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Sick Sinus Syndrome?


anjuu
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Hey everyone,

I haven't been here for a while, but I have some queries about this disorder.

I have hooked up with a decent Cardio doc. He doesn't think that my POTS is really POTS at all, that it could be Bradycardia-Tachycardia syndrome, aka SSS.

I was 'diagnosed' with POTS in 2005, but when I brought my transcripts in to this new doc (this year), I saw that they had also diagnosed me with Sinus Arrhythmia/Sinus Bradycardia and Sinus Tachycardia (separate form the POTS). I love how DRs fail to mention kinda important stuff like that and you find out almost 5 years later.

Went to the ER last night because of heart pain (not chest) that felt like burning sharpness, first with Bradycard, then it switched to Tachy with palps and shortness of breath. It kept me from sleeping and was not relieved with sitting up, or laying down. Still have some pain sitting here typing this.

I've been feeling these new chest pains for a few months now, on and off, with varying intensities, but did not report them to the DR until today (have appointment next week).

Had X-rays, blood work, EKG at the ER, my BP was pretty even (100/60-normal for me), and of course, they found nothing and just dismissed the pain as arrhythmia (even though the ER DR said my EKG was normal). Am I missing something?

Is there anyone here with this disorder that can help shed some light? What questions should I be asking my DR? What should I be looking out for that could be serious? Are these pains serious even if arrhythmia is the only culprit?

I don't know if I should be concerned, or even embark on this wild goose chase. I really do not have any faith in DRs at this point, so I'm almost ready to just give myself to the universe and just roll with it. Any insights are appreciated.

Thanks for reading this,

-a

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I have SSS. I go in/out of A-fib, V-tach, Bi-geminal PVC'a and pretty much everything else you could name. I have a pacemaker to keep my HR above 48 - higher rate than that wears me out worse than I already am.

It is a constant "something is wrong, REALLY wrong" feeling and the 2 cardios I see both tell me all these things are "normal" when you have SSS.

Let me tell you, as a nurse who rushed her dad to the hospital when he had a stroke from throwing a clot due to A-fib, getting a LETTER from PCP's office (that was over a week old!) telling me "I" was in A-fib is daunting!! I called my cardio and 3 WEEKS later got a call... He was actually LAUGHING at me and told me "that's just how it is, you click in and out of A-fib all the time". This is when I went to another cardio and he told me he doubted I had EVER been in A-fib. He downloaded my pacer recording and said there was no A-fib on it. (But then, I kinda didn't LIKE him!)

So I sit here lost and uncomfortable like the rest of us with this stuff.

However, when someone tells me I need to exercise and get my heart rate up, I put on the BP cuff that measures pulse. It is routinely over 200.

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Thanks for taking the time to reply!

Sorry that you have to deal with two opinions that don't add up. That is very, very frustrating, and I'm glad that there are other people who can relate.

It's all speculation as far as I'm concerned, especially since I still don't know if I have POTS or something else that's going to take another 4 years before I know.

So, before you had a pacemaker, did you always feel crappy, or was it like a bunch of intense episodes with intermittent normal/fairly normal heart activity?

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I had problems once in a while prior to April, 2002, but then things started going downhill quickly.

Things after then went downhill rapidly then. But, like I said - the pacemaker in Feb 2003 has never helped.

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I have chest pain a lot!! I have irregular heart beat a lot as well. I have been in ventricual bigeminy...I have it all and many times feel like I ill die. But...when I rest...it can all get better...my cardio says not to worry...I usually let it go...I have always had bad EKG's after being upright and then in the morning it is normal again...so that is my story...

I don't know if that relates...it is a bad day for me...but wanted to add my 2 cents...

Erika

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