Jump to content
Search In
  • More options...
Find results that contain...
Find results in...


  • Content Count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About Scout

  • Rank
    Advanced Member

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

  1. Scout

    Another near faint or panic attacks?

    Hi Derek, I really relate to that — I have these sudden spells, too, and have fainted a few times because of them. Recently, one occurred out of nowhere and I was surprised I didn't lose consciousness. I felt very hot, and my whole body was pulsing. My brain seemed to sort of "freeze" and not work, and it felt like the floor was falling from under me. The symptoms you are describing do very much so sound like Dysautonomia / ANS dysfunction (of course, I'm not a doctor, though). Do you have a specialist you've seen?
  2. I apologise for this subject being potentially morbid, but I am curious — how do we know when to call an ambulance / go to ER, for chest pains, heart related issues, etc? I have been to ER (and in the ambulance) countless times for severe chest pains and palpitations, but never has there been anything shown up as "bad" for my heart, etc. They run blood tests for troponin, do EKGs, etc, and it all comes back as fine — despite the fast heart rate, which they treat. But these symptoms I experience are truly severe, and would send a person without Dysautonomia to the ER, without a doubt. Everyday, I have chest pains — often very bad ones, sometimes a severe pressure on the chest, and most days I have pronounced tachycardia. I've been checked over by a cardiologist, who I see twice a year, and he assures me my heart, itself, is healthy. My father had a heart attack very young, in his early 40s (luckily he survived and is still doing well, over 20 years on), so I have to admit: I am concerned that one day, I'll just palm off these symptoms as another Dysautonomia flare, when, in fact, it could be a heart problem at one stage. I can't go to the ER every single time I have a flare, because that would be several times a week. Any advice on how to differentiate POTS symptoms and chest pains, to actual heart muscle struggles? It's all very difficult... but I believe that forewarned, is forearmed. Many thanks, and have a lovely day.
  3. Scout


    Yes, I get the shakes, too. It's really no fun! Sometimes, my teeth chatter because I am shaking so much. I recall one episodes where it felt like I was having convulsions. I second what folks have said above: sit down (or lay down, better yet) wrap a blanket around you, and — if you can manage to make it at the time — drink something warm. Just to bring some comfort to yourself, whilst the adrenaline works its way out of your system.
  4. I am wondering how common this is? I get — and increasingly — irregular heartbeats, but it seems to only be when I am either sitting, or getting into bed and lying down. Sometimes, it happens when I sit down to eat, after I have had a few mouthfuls. I've had several times recently, where I will have a succession of 3 to 5 PVCS (they may be PACs, but they feel lower down, so I am assuming PVCs), and then my heart will race very fast, for a while after, almost as if to reset itself. It always feels so intense when it happens, this sudden, violent thumping in my chest, and then, slowly gets back to normal. Curious how common this is? It can be quite startling.
  5. Scout

    Anybody feel nauseated all the time?

    I get nausea a lot. Sometimes, very severe. Peppermint tea helps me a little. It's certainly not a cure, but it calms my tummy somewhat until the nausea passes.
  6. 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!
  7. 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.
  8. 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!
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. 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.
  15. 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!