Frustrated

[mkoven]

Just had my last appt at Cleveland. I had a lot of testing, the upshot of which is that I have confirmed pots and orthostatic hypotension. My blood pools excessively and my heart is hyperkinetic. Otherwise my autonomic reflexes are intact. The doc doesn't think the symptoms are from eds, though I don't remember why not. That was all good information.

But my main complaint is ongoing chest pain. Still no answers. The ans doc doesn't believe it to be from my ans. And the other cardiologist she sent me to doesn't really think it's from the heart muscle. The ans doc would not say she thought it was benign, and repeated that I have to return to the ER EVERY time. She referred me back to the other cardiologist, who prescribed a nitro-patch, but doesn't really think I'm having spasms, but is willing to try out the patch. I'll try it tonight. I don't know if the doctors will talk to each other, but each is sending me back to the other, saying my symptoms are not caused by something related to their subspecialty.

No real direction about what to do next. I'm frustrated and disappointed. I'm going home with the same question I arrived with. Why all the chest pain and what to do about it; is it dangerous, etc.

[Maxine]

I'm sorry Mkoven----

Do you have any back pain in your thoracic---mid back? I have pain that spreads from there to my chest all the time--------lot's of sharp pains (referred pain)-------------scary, but I know what it's from. If I shift my weight, or move into another position it will go away, or I'll be able to tell it's from that region at least.

EDS can also cause pain in the sternum, and chest. A lot of doctors (even good ones) have no Idea on how much EDS affects our system.

I hope you can find the source of your pain soon, pain in the chest is very disturbing, and I can understand your fears and frustrations.

Keep hanging in there the best you can dear.

Maxine :0)

[Bella127]

I read the part about chest pain, and it reminded me of a visit to the doctor I had a few years back. I got the same thing, although the chest pains were kind of sporadic. Are yours this way too? What kind of pain is it? (Stabbing, sharp, dull, etc.)?

I don't know how true this is, but the doctor there said that if you can recreate the pain (push on the area on your chest that hurts; and when you touch it, it hurts) then it is NOT a heart-related chest pain. Makes sense. I do that when I get them even now, just to reassure myself that my heart isn't going bonkers. Although from what I've heard from others, I do think chest pain is a common symptom of POTS. Maybe this is because our heart is kind of overworked and trying to pump blood to all of these areas, bring up BP, etc.? I know many people have chest pain as a part of POTS, although I'm just not sure exactly how that symptom is caused. Anyone have any input?

One thing that doctor DID tell me that could easily cause pains in the chest was dehydration. I have been drinking a LOT of water lately and have noticed that my chest pains are better. My neuro also told me that if you ever FEEL thirsty, that means you are already dehydrated, because your body is sending you "warning signals" (the feeling of thirst) that you need to drink. I don't see myself as "dehydrated", because when I think of that, I think of someone crawling along a desert, gasping for air, who hasn't had a drink in days or something - but in reality most people ARE dehydrated because we just don't realize we don't get enough. I'm still trying to drink as much as possible, although sometimes I feel like a walking water balloon.

Do you think being dehydrated could be a factor for you? Have you ever asked about this, or had a doctor bring it up regarding the chest pains? Anyone know exactly why we get chest pains with POTS?

Hope you find some answers soon!

Chrissy