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Scout

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  1. Just wanted to second what a lot of folks above have already said. I similarly get a significant rise in diastolic when exercising, but not always. It really is very odd, and I think there are so many variables regarding what sets off a surge etc. Make sure your heart has had a good check over by a cardiologist, and, if all is well there (which I am guessing it will be - it seems that most people with dysautonomia have fairly healthy hearts) then you will likely need to try some meds (beta-blockers, or perhaps clonodine. A specialist will need to help you with that) which will bring it down and help in that area. Sending positivity your way!
  2. Scout

    Losing Hope..

    I relate to this a lot. Just the other night, I had a "run" of PVCs - perhaps six or seven in a row, which I think, technically, qualifies as non-sustained ventricular tachycardia. My cardiologist is not concerned, but wants me to keep a note of them, and to see him if it does increase. I also get the chest pain / tightness, and squeezing. It is the symptom I probably hate the most, because it can be very scary. Your symptoms definitely can be caused by dysautonomia, but do always run this by your doctor / specialist. Dysautonomia can truly cause all sorts of weird, and sometimes scary, symptoms. I really hope you start to feel a bit better, and get the answers you need.
  3. Scout

    left arm/shoulder pain

    Hi there, Just wanted to let you know that I have this happen quite a lot, to be honest. And, often quite badly. I regularly get tingles down my arm, too, which can be scary. As the others have said: make sure you see a doctor (and even a cardiologist, just to be safe), but I would wager it is Dysautonomia related. If in doubt, however, see someone. Take care!
  4. Scout

    mitral valve prolapse

    Hi there, I have mitral valve prolapse. It's not severe, but I've been told we will need to keep an eye on it. Also: I have the exact "bubbling" sensation you speak of! It's very odd and hard to describe, but you described it very well I think. Very strange and "gurgling", sometimes, almost a grinding feeling. I am not sure what entirely is caused by my MVP, and what is caused by my dysautonomia, but I do know that they often overlap, and that a lot of people with one, have the other. I've also heard MVP itself can be caused by dysautonomia, but I'm not exactly sure. Feel free to ask any questions if you have any! All the best.
  5. Scout

    Long term heart health

    I do think about this a lot, to be honest. But I also remind myself that I've done all I can to try and combat these symptoms (to the best of my abilities), and seeing a cardiologist yearly (sometimes twice a year), helps keep peace of mind. My cardiologist has said there is a small chance that my heart could enlarge over time, and I appreciate his honesty, but he did emphasise that it is rare and would likely be reversible. I did have a severe episode once and my left atrium actually had enlarged a little, but it went back to normal. Keep in mind I also have mitral valve prolapse which contributes to that, and which I get monitored. I would certainly recommend seeing a cardiologist annually if you do have heart symptoms, and always address any concerns with them, but try not to worry too much about it: a lot of people have POTS and their hearts are fine and dandy, even after many decades.
  6. I haven't had this symptom happen as much lately (had a while where it was happening every night, in the past) but had a really bad episode last night. I was moving house over the past couple of days, and I ensured I didn't do any heavy lifting, because that makes my symptoms a lot worse. But I am still very exhausted, and the exertion must have contributed to it. Basically, I woke up in the early hours of the morning, with this very strong surge feeling. Oddly, my heart wasn't racing like it usually does, but it was beating very strong against my chest. The "surge" feeling was almost unbearable. Very uncomfortable. It only went away when I sat upright, which is odd, and I have noticed happen a few times. Lying down seems to make it worse, or I have to sit up to "reset" my body, and then I can feel it slowly come down. It took just under 10 minutes for it to go away. I am guessing my BP was sky high, causing that feeling. Does anyone else have this? I'm finally see a specialist in ANS disorders in less than a month, so... hopefully some answers. Hope everyone is having a wonderful day.
  7. Is this quite common in Dysautonomia? I notice my HR speed up a lot when swallowing drink or food, and it then slows down afterwards. I figured it has something to do with the vagus nerve. Can be quite uncomfortable.
  8. I'm so sorry you're having this happen @Pistol. I'm still trying to find something that works for my flares, as I have very similar readings to yours. My BP can be totally normal and on the low side, and then unexpectedly high at other times, making me feel very ill. Similar to yourself, and other folks above: I have found fluids usually help a lot, and make flares / episodes less frequent, but they don't stop them entirely, and sometimes not even close. Truly wish I had something useful to suggest, but until I see my specialist for the first time (still on a wait list to see a local ANS specialist), I'm afraid I feel rather useless. @jklass44 I have a similar issues with beta-blockers. Chest pains, and they don't control my symptoms anymore, for some reason. Lots of trial and error, I suppose.
  9. Scout

    Mobility aids

    After another severe episode yesterday where I could barely walk, I've officially decided it's time to get a mobility aid for my "bad" (badder than usual) days, to use when I need to run errands but otherwise can't get around. For cost efficiency, I'm investigating getting a simple electric "commuter" scooter (as they are significantly more affordable), with a seat. Some can fold up easily, which is a bonus. But if anyone can recommend anything, or if you have any experience with using mobility aids, I am open ears. Many thanks.
  10. Scout

    Low iron.

    Thank you all so much for your replies. Very appreciated! My b12 has been slightly low on occasion, but the past few times, it has come back OK. I will look at having a small amount of red meat a few times a week, and see if that improves!
  11. Scout

    Low iron.

    Hi there, Today my doctor called me and said a recent blood test showed I was quite low on iron stores (ferritin, I believe?), but not yet anaemic, as my haemoglobin is currently still OK, albeit on the lower side of normal. I need to get an actual copy of the blood test results later this week, but I was just curious if anyone with dysautonomia has any experience with iron issues, and if they found it can contribute to their symptoms / make them worse. I've never really had issues with it until now. I don't eat red meat at all, so I'm thinking I will probably have to start having a little of that, as I was told that if I don't treat this now, I'll soon be anaemic, and that can't be good for my POTS symptoms, which are already almost too much to cope with. Thanks for any feedback.
  12. @Don We sound quite similar. I have been wondering lately how common erratic heartbeat is for folks with autonomic dysfunction. Mine bounces all over the place and the best way I can describe it, is my heart seems "confused". Fast... slow... super fast... super slow... repeat. All in the space of seconds. I second what @Pistol has said. I haven't had the device implanted myself, but I have heard only good things, and that the surgery is to implant it is minimal. It will likely be hugely beneficial for you and your future treatment. I keep having the same issue with a holter, in that it's only such a short period of time. I might go days with nothing, and then suddenly have a lot of episodes at once, when not wearing the monitor. Sure is frustrating.
  13. Scout

    Arrythmias

    Hi there, Indeed, I almost always have normal sinus rhythm when having an episode, but just very fast. I have, however, had a few incidents of SVT, captured on a heart monitor. Around 8 years ago, we tried to do an ablation but weren't able to do so, as they said they couldn't find the exact spot, so decided to leave it instead of risk a pacemaker (have heard a pacemaker is often not good for POTS patients?) I've also been told I have inappropriate sinus tachycardia on occasion, but it's difficult, because my HR often is below 100. Basically, my heart is all over the place. The slightest of triggers sets it off. I was somewhat well controlled on Metoprolol for several years, but it stopped working, and also started affecting my blood sugar levels (a side effect I wasn't aware of). I have PVCs and PACs quite often, and they sometimes startle me, but I've just accepted them, now. As for the alcohol... oh how I miss it.
  14. Scout

    Feeling scared.

    @Pistol Thank you so much for the kind words and advice! It really means a lot. I have to keep optimistic, even if things get scary, and am hopeful things will still improve. Hopefully I get that appointment soon with the specialist, and things start moving ahead. And very true about the driving. I have been thinking lately about how I just can't do it anymore, as I have had a fair few attacks whilst driving and have had to pull over. It's too dangerous! The last thing I want is to accidentally harm someone else whilst being behind the wheel, and having an episode. Henceforth, I need to get used to taking Uber rides instead. Again - thanks so much.
  15. @StayAtHomeMom Exactly, well said. This is precisely why I think it might be important to have the medical alert bracelet: to avoid potential medications that may cause an adrenal surge, unless, of course, it is absolutely needed (say in a case of anaphylaxis) and required an epi-pen or what not (hopefully that never happens!) Thank you all so much for the feedback. It has been very helpful. I've decided on getting a silicone bracelet which has some brief information, and also prompts medical staff to see my wallet, where there is a card with more details. I am thinking it will be best to write "Dysautonomia / POTS" on the actual bracelet, or perhaps "autonomic dysfunction"? Tricky knowing which terms are better, and more widely known, in the medical community.
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