Covid Booster Question

[AngieP]

Hi there, I'm based in Sydney where the Omicron variant is currently spreading rapidly. I've had two shots of the Pfizer vaccine (the last one just over 4 months ago) and I'm now eligible for a booster shot.

My POTS is well managed with the help of Metoprolol, but after the first Pfizer vaccine I had a mild adrenaline surge several hours after the shot, which woke me at 2am. Then, after the second Pfizer vaccine, I had a huge POTS attack approximately 48 hours after getting the jab. This attack lasted much longer than usual attacks and was particularly bad.

I want to get the booster for protection but I'm feeling very anxious. Has anyone experienced an adrenaline surge/POTS attack after the vaccine? Do you feel this is quite normal given the vaccine is activating the immune system?

Thanks in advance for sharing your experience/advice with me.

[MomtoGiuliana]

I had no increased POTS symptoms after Moderna, including the booster.  I did have arm pain, particularly after the first shot.  After the second I was bedridden with severe fatigue, fever of 101 and muscle and joint aches for about a day.  My reaction was less significant to the booster (temp not as elevated, not as severely fatigued), but I still wasn't up to going to work that day.

I think it probably isn't unexpected to have increased POTS symptoms with a fever etc .

[Jyoti]

Hi @AngieP.  It is a dilemma.....  I had pretty bad flares after my first Pfizer and my booster.  In fact, I am still dealing with the fallout of the booster, which I had on November 1.  It is not overwhelming anymore, but the impact is not over altogether.  Which is a huge thing to go out and actually ASK for---please put this stuff in my arm that well may make me really sick for quite a while.

The one thing that helped me decide to go ahead and do it (and to not regret having done it now) is the preponderance of advice from POTS and ME/CFS specialists (including my own neurologist) who all said---the vaccine may have side effects, but they will be dwarfed by what COVID will do to you.  Get vaccinated! 

I also looked at many posts in many places by people with dysautonomia nd ME who had either been vaccinated or had COVID and what I saw convinced me to go ahead with the booster.  If you do get it, consider looking at Nancy Klimas' advice for pre- and post-vaccination supplements.  My cardiologist also recommended that I try to drink significantly more water than I usually do, which is already a lot, on the day of.  I did all of that that for my second dose and did not have much of a reaction at all.

Check this out if you haven't already: https://www.nova.edu/nim/To-Vaccinate-or-Not-with-MECFS.html   Maybe it will help.  Whatever you decide, I wish you good luck!

[Yhoun]

I had fatigue for a day after the first shot,  a night of bad chills after the second shot, and then fatigue and all-over yucky-feeling after the third shot (lasted about a week). It stunk. But I got COVID (almost certainly omicron) about two weeks after I got the booster, and I was glad that at least I knew that I was as protected as I could be. COVID for me came with A LOT of adrenaline surges, though the vaccines didn’t. 

[edriscoll]

@AngieP Hello Angie, thank you for posting your question and for everyone who has been participating in this and other threads about this subject.  It can be very confusing and can be a difficult decision to make for many people.

My personal experience was a very mild reaction.  My first Pfizer dose caused a great deal of fatigue, headache with no arm pain at all.  I felt that way for about 2 days, then fine afterwards.  My 2nd dose caused severe arm pain and a fairly nasty headache that lasted a day or so.  I did follow with an increase of dizziness and I was more tachy than usual.  The booster had no side effects at all.

It is always advisable to consult your PCP or the specialist that treats you for dysautonomia before making a decision about any new medication or treatments.  However, the official view of dysautonomia specialists mirrors that of Jyoti's doctors - there may be side effects but they will dwarf what the COVID virus can do to you.  If you haven't yet watched the video by Dr. Blitshteyn (Director of the Dysautonomia Clinic, a leading dysautonomia researcher and specialist and medical advisor to DINET) about COVID, she gives a very clear overview of why it is so vital to be vaccinated.

As a representative of DINET, I sought out the counsel of several leading physicians just this week to discuss the Omicron variant and the current spike.  My question was this - "Our local hospital is reporting 60% of severe illness in people who are not vaccinated.  That leaves 40% of patients with severe illness as people who are vaccinated.  Does this mean that vaccines are no longer working and are not as important now?"   Here are the facts.

Omicron is getting a lot of press right now because it is highly contagious and because it is causing record numbers of positive cases.  However, it is important to remember that Delta is still a threat and that alone should lead people who are not vaccinated to get vaccinated (and boostered) as soon as possible. The major difference between Delta and Omicron is that Delta directly attacks the respiratory system and multiplies quickly. Omicron attacks the throat, upper bronchials and sinuses.  This had led many people into believing that Omicron poses a similar threat as the common cold when it comes to causing severe illness.  This is not at all true.  Omicron clearly can and does cause serious illness in some people as is evident in the current numbers of hospitalized people.  Last check, the common cold does not cause this type of spike in hospitalizations.  The other difference between Omicron and Delta is that the current vaccinations with booster - is highly effective in preventing the Delta variant.  The vaccines are not as effective in preventing Omicron.  Mainly because Omicron was not in existence when the vaccines were developed.  Without going into the scientific explanations for how vaccines work and how variants come to be, lets just sum it up by saying that until we have the majority of the population vaccinated, we will continue to see variants that can breakthrough whatever the current vaccine is, most probably.

So the next part of the question is why get vaccinated then?  Here is the truth, most important, the Delta variant is still alive and out there and without a vaccine, Delta causes severe illness and death.  That's the bottom line.  The next important fact is that although Omicron is breaking through the vaccine, particularly in people who have not yet been boostered, the fact remains that vaccinated people are showing less severe illness when they are infected.  And the contagion rate being as high as it is with Omicron means that if you are walking down the street with 4 people, chances are high that at least one of them has COVID.  The reason that needs to factor in to your decision about vaccines is to remember how this all works - viral load and exposure.  So with the vaccine you should develop antibodies to the virus.  These antibodies give you protection.  However when the numbers of people with the virus starts to climb as high as it is now, that means that even your antibodies can be outnumbered by the amount of viral load you are exposed to.  Which also explains why it is so very important to continue to wear a good mask (N95 or KN95 if possible or double mask) and avoid being in public places where you can maintain a distance from people and wash your hands.  Personally, as a high risk person as a result of a heart and pulmonary disorder, I have been advised to go back to my pre-vaccination rules by my doctor - avoid public places, have family and friends wear a mask and remain outdoors or in our garage OR rapid testing before entering our home - at least for the next 6 - 8 weeks until the numbers start to recede.  Again, the idea being waiting until the overall viral load is diminished in the community.

Lastly, even though Omicron doesn't cause the rapid health decline and severe illness as quickly as Delta does, it still carries a great deal of risk.  COVID of any variant can cause post-COVID pneumonia, inflammatory illness and a whole host of delayed illness.  This is especially true for the illnesses we are now seeing in our kids.  COVID is a virus that has long lasting effects for many people.  And many of those effects are related to auto-immune responses.  Given that many of us in the dysautonomia community have auto-immune disorders, many more have other pre-existing conditions and all of us struggle with a wide variety of symptoms and health issues on our best days, it only seems prudent to do whatever we can to prevent additional illness.  It is also why the medical community is telling us that regardless of any possible increase in POTS symptoms or other post vaccine symptoms, it is still considered the best choice to make. That's why the official word on behalf of DINET is to get vaccinated as long as there is no specific recommendation against it from your doctors.  Please watch Dr. Blitshteyn's video about COVID and learn more about how it can effect dysautonomia patients.  https://www.youtube.com/watch?v=JI_c95dvg0w

I know this is a long post, but I want everyone to be able to hear the science behind our decision to recommend vaccination regardless of possible side effects unless specifically advised against it by your personal physician.

All the best.  

 

[AngieP]

Thank you for taking the time to share your experiences and advice with me. I can't tell you how much this has helped to ease my anxiety over getting my booster. 

@Jyoti- yes it is daunting knowing the jab will likely cause a flare up, but you're right, I'm sure the impact of Covid will be much worse.

@edriscoll - I really appreciate this detailed information, particularly the facts regarding Omicron and the reminder that Delta is still circulating. 

I'm off to get my booster tomorrow!

[yogini]

I  am glad you decided to get the booster because once any short term symptoms are over you will have long term peace of mind.  I know several people who were extremely careful and don’t even know how they contracted omicron. For some reason the booster was much easier for me than the first two shots. Just a sore arm.  It is only a half dose, maybe that’s why.  Let us know how yours goes.

[akj]

My sincere thanks to all who participate in Dinet, sharing their experiences,  researched information, and excellent hyperlinks. It has been a life line for me.  I would have been much better prepared if I had checked this source before my 3rd booster.

Sunday, at 3 pm, Sept 29 I had my Omicron booster shot.  Monday morning did not feel great but no worse than first COVID‐19 shots and boosters.  At 1 pm. I was unable to walk straight, lost the ability to stand, and began vomiting.  Was admitted to our closest hospital.  The first assessment was a stroke.  The hospital was very thorough with testing and evaluation.  They concluded that the most serious was the finding that my K and Mg electrolytes were extremely extremely low which was corrected with an IV solutions over two days..  
 

I was released Tuesday afternoon, but with a distressing flare up of my orthostatic intolerance.  I had been proud of my management of my Dysautonomia with lots of fluid, electrolyte products, small meals, regular exercise, and careful good food consumption and lots of patience with a loss of an active competitive life style.  
 

But  this really set me back to my first days of being diagnosed.

I believe that vaccines are important and would probably make the same choice to have the booster.  I do wish I had checked this site and read the suggested hyperlink and I may have been more prepared. 

 

 

 

[akj]

Thank you, Dysautonomia Matt.  Your kind response is appreciated.

[Jyoti]

@akj--repeating what @DysautonmiaMattexpressed.  I am glad it was just very low electrolytes, but that is scary!  We just do not know how our bodies are going to react.....  

I had the bivalent booster--Pfizer--three weeks ago and ....absolutely nothing but a sore arm.  It was my fourth and the other three had varying levels of impact, but none was easy or without setbacks.  This one was.  

So...just wishing the same to anyone and everyone else who goes for it.

[MomtoGiuliana]

Glad you are OK.

I had the bivalent booster three weeks ago as well (Moderna) and felt a bit poorly with a sore arm for about a day, but my reaction was milder than the reactions I had to previous COVID boosters/shots.  I agree Jyoti, hope that everyone who decides to get this most recent booster does just fine with it.

[Sushi]

I had the Moderna bivalent booster a few weeks ago. I had about two days of high fever and extreme chills but then by the third day felt relatively normal with the help of Tylenol. Looking back I was more tired for about two weeks after the booster but then returned to my baseline. I had previously taken only Pfizer. I hope everyone recovers well from what ever reactions they get from the boosters.

[akj]

In our Dysautonomia community how has this season ‘s flu shot gone for people?  Flare ups or all OK?  Next vaccine I must decide on and a little less courageous after my particular reaction to 3rd COVID booster.  Thank you.

[mlardiere]

This thread is so helpful. I've been hesitant to get the bivalent booster because after my second shot of the initial series ( I got Pfizer) I had a severe reaction that lasted for a few weeks and was my most intense reaction. I had no reaction to the first shot but the second scared me enough to not get the initial booster. I had covid in the meantime but know that I need more antibodies. Has anyone had more success with the Moderna bivalent booster after having the Pfizer previously? I wonder if that will affect my body differently.  Just curious, I hope everyone has a good experience with their vaccines!

[MTRJ75]

On 10/28/2022 at 9:19 AM, mlardiere said:

This thread is so helpful. I've been hesitant to get the bivalent booster because after my second shot of the initial series ( I got Pfizer) I had a severe reaction that lasted for a few weeks and was my most intense reaction. I had no reaction to the first shot but the second scared me enough to not get the initial booster. I had covid in the meantime but know that I need more antibodies. Has anyone had more success with the Moderna bivalent booster after having the Pfizer previously? I wonder if that will affect my body differently.  Just curious, I hope everyone has a good experience with their vaccines!

I was in the same boat after my initial Moderna booster (2nd shot overall). I did not have a good month afterward and never did go for the 3rd shot. I do see above a response from a few weeks ago that at least someone did have a better reaction to the 3rd shot than their second, so that's encouraging. As of yet, my doctors, who usually do push vaccinations, aren't as adamant about this one. I'm basically waiting to be sure there's one that covers a large ground instead of getting boosted, potentially flaring up and having the shot version be obsolete soon after. 

[joe7065]

Hello. Glad I found this post as I was going to ask this question. Good info here. Wondering if anyone here has my scenario. I had the pfizer shots initially, April and May of 2021. Then on August 15th the fatigue came on. Got diagnosed with Autonomic Dysfunction at the end of Sept. Then in January of 2022 I got Covid. Mild case thankfully and very thankfully it did not make the AD any worse. So, I have not had any Covid vaccine since the AD came on. On the fence about getting a booster, of which I have not gotten any. 

Anyone here with a similar experience? I know everyone reacts differently I am just nervous as we all are as to not make anything worse long term.

Has anyone had symptoms caused by the vaccine not eventually resolve?

Thanks for any info.

Joe