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About Scout

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    The simple things in life bring me the most joy.

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  1. 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.
  2. Thanks so much for the replies. I very thankfully tested negative. Nin, so sorry to hear you had it but glad you're OK!
  3. 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 💜
  4. 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 h
  5. Another fan of crochet here! So much fun, and one that you can do laying down in bed too.
  6. 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.
  7. 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. Def
  8. 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.
  9. Sounds like it might be pulsatile tinnitus? Is it a whooshing? In time with your heartbeat?
  10. 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!
  11. 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!
  12. 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 💜
  13. 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 t
  14. 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.
  15. 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
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