having a kid with this disease. I'm glad your both doing better.
It's heartbreaking. :(

I thought this years flu shot was a 2fer? Doesn't it have both the h1n1 & this years expected seasonal flu?
That's the way I understood it. Packs a bit of a punch.

There is so much conflicting info on the safety of vaccines for us.....but for me, anything that affects my immune system sends me into a prolonged tail spin and that includes vaccines. But catching the flu will do the same...so I take my chances not vaccinating and just do my best to avoid infections.
I might take that chance, too, if I were still housebound and didn't have family in high-risk for catching viruses. ;) My daughter brought H1N1 home from college last fall. My husband travels a lot. Also, if I'd had bad reactions to flu vaccines in the past, I would have been more leery.