I've been to three different cardiologists and had cardiac stress test, echo cardiogram and CT scan. Nothing was found abnormal in any test. I'm still having chest pain. My heart hurts lying still and after exertion, could there still be a heart problem or is this just part of my ME and Fibromyalgia pain?
I'm also having a lot of issues with POTS/OI. When I stand and walk a few steps I get light headed, my legs go limp and I go down. Is this associated with a heart condition and/or is there any treatment for it? I am currently taking Mestinon 30mg three times a day for the POTS but it's not helping at all.
Hi Jerry,
I have also seen three cardiologists over the last few years and currently seeing one who is knowledgeable with dysautonomia and who took my issues very seriously and hospitalized me for tests back in Sept. I had the CT angiogram which showed my coronary arteries are normal with no blockages and an echocardiogram (both laying flat and standing which was normal.) I very much wanted to figure out if I had a separate cardiac issue (in addition to ME/CFS and dysautonomia which I knew I had.)
I had an ischemic response on the ekg portion of the treadmill test (with my former cardio) but as far as I know this was a "false positive" once the CTA was negative (or it may have been due to low blood volume.) My new cardio is also undecided if I have "Microvascular angina" but at this point, it seems unlikely.
In my case, all my horrible cardiac symptoms appear to be due to ME/CFS itself and to dysautonomia. I am currently taking Atenolol to control inappropriate sinus tachycardia & POTS type symptoms, Midodrine b/c my BP is very low all the time, prescription Potassium (plus some unrelated stuff like thyroid med and Famvir.) I also try to drink as much water and electrolytes as I can like Pedialyte and Vitalyte to try to increase my blood volume.
Someone recently mentioned Mestinon to me but I have never taken it and have not had a chance to research it yet. My cardio is wanting me to switch from Midodrine to Droxidopa but for now I am going to stick with Midodrine. Have you had a Tilt Table Test and does your BP go really low?
Another option for many is IV saline (for low blood volume) but this was disastrous for me and sent me to the ER and not a treatment that I am able to do.
Since changing around my Atenolol dose and increasing my Pedialyte, I have not had any tachycardia or angina type symptoms. However, my BP still remains pretty low and I still have shortness of breath if I do too much (which for me is still practically nothing!)
ETA- I also wanted to add that I had several Zio Patch studies done (like an extended holter monitor study) which ruled out any kind of arrythmia in case you have not done that.
Best wishes and I am sorry you are dealing with all this.