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Everything posted by Scout

  1. Good to hear you had no reaction! Thanks for the feedback.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. Thanks so much for the replies. I very thankfully tested negative. Nin, so sorry to hear you had it but glad you're OK!
  7. 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 💜
  8. 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.
  9. Another fan of crochet here! So much fun, and one that you can do laying down in bed too.
  10. 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.
  11. 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).
  12. 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.
  13. Sounds like it might be pulsatile tinnitus? Is it a whooshing? In time with your heartbeat?
  14. I have those exact symptoms happen regularly. Had about a year or two when that would happen every night actually, but thankfully it's not every night now. The tremouring afterwards for sometimes an hour or so always signaled that it was a dysautonomia attack, with an adrenal surge. My temperature often drops, too, and my teeth start chattering after the worst of it is over. Please know you're not alone in what you're going through!
  15. Hi @Ksheo, I wish I had helpful advice but I just wanted to let you know I often have a very narrow pulse pressure. I've had many times where it was been 20 points difference (or less). A reading such as 80/60 or 70/50. I always feel very unwell during those episodes, but no doctor or specialist has really ever been able to explain why it happens, other than it being the dysautonomia. Also have had times where I've had a wide pulse pressure (although far less common for me). Dysautonomia really is a wild ride!
  16. Just seeing if anyone with dysautonomia has had COVID-19, and if so, how did you cope / recover? I currently have a dry cough and I am going to get tested tomorrow. Feeling a bit nervous about it but hoping it's nothing. I live in Australia and the cases are a lot lower here, but we did just have a cluster outbreak nearby. Really hope everyone is staying safe and well 💜
  17. I have hyper-POTS also and 'autonomic dysreflexia'. My BP is very labile. When resting it is usually around 90/60 or lower, and then when doing anything that activates my sympathetic nervous system, even slightly, my BP shoots up with my diastolic usually around 100. Thankfully it is very short lived and laying down flat reverts my BP back to a low reading, but it is very tiring and difficult having the readings bounce around so much. When I did my tilt table test around two years ago now, the specialist said to me that they recorded my beat to beat blood pressure (so recorded the pressure every single heart beat using a special monitor) and she said that my BP fluctuated so vastly and she's rarely seen it in patients bounce around quite so drastically. This means the autonomic nervous system is struggling to be stable.
  18. I hope everyone is staying safe. It's upsetting to see how many cases there are out there. I had a bad feeling this would happen, and I guess it did. But I still have hope. Please stay safe everyone. We will get through this. Self-care and take things one day at a time. Sending virtual hugs.
  19. I know I've mentioned before that I sometimes have short "blips" that feel like seizures. Basically, I will have these moments when my Dysautonomia is flaring quite badly, where my brain just seems to stall. I will stare off into the distance, and not be able to move or do anything. It's like I'm there, but not there at the same time. Usually these last anywhere from as short as 15 seconds, to a couple of minutes. I just had one though where I suddenly felt overwhelmingly sick to my stomach, and then all of a sudden just "went" somewhere else mentally, and the front of my head / brain felt very, very weird. Almost as if there was static in my head. It was the most intense one I've had so far, and I am feeling really sick after it. I don't really know what to do about it. I suppose it just is what it is?
  20. My psychiatrist has been asking me to take a low dose anti-psychotic, as I am diagnosed with schizoaffective disorder (which is a combination of bipolar disorder and schizophrenia, for anyone who hasn't heard of the term before). My symptoms are a lot more manageable when stress levels are low, but when I do have an episode, it is extremely disruptive to my life, and downright frightening at times, too. Symptoms seem to also be worsening for me as I get older. I'm very scared, though, of taking such heavy meds when I know they can have serious side effects relating to blood pressure, and cardiac health. My dysautonomia is still at a very difficult to manage level, so I'm just feeling very paranoid about introducing some new medication right now (which is also difficult, because a lot of that paranoia stems from the mental illness itself). I was wondering if anyone has any experience with mental health medications whilst also having dysautonomia? I know I need to do something, because these symptoms aren't going away, but I'm just feeling afraid.
  21. I have a fair amount of Diazepam, but I am worried about needing it daily. Do you take it? Does it help with the spikes?
  22. @FileTrekker Absolutely agree. Beta blockers have really not helped me in the past. If anything, they seemed to worsen matters. But I will look into Coreg, as a few people mentioned it on here, and it seems it is a different type of BB (alpha and non-selective blocker). My doctor was happy to give me a script for some. Thanks so much for the replies, by the way! Sorry for my late reply. Life has been a lot lately!
  23. @toomanyproblems I think it's good for us to try and remain as calm as possible. I had a lot of people such as friends and family, tell me to chill out, though, when this outbreak started, and now those people are understanding why I was concerned to begin with, as we watch this spread. So — I very much so understand your concerns and just want to say I don't think you're silly for being worried. I too, am worried. I am optimistic however, and think we will be OK, even if we do get it, but I also think it's important to be a realist and be extra cautious. Coronavirus is far more serious than the flu, and the flu made my dysautonomia a lot worse last year. Take extra precautions as best as you can, avoid crowds etc, and try and be as healthy as possible! We'll get through this.
  24. Hi there, Just wondering — for those of you with hyper-POTS, which meds have worked the best? I did not tolerate beta-blockers (metoprolol in particular), and seeing my doc soon so planning to ask for an alternative. Does anyone take calcium channel blockers, and if so, which one? The main symptom I want to stop is my spiking BP.
  25. @Pistol Absolutely. You're right. I struggle with anxiety and paranoia so I think this outbreak is just stressing me! But thank you for bringing some calm. Hopefully, this will all settle down soon 🙂
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