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Everything posted by Scout

  1. Just an update: I did a google search and it has been now reported that he had a blockage in an artery, which caused the cardiac arrest. So, would have had nothing to do with his Dysautonomia at all. He was treated via stent.
  2. The Wiggles do a lot of good charity work here in Australia. I remember reading about his condition a little while back, and was pleased that he was using it to raise some awareness. For those worrying that it is directly linked to his Dysautonomia, I wouldn't panic too much. Sure, there could be a link, but it's more likely that he had a cardiac arrest for other causes, like perhaps a blocked artery, or as mentioned above, perhaps an arrhythmia. He's a bit older now, so there could be many different causes. The most important thing is that he is safe, and I think an important thing we as fellow potsies should take away from this, is to remember never to push ourselves over our limits. I hope and pray he continues to improve!
  3. I'm so sorry you were in hospital recently @Pistol! I really hope you're doing better now? That RN withholding your meds makes me frustrated. So sorry that happened to you. I would have been emotional, too!
  4. I'm so sorry to hear you're experiencing such pain! My heart goes out to you. I have frequent body pains which I would classify as chronic because they are so frequent, particularly in my back, abdomen, chest, and legs. Sadly I don't have much advice, because I tend to just use heat packs and rest, and take pain killers when the pain is severe enough for me to not be able to focus. Generally, I'll always have two or three places aching or hurting at once, but I've gotten so used to it, and when the pain is below a 5/10, I tune out as best as I can. But when it's worse, pain wise, that is obviously much harder to do! Do you have a good doctor? I'm not an expert but I think a rheumatologist would be a good doctor to see, if you've not already. Sending well wishes!
  5. I have mitral valve prolapse and regurgitation which we monitor (it is not severe enough for me to have surgery, but he said I may need it in the future), but he seems so casual about the chest pains. I'm "young" (31), so he just says how young I am and not to worry, and when I was 26, I had a cardiac CT scan to look at my arteries, which he told me were all good and 100% open. I'd like more investigations because something just doesn't feel right when these pains happen. I know when it's muscle pain, but this feels different, if that makes sense.
  6. If you don't mind me asking, what does the pain from Prinzmetal Angina feel like? And how did you get it diagnosed? The pain in my chest is in the centre of the chest and slightly to the left, very sharp, pressure, squeezing feeling. Only short lived, though. Sometimes, up to 20 seconds or so, and occasionally in intervals. Usually when at rest. The episode I had a couple of days ago made my heart race straight after it happened, which could just be a response to the pain. I'm not sure entirely.
  7. I'll definitely be diligent with doing my daily leg exercises. I do the wall walk sometimes, too. Sorry to hear you're also struggling with balance issues! Hopefully we improve over time.
  8. I relate to this a lot, but fluids don't cause hypertension, for me. All I know, is if I don't have enough fluid, my BP goes very high. Drinking fluids usually mean my BP drops, which I think is the opposite of what is meant to happen. It's a puzzle, really! Similar to yourself, though, I get hypertension when doing the mildest of tasks. At rest, my BP is low, usually very low, and it often drops suddenly too when I am walking or moving, and when it was hypertensive just seconds ago. Do you find the clonidine helps control the high BP much?
  9. Does anyone else get sudden chest pains, in the centre of their chest? I had such a bad episode of that this morning. It only lasts around 10 seconds, but it was very painful and sharp. Almost a "wriggling" sensation, if that makes sense, but stabbing. I took some aspirin just to be safe, and feel OK now. But I get this happen fairly often. Usually the pain is duller, however. It is the sharp pains that startle me. My cardiologist is never worried when I mention this. He says it is most likely muscle pain, or, some short lived pain from my heart mitral valve, which is prolapsed. It still takes me off guard, however. Just looking for some comfort, really, and seeing how many others experience this. Have a lovely day.
  10. Thank you so much for the replies. A lot of you sound like you're experiencing exactly what I do with the balance issues. @Pistol I often fall right into the wall, too! It always feels so bizarre. I usually just tip right over on my side or sway. Definitely an odd feeling. I will definitely keep prioritising lower leg exercises. Hope everyone is well, and thanks again!
  11. Hi folks. I hope everyone had a nice Christmas and New Year! The holidays are so hard for us potsies, but I hope you're recovering well and were able to at least have some fun. Also, I just have a question regarding balance: Do many of you have issues with walking straight and keeping yourself upright easily? I've had this happen for a few years, but it's gotten so much worse, where I'll get up and go to walk, and simply fall over, or, my muscles just won't work and I'll lean dramatically to one side and try and balance myself out, if that makes sense? It honestly feels like, a lot of the time, my body doesn't know which was is up and my muscle memory doesn't work right. That's how it feels, at least.
  12. Yes, quite often! I remember the first time I had an episode and called for an ambulance, the paramedic said to me that my heart rate was as up and down as the euro (the currency). I thought that was a funny way of describing how erratic our heart rates can be when we have dysautonomia. When I'm having a bad flare, my heart rate will be very up and down. I've been told by a cardiologist that it's most likely related to the vagal nerve.
  13. I don't get the flu shot, either, largely because the autonomic specialist I saw said they've actually been seeing a significant correlation between the flu vaccine and patients getting, or having a worsening, of their dysautonomia after the shot. I was on the fence about it, especially this year because there were so many fatalities with the flu, but after researching it (and knowing I have also had severe flares after vaccines in the past), I decided to take other preventative measures. I avoid crowded places, wear a high quality face mask, and be as healthy as possible nutritionally. I also ask friends and family to let me know if they're sick, so that we do not come into contact if they are. It sure is tricky, though, and as mentioned above, it seems some people are fine with the vaccine, whilst others have a severe relapse / flare which makes them bed bound.
  14. Hi Peter, I am so glad to hear the ablation helped you! It's really interesting to me that you talk about beta blocker damage, because I had a very bad reaction to beta blockers, too, and it made my dysautonomia significantly worse. If you're comfortable elaborating, I'd like to hear more about your experience if possible. I never experienced PVCs or any ventricular arrhythmia until I started beta blockers several years ago. Many thanks!
  15. I live in a warm climate, but am almost always feeling cold. Unless we are having a heat wave, I will be feeling very chilly and need to wear a cardigan. It is 25 degrees Celsius today (around 77 F) and I am shivering, which I know sounds silly, because that temperature is simply not cold. People often comment on how rugged up I get, and it seems I am extremely sensitive to any cold breezes etc. I do get hot flashes often, but they pass after perhaps 30 seconds or so, and then I go back to feeling freezing. Do many other folks have this occur? I know temperature regulation issues are a part of Dysautonomia. Wondering if anyone has any tips other than to rug up? As mentioned, the only days that I don't feel cold are when it is quite literally a heatwave, and then the heat negatively affects me too and makes my other symptoms worse. At least a positive is, I've been really enjoying crocheting shawls, so I have plenty of those to keep me warm! 😂
  16. I've had two of these done in the past. They're a breeze, but I will say the only annoying aspect is that if you're not a deep sleeper, the sound of the cuff inflating every 30 mins at night to take your reading, can be frustrating and can wake you. Your arm will also likely be a little sore or tender after the 24 hours, due to all the readings, but only slightly so. The 24 hour monitoring is really useful to see what your BP is doing, so I definitely think it's worth it!
  17. @jeff_jefferson2 Absolutely, they sure can! I know when I have skipped beats, I often have the pre-syncope feeling come over me, as if I am about to faint. It is especially bad when I have several skipped beats in a row.
  18. @MissMermaid I get exactly what you described, and it often feels like it's around 8 beats or so when it happens to me, too. The last episode I had (which was around a month ago, now) was very scary. We've never caught it on a heart monitor which is frustrating, but when it happens, it sure is quite intense. I believe mine are non sustained v-tach, but they may also be ectopic beats from the atrium. It's rather difficult to know for certain without a monitor recording it. As @Pistol mentioned, a loop recorder is a good idea! I plan to discuss getting one with my cardiologist in the new year. All the very best!
  19. I'd certainly follow that up with your Doctor. Are you feeling any better? Hope you're doing OK!
  20. @MTRJ75 Hi there. I've had a cardiac CT scan, about 4 or 5 years ago it was now. I was very nervous about the procedure, but it was honestly fine and over with very fast. They give you a dye injection which wasn't too bad at all, and then they do the scan, and you're out of there. The CT itself was very quick, and compared to having an angiogram going up through the groin artery, it was easy. I'm sure the MRI procedure is a little different, but I just wanted to reassure you. It will be OK! As for the issue of cardiomyopathy, I'm really not sure, and that's something to definitely chat to a medical professional about. As far as I'm aware, an enlarged heart can be caused by underlying conditions.
  21. Indeed! My cardiologist said insomnia is a fairly common side effect of metoprolol, and many beta blockers in general. I think I just seemed to get the short straw so to speak and had severe insomnia whilst on it. I certainly wouldn't wish severe sleep deprivation on anyone. Not fun! And good to know! I'll go out in a couple of days once I recover from today, and will pick up some magnesium powder to try 😀
  22. @Jwarrior77 Thank you! I will definitely try some magnesium citrate. I used to take magnesium in a pill form (oxide I think), but haven't for a while. I've heard citrate is the best. Metoprolol caused profound insomnia (didn't sleep a wink for 3 days once), depression, and oddly enough — made my POTS worse after a while.
  23. I just got back from seeing my autonomic specialist, and I'm feeling quite deflated. I waited 6 months to see her, and she barely spent 5 minutes with me. The rest of the time, I was with her registrar, who was just taking notes and asking me questions, not giving any medical advice etc. She was lovely, but I have to admit she seemed pretty clueless. I explained how I have gotten quite a lot worse this year, with spikes in BP, and then it going quite low, and the specialist just said to try a beta blocker again — Inderal, this time. I used to be on Metoprolol but the side effects for me were very severe. She seemed to think Inderal might "be different" for me, and we will just start with a low dose. She was fairly against calcium channel blockers. It's all really frustrating me if I'm honest, because it feels like none of the doctors I see really know what's going on / how to best treat it, and they give me conflicting information. Just feeling a bit lost and upset, and scared of those severe side effects I had from beta blockers coming back. Sorry for the negative post. I hope everyone's having a lovely day.
  24. I have this happen regularly. It is an odd feeling! I have no answers I'm sorry, but just know you're not alone in experiencing it. It's been happening to me for about a decade, as well as sometimes seeing flashes of light in my eyes in time with my pulse, when my eyes are closed and I'm falling asleep.
  25. I'm sorry you also are allergic! The implanted loop recorder is looking more and more appealing, I must say.
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