EM and Supraventicular Tachycardia

Has anyone out there have supraventicular tachycardia>. In other words a fast heart rate >100 but mine has bee at least 250 or greater. I have been having this since I have been diagnosed with EM. As of last week, I was rushed to the emergency room for a heart rate of 250 bpm. This is my second visit to the ER and one of several episode of a fast heart rate >250 bpm. Finally they decided to keep me and do an EP study on my heart and found where the abnormal rhythm was coming from. In order to fix the repeated heart rate, they performed an ablation to my heart and said that I was having AV nodal reentrant tachycardia )AVNRT).


That must have been a frightening ordeal! I'm sorry you went through that.

I don't have that problem, but thought I'd mention that some of the people in my family who have our undiagnosed medical condition (many with EM) also have SVT. I know at least one had the ablation procedure. a geneticist thinks the underlying condition in our family that causes our EM and several other secondary disorders is probably a Heritable Disorder of Connective Tissue similar to Ehlers-Danlos. I think there are a couple hundred different HDCT's. Your post made me think that maybe your SVT is a part of an undiagnosed disorder you have that also causes your EM.

Just a thought. Could be wrong.

thanks for trying to help me figure this out. still no answer as of yet. i will say having EM an MGUS can both have something to do with it. in the meantime i am open for any suggestions.

I have a persistant polyclonal gammopathy that the docs don't know the cause of. I have a Hereditary Disorder of Connective Tissue (eg, Ehlers-Danlos), Mast Cell Activation Syndrome and Orthostatic Intolerance in addition to Erythromelalgia. The first three seem to often go together and I've found a few other people who have all 4 together although most seem to have POTS rather than Orthostatic Intolerance diagnosis (both are dysautonomias). Did you have tilt table testing?

Did you see a great rheumatologist to check for Sjogren's, Scleroderma, Lupus and other AI diseases? And also a great hematologist to look at myeloproliferative disorders or other blood disorders? Sjogren's can definitely cause MGUS and EM. And I think Scleroderma and Lupus also can, so that's why I specifically mentioned those.

I'm just brainstorming here. I know how extremely frustrating it is to suffer with EM and have a gammopathy, which maybe is a clue to the cause of the EM, and yet still not have answers. I've had EM for 19 years and the other symptoms of the other disorders as well. But the other disorders were only finally diagnosed for me this year.

Best of luck in your search. Feel free to ask questions about my disorders if you're so inclined. Or to just share thoughts with me and others here.

Hi Char,

I know this is old but wanted to respond as I recently was also diagnosed with SVT following a scary trip to the ER. Mine too seems to have appeared since my Primary EM symptoms have become more pronounced in the hot climate I'm stuck in (I used to live somewhere cold but developed Raynaud's w/EM still undiagnosed at the time). And the heart palpitations seem to often be triggered by EM flares. I was curious if you ever learned anything more after this post?

So far I know that in addition to the SVT and having an abnormal T-Wave, they Echo revealed I have mild insufficiencies with my Tricuspid and Pulmonic valves without pulmonary hypertension. I should also state that from childhood through my teenage years, I suffered from undiagnosed POTS-like symptoms, so question how long my heart has been 'insufficient' lol :-)