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Everything posted by Scout

  1. Does anyone faint easily when it comes to triggers like pain, sight of blood, etc? I've always been someone who faints suddenly after seeing something upsetting, or in response to sharp pain. I've been told by my GP that this is a survival response from the body, and approximately 2 - 4% of the population experience vasovagal syncope. But I'm intrigued as to whether this is more common with folks with dysautonomia? Earlier today, I cut my finger as I was cleaning something, and suddenly had tunnel vision and passed out briefly. It wasn't even a severe cut, either, and it's so odd, because I don't have a phobia of blood really either. Anyhow, was just curious how common this was.
  2. Thanks folks, for the replies! @rgarton Mine last around 30 minutes, but up to 2 hours on occasion. It really is so incredibly tiring, isn't it? So sorry that you experience 6 hours worth! I always need to sleep a lot afterwards.
  3. I get severe nausea sometimes, too. It can come in waves, and then suddenly go away. I think mine is partially caused by dietary intolerances (am trying my best to avoid such foods), but also a big part of it seems to be from the surges.
  4. Thanks very much for the replies, folks. Much appreciated. @ks42 We sound rather similar! I am very sensitive to meds and often just need a small dose, too. Will see how I go with some magnesium citrate, as most people seem to be recommending that form of magnesium.
  5. Hi there @rgarton. I am so sorry to hear you're going through that. Indeed, I have some fairly severe tremors and body shakes, but they do not last as long as yours. Mine usually last anywhere from 30 minutes, to 2 hours. I really hope you get to the bottom of yours, and find something that stops them.
  6. I have been having this a lot lately when I have a surge. Had to call emergency last week after a particularly bad episode. Woke up to heart going mad, shaking violently. Was just wondering how common it is to shake / shiver, particularly in those with hyper-POTS?
  7. @Jessica_ I feel your pain with the surges. I seem to have periods of not having them, and then suddenly, I'll have them day after day. It is so draining, and frightening. Just this past week, I seem to have had a lot. I know stress makes them worse for sure, and dehydration / imbalance in electrolytes. I hope yours stay away!
  8. @jklass44 I'm so sorry to hear about your negative experience. It's so frustrating how dismissive some specialists can be, and frankly, how arrogant of them. I am having a similar issue where my cardiologist, as lovely as he is, seems to know nothing about POTS. It's all very tricky. Trying to find a dysautonomia specialist / neurologist who is well versed in these matters. I hope you find someone soon and get the best treatment, and start feeling better.
  9. Anyone had any luck with magnesium helping their symptoms, especially for Hyper-POTS? Am wondering what the best kind is, as there are a lot. Cheers.
  10. Hi there, So I've been trying to sort out my dysautonomia for a while, to no avail. I've seen doctor after doctor (including cardiologists), and have tried beta blockers which haven't helped (Metoprolol made me far worse), and am still no better. I get the "surges" (which I outlined on another thread), and my BP shoots up, usually only my diastolic. But these hit out of nowhere and are frighting as all h***. I'm not sure whether to ask for an endocrinologist (have already seen one before who treated me like I was mad, so that was a waste of money). I've tried looking into POTS specialists, but there are none that I can find in the area. One who I did come across now only takes patients with MS. I do have Valium on hand, given by my GP, but other than that, I have nothing else to try and curb this. I feel like there is something I am missing because some days I am "OK", (relatively speaking), and other days, even when I feel fine, my BP goes whacky and hits me out of nowhere. I have been thinking about getting some private blood tests, which will cost me a couple of hundred dollars, but perhaps it is worth it just to be sure. Essentially, I'm at a loss at what to do next...
  11. I have incredibly similar readings to yours. Wondering what helps you curb these? Sometimes my readings are really high (usually only diastolic is high), and other times, perfectly normal. It's so odd and I keep trying to find out what causes it, to no avail.
  12. Hi there Weary, I am so sorry to hear what you are going through. I also have very high diastolic readings often, sometimes 100 and above. You could certainly have hyper-POTS. I would not rule that out by any means. Have you had your RAAS system checked? Are there any meds you have tried as of yet?
  13. Hi there, I really relate to this. I had the exact same thing - my POTS started as having constant / standard low blood pressure, and all the accompanying symptoms of "standard POTS", but then suddenly I became hyperadrengenic. Similar to you, it is often (almost always) just my diastolic that is high. Just today, my diastolic was 100. It dropped shortly after, but still - any kind of "surge" makes it go very high and alarmingly so. Doctors aren't taking me seriously in the slightest, because I am "young" (nearly 30), and it is driving me around the twist. My body seems to be going haywire. I can feel that something is wrong, but keep being told it's just anxiety. Yes, I have anxiety - absolutely, but the anxiety was caused by the initial surges, which came on out of the blue and when I am relaxed, not the other way around. The not having answers has given me the anxiety. Instinctually, I believe we know when something is "off", and this is the case. Unfortunately all I can recommend is that you push for endocrine tests, such as aldosterone / renin / angiotensin (I am trying to get these tested myself but doctors are being very useless, sadly), and cortisol, catacholomines etc. The impending doom feeling you speak of hits very close to home, and I am so sorry you are also dealing with this. It's so, so rough. Please feel free to message me on here if you need to.
  14. Hi folks. I am afraid I don't know of anyone in Melbourne. I am currently looking for someone in Sydney who treats POTS - especially hyperadrengenic. Struggling to find anyone. Perhaps I need to travel interstate. Am very desperate. Wish I could be of more help and offer suggestions.
  15. Hi there @bombsh3ll Thanks so much for your reply. I definitely have anxiety, because mentally, I feel it as well. But I do know that there is a lot of overlap between my heart symptoms, and my anxiety. My cardiologist said just how difficult that combo can be, because it's the chicken or the egg, type situation. They bounce off each other and make things truly terrible. Regardless, it is good to know that Valium should be really helpful. I will start with a very lose dose, and see how I go. Many thanks!
  16. I haven't had this done - but nearly did. I had an EP study and they commented on how they could attempt it - but that it was high risk and that needing a pacemaker when having POTS can make things a lot, lot worse. Similar to you, I have IST (and SVT), and also have low heart rate at times. So, it certainly is a tricky thing...
  17. Hey there, I think the only way is to try. But certainly, do be careful. I have heard of a few folks with POTS finding it very difficult, because, as you said - the compression limits blood flow and this can really make things a lot worse. Could add to syncope and so on. If you do - just make sure to go a size up and take it carefully.
  18. Has anyone had any luck with Valium / Diazepam? My doctor gave me some and said to try it during my surges, which often are spurred on even worse by my accompanying anxiety disorder. I am often nervous trying new medication of any kind - but my surges are getting so severe lately. Any advice is most welcome. Thanks so much.
  19. @Steven - Thanks so much for the information. I am in Australia too, as it so happens. Could you possibly recommend a hospital / doctor who knows of this testing? Many thanks! @haugr - Incredibly helpful information. Thanks so much. I will do all I can to insist on some testing, and you are so right - I am always feeling a lot better and have fewer "surges" when I am well hydrated. @yogini - Brilliant point. I am seeing my cardiologist tomorrow and will definitely discuss trying a different beta blocker. Thanks again!
  20. My attacks are just like yours. I feel this odd sensation that it is starting (usually I noticed my breathing changing) and then my heart is already racing by then. I feel dizzy, nauseated, very shaky, with sharp chest pains. Sometimes my hearing goes funny, or my ears ring. Mine seem to last anywhere from a few minutes, up to 20 minutes or so (occasionally longer). And then there is the aftermath of having the shivers. My body seems to convulse uncontrollably (but I am fully conscious and aware of it). My teeth often chatter. Truly is a bizarre, terrifying experience, but I get slightly more used to it each time. Still find them incredibly hard, however, and am still seeking medication that actually works. Metoprolol seemed to make things worse after a while - and I suspect it is because my BP was dropping low, so my automatic nervous system malfunctioned and falsely tries to "raise" my BP - thus triggering an attack.
  21. Hi folks, This is very interesting as I am very similar. I can have both hypo and hyper-tension. I seem to have the hypertension more when I am sitting still, or sometimes it will wake me in the early morning, and it is high. I have to change how I am lying in bed and it "sorts out" - I seem to need to raise my head for some unknown reason, but that helps. Still perpetually baffled by it all - and seeking answers. But I hope we all find some respite very soon. Please keep us updated.
  22. Hi everyone, Thank you so much for taking the time to reply. They have all been very helpful. I will check out those particular threads, and links. Thanks again! It's also very interesting you folks bring up the RAAS. I have been thinking about whether that is an issue for me. If that is the case, is it possible that sometimes, my BP is low / normal? The past 2 days, I had normal BP. And now, suddenly, my diastolic is high again. I feel no different - not anxious or anything of the like. But I just feel the sudden "surge" is the best way I can explain it. And uncomfortable knowing, and then I check and, yep - diastolic is back up. Yesterday morning my reading was 112/73, which is obviously fine. But in the evening, it was 116/96. It is very odd, indeed. I saw my doctor, again - explaining how this happens. But no one is believing me. They are saying I am simply anxious and to move on. I have been trying to sort this out for months and months, and am getting tired of it. Should I push for a renin/aldosterone test? I have had my catecholamines checked - did a 24hr urine test, and that was within normal ranges. Thanks again for everyone who replied. I hope that, soon, I can get this sorted.
  23. Hi there, I will try and keep things succinct: I have had a POTS diagnosis for several years, and my symptoms were fairly well controlled with a beta blocker: metoprolol 25mg. I was taking this drug as needed / during bad flares, initially, but then started taking it everyday and did so for about a year. But one day, all of a sudden - it seemed like the meds weren't working, or were causing problems. I was having severe tachycardia at night when I went to bed, so my cardiologist told me to increase my dose. When I did that, I reacted very badly. I started shaking violently, my heart would race, and I could feel my BP surge. Normally, my BP was low, but since then, my diastolic has been quite high. Slowly, I came off the Metoprolol all together because it certainly seemed to be causing some havoc. Each time I took it, my BP would rise. This was several months ago, and I have seen a number of doctors - trying to get answers, but I am constantly told it's all in my head. Now, my diastolic BP is almost always in the 90s. My systolic seems to be fine, however. Just today, my BP was 108/91, and yesterday was 116/96. I've been informed that I have a narrow pulse pressure, which is abnormal. Sometimes my diastolic gets even higher out of the blue, and I can tell - because I get a specific kind of headache and overall uncomfortable feeling. I also have some other odd, new symptoms, such as: This "electric" / surge feeling which wakes me up, often in the early morning (always around 3 or 4am). It doesn't go away until I sit upright in my bed Shaking violently Chills Heat intolerance Frequent need to urinate (far more than usual) Low blood sugar symptoms (not a diabetic) Very short of breath Migraines Excessive sweating I did a urine test for adrenal masses, and that came back clear, so I have since been left with these symptoms, unsure of what to do / of what is happening. Doctors are brushing me off, telling me I am young and just not to worry about it. I wanted to know if anyone else has experienced these things, or similar things, and if so, what helped you? In two weeks, I am booked in to see my cardiologist again, so I will certainly speak with him and insist on further testing / new medication, or whatnot. Just feeling rather concerned and wanting some answers to try and stabilise my BP again, and minimise this troubling symptoms. Thank you so much for your time, and have a brilliant day. Scout.
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