yet again frustrated... need some advice

GRRR well I am back to being frustrated yet again. I get to go see that fine cardiac dude next week. Short recap- had pacemaker installed in july and complete AV node ablation for atrial tach and inappropriate sinus tach. Had a lot of issues getting the right settings and ended up back on almost all of my heart meds again. I have been on flecainide and metoprolol for now ohh about 5 years. Everytime I try to come off the metoprolol, I end up back on it for one reason or another both blood pressure control and lowering heart rate. Flecainide has been a miracle drug.. tried being off that after my pacer and flat failed that for several months. I have done well in that I dont have the racing of my heart rate every day. However I now have 2 problems. One is flecainide is causing my WBC to drop into the low range. I seem to bounce up and down and at this point the hematologist cant find any reason for it and believes it is the drug. Right now the benefits outweigh the effects so he agreed to keep me on it. Secondly I am still unable to do any form of exercise what so ever. Walking up stairs I feel like I have ran a mile. Get short of breath and have to sit down. Even just going for a walk seems to overly stress my heart/lungs. I would really really like to get off of this metoprolol because i am on a good dose and I think it is what makes me so dang tired. I take 100 mg a day of the xl. These are the exact same problems that I had prior to my pacemaker. Something has got to give with exerting myself. I do get some chest pain with exertion. Flecainide works so well compared to the other meds I have tried (although it doesnt work that well) I hate to come off of it. But I dont know what else to try. I have been on cozaar, diltiazem, sotalol, rythmol. I know I have to be on something else beside the antiarrhythmic,,, but what else? I have two thoughts about the exercise problems... i think that they need to consider a stress test and I wonder what my pulmonary pressure do with stress. Any thoughts out there?

4 Comments

why still in tachycardia?

by golden_snitch - 2010-01-13 04:01:57

Hey there,

just one question: if you had a complete av-node ablation then why are you still experiencing tachycardia? I mean, even if the sinus node or whatever in your atriums is still racing sometimes, these fast impulses shouldn't reach the ventricles. After a complete av-node ablation the pacer senses the rate in the atriums and usually it just makes the ventricles beat at the same rate. However, when you are in inadaquate tachycardia (at rest) the pacer should know that this is too fast, and while it can't do anything about the atriums beating that fast, it can make the ventricles beat at a slower, more appropriate rate. Otherwise a complete av-node ablation as a treatment for atrial tachycardia wouldn't make sense at all.

Have you tried other betablockers? I don't tolerate the Metoprolol well either (it made me very tired, and even depressed), for me the Nebivolol works best. For blood pressure control there are other meds than betablockers, for example ACE inhibitors.

Best wishes
Inga

I had problems with exertion

by Bionic Man - 2010-01-13 05:01:36

I went to see my Dr after being on Flecanaide and Metropol for about 6mos. I had no energy. Simple tasks had become difficult. I was given a chemical stress test and went down in flames. I was in far better shape prior to my pacer. He told me I had a slightly dilated cardiomyopathy. Possibly caused by a viral infection. Any exertion no matter how little and I'd have chest pain, shortness of breath and I'd be weak. I was taken off both medications and put on Sotalol. I've been fine since. He told me my heart was slightly enlarged months before my pacer surgery and couldn't believe no one told me.
All I know is this guy fixed the problem and allowed me to go back to my busy schedule without any problem.

tired

by Tracey_E - 2010-01-13 05:01:39

I was on metoprolol for 6 weeks and couldn't stand it. I napped every single day, it made me dizzy and my brain was a constant fog. I'm on atenolol now and not noticing any side effects. It doesn't keep my rate down as well as the metoprolol did but it's down enough that I can deal with it. I asked for bystolic because after polling the members here that seems to be the one with the least side effects, but my dr was afraid it would lower my bp too much (it's borderline low to begin with).

A stress test isn't a bad idea, see what happens on exertion under controlled conditions. I've had several programming issues diagnosed that way.

Have you had a second opinion on your pacer settings? Sometimes fresh eyes will catch something the others are missing.

feedback

by sam78 - 2010-01-14 06:01:11

Thank you for the feedback...

Inga... it is hard for me to explain but let me try... my atria still races which puts me into essentially 2:1 or 3:1 heart block because my ventricle doesnt respond (ie because of the ablation). This makes me feel terrible. It also confuses my pacemaker and gives me an irregular heart rate (cant explain that one but documented on my strips and doctor said I am stuck with that one).

Tracey- how is it that they were able to fix you? Did you get your doctor to be present when you had your treadmill? I have only done one (prior to pacemaker which i failed miserably) and there was only the tech there. Also I know you have very similar problems to me, are you on anything other than atenolol?

Bionic man... I know I have no cardiomyopathy as I have had several echos.

You know you're wired when...

You can hear your heartbeat in your cell phone.

Member Quotes

The pacer systems are really very reliable. The main problem is the incompetent programming of them. If yours is working well for you, get on with life and enjoy it. You probably are more at risk of problems with a valve job than the pacer.