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Study on COVID vaccination and autonomic dysfunction


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Dysautonomia Int. just posted about the following study to their FB page. Essentially, a small amount of people are experiencing neurological symptoms consistent with autonomic dysfunction after vaccination. I believe I am in this group, as I was really knocked on my butt after the 2nd Moderna a year ago and have not gone for a booster. While this feels pretty validating, it's also frustrating because I want to protect myself from serious COVID complications, but certainly don't feel like I'm able to do that without just avoiding everyone now. 

Article explanation: 

https://www.news-medical.net/news/20220519/NIH-team-documents-various-types-of-neuropathy-after-COVID-vaccination.aspx?fbclid=IwAR0kdjlcEBMND7eDD6oza9uXdjIwJAdz5oH1VI_Yr0LxISBop_QAtGwWT9A

Study itself: 

https://www.medrxiv.org/content/10.1101/2022.05.16.22274439v1?fbclid=IwAR356fbHgs4iCVZp5a_THz8B9oXAvbNQ7DwF7DLJwo_DoI1gZ2IT5q1X3ck

 

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I have wondered about this as well. I did get the Pfizer vaccine first one went well but i swear all h*** broke loose 2 weeks after the second one. I am not against the vaccines and they have an important role seeing we may have to live with COVID as the new norm but i have refrained from getting a booster for now. I just don't want to add one more potential layer until i work out my current issues.  

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I was mildly and infrequently symptomatic prior to second Moderna last April.  It had started at the end of 19 with serious gastro stuff, the worst of which manifest with chest pains and lightheadedness - but I was still active.  In early 20 I suddenly couldn't eat, lost 30 lbs, and had a bit more lightheaded episodes.  The Covid hit, and testing came to a halt.  By mid 2020, I had gotten better and some tests were cancelled - Covid - who wants to go into a hospital when you're feeling better.  After Moderna II, my May 21 outdoor painting and home projects came to a halt.  By August I was searching online for answers - after the myriad other tests, e.g. EKGs, Esopho-scope, heart monitor, this, that, other.  Found Pete Rowe's one pager on POTS - lights went on.  Every doctor I mention the vaccine coincidence to - looks away - no comment - taboo.

Good luck - thanks for the post

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Just keep in mind this is one observational study of 23 subjects who developed new symptoms after the vaccine.  It seems that this study is suggesting is that more research is needed-- not proving a causation--or that this is a common result.  Keep in mind too that anything that induces an immune response could cause POTS or a POTS flare up--from what I understand--including other vaccinations.  My dr told me it has long been known that coronaviruses in particular can cause patients to develop POTS.  There does seem to be a clear risk of developing post-COVID POTS if infected.

https://www.hopkinsmedicine.org/news/articles/on-the-heels-of-covid-19-influx-of-patients-with-pots-symptoms

 

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My daughter was advised by her cardiologist not to do the vaccine. They suggested that a patient with Dysautonomia that the COVID vaccination could make things 100x worse. Due to this she lost her job as an EKG Tech. There wasn't a way around it, nor a way for her to keep her job. 

 

 

 

 

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2 hours ago, Ranchin_Around said:

My daughter was advised by her cardiologist not to do the vaccine. They suggested that a patient with Dysautonomia that the COVID vaccination could make things 100x worse. Due to this she lost her job as an EKG Tech. There wasn't a way around it, nor a way for her to keep her job. 

 

 

 

 

I had the conversation with my two cardiologists. They did seem a bit apprehensive when it came to the second one but neither had any bad reaction and they did urge to get the vaccine. My only concern is i have had soo many bad things happen after my second shot i just want to resolve them before getting my booster.

UW Health in Madison was about the only hospital in wisconsin that had a near 100% compliance for the vaccine. They did leave an out for some folks to forgo it that had health issues that depicted not getting it. I am surprised your daughter was let go.    

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You may find it helpful to watch our advisor Dr. Blitshteyn's video about COVID and how it can affect dysautonomia patients.  https://www.youtube.com/watch?v=JI_c95dvg0w

She explains the science behind our decision to recommend vaccination regardless of possible side effects unless specifically advised against it by your personal physician.

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I too suspect that my dysautonomia symptoms were brought to the forefront following my two doses of the Pfizer vaccine. Prior to being vaccinated I definitely had underlying POTS-like issues. But about 3 months after my second dose is when I started struggling with ectopics and adrenaline surges. I never struggled with them previously and suspect they are related to underlying inflammation associated with the vaccine and having covid19. I have not gotten an mRNA booster, but would be open to getting a booster with one of the more traditional vaccines if they are ever approved in the US. I have wondered if the mRNA vaccines hyper-stimulate the immune system which leads to issues in some individuals, particularly those with high levels of inflammation to start.

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This is very interesting to me.  I wonder what our POTS gurus will have to say about the big picture  in terms of COVID vaccination when it includes this information.

On 5/23/2022 at 1:51 PM, MomtoGiuliana said:

Keep in mind too that anything that induces an immune response could cause POTS or a POTS flare up--from what I understand--including other vaccinations.

I am in the midst of a flare from a cold.   Or...is it from my immune reaction to a rhinovirus?  So.....correct, I am sure.   On the other hand, I have now had flu vaccines two years running without any reaction.  But COVID (Pfizer)---not good at all.  I have written about it elsewhere and won't go into detail here, but it took me four months to get back to baseline after my booster #1.  I have not had #2 for obvious reasons, though I am eligible.

Still....I am now a long ways out from that initial booster, my immunity to COVID likely minimal again and heaven knows, I do not want to find out if getting COVID is better or worse than getting another vaccination.  I still think that the aftermath of COVID for many people is going to be really unpleasant but it certainly is a case of being between Scylla and Charybdis.  

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8 hours ago, MomtoGiuliana said:

 

You may find it helpful to watch our advisor Dr. Blitshteyn's video about COVID and how it can affect dysautonomia patients.  https://www.youtube.com/watch?v=JI_c95dvg0w

She explains the science behind our decision to recommend vaccination regardless of possible side effects unless specifically advised against it by your personal physician.

Thank you for posting this! It was very helpful. 

I was vaccinated with two shots of an mRNA vaccine and I was boosted. Then came Omicron. I had a relatively mild infection. Where I may have had some orthostatic intolerance prior to covid, I came out of the illness with debilitating symptoms and a clear diagnosis of POTS.

I am aware of my heart beating on a level I have never experienced before. But guess what, being aware of my heart beating means that I am alive. I would much rather live with this debilitating condition than not live at all. Even if I knew beforehand that POTS or worsening POTS could be a result of the vaccine I would 100% get the vaccine. Covid can kill you. This is nothing to mess around with. 

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I took a peek at this study as well. I remember when I first became symptomatic, had severe POTS and now continue to be at a livable level of Dysautonomia but continuing to search for why this happened to me. I had all of the symptoms in this study, plus some. And as was pointed out by Momtogiuliana the study only had 23 people and no control group. It makes me wonder if those 23 were just on track for dysautonomia anyway. It's one of the most unlucky things that's happened to me in my life. And I'm 100% sure if I was hit with this following a new vaccine I would 100% believe it to be vaccine related. I am in no way meaning to dismiss someone's feelings or their journey on figuring out why this happened to them.

I did get the Moderna 2 dose vaccine and 2 boosters despite being scared to death it would set me back but for me they didn't. I always love to see studies that might someday figure out why/how this happened to all of us, but I know there were plenty of folks in this forum who presented like all of the folks in the study without the vaccine.

My journey is over 10 years old and I still can't figure it out. I just returned from a little trip to Atlanta (from NJ) and I'm in bed today. Travel is so hard on my body....still.  I do consider myself 80-90% healed at times, but other times I have to take it wayyyyy down. Like today. 

I love having this group to come back to, to share stories and experiences. And hope everyday for a cure, treatment or miracle for all of us. Lots of luck to those struggling. 

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I will not get any covid vaccines.  For myself only I personally do not feel comfortable getting one. If it were to stir my system up or cause a negative reaction there is no way that I know of to undo it and something so new there are no long term studies available to know how they might affect the nervous system/POTS etc but that decision is yours made with your doctor(s).  Also there are no long term studies to know how getting Covid affects the nervous system/POTS etc either. I am not able to work and spend most of my time outdoors and at home so not around a lot of people anyway.  I react to medicines/even herbs pretty strongly to begin with. I had Delta back in Nov and it was no fun but contacted a doctor and put on ivermectin from walgreens and after 1st dose fever went away and started to feel better each day. Took a few weeks for the fatigue to go away. Covid did flare my POTS up though. 

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Agree DysautonmiaMatt. There are too many unknowns and this is not like regular vaccines with long term data behind them but involves mRNA getting cells to produce spike proteins which contrary to what the media says, don't stay in the deltoid muscle and can cause myocarditis. And even boosted people are getting omicron anyway.

I had covid in January 2020 and it wasn't a big deal (with pre-existing CFS and orthostatic intolerance/dysautonomia). I had omicron (which is quite different) recently and it was a bit long lasting because I was run down and not getting enough sleep. So a little bit worse but getting better.

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