MTRJ75

Unfortunate that you're dealing with this. This type of thing is something a lot of us deal with regularly, so if you're asking if the vaccines have caused worse flare ups than usual, I believe there may be a thread around here for vaccine experiences somewhere. I don't think you'll find anyone here (yet) that went from healthy to POTS only due to the vaccine. Really hoping this isn't starting a trend or we might see more like yourself in the future. What most of us already here are looking for is if the vaccine is causing our already existing POTS to flare up. There doesn't seem to be a universal answer so far. I've seen people I thought to be perfectly healthy struggle with the vaccine, but also have read several stories of people who I'd expect might have issues and didn't at all.

Okay, so it's basically what it sounds like. Thought the word yoga in front of it might mean something fancier. Used to do a lot of stretching like that back when I was able to work out. Still try to, but it's not always easy. Makes sense that stretching yourself out like that might move along the gas easier.

Nice! I certainly feel the digestive component. I've had some of my tachycardia attacks with PVCs come on when I've been a bit active during the day and then eat carbs or something very hot like soup. Unfortunately, the warning signs are the PVCs and I'm already up to 130 by the time I notice. What's a yoga twist though?

I've always felt it was a small victory when I could get the ER personnel to acknowledge there was an actual physical condition, even if they had no idea how to treat it (which is always the case in my community ER). I was once told by an ER doctor that 98% of the time, it's just anxiety (after offering xanax and a psychiatric referral). I asked him what happens when the other 2% show up? He never came back into the room.

Weakness in the sense that I feel like I'm wearing clothes that weight 100 pounds with such an incredible ache it becomes very difficult to even lift my arms. But yes, this is a frequent symptom that comes with exhaustion.

Can't find the thread where I know there was a discussion on this, but DI just tweeted this study: Frustrating because the insurance co. just denied my cardiologist's request. I wonder if I can use this study to make a difference with them.

Actually, I think some of it is related to Sjogren's. Doctors rarely connect dots between bodily systems. In fact, they may not even be legally allowed to. That's usually left up to the patients unfortunately. Specialists will generally only treat specific symptoms as if they are isolated. If I waited for them to connect the dots I'd still be at square one and likely in even much worse shape.

But what I meant by Merry-Go-Round was Cardiologist refers me to Gastro. Gastro refers me to ENT. ENT refers me to Allergist, who refers me back to Cardiologist with all of them shrugging their shoulders. All of them trying the same standard medications that have failed before, looking at testing that has shown nothing. I just don't have the energy for that all over again without any results. I have a sneaky suspicion that if LDN balances the nervous system, that might correct this problem too, but the neurologist is not going to accept this as a nervous system issue.

I've been allergy tested, probably around 7 years ago now, and then more specifically for mold issues more recently. Nothing actionable came up of course. You describe some of my issues with medications though @Pistol and Claritin has done nothing for me. I did take one of those Claritin red tabs that's supposed to act more quickly and had a tachycardia issue later that day. Basically, when I try to ask the doctors about this I get on the referral merry-go-round because it involves multiple systems. I'd love to be able to find someone to allow a trial of LDN.

My Post-Nasal Drip/Chronic Rhinitis has gotten so bad that I can't eat without choking or running through half a box of tissues afterward. Of course, the worse the mucus parade gets, the worse the skipped beats become, to the point where my chest is really uncomfortable for quite a while afterwards (I'm wondering if this has to do with low blood volume or pooling, despite being heavy on the salt and water). Anyway, I've tried all the popular solutions (clairitin, mucinex). Nasal sprays do very little. Unfortunately, many anti-histamines or decongestants may dehydrate/dry you out or cause palpitations themselves. Are there any answers that do neither? The whole thing is more a nuisance than anything else aside from the cardiac issues it triggers. Issue are much worse then trying to move around (guessing the mucus jolts the cardiac nerves more that way?)

I've had spiked heart rate after meals sometimes, especially hotter ones. The trapped gas thing can usually combine with bad allergies or what feel like traps of thick mucus to cause an increase in PVCs too. I certainly feel like some of my cardiac related issues are digestive related, but other than watching my diet, I haven't found a more permanent solution.

That's an odd one. Not at all as a symptom of our conditions for sure, but as a specific vaccine side effect.

I get them after most physical activity and haven't found CBD has done much for this, at least at a moderate dosage.

For what aspect?

Protocol in the bolded part may be moving the needle somewhat. I started two and a half weeks ago and feel like I may have been a bit less exhausted with fewer aches about four or five days in. After two weeks (this past Saturday), I decreased the dosage as prescribed in the article and although today has been, by far, my worst day since with extreme aching and exhaustion, I'm hoping it has more to do with the weather than anything else. I may revert to the starting dosage again for another week or two if this keeps up, but don't think the dosage (or expenses) would be viable long term.

Diet sodas are just as bad, if not worse, than regular soda. They may not make you gain the same amount of weight, but the ingredients are nearly poison. Can you transition to something like green tea instead?

I did a few infrared sauna sessions and threw up after each one. I assume it's the same reason I have major issues after showers. I think extreme changes in temp/humidity get me either way. Glad it helps you though.

I've gained nearly 40 pounds over the last year and I can directly point to starting Lexapro as the starting point. I used to be able to lose and gain weight very easily. My weight was always bouncing around. Of course, I used to be able to a lot more active too. The odd thing is that I'm not even eating that much and my diet is 90% Paleo, so I can't figure out where this weight is coming from.

Thank you @p8d Unfortunately, at $300+ with shipping, that device doesn't seem like something I could just buy and try on a whim. My mother used to work for a chiropractor (many of them in fact) and I have a home TENS unit, but I haven't been able to find ear clips that fit the unit.

That does not sound like a good time. Thank you for sharing your story and I'm sorry you've had to endure this.

I'm just hoping other people will be the guinea pigs and come back with good news. 😄 Ironically, decided to start watching the 2020 Dysautonomia Conference videos today and the first presentation is about vagus nerve manipulation. Turns out they've been turning autoimmune diseases off with this process for the last decade. Yet, we sit here and suffer the way we do without doctors or insurance companies even giving us such options. It's a bit infuriating how slowly medicine works. I understand the safety protocols, but when quality of life is so low in people, sometimes the potential rewards outweigh the risks, especially when the drug therapies currently being used have potentially damaging side and long term effects anyway.

I mentioned reading something centered on treating the Vagus nerve in another thread recently. That's from this article: https://www.faim.org/fibromyalgia-chronic-fatigue-and-multiple-chemical-sensitivities-a-unified-hypothesis And then, just today, Dysautonomia International posted this Vagus nerve study on their FB page: https://bmjopen.bmj.com/content/11/1/e038677.long?fbclid=IwAR2JiWaE7A3Ft3-SwqNGHKQzoxRN1hfYMnTqOV2tlCSaEYY7U1ibvAPIRO4 It almost sounds counter-productive when everything feels like it's going nuts inside you and the recommended treatment is further stimulation. This would be great news though...if I could find someplace that offers the treatment at a reasonable cost.

Very likely. Not something I got a chance to cover with the neuro yesterday. I had to prioritize and figured we couldn't test until after the pandemic anyway. My PCP is useless @Pistolfor this condition. I haven't even seen him in over a year. There are a few several PT facilities nearly within walking distance. Also something that will have to wait until after the pandemic though.

Vice News Tonight also had a segment on COVID long haulers last night.

I still stretch as much as possible and use these new age massagers for neck and leg muscles to keep the blood flowing, but the muscle issues (thankfully no join pain) doesn't feel like deconditioning. It's really more of the same stuff that stopped my workouts in the first place. It's very different from the aches you get after using a muscle or group of muscles you haven't used in a while. That's more of an expected soreness. This is just debilitating and occurs after such minimal activity. I think the issue with getting physical therapy for me is age. I'm probably still too young to be considered in the type of condition I am. I really could use a supervised exercise plan (though maybe not yet), where at least a trained professional can detail the reactions my body has as well.