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Everything posted by Scout

  1. 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 💜
  2. 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
  3. 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.
  4. 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
  5. 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
  6. 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?
  7. @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!
  8. @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 mor
  9. 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.
  10. @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 🙂
  11. I'm not sure if the situation with the virus is fine, though. It's about to be declared a pandemic. Look at what just happened in Italy, Iran, South Korea. People with chronic health issues, and the elderly, are at risk. As mentioned, a simple flu that wasn't even that severe nearly killed me last year. I hope this all blows over soon, and my heart goes out to those affected, but this situation could still be very serious. People need to be aware and be prepared.
  12. Apologies that I haven't replied to everyone. In quite a flare at the moment so energy is low, but I just wanted to sincerely thank you all for your helpful feedback. It is so very appreciated 🙂
  13. @Sushi That's very interesting that you also can't take metoprolol. Do you know if it's all BB's, or just that one? I will get tested for that — that sounds very useful! Thank you! I'm not sure why, but metoprolol made me so much worse, and seemed to also make me more hypertensive, which was very confusing. I need to find something that works for these BP spikes that I am still having. As much as I dislike the low BP episodes, too, I can at least cope with them and just lay down to rest, have some more salt to compensate etc. @p8d It's sad isn't it, just how much more docto
  14. Hi Kim! I'm afraid I don't have any answers, but I am really interested in people's replies. I have wondered the same thing, as I've been told my SNS is over-active. What are your main symptoms from having an over-reactive SNS? I wonder if ours are similar.
  15. I'm not sure if what I am having sometimes occur is a seizure, but I think it may be. I've never had one at a hospital etc, so I cannot confirm with complete certainty that it is, but basically when I have a severe dysautonomia flare, I just "go somewhere else" mentally. My brain feels like it stops and I just stare off into space and cannot think or move or do anything. I just space right out and go wide eyed and feel very, very odd. These usually last anywhere from 10 seconds, to a minute. My body doesn't usually seize, but I have had several occasions where my shoulders will involunta
  16. I'm seeing my specialist again soon, and I need advice on how to better self advocate. Basically, the last time I saw her, she just said to try the same beta blocker that previously made me so much worse. I clearly can't tolerate BBs, and she still insisted on me going back on them without offering anything else. She seemed impatient and I had so many questions that weren't answered. So, when I see her in just under two weeks time again, I want to be better at telling her I need her to help me and not offer things which haven't worked in the past. I know there's lots of other options out
  17. Just thought I'd add my two cents: I also get sensory overload, and it seems increasingly so. I'm not sure if it's a symptom of my mental illness, though, but essentially, I have found that I often need to cover my ears when there's any kind of loud noises. Storms and crowds are the worst for me. I don't cope well and I start shutting down. I'm looking at buying those noise cancelling headphones, or some ear muffs — I know they sell them specifically for people with sensory issues.
  18. Thanks @Pistol I'll look up the homemade hand sanitiser. @yogini Yep, it is unlikely, sure, but it also started as just a few cases in China, initially, then it spread very fast. So... I'm concerned. Hopefully things settle down. I struggle with paranoia at the best of times, so this is just a bit difficult to cope with.
  19. That's true, but they also don't tell us everything in the news, and the cases are said to be far worse. The flu for some is nothing, but when I had the flu last year, I was hospitalised and had a severe episode with my POTS, which ended up making my health a lot worse.
  20. I've read that Vit C can lower BP in some people, but don't quote me on that! As @Pistol said, a HR in those ranges is quite good, so no cause for worry.
  21. @Pistol @KiminOrlando @Sushi Thanks so much for your replies. I'm really struggling with the anxiety from this. We have more cases in the country, and they are in isolation which is good, but I can't help but stress about it a bit. People keep saying "it only kills the elderly and the chronically ill", and, well — that's us, the chronically ill! Perhaps I will calm down in a couple of weeks if we don't have the cases keep climbing. I will take lots of precautions in the meantime. Unfortunately all hand sanitisers etc is sold out in the country. I have a small stash as
  22. I'm so sorry you had that happen! Nolan sounds like a lovely kid. Good on him for checking on you! I push myself a little bit, but I have to be so careful. If I over-do it, I end up having a severe flare. If I under-do it, I end up being de-conditioned and getting even worse. It's such a balancing act! At the mall, I use a scooter if I'm going to be there a while or have a lot to do. If I am just going to one shop, I park as close as possible and will walk if the distance is not far, and I just sit down and take breaks on the way. Sometimes walking even the shortest distance
  23. Is anyone else feeling nervous about the potential of this spreading? I'm in Sydney, Australia, where we have now had several confirmed cases. A minor flu last year put me in hospital and severely exacerbated my Dysautonomia, so the thought of having a virus terrifies me because I'm fairly certain I'd not survive that. I'm so scared of it spreading and spreading.
  24. Hi there Matthew, I totally agree with @Pistol It's so important to have enough mild exercise, but not overdo it, because that can make things worse. Just listen to your body. Salt. Lots of fluids. Prioritising rest. Healthy eating. Being as positive as you can. Knowing your boundaries. Hang on in there! I know 9 months is a while away, but it will come around fast and I hope you're given some good options for treatment. I'm sure you will be! Take good care of yourself!
  25. I actually had to stop beta blockers in general because they caused me to have hypoglycaemic episodes. It's very odd, because I'm not diabetic, but my blood sugar started going whacky. I know that it is a possible side effect, however rare. I just seem to be unable to tolerate BBs. Really hope you're OK!
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