POTS and vaccines…

January 13, 2023 edit: We now know that the COVID-19 vaccine can result in POTS. There are documented instances of individuals developing POTS after receiving the vaccine. It’s possible they already had some genetic or other predisposition towards POTS – we still don’t know enough about what causes POTS – but the COVID-19 vaccine can be a trigger. If you want to learn more, see this journal article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9308031/

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Last week, Pfizer began distributing its COVID-19 vaccine in America. My city received 28,000 vaccinations for high-risk healthcare workers. Last Friday, the U.S. Food and Drug Administration (FDA) issued emergency use authorization for the Moderna vaccine, and those vaccinations are already being administered to healthcare workers. The vaccines can’t come fast enough. America now has over 300,000 deaths. We recently reported 251,000 new cases in a single day. The ICU hospital bed capacity for my region is now at 0%. A lot more people are going to die.

As the vaccines are rolled out, people with postural orthostatic tachycardia syndrome (POTS) and other preexisting health conditions will have to make the decision whether to receive the vaccine. But before we ask whether people with POTS should get the COVID-19 vaccine, we should discuss whether they should get vaccines, in general, as the answers to those questions may differ.

But first, let’s talk about whether vaccines can cause POTS.

Can you get POTS from a vaccine?

I did some research but was unable to find any reputable studies that documented cases of POTS occurring after receiving a flu vaccine. A woman tried to receive compensation under the US’s National Vaccine Injury Compensation Program, where citizens can receive compensation for injuries or illnesses caused by vaccines, for developing POTS after receiving the flu shot. The court was unable to find causation between the vaccine and the woman’s POTS condition, and compensation was denied. You can read about it here.

One study suggested the flu vaccine caused a significant reduction in heart rate variability.

There is a case of a young man developing POTS after receiving the H1N1 vaccine. You can read the report here.

Guardasil, the vaccine against HPV typically given to young women, has been the subject of a lot of controversy in the POTS community. The majority of allegations of POTS after receiving a vaccine are related to Guardasil. This article from the Journal of Investigative Medicine describes the onset of POTS and ME/CFS after the Guardasil vaccine. In this study, POTS was confirmed in a very small percentage of people who received the Guardasil vaccine –  29 out of 40,735. That’s .07%. Not even one-tenth of 1%.

So while there are reports of people developing POTS after receiving a vaccine, it’s highly unlikely.

Should someone with POTS get the flu vaccine?

Each year, millions of Americans get the flu vaccine in hopes of avoiding or limiting the symptoms of the flu. Health reports show that the flu shot (or jab, for my international friends) can cause temporary side effects, including pain, redness, or swelling at the injection site, headaches, body aches or pain, dizziness, and fever, and in rare cases can lead to anaphylaxis. Most side effects resolve on their own within a day or two, and many people do not experience any effects.

However, people with chronic illness often report adverse reactions from flu shots, including increased or new symptoms. When I was first diagnosed with POTS, my cardiologist advised against getting a flu shot, and up until this year, I have followed his advice. I rarely catch the flu, and the risks of a bad flare caused by the flu shot seemed more likely than ending up with a bad case of the flu. It was a risk I was willing to take.

I’m in less of a gambling mood this year, what with the killer virus and all, and decided to get the flu shot back in October. Up until last week, I have been back in the office since summer. I didn’t want to end up with a double whammy of a flu on top of COVID.

And on top of POTS, I guess. The Devil’s Triangle.

And on top of neuropathy. Some…really bad square.

I felt fine for the first 24 hours after the vaccine, but on day 2 or 3 I started to notice that I was dizzier, more out of breath, and had a higher resting heart rate. For the first time in a long time, I blacked out in public, but fortunately didn’t lose consciousness. It has slowly been improving since then, and I don’t have any evidence that this new flare is caused by the flu shot. This is the longest flare I have had in years. So no, as long as there’s not some new deadly COVID-21 virus next year (please, for the love of God, EVERYBODY knock on wood right now), I will not be getting another flu shot.

Whether someone with POTS should get a flu shot is best answered by determining the likelihood of catching the flu, and how devastating a case of the flu might be. Discuss it with your POTS doctor, as your regular PCP will tell you it’s perfectly safe. If you’re like me and you don’t get the flu often, it might be best to skip the shot.

Should someone with POTS get the COVID-19 vaccine?

Before the COVID-19 vaccine was developed, the record for the fastest vaccine production was the mumps vaccine, at 4 years. So the development of a COVID-19 vaccine in 11 months is not only recordbreaking, it’s a little concerning. Enough time simply hasn’t passed for us to adequately assess the long-term effects of the vaccine. So I understand the apprehension about getting the COVID-19 vaccine. I’d be lying if I said I wanted to be first in line to receive the jab.

But in this situation, during the middle of a global pandemic where over 1.5 million people have died, the question isn’t whether the vaccine will cause some side effects. Because it will. You should go into it expecting that, at the very least, you’re going to have a sore injection arm and a few mild aches and pains. The question is whether the side effects of the vaccine are worse than the virus. POTS, by itself, isn’t considered a “preexisting health condition” for purposes of COVID-19 comorbidity. But in my experience, people rarely just have POTS, and things like autoimmune conditions, asthma, and vitamin D deficiency are risk factors and could make symptoms much worse.

This isn’t like the flu shot, where the vaccine does more harm than good because I rarely get influenza. This is different. Without the vaccine, the vast majority of us will get COVID-19 eventually. That’s how herd immunity works.

Discuss it with your doctor, especially if you have a history of severe allergic reactions, before getting the vaccine.

Will the vaccine cause POTS? There’s no data on that, and at this point, it seems too early to make any conjectures about what an 11 month old vaccine will and will not cause in the long run. But if you’re looking to avoid getting POTS, here’s what we do know – COVID can cause POTS. More on that next time.

“There were grief and ruins, and you were the miracle.”
– Pablo Neruda

Do you get the flu vaccine? Do you plan to get the COVID-19 vaccine?

Smell ya later. And be safe.
– Linds