little_blue_jay Posted January 1 Report Share Posted January 1 I've been in a bad flare for weeks. Went to the ER last Wednesday, 2 EKGs normal, 2 troponin tests normal, all other blood work normal, chest xray normal. Just doing so awful, I feel wired for sound. Slightest thing like the fireworks earlier making things worse even though I knew I'd be hearing them.. It's almost a feeling of being on the verge of a nervous breakdown, just due to feeling so awful, tachycardia from going to the washroom etc and of course anxiety being a symptom of this h*ll so it perpetuates a vicious circle... (And the day after I went to the ER I was better, was able to wash my hair, bathe, wash dishes, appetite was a little better. Coincidence?!) Anyway has anyone ever heard of someone having a heart attack from POTS? I thought the body always tries to reach homeostasis/balance.. Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 1 Report Share Posted January 1 @little_blue_jay I have never heard of someone having a heart attack from POTS alone. Of course someone with POTS CAN have a heart attack, but probably not from the dysautonomia. Since your cardiac enzymes and EKGs were normal you should not get too worried. However - I know how scary and uncomfortable the symptoms are, I too have had a few trips to the ER thinking I was having a heart attack in the beginning of this illness. Since then I am so used to the symptoms that I can definitely tell if it is "just POTS" . Having said that - if you are not sure its always better to get it checked out, like you did. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted January 1 Report Share Posted January 1 @little_blue_jay, I’ve watched/read maybe hundreds of lectures and articles about POTS, and heart attack is never mentioned. One article that might help you is this one, in which researchers used various measures to look at the decrease in quality of life in 94 patients with POTS. They found that the impairment experienced by POTS patients in their lives were at a similar level to people with COPD and other diseases/conditions that are considered very serious in medical circles. https://www.mayoclinicproceedings.org/article/S0025-6196(11)61995-2/fulltext The unusual thing about POTS and other types of OI is that people can feel so awful, and be so disabled, and yet by most measures appear to “have nothing wrong” in terms of their heart, for instance, or a standard blood panel. Can your specialist adjust your medication, or make any suggestions? If you feel better after IV saline, any chance of your doctor ordering this, or getting it at a “medi-spa”? I hope you feel better soon. It’s worrying when things get worse and you wonder whether you will return to baseline. Quote Link to comment Share on other sites More sharing options...
little_blue_jay Posted January 1 Author Report Share Posted January 1 2 hours ago, Sarah Tee said: @little_blue_jay, I’ve watched/read maybe hundreds of lectures and articles about POTS, and heart attack is never mentioned. Can your specialist adjust your medication, or make any suggestions? If you feel better after IV saline, any chance of your doctor ordering this, or getting it at a “medi-spa”? That's reassuring, thank you! I think I've come across that article a long time ago.. I don't have a specialist. I had a cardiologist at one point after the first time I got covid as it exacerbated my POTS, but at some point I improved and he said he didn't need to see me anymore.. I don't get given saline at the ER.. and I really don't think we have those medi-spas here (Canada) , not that I've heard of anyway.. Quote Link to comment Share on other sites More sharing options...
little_blue_jay Posted January 1 Author Report Share Posted January 1 3 hours ago, Pistol said: @little_blue_jay I too have had a few trips to the ER thinking I was having a heart attack in the beginning of this illness. It's not that I think I'm having a heart attack while it's racing... it's more that my nervous system feels so "wired" and on edge, and that my heart rate varies so wildly from one minute to the next, and I can feel like I'm plugged into a wall socket, internal shakiness, jittery, etc that I'm afraid whatever is dysregulating my ANS is just going to cause a heart attack, just from being so dysregulated/out of sync.. I see my doctor Wednesday (assuming I can get there, last time I had to make it a phone appointment) so I'll ask him more about this.. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted January 1 Report Share Posted January 1 @little_blue_jay, I have experienced the same things you describe! Last fall I was experiencing severe swings in HR (40-200) and BP (60/30 to 210/110) with any sitting or standing or activity. The higher the values the more symptoms I would experience, severe chest pain, palpitations, hands/feet/head excessive sweating. I also have a 10 year history of abnormal EKG’s and Echocardiograms. I too feared a cardiac event and had 7 ED visits, and saw 5 Cardiologists. Of course at each medical interaction they would have me lay down and (after too) many minutes check my vitals, WHICH HAD STABILIZED BY THEN (120/80 60). It was very frustrating and scary. I said goodbye to my wife 3 times! My doc, mother, wife and I thought that I was dying! Then three things changed my course. First my doc put me on Metoprolol. This reduced my HR max to 185. Then I was diagnosed with Dysautonomia/POTS. Once I found out my hydration and salt needs my vitals were much more stable and the symptoms I described greatly improved. Now I am 2 months into the CHOP exercise program and even with standing and activity my vitals are around 130/85 60! Just my story but I hope that it brings you some comfort. Good luck and best wishes and prayers. Quote Link to comment Share on other sites More sharing options...
MikeO Posted January 1 Report Share Posted January 1 Yes i know one Gal that coded on a tilt table test. She was not on meds at the time. While she did do well initially she did go sudden tachycardia and was telling. sure it was not a heart attack per say just more of it was too much to handle. Beta blockers are a POT friend i'm leaving out the (s) cuz there are so many chronic issues that fall into the syndrom portion. Being a cabg 4 person i can tell you i know what a heart heart issue feels like or when i become vasoconstricted and i know it. not sure if POTS will cause a heart attack out right but my one number one symptom is it feels like someone is squeezing my heart and i start heaving and whoosh a bit. Stress can bring this on as well. If you feel like you are having a heart issue i do encourage to be checked. I have been stressed tested while on meds so we know they work for me as i can't even hit my expected heart rate. The right meds have helped. Best.....Mike Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted January 2 Report Share Posted January 2 @little_blue_jay, I’m sorry you don’t have a specialist at the moment. I know there is a good POTS support group for Canada on Facebook. I joined once briefly when I was researching something. Maybe they could help. I did a quick search and there are “medi-spas” in Canada in the major cities. You could ask on the Facebook group and see whether people are happy with one near you. Some people feel comfortable using them, others don’t. (Because it’s not a hospital environment.) I don’t have POTS but I do know that many (but not all) POTS patients can benefit from IV saline in a flare. I’m from Australia and I think our health systems are fairly similar. There is good and bad in each model, I think. There are long waiting times for specialists in the public system here. I was able to go private – still a fairly long wait – because I moved back in with family to reduce costs and can use my govt pension to pay for appointments. Up to a point, anyway. Quote Link to comment Share on other sites More sharing options...
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