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Scout

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  1. Just saw this now. I'm so glad you and your family are OK @Pistol! So sorry to hear you went through that, but I wish you the best for your recovery going forward.
  2. Thank you so much for this @CJ65 Very helpful! It's strange because I have no neck injuries etc that I know of, and yet I have these surges which showed up in my autonomic testing. Either very low BP, or suddenly very high BP, originating from sympathetic overdrive ("autonomic dysreflexia" is written on my file) I didn't respond well to beta-blockers, so treatment has been tricky.
  3. Hey folks, Just wondering if anyone who has hyper-POTS specifically, has had the covid vax, and how they have gone? I'm likely getting mine soon and am nervous, mainly because I am very sensitive to all medications and only need to micro-dose meds to have a full effect. Have been hearing that some people with POTS have flared quite badly after their jab (of course, I'd rather a flare than get COVID, but it's all quite tricky to navigate for those of us with pre-existing chronic illness).
  4. Good to hear you had no reaction! Thanks for the feedback.
  5. I appreciate the feedback, and am sorry you lost some friends to COVID. That is very sad. As mentioned in my post: I live somewhere where the COVID cases are very low. Nowhere near like how things are in the US or UK, for example. But with that said, I still think vaccination is absolutely important and I am pro-vax, of course. The only reason I am asking these questions is because of hearing of some people with POTS and other chronic conditions, having really bad long-term flares or allergic reactions after the vax, and not being able to function. Unfortunately vaccines do come with some risks, like all medications, and I'm simply trying to decide what's the best course of action for my situation.
  6. Hi there, Please check out Dr. Judy Spies at RPA hospital. She is only doing phone consults at the moment (I think) due to COVID, but she should be helpful for you. She is a neurologist who works at the autonomic clinic.
  7. I'm wondering if anyone here has had the COVID vax, especially people with hyper-POTS, and if so, how did you fare? I live somewhere where covid cases are currently very low, but I am still looking at getting vaccinated. I'm pro-vaccination, certainly not against it at all, but I have had bad flares in the past after other vaccines before (flu jabs etc, that sort of thing), and am just figuring out what to do. Not worried about having a minor flare that lasts for a couple of days — that, I can cope with. I'm more worried about a severe flare that lasts weeks to months, which I know can happen sometimes when it comes to POTS (but I realise a COVID flare would likely be far, far worse, compared to the flare caused by a vax). Will also be speaking to my specialist about it when I have a phone consult soon. Thank you for any feedback.
  8. Hey folks, hope everyone is managing OK over the holidays. I'm currently having a really difficult flare with my BP going high when I stand or sit upright. That had been under control for a while but seems to be happening again. I used to take beta blockers and didn't tolerate them well to say the least, so just wondering if anyone with HyperPOTS has taken alpha blockers and how that went? I definitely need a new course of action / new meds for the new year because my symptoms are just so debilitating.
  9. Thanks so much for the replies. I very thankfully tested negative. Nin, so sorry to hear you had it but glad you're OK!
  10. I'm showing symptoms and getting a test tomorrow. I live somewhere (Australia) where cases are low currently, but I just found out I was exposed (very briefly) to someone who was positive and they didn't know it at the time. Have to admit, I'm a bit nervous. I know having Dysautonomia may make us more at risk of complications. Looking for some reassurance. Please let me know if you've had it and how you went. Praying it's just sinuses or a cold that I have. Many thanks 💜
  11. Hi there, I wonder if anyone here ever has blood pressure surges when they cry or feel emotional, even just slightly. I know it's usual for BP to go up a bit when we are stressed or otherwise upset, but mine jumps up drastically into very high numbers (180/100 or higher), then goes back to low. My specialist has mentioned that this can be due to my autonomic issues (and largely, baroreflex failure issues), and how emotion can trigger an over-active response. Just wondered if anyone else with Dysautonomia experienced this and if there's anything you do to remedy it? I have medications like Diazapam (which is actually the first type of drug usually prescribed for baroreflex issues, to calm the sympathetic nervous system). I'm just worried about getting hooked on them, but at the same time, I can't cope with these surges any longer! Many thanks for any feedback.
  12. Another fan of crochet here! So much fun, and one that you can do laying down in bed too.
  13. Hi there, It's been suggested to me that I have baroreflex failure. My notes from my specialist also say I have "autonomic dysreflexia" which is somewhat similar, but common in people with spinal injuries (which I don't have). It really is quiet a mystery. I have read that for baroreflex failure, the main aim is to calm the over-active sympathetic response which helps stabilise the baroreflexes.
  14. It's interesting you asked about the flu shot, as my specialist — who is the head of a very good medical school here — has told me that they are seeing a clinical correlation with people get the flu jab, and shortly after, getting POTS symptoms for the very first time. Apparently this is happening more in women, too. Of course, my specialist can't make any definite statements (and I think she'd probably lose her job if she outright said "don't get vaccinated"), but she did make it clear to me to be careful and to be aware that people seem to be having flares, sometimes very severe. Definitely advisable to speak to your specialist and do what feels right for you. I am certainly not against vaccines per se, but I'm not going to be getting the flu jab as I've had bad flares in the past and got very sick after a set of 3 vaccinations a decade ago (when my POTS first started).
  15. Do you have a cardiologist you can check in with Viktor? I had times where my diastolic would do that. Thankfully it's now dropped (so dealing with the low diastolic readings) but I do think it's always good to check with your specialist, especially as the diastolic is related to the pressure in the heart specifically. Good to just make sure everything is structurally sound / no issues with heart valves etc.
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