At wits end with tachycardia

So I was SUPPOSE to have an appt with my cardiologist today but when him and I had it out a couple months ago the dude cancelled my appts without telling me... How nice is that. Well I told his office that I have been having problems the last three weeks and that I really needed to get seen or at least have my pacemaker interrogated. They flat refused. Told me if I was having problems to go to the ER, that they would see me in two weeks. So I went to the ER. I spent a half hour with the medtronic rep telling him what I was feeling. I am set DDD rate 70-110 with a mode switch to essentially VVI at 130. So what he found was in my trends for the past 24 hours I am having atrial rates up to 170. Of course I go no higher that 110 in the ventricle but of course my atria just ticks along. My cardiologist is "fed up with me" and doesnt know what to do anymore. He keeps telling me that there is nothing we can do, that my pacemaker is working appropriately and responding appropriately. So what am I suppose to do now? I get short of breath, very mild chest pain, and bad palpitations occasionally with just walking but any time I walk up stairs or carry anything. At 31 years old, I do not feel like this is the quality of life I should have to except. Am I wrong? They refuse to add back in my flecainide which helped me before I got my pacemaker. I agree with the medtronic tech that at this point this is not a pacemaker issue that it is a med issue. I scheduled a second opinion on friday with a new cardiologist because I feel like I am not being treated. But I am scared that he is going to say the same thing. "This is what you have, we couldnt ablate it, this is why we put the pacemaker in, and you are going to have to deal with it". So, you experienced pacemaker pals, especially you people that suffer from atrial tach or have had an AV node ablation like me, what do you think? Please be honest

8 Comments

ep - I agree

by clemsongirl - 2009-10-29 04:10:21

I totally agree with TraceyE. Find an electrophysiologist. I have almost constant atrial flutter. I tried just about every med there is and had 5 ablation attempts. Each new try worked for a short time, but the rhythm always broke through. Ended up having my AV node ablated. Still have flutter, but no side effects. From what you've sound, it sounds like there are many options your doctor hasn't explored yet. If there isn't an EP in your area, at least go get that 2nd opinion from a cardiologist.

Good luck!

second opinion

by Tracey_E - 2009-10-29 06:10:03

I think a second opinion is the smartest thing you can do! Meds should be able to bring your rate down, and of course you feel bad when your atrial rate is 170 and the pm is only pacing you to 110! That's a very low upper limit for someone young and active. Why won't the dr turn your upper limit up?? Maybe I'm oversimplifying, but that seems to me like an easy fix.

Hang In There

by mike thurston - 2009-10-29 07:10:55

I am totally ablated and in permanent A-fib and my atriums apparently hammer away at a very fast rate. I have lost 1/3 rd of my heart muscle to heart attack and at 57 years old and too heavy I still can do a lot. I don't think you are off base by any means for wanting a higher quality of life, after all that is why we hang in there and fight to recover from our individual heart issues. I too run out of breath sometimes but I just pace myself and go at my own speed. My Pm is at 80 and 140 which seems to work reasonably well. 110 as an upper limit seems very low - is there a particular reason it is kept this low? I do get palpitations (pvcs) at times and it always scares me.
Hardly ever get them when I am active, mostly when I am just hanging out. Could be I don't notice them when I am more active. You seem very, very frustrated and angry and that is understandable for sure but it may make things a lot worse in terms of anxiety and stress which can definitely up those palpitations. Getting a second opinion can't hurt and it is important that you and the Doctor work as a team and not adversaries. Unless there are a lot of other heart issues I would think that you should be able to get better results. Maybe a trip to a specialty center like Cleveland Clinic would get you in touch with some top notch EPs and help you out. Best of luck.
Mike

upper rate

by sam78 - 2009-10-29 09:10:08

I actually had an upper rate of 130 for some time. Problem was that my atria was taking off so much that when I did go to a rate higher the 130, my pacemaker was getting "confused" as he best stated it. It would give two quick beats then skipped 3 beats, then a beat, then skipped 2 beats, etc which gave me a horriblly irregular ventricle rate. It felt aweful. So for the time we lowered the rate to 110 and put on the mode switch. This at least gives me a regular rate when my atria does race. We have talked about raising it a bit but since I really dont tolerate this fast stuff very well it has been one of the topics of debate. If my upper rate is set very high then I will just be at that rate more often... I have inappropriate sinus tach as well as atrial tach, so if my heart is allowed to race, it is going to. That is why I dont understand why they wont just put me back on my meds. They didnt do anything to stop the atrial tach, so now since they took me off my meds, I have worse atrial tach just that my ventricle doesnt respond. I cant stand to walk around with my atria and ventricle beating out of synch every time I have to walk a ways or walk stairs, or carry something, etc.

EP

by sam78 - 2009-10-29 09:10:18

yes my cardiologist is an EP doctor and I have a second opinion tomorrow with a second EP cardiologist in town. Going to try and go in with an open mind and see what he says. Heres to good luck!!

ep

by Tracey_E - 2009-10-29 10:10:30

I had another thought... you said cardiologist. Have you ever seen an electrophysiologist? They are cardiologists that specialize in electrical problems and may be in a better position to get a grip on your problem.

Dumped w/o notice

by ElectricFrank - 2009-10-29 10:10:40

If that happened to me and I could document it I would file an ethics report to the state medical board. Doing that with a heart patient could be fatal. You are lucky you didn't have a more serious problem.

When it comes to meds, be careful telling the cardio what you need unless you have really studied up on it. The prescribing information for flecainide is:
***
There is a chance that flecainide may cause new or make worse existing heart rhythm problems when it is used. Since it has been shown to cause severe problems in some patients, it is only used to treat serious heart rhythm problems.
***
He could be doing you a favor by not giving it to you.

frank

flecainide

by sam78 - 2009-10-29 11:10:55

Unfortunetly at this point Flecainide has been the ONLY medication that has been even somewhat effective for me. I know there are risks with every medication.

I have tried:
Diltizem
Rythmol
Digoxin
Sotalol
Cozaar

I think this is all.

You know you're wired when...

Jerry & The Pacemakers is your favorite band.

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