Still not feeling that great

Hi Everyone,

I had my pacemaker implanted 7 weeks ago now and I have to say that I feel the same as before. After the implant he had the resting heart rate set to 70 bpm, for me being a cyclist that was just ridiculous, I'm used to a resting heart rate of 38 - 40. I convinced him to lower it but he would only go to 60 bpm, it still feels like a train in my chest. He had the upper limit set to 130. I had started walking a lot in the mountains around here, not leisurely but at a very fast pace. When I was walking on the flats my heart rate would go to ~125 and I would feel fine but the moment I started going uphill, with a lot more effort, I started to feel my heart jumping around a lot but my heart rate was only at 109!! I was guessing that the pacemaker and my heart were fighting for control. When I cooled down I felt "normal". I started to get dizzy a lot and my wife was thinking that it had something to do with the PM but I just contributed it to an increase in exercise and a change in diet. So I went for a revision and he told me that everything was ok but I had had an episode of tachycardia and the strange thing is I never felt it, it happened on a day *before* I started exercising again.

I convinced him to increase the upper limit, which he did, to 150 with a sensing rate (I have no idea what that is) of 160, he still refused to lower the resting heart rate. Now I started riding my bike again and I have to say I feel horrible. I know it's because I am really out of shape but also as soon as I start riding (very slowly, with no intended efforts) I feel my heart jumping all over the place, it feels like my heart is in my throat and that I have tachycardia again. But when I'm walking I can give more intensity without this happening. He told me that I have the accelerometer and the rate response features turned on. Could this be causing me problems? He said my SA node is *ok* (maybe not the best but not bad either) and I believe that I don't have any problems with increasing my heart rate under my own effort.

does anyone have some possible insight to these problems?
Also can someone explain what this sensing rate is and I was diagnosed with "Low atrial tachycardia" what exactly is that? )I think that's what it is in english, in spanish its "taquicardia atrio bajo")

Another thing is when he checked the pacemaker he had said that I recaptured my normal rhythm and that I was no longer in complete heart block but after a few minutes it returned. Is it possible to recover from complete heart block (I have complete heart block with good escape rhythm) and get rid of the pacemaker?

5 Comments

Setting Issues

by wiredwoman - 2009-07-21 05:07:24

Sorry to hear you're having some issues. It's no fun going through all this hoopla to come out feeling the same!

There are people here who are way more knowledgeable about the intricacies of these little wonders than I am - and you'll hopefully hear from a couple of them. As a relative newbie - Feb 09 - I also was having some problems when I exercised - getting winded more easily than I would expect. My settings were 60 low, 130 high - which are as I understand it, what they give most people to start - but they're really not the best for active folks.

My higher rate was recently upped to 160 and I no longer feel like my heart and the pm are fighting for control, as you so accurately describe it. Rate response is not turned on for me. I've read that RR can be tricky and take some getting used to, so perhaps that's a contributing factor. If your sinus node condition is in that gray zone of "okay'" maybe you'd be able to try it without and see the difference?

Anyway, I wish you luck in getting it sorted out. I'll bet it's just a matter of tweaking the settings. Hold that thought!

**wiredwoman

Get a new doc

by Cyborg Runner - 2009-07-21 06:07:06

I am also an endurance athlete, mostly running though I bike some as well. Our hearts sound similar. Though my symptoms led to a quick surgery and a pacemaker, I switched immediately after the emergency work to a doc who does a lot or running who understands that athletics are a big part of my life, as they are his.
My lower limit is set at 35 and the upper at 180 or 185. My pacemaker is a Medtronic Adapta that is supposed to be better for athletes.
When I started back running, 2 days after my pacemaker, my heart rate would shoot up after a short while to 180+. I ended up having 3 cardiac ablations which took care of the situation of the "jumping up" heart rate. I now train harder than ever. Yesterday I ran 14 miles in the morning and 5 at night. I am getting ready to do at least 15 400's tonight.
Find a doc that understands, and cares about, your situation.
Don't give up.

settings

by Tracey_E - 2009-07-22 08:07:42

I'm sorry to hear you aren't feeling better yet!

Most doctors don't have athletes with pm's so as cyborg runner pointed out, it can be a challenge to get them to listen to you. They're used to sedentary patients who are a lot easier to program because they never test the limits.

Do you have a copy of your last interrogation report? If your SA node is functioning normally, you do not need Rate Response but sometimes they leave it on anyway. RR can cause some of the symptoms you are having.

Did they say what type of tachycardia?

If you're working out and suddenly get dizzy/tired, it is likely that your atrial rate is above the upper limit of the pm. Mine is at 170 now (as high as this model goes) and I still bump it sometimes. I have to be careful when I work out to keep my hr in the 160's. I can tell when I go higher than that because I get dizzy. A simple way to find out what's happening is a stress test. They can watch what your heart does on exertion and adjust the programming accordingly.

What may have happened when you were at 109.... I had a similar problem, this is what happened to me. Pm's have a safety feature for episodes of afib. If your atrial rate gets too much higher than the pm's upper limit, the pm may think you are in afib and put you into a 2:1 block- so if your atrial rate is 200, the pm may temporarily skip every other beat and only pace you to 100 even tho your upper limit is higher. Then the pm goes back to regular pacing you as high as the upper limit. When this happened to me, I almost passed out on the treadmill. I was chugging along at 160, the pm knocked me down to 120, then back up to 160, etc. Does not feel good!!! It took several tries and two stress test but they got my programming tweaked and now I'm good to go.

When you hit your lower limit, ask if your atria is setting the pace or the pm. If it's the pm, then ask them to pretty please let you try it a bit lower temporarily. Sometimes that word temporary will get them to go for something they usually don't do. My hr was always in the 40's before my pm also, but my natural atrial rate was a lot higher, the signal was just getting blocked. So, my hr rarely goes below 80 now but it's all me, not the pm. The pm is only making sure the ventricle keeps up with what the atria wants to do naturally. If this is the case with you, adjusting the lower limit won't make a difference and the racing/train feeling is just something you'll have to get used to. I don't even notice it now, tho I did for about the first year.

I'm sorry to say it's not likely you'll recover from a complete heart block. They told me recently that I was beating on my own "a lot more" and I got all excited that maybe I was healing or something and not needing the pm as much. Then I asked how much I was pacing.... drum roll please... 99.1%! Which is (for me) a huge drop from the 99.9% I had been consistently pacing for the last 10+ years. But still nothing to brag about LOL and I definitely still need the pm. "Complete" doesn't necessarily mean every single beat all the time is blocked so sometimes we can beat on our own but not enough to depend on.

I sure hope you get it straightened out soon! If your doctor isn't responsive and willing to work at finding a solution, it may be time to find a new doctor. I've always been the only young, active pm patient at my dr's office so I can't hold it against him when occasionally things have come up that he hasn't dealt with before, but he's always been willing to go the extra mile to find a solution and keep me feeling good. I hope you find that soon, also.

One Month Pacer - Talk to your doc

by COBradyBunch - 2009-07-23 04:07:38

I am a one month pacer and a long time cyclist and have just started to exercise again. My low end (my issue is that I brady down to zero for several seconds at a time) is 50 and my 'upper end' is 120. Now my low end is a solid number according to my pacer tech and the pacer will ALWAYS kick in if it sees me drop below that (my RHR was high 50's). My upper end is only active in very specific circumstances (not exactly sure what they are but my tech said it will probably never go off up there). At first they were going to set me to allow higher HR's when the system senses movement but since I put a fair amount of time in on my trainer I told them this wouldn't do and they changed things beyond that. They also originally had me set to 120 but when I told them I routinely hit mid to high 140's on effort and actually can go over my 'theoretical max' on some climbs in the mountains that I needed even the base set higher.

Anyway since we don't know exactly what your problem is your doc might have valid reasons but I would work a lot with your tech. She/He will probably have a real good handle on what you can and cannot be set at and should work with you to get something that works. BTW, took my now electronically enhanced heart up above 150 for the first time since implantation today and honestly, I feel better today than I have since I had it put in. Think I just needed to get everything moving and a good flush of the circulatory system.

8 OK Years with a Pacemaker

by philip.kessel - 2009-07-29 05:07:51

I've had a Medtronic Kappa 403 model pacemaker for eight years now and it works fairly well for me. My problem was the so called sick sinus syndrom which I thinks means that the antrium would not fire correctly. This dual mode pacemaker controls the antrium and ventrical according to breathing rate and acceleration. After about six months of adjusting my settings are maxed out to give me a RHR of 50 and a MHR of 80. Hardly ever hit 80 except when I climb hills cycling or on cross country skis. Things are not bad; however, after eight years the battery has worn out and I need to replace the pacemaker. The bad news is Medtronic no longer makes breathing rate controllled pacemakers (minute ventilaton) so I have to find another manufacturer. Does anyone have experience with the new models from Boston Scientific or Biotronic? I anticipate having trouble with the programming logic that shuts you down when the computer thinks you're working too hard.

You know you're wired when...

Your device makes you win at the slot machines.

Member Quotes

A properly implanted and adjusted pacemaker will not even be noticeable after you get over the surgery.