POTS patients- vaccine or no vaccine?
Hello, I have been advised that those of us with POTS can have autoimmune reactions to the COVID vaccines. Needless to say, after several years striking a tenuous health balance, I'm not anxious to an develop autoimmune condition / reaction. Does anyone with POTS who had either COVID or one of the vaccines care to comment about their experiences? Thank you in advance!
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Sorry, I misunderstood your concern. I will look further to see if there is a way to tease this out of the VAERS data.
Hi Ali –
I looked and I looked – and I failed. There is no way to tease that information out of the VAERS data. People could self-report pre-existing conditions when getting the vaccine or making a VAERS report, but it is not required in VAERS. I am not sure where to direct you next, although your cardiologist might have access to current information in their medical journals.
So sweet of you, thanks Sue, I did the same thing and also found this. The lack of verifiable data is frustrating.
Ali – I was teaching someone else to use the VAERS reports, and I found the information you were seeking. Accuracy depends on how thorough people reporting a reaction were in reporting their history and current medical conditions, but here is what I found:
Current POTS reported: 66 VAERS Events, 69 to ER, 33 Hospitalized, 4 deaths.
History of POTS: 610 VAERS Events, 148 to ER, 29 Hospitalized. No deaths. Only one reported recurrence of POTS symptoms.
The range of symptoms reported looked much like the usual ones in VAERS. There may be overlap – eg, went to ER, then admitted to hospital.
I hope this helps you with your decision-making
Hello – I have ulcerative colitis, fibromyalgia, degenerative disc disease, Reynaud's…I got the first Pfizer dose in late February and I had a very high fever by the next morning and began experience my first POTs symptoms immediately thereafter. POTs symptoms continued. I had my second dose as appropriate in late March. POTs symptoms continued and got worse. After seeing my PCP and a cardiologist who both dx my with syncope, I went to the Cleveland Clinic Foundation and was diagnosed with POTs on June 16, 2021. The vaccine put me directly into a POTs, but perhaps I had POTs previously and it exacerbated my symptoms or I had COVID and did not know it and I developed POTs as others with COVID have experienced. I tell you this not to deter you from getting the vaccine, but to advise you to work closely with your doctors before deciding. Of course, it's been awhile since your post, so perhaps this information is too late.
5 days after I received the moderna vaccine I developed POTS symptoms. I was very sick for about 4 months. I now am ok diltiazem and that lowers my pulse and my breathing has normalized.. I will not get a third booster dose
I’ve had POTS for years. I got the vaccine and since have been diagnosed with small fiber neuropathy. Probably had it for years but no dx. No other problems since Pfizer vaccine in March if 2021.
One week after my first Moderna vaccine I developed POTS symptoms. I became very ill and no success in controlling the symptoms until the cardiologist at Mayo diagnosed me with POTS and instructed me on the changes I needed to make to get the symptoms to subside. I have only had 1 brief flare up. I will not be getting any further booster shots
My daughter and I both have autoimmune conditions: I have lupus. I had virtually no reaction to the first shot, and had fever and aches with the third, but no secondary autoimmune flare. I did have costochondritis for a few hours, an inflammation of connective tissue between the ribs, the last day, which may have been autoimmune. My daughter had dizziness with first and second, in a delayed reaction that was probably inflammatory, but was okay with the third. No significant lasting flares for either of us. We avoided Moderna which has 100mcg of mRNA for shots 1 and 2, while Pizer had 30. Side effects and immune reactivity would naturally be worse with Moderna. Third shot of Moderna is 50mcg. (I also still get the lower dose of flu shot due to fear of inflammatory reaction to the larger dose for us older folks.) I suggest that any of us with these issues consider sticking with Pfizer.
Hi there! I am new to the site. I had Covid 19 in January 2022. I started experiencing upper abdominal pain, gas, bloating, rapid heart rate about 2 weeks later. My heart rate had always been normal. I am a 57 year old female who just prior to Covid walked 18 miles per week and swam 4 -8 hours per week. My GP put me on Oomneprazole(sp?). No help. February 2022?heart rate still increases. GI problems continue. Gastroenterologist thought it was my gallbladder. I did have stones. March 2022 Gallbladder removed, heart rate increasing, still have GI issues. April 2022 kidney stones removed. No help with heart rate and GI. Have now been on Pantoprazole, rabiprazole(sp). Gastro says I am constipated(I am not) says I have IBS. Have been put on Linzess, Trulance, and others. No relief. Gastro finally calls me and says I have a pulled stomach muscle.(no I don’t). During these months I have had a Colonoscopy, Endoscopy, CT scans bloodwork, urinalysis, etc..Motegrity did not help nor did Nortriptyline. July I visited my cardiologist, she ran Nuclear Stress test, normal, I wore a 24 hr heart monitor and my heart rate was as high as 165 at one point! Beta Blockers were discussed but concern it would drop my blood pressure that was normal. Early July I started experiencing dizziness, wooziness when I got up to let the dog out. By midday I did not have these symptoms. End of July I have a torn labrum repaired. In bed for 5 weeks. End of August, went to ER with continuing upper GI problems. They said I have a UTI and discharged me with an antibiotic. I have now been in bed for about 8 months except for going to the Dr. 5 days latter I try to get to my car to drive to a dr appt and I pass out in the garage for 9 minutes. I have now lost 18 pounds since January. It hurts too bad to eat/drink. Latter that evening I try again to get out of bed and my heart went crazy! Called 911. The ER admitted me for severe dehydration and 24 hr observation. After 20 hours I was not able to go from lying, sitting, standing. HR 165 at peak. Cardiologist came in and looked me over. Came back the next day and said I might have POTS. Went to an electrophysiologist who confirmed I have POTS and said it is directly related to my GI problems which were definitely a result of the Covid 19 virus. He put me on 50 mg 2 times per day of Metoprolol and .1mg of fludrocortisone. My POTS is getting controllable. My GI issues continue. On my third ER visit for another severe POTS episode, the ER doctor did give me a prescription for Metoclopramide(GI drug..among other things). He prescribed 20 pills 4 x daily for 5 days. I took it and felt better GI wise than I had since January. Calked my Gastroenterologist for more and he does not like to use it long term. Can cause muscle twitching etc. permanently. So he has offered to write me a prescription for Domperidone – available out of Canada. He did suggest I speak with my cardiologist first(because of possible side effects). However, my internet research shows this is also a drug that should be used short term because of the same side effects, permanent muscle twitching, etc..
I apologize for the long post. I hope someone has some ideas/thoughts on my conditions. I tried to get into UTSW- SW Dallas. As of mid July, they cant see me till late August 2023. The Mayo clinic said they can’t see me. Who can help??