What Are The Benefits Of Seeing A Cardiac Electrophysiologist?

[megsmit6]

SInce I cannot get into the Mayo Clinic till April my cardiologist is sending me to an electrophysiologist to confirm my diagnoses. I honestly think it will be a waste of time when my cardiologist is 99% sure I have POTS those were his workd exactly. Can the CE recommend a better treatment or something? I just don't know what to expect......

[Guest Alex]

Hi megsmit6,

I've seen an electrophysiologist as I had some 'funky' looking ECG's and I was desperate for some answers.

I wouldn't say the visit was a total waste of time, as the dr was extremely knowledgeable, just not knowledgeable about POTS.

After about 5 minutes of looking at some ECG's he suggested an ablation for me (not a sinus node ablation though) as he suspects I might have an extra electrical pathway in my heart. He also said that chances are he might not actually be able to trigger this 'arrhythmia' during the procedure as it happens so infrequently (I've had it documented once or twice in 18 months and I've never been symptomatic during these so called episodes). He did reassure me though that this is not a life threatening issue - which gave me peace of mind.

When I asked him about POTS and the impact (be it positive or negative) such a procedure might have on my symptoms he admitted that it was outside his area of expertise. Needles to say I declined the ablation.

It's obviously up to you if you want to go ahead and see this dr or not. From what I know, some EP's are actually POTS specialists as well, maybe this is why your cardio dr wants you to see his colleague!?

Best of luck,

Alex

[SeattleRain]

I would agree with what Alex said.

My TTT was performed by a CE. He was somewhat familiar with autonomic dysfunction and POTS when I first met him and before the TTT he read a bit of POTS literature just to get a better understanding. That may have helped his understanding of what's known but in the end I think he was still pretty skeptical about it.

If you can find a CE who's willing to work with you it won't matter as much if they're not a POTS expert. If they're willing to read the literature and work to help with you I'd say it'd be worth it.

[bebe127]

Megsmit6,

I also concur with Alex and SeattleRain.

An electrophysiologist is a specialist in cardiology. However, just because they are a specialist in cardiology doesn't necessarily make them a specialist in POTS or Dysautonomia. I've seen two EP's and I'm fixin' to see a third. The first one was my dx dr., however admitted that he didn't know much about the syndrome and didn't know of any dr.s that treated it. The second EP (I was referred by a friend that is a dr. and this EP was 1.5 hours away in the next county) was supposed to be a "specialist in POTS", he unfortunately turned out to be a bust and told me I needed to see someone closer to home, that he couldn't help me and suggested I see a psychologist. The third, I have yet to see, but hope to see in the Spring. He was referred by a friend who's daughter was dx with Dysautonomia and my friend has worked with this particular EP in the ER and the EP is supposed to know about Dysautonomia. I'll have to see what my future holds.

I agree with Seattle on the issue of the importance of a dr. being willing to listen and work with you and not necessarily being an expert in POTS, although if they truly are; that's a bonus

Hope you find some answers and relief soon.

[megsmit6]

Thank you everyone for the information! I really appreciate it. I will let you know how it goes.

[yogini]

Are you going for testing? Like a tilt table test? Electrophysiologists specialize in heart rhythm. If your cardio doesn't know what to do, maybe he is hoping that the EP will better know how to treat you. He probably also wants to rule out other conditions. Try to keep an open mind.

[megsmit6]

After seeing the EP and having a tilt table test (doing it twice in one day, the second one was after a dose of midodrine to make sure it would work) at a cardiac institute the EP took me off the beta blocker and gave me midodrine and florinef. He also diagnosed me with NCS. Thank you guys for encouraging me to keep an open mind. He seems very knowledgeable and willing to treat my POTS and NCS. I have renewed hope in finding a treatment that will work.

[Lemons2lemonade]

sometimes they have a better idea on medications to use...at least that is what happened with me.

[Aimes]

I'd like to chime in here and share my story. My diagnosis began with an electrophysiologist. He diagnosed me with SVT and after failed attempts at using every beta blocker known, suggested an ablation. This was a terrible experience for me. The procedure took nearly six hours, I didn't respond well to the anesthesia and had seizure like episodes and stayed awake even though I had anesthesia. I could not feel anything but was awake and talking the entire time (this tends to run in my family as my brother stayed awake during his appendix removal also). After the ablation, my heart raced 24/7 for three months. It was terrible trying to sleep with a racing heart. Thank goodness it healed itself and went back to my normal of only racing when I stand. After that I went to Mayo and was diagnosed with POTS and was told ablations are not good for Potsies. That all happened in 2007. I am now having a terrible flare after having surgery to remove my gallbladder and am suspecting MCAD. That would explain my terrible reaction to the anesthesia and the months of racing heart after the procedure. I don't share this story to scare anyone. I don't in anyway feel that the electrophysiologist did anything wrong or could be to blame for what happened. He is an excellent doctor. However, his specialty is on one area of the body. Many of us Potsies have issues with all of our systems. Our racing hearts aren't the actual problem, but a symptom of a bigger issue. Going to an electrophysiologist is not a bad idea. It was a critical step in my diagnosis. However, I wish I would have gone to Mayo before I had an invasive procedure done. Second, third, or fourth opinions are never a bad idea!