Amber Posted February 9, 2011 Report Share Posted February 9, 2011 I am so frustrated!! I have had pots for most of my life but was only diagnosed in 2008. I think it took so long because I also have mitral valve prolapse, CFS and Fibrbomyalgia and there was so much overlap in symptoms. Anyway I have been on BB and midodrine since then and was managing the daily dizziness, near-syncope etc. I could walk reasonable distances, like the mall, although slowly. Then suddenly last february I began having severe episodes of shortness of breath and chest pain/squeezing follwed by syncope whenever I exerted myself even a little. I often feel ike I am being strangled from inside my chest....my heart pounds in my throat and head too. I can't catch my breath and often have coughing fits. I become so debilitated that I need a wheelchair even to get to my bathroom. It takes me weeks or even months to get back to being able to walk even in walmart leaning on a cart. I get so pale I look dead and so lethargic I can barely speak. Every time its been bad enough that my hubby thinks I'm having a heart attack he takes me to the ER and other than a slightly elevated cardiac enzyme and some episodes of tachy, they can't seem to figure out why. Admittedly they don't really look hard...xray and bloodwork and then they always send me home to follow up with my doc. The best explanation I get is that my heart is not getting enough blood flow which makes sense but why all of the sudden and why in such severe episodes? I finally got to see my pots specialist today after waiting a YEAR because of him cancelling so many appointments and his answer was that my heart wasn't getting enough blood flow because of the blood pooling in vessels in my legs. But this explanation isn't satisfactory in this case for several reasons...1. I already knew I had that problem which is why I am on midodrine (even though he's never done venous testing on me)2. these episodes never happened before and nothing has changed3. the epsiodes can happen while laying down and especially while walking which is when venous return is supposed to be best due to the muscle motion helping squeeze the blood back up4. my blood pressure is not usually low during these episodes (sometimes its high)He suggests that I just need to exercise to strenghten my legs but I can barely stand up half the time and even if I could exercise, thats what I WAS doing when these episodes started. I only stopped exercising AFTER I became debilitated. He didn't listen to a word I said....I don't know whats going on with me and no doctor will help....they just pass the buck.... I feel like I am going to die of a heart attack before they figure out that I'm not over-exaggerating how severe and debilitating these episodes are.Anyone have this happen to them or know whats going on? Quote Link to comment Share on other sites More sharing options...
yuliya Posted February 9, 2011 Report Share Posted February 9, 2011 I am so frustrated!! I have had pots for most of my life but was only diagnosed in 2008. I think it took so long because I also have mitral valve prolapse, CFS and Fibrbomyalgia and there was so much overlap in symptoms. Anyway I have been on BB and midodrine since then and was managing the daily dizziness, near-syncope etc. I could walk reasonable distances, like the mall, although slowly. Then suddenly last february I began having severe episodes of shortness of breath and chest pain/squeezing follwed by syncope whenever I exerted myself even a little. I often feel ike I am being strangled from inside my chest....my heart pounds in my throat and head too. I can't catch my breath and often have coughing fits. I become so debilitated that I need a wheelchair even to get to my bathroom. It takes me weeks or even months to get back to being able to walk even in walmart leaning on a cart. I get so pale I look dead and so lethargic I can barely speak. Every time its been bad enough that my hubby thinks I'm having a heart attack he takes me to the ER and other than a slightly elevated cardiac enzyme and some episodes of tachy, they can't seem to figure out why. Admittedly they don't really look hard...xray and bloodwork and then they always send me home to follow up with my doc. The best explanation I get is that my heart is not getting enough blood flow which makes sense but why all of the sudden and why in such severe episodes? I finally got to see my pots specialist today after waiting a YEAR because of him cancelling so many appointments and his answer was that my heart wasn't getting enough blood flow because of the blood pooling in vessels in my legs. But this explanation isn't satisfactory in this case for several reasons...1. I already knew I had that problem which is why I am on midodrine (even though he's never done venous testing on me)2. these episodes never happened before and nothing has changed3. the epsiodes can happen while laying down and especially while walking which is when venous return is supposed to be best due to the muscle motion helping squeeze the blood back up4. my blood pressure is not usually low during these episodes (sometimes its high)He suggests that I just need to exercise to strenghten my legs but I can barely stand up half the time and even if I could exercise, thats what I WAS doing when these episodes started. I only stopped exercising AFTER I became debilitated. He didn't listen to a word I said....I don't know whats going on with me and no doctor will help....they just pass the buck.... I feel like I am going to die of a heart attack before they figure out that I'm not over-exaggerating how severe and debilitating these episodes are.Anyone have this happen to them or know whats going on?I have had pots all my life as well, and my episodes didn't become bad until this year and one of the reasons I finally got diagnosed. My symptoms became just like you have explained, and I finally was able to get a diagnosis, but not a treatment plan that works yet. POTS can get worse, and better. Sorry I can't really help with advise, all I wanted to say is I have the same exact symptoms as you and know how you feel. Quote Link to comment Share on other sites More sharing options...
Amber Posted February 9, 2011 Author Report Share Posted February 9, 2011 Thanks Yuliya! Sorry to hear that you experience the same thing.I guess whats throwing me off is that is doesn't FEEL like POTS to me. I am used to potsy days where I can't even sit up because of faintness but these new episodes feel more like I'm going to pass out due to pain, and constriction in the chest and shortness of breath. Like suddenly my heart has just stopped in my chest.....its a horrible feeling and one that I never really thought was a POTS thing..... I guess we learn as we go... 8 )thanks Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted February 10, 2011 Report Share Posted February 10, 2011 Good you saw your cardio. You do have to make sure the heart is "ok." POTS does this to me. Chest pain, like a big pinching feeling. Painful. Shortness of breath too. This used to be much worse. CoQ10 and all of my other supplements like Mag. have helped this greatly.The "air hunger" is rare now thankfully. I hate that. POTS makes each day an ADVENTURE! Not in a good way as we know. I am improving so much, but I still never know how each day will be. I put stickers on my calendar to keep track of how I feel. Silver, orange, brown, purple...and BLACK. Thankfully I never have to use black since I am better. Quote Link to comment Share on other sites More sharing options...
Godsgal Posted February 10, 2011 Report Share Posted February 10, 2011 I get shortness of breath and a host of crazy symptoms myself. I would push for a holter or event monitor so you can be monitored during these episodes. That would give your doctor an idea of what your heart is doing and make you feel a world better if there's nothing weird happening. Quote Link to comment Share on other sites More sharing options...
Godsgal Posted February 10, 2011 Report Share Posted February 10, 2011 One more thing....I get labored/difficulty breathing episodes if I do certain things (stairs, singing, reading books to my son) or eat certain foods or am exposed to chemicals (hair spray, perfumes, candles). Try to see if there is anything that you are doing that happens each time. Just trying to help. I'm sorry you are going through this. This is such a tough condition we all have and try to stay positive. Praying for you today Quote Link to comment Share on other sites More sharing options...
E246 Posted February 10, 2011 Report Share Posted February 10, 2011 Hi,Sorry you are going through this. i have started and replied to a number of post about chest pain as it is or was my biggest problem.i am having a few investigations to make sure there is no underlying cause. However i started a calcuim channel blocker a week ago and this dilates the blood vessels which in theory should not be good for pots but it has made a massive difference to me. At last the chest pain has cleared. I still do not know if this is because i did have some sort of angina. And i hate taking medication but am just relieved to feel a bit better.I would insist they do not fob you off and actually take the time to find how to relieve the problem.Best of luck.Emma Quote Link to comment Share on other sites More sharing options...
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