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kel15

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    North Carolina, USA
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    piano, reading, studying nutrition, knitting, being at the beach :)

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  1. Hi @bookworm818 1. My low BP improved once I upped my salt intake. I didn't have hypotension though, it was just all over the place, always dropping and spiking. I drink powerade zero and other electrolyte drinks all day, and that seems to help things stay more stable. 2. Same as what @Pistol said above... Just about anything outside of a perfectly calm day can trigger a flare for me😂 My biggest triggers are any kind of stimulus (crowds, movies or loud music, sugar,...), or pushing myself too much. 3. My shortness of breath feels the same-- just can't get a deep, satisfying breath. Most of the time it happens when I'm standing up, talking, or have been sitting up for a while. For me, just laying down usually gives relief, and if I don't do that, I'll typically go into presyncope. Sometimes though, it's caused by my meds, in which case I just have to wait it out and not panic.
  2. I have had several asthma-like attacks (though not officially diagnosed with it yet) and, yes, some types of B-blockers can be very bad for that. The non-selective (such as propranolol, which I was on until just recently) are the worst, as they can constrict the bronchial tubes. I was just switched to metoprolol, which is cardiac-selective, and have had none of the airway constriction with it. I've only noticed minor side effects (drowsiness, etc.) and am only on a tiny dose, but it works really well to keep my HR down.
  3. Thank you! -- yes, my prescription would be for 30mg x3/day (pretty sure that's what it was). Haven't picked it up yet...
  4. @PistolThis is very helpful information- thank you so much!! Those are the things I've been confused about with hyperPOTS-- my symptoms line up with that more than with the other types, but the lower BP and symptoms of both vasoconstriction/dilation didn't make sense to me. So you can have both sides of it with this type? It's reassuring that this medication has helped you with similar symptoms. And I'd be starting on the low dose of 30mg/day too. Yes, that is interesting that it stabilizes things for you when you think it would make them worse... it makes me more comfortable giving it a try.
  5. Hi! I take a multivitamin to cover the bases and add in extra VD (I'm usually deficient), VC for immune support, a probiotic that also has zinc and other gut support, Circumin for inflammation, and magnesium to help me relax and ease my chest pain. I also drink herbal teas like Throat Coat, ginger, peppermint, and chamomile. I've tried other things over the years, but these are the ones I've stuck with
  6. New findings and question... So my symptoms have been escalating over the last few weeks, I think maybe due to spring allergies... I passed out after taking meds, ended up in the ER, and have been in a flare since. It's pretty clear now that my beta-blocker (propranolol) is causing some or most of my bad episodes of chest pain/trouble breathing. So I'm currently tapering off of that. Also being evaluated for the possibility of mild asthma or some other airway problem (Albuterol helps a lot for attacks, but I can't take the steroid inhaler because of side effects). My cardiologist wants me to try a calcium channel blocker (Diltiazem) to help with tachycardia/chest pain and he is referring me to a local POTS specialist. After research (and reading here in the forums ), I think I'm comfortable giving the CCB a try, but am somewhat concerned about the side effects of vasodilation. I already have blood pooling and low/normal BP with some days being slightly elevated. Any thoughts on this are welcome! Also, does anyone here have experience with asthma and POTS? I've never done well with steroids, so am looking for other options to manage it. Thank you!
  7. Thank you @Ashleigh for the feedback and recommendations! I'm glad you found some things that help your pain. I can't take anti-inflammatories now, but they did help me too when I was on them. Yes- I have noticed that it's much worse whenever I'm in a flare or other situation that makes me tense. After having further evaluation and testing over the last few weeks, I'm pretty sure there is more than one thing causing my chest pain, so that would make sense that not all my symptoms will fit into one category.
  8. Thank you, @Pistol! I'm pretty sure I have hyperPOTS too (just can't get anyone to actually test for and diagnose it), but, yes, it does sound different. I actually haven't spoken directly to my surgeon-- maybe that's something I should do though. I definitely have GI issues and chronic pain related to not having a gallbladder now, and I have followed up with my GI since surgery. I've had chest x-rays, CT scan, barium swallow, endoscopy, breathing tests,... so I feel like they have been pretty thorough. I do have acid reflux and gastritis, but the reflux is pretty well managed now - that's actually what my pulmonologist thought was causing my chest pain when all the tests came back clear. They haven't found anything else so far, and so just put it all down to POTS for now.
  9. Hi! I've had POTS for several years now, but more recently have been dealing with episodes of severe chest pain. They actually started just after having my gallbladder removed in 2019. So I started having constant chest pain/tightness about a month after my surgery (dr thinks that may be costochondritis), but then I also have these times where my chest starts going into spasms and I feel like I cannot draw a breath in. The tight crushing pain starts below my right ribcage and quickly moves all the way across my chest then up to the center. Feels like there is a tight band wrapped around my chest and the pain also radiates to my back. It comes in waves -- it'll be really tight, then ease up for about 15 min, then repeat this for an hour or more. I can't lay down as that makes it so much worse. My vitals (BP, HR, and oxygen levels) are always stable during an episode. I've been to the ER, but they never find anything. Also have seen a pulmonologist who ran several tests and did a breathing assessment. I've treated my acid reflux/heartburn and improved my diet to avoid known triggers. My dr. told me that as long as my vitals were normal, I should be fine not going to the ER for this. All my drs at this point think it is simply related to POTS. So I drink some hot tea, take magnesium, and use my heating pad to try to calm things down and help me relax. As far as triggers go, there have been so many, it's hard to find any real connection. The first few times it happened, it was definitely a reaction to OTC NSAIDs, so I've had to stop taking those. Being out in the heat will trigger it. Also drinking carbonated beverages, which is kind of weird, and sometimes strong smells like perfume, hairspray, or chemicals. Another thing is that it was happening every few months or so, then I went on a prescription anti-inflammatory for other issues, and it stopped completely. Then I developed gastritis early this year, had to stop the prescription, and everything has come back much worse this time- it occurs almost every other week now. Anyway, I know chest pain is very common with dysautonomia, but just wondering if anyone has had similar experiences with this type of chest pain and symptoms?? Thank you!
  10. Hi @Alicat_326 , I used to have very similar symptoms to what you describe (especially the pain!) and mine ended up being endometriosis plus POTS. For me, they both came on together, so it was very difficult to sort out which symptoms were from what. That was about five years ago. I was able to see an amazing endo specialist and am now in remission with very few symptoms from that. However, my POTS is still an issue and does flare up during my periods, which I think is pretty typical. All the best to you and I hope you can figure out what is causing your symptoms and get some relief soon!
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