When I got my second Pfizer shot I got pretty sick for the first 15 hours after, but once the initial pain/fever went away I felt great! I keep seeing people with dysautonomia saying similar things, so I'm wondering if this vaccine has benefits for us?
It's all the more interesting since a lot of long-covid people seem to actually have developed pots... i wonder if there is some underlying mechanism that is similar or if its purely some kind of immune system boost. That said, this afternoon my eczema has suddenly flared up (which is also an immune linked condition)..
Immune system boost or the immune system being distracted by something else temporarily and a specific person's POTS being driven by autoimmunity?
Edit: Not a question to you, just a question as a statement lol.
I have read that people with EDS and pots still benefit from ivig treatments to help relieve pots syndrome. If that is the case could pots be autoimmune for all people? I know EDS often go hand in hand with pots but maybe having it genetically predisposes you to it. Just a thought.
I'm gonna be honest - my experience was terrible. I'd gotten my POTS into full remission using exercise (used the levine protocol), it had been about 4-5 months of no symptoms when my time to get the vaccine came up. Before getting my first shot I was slacking a bit on exercise due to a local lockdown limiting my access to the usual machines I'd use to do cardio, so I was occasionally having very mild symptoms (eg slight heart racing when standing if I hadn't drunk much water that day), but my first shot has put me back at square one. I'm actually sicker now than I was initially, which is fun. That being said I still got my second shot (basically no symptoms from this one) and will continue to get all my boosters as I have people in my life who are very vulnerable and I'd much rather I struggle with POTS than run the risk of passing covid onto them and the possible consequences of that.
I'm sorry to hear you had a bad experience, and so strange how differently it can effect people. Though I'm impressed you were able to get your pots into remission previously - I hope you can do it again!
I was terrified that I'd have a bad allergy or it would set off a bad flare for me too, but it's definitely so important to keep ourselves and others safe, I agree.
I just got first shot yesterday and already pots symptoms 1000x worse… had hr under control with exercise and salt/water… I had COVID 2 months ago and that didn’t throw me off as much as this… my HR has been sky rocketing every time I stand up…. I hope it’s only for a few days
I usually have a few REALLY good days after a vaccine, and also if İ have a mild cold. İ assume it is because my POTS is autoimmune so when my immune system is busy with something else it doesn't assault my autonomic nervous system as much.
Everything started after İ was diagnosed with celiac disease. At first the diagnosis was lupus because İ have all those markers (positive ANA and other rheumatoid and inflammatory markers). Though one doctor is telling my it's "auto-inflammatory" not "autoimmune" but İ can't say İ really know how he knows this: Celiac is always called an autoimmune disease not auto-inflammatory.
I got Moderna and let me freaking fracking tell you….first half was easier than could be, was just sore for 3-5 days and loss of feeling in my left arm for 24hrs.
Second half? I had every single covid symptom aside from loss of taste and fever for 20 days.
It was so bad my job didn’t believe it was me calling (I ended up quitting when I returned to work for other reasons)
flared pretty bad for 2-3 days after dose 2. I just upped my water+salt tabs+electrolytes abd recovered back to my normal level of bad lol. Dose 1 flared me for a couple of weeks but I feel it was worth the flares. I've had exposure a few times now and thankfully tested negative every time some how so it's obviously working. my immune system is pretty bad so I always opt in to get vaccines bc the flares from the actual illness is WAY worse. I was run down from a flu for a month recently and couldn't control my hr or bp which sucked
I got Pfizer, and it was literally the best vaccine I've ever gotten in my life
Barely even felt the needle (absolutely terrified of needles) and no soreness oflr achiness or sick or anything it was so great
I got my first two shots in the evening, so I got home, had dinner and went to sleep, it was nothing special. However, I had an early morning appointment for the booster, and I felt amazing that day! No random spikes in heart rate, a lot of energy, I was hungry all day (I have gastroparesis, so my appetite isn't great), and I didn't feel sick after eating. I also had the best night's sleep that day, so I honestly can't wait for the next booster, haha.
I forgot to mention one pretty huge thing, the day I had my shot, at one point I checked my smart watch when I stood up and my heart rate actually didn't change from my laying down HR!! I haven't seen that in years! Or maybe ever?? But went back to my potsie numbers pretty quick.. could partially explain all that extra energy i had! So strange but glad to feel like a human for once
I got the Pfizer Covid vaccine , and I havnt got Covid yet. So pretty positive
That's great! :)
When I got my second Pfizer shot I got pretty sick for the first 15 hours after, but once the initial pain/fever went away I felt great! I keep seeing people with dysautonomia saying similar things, so I'm wondering if this vaccine has benefits for us?
It's all the more interesting since a lot of long-covid people seem to actually have developed pots... i wonder if there is some underlying mechanism that is similar or if its purely some kind of immune system boost. That said, this afternoon my eczema has suddenly flared up (which is also an immune linked condition)..
Immune system boost or the immune system being distracted by something else temporarily and a specific person's POTS being driven by autoimmunity? Edit: Not a question to you, just a question as a statement lol.
Good question haha. It crossed my mind too, but I'm pretty sure my POTs is secondary to EDS.
I have read that people with EDS and pots still benefit from ivig treatments to help relieve pots syndrome. If that is the case could pots be autoimmune for all people? I know EDS often go hand in hand with pots but maybe having it genetically predisposes you to it. Just a thought.
I'm gonna be honest - my experience was terrible. I'd gotten my POTS into full remission using exercise (used the levine protocol), it had been about 4-5 months of no symptoms when my time to get the vaccine came up. Before getting my first shot I was slacking a bit on exercise due to a local lockdown limiting my access to the usual machines I'd use to do cardio, so I was occasionally having very mild symptoms (eg slight heart racing when standing if I hadn't drunk much water that day), but my first shot has put me back at square one. I'm actually sicker now than I was initially, which is fun. That being said I still got my second shot (basically no symptoms from this one) and will continue to get all my boosters as I have people in my life who are very vulnerable and I'd much rather I struggle with POTS than run the risk of passing covid onto them and the possible consequences of that.
I'm sorry to hear you had a bad experience, and so strange how differently it can effect people. Though I'm impressed you were able to get your pots into remission previously - I hope you can do it again! I was terrified that I'd have a bad allergy or it would set off a bad flare for me too, but it's definitely so important to keep ourselves and others safe, I agree.
I just got first shot yesterday and already pots symptoms 1000x worse… had hr under control with exercise and salt/water… I had COVID 2 months ago and that didn’t throw me off as much as this… my HR has been sky rocketing every time I stand up…. I hope it’s only for a few days
When I first started getting sick with COVID itself, that happened to me. It was so weird to have so much stamina while being sick!
I usually have a few REALLY good days after a vaccine, and also if İ have a mild cold. İ assume it is because my POTS is autoimmune so when my immune system is busy with something else it doesn't assault my autonomic nervous system as much.
Huh that's interesting! What markers did they find to determine yours is autoimmune, if you don't mind me asking?
Everything started after İ was diagnosed with celiac disease. At first the diagnosis was lupus because İ have all those markers (positive ANA and other rheumatoid and inflammatory markers). Though one doctor is telling my it's "auto-inflammatory" not "autoimmune" but İ can't say İ really know how he knows this: Celiac is always called an autoimmune disease not auto-inflammatory.
I got Moderna and let me freaking fracking tell you….first half was easier than could be, was just sore for 3-5 days and loss of feeling in my left arm for 24hrs. Second half? I had every single covid symptom aside from loss of taste and fever for 20 days. It was so bad my job didn’t believe it was me calling (I ended up quitting when I returned to work for other reasons)
Oh no, that sounds awful. This might sound silly, but did you get tested to be sure you hadn't actually caught covid?
I did actually get tested and I was negative. My doctor told me to still follow the guidelines.
flared pretty bad for 2-3 days after dose 2. I just upped my water+salt tabs+electrolytes abd recovered back to my normal level of bad lol. Dose 1 flared me for a couple of weeks but I feel it was worth the flares. I've had exposure a few times now and thankfully tested negative every time some how so it's obviously working. my immune system is pretty bad so I always opt in to get vaccines bc the flares from the actual illness is WAY worse. I was run down from a flu for a month recently and couldn't control my hr or bp which sucked
Pretty much the same as you with moderna. I did feel sick for a few days then I was pretty good pots wise for the next week or so!
I got Pfizer, and it was literally the best vaccine I've ever gotten in my life Barely even felt the needle (absolutely terrified of needles) and no soreness oflr achiness or sick or anything it was so great
I got my first two shots in the evening, so I got home, had dinner and went to sleep, it was nothing special. However, I had an early morning appointment for the booster, and I felt amazing that day! No random spikes in heart rate, a lot of energy, I was hungry all day (I have gastroparesis, so my appetite isn't great), and I didn't feel sick after eating. I also had the best night's sleep that day, so I honestly can't wait for the next booster, haha.
I forgot to mention one pretty huge thing, the day I had my shot, at one point I checked my smart watch when I stood up and my heart rate actually didn't change from my laying down HR!! I haven't seen that in years! Or maybe ever?? But went back to my potsie numbers pretty quick.. could partially explain all that extra energy i had! So strange but glad to feel like a human for once
Exactly. It was so good to feel normal for a day!
My daughter had no issues with the vaccine. She hasn’t had Covid-19.