Intolerance

Hi,
I have had a Boston Scientific Dual lead pacemaker for three years following a complete Av Node ablation.

I am very intolerant to exercise, I feel like I am hitting a brick wall on walking up stairs or just the slightest of inclines. I m only 38 and feel like a 90 year Old, breathless to the point I feel my heart needs to beat more but won't!

Have been told the pacemaker settings are correct!

Does anyone please have any suggestions? I'm seeing pacemaker clinic tomorrow.

Thank you
Karen

10 Comments

settings

by Tracey_E - 2014-04-10 04:04:02

I would ask again, possibly push for a stress test while on the pm computer so they can watch what happens when you exert. Just because one person says the settings are "correct" and the pm is functioning properly doesn't necessarily mean the settings are ideal and there isn't room to fine tune so you feel better. Sometimes you have to be a bit pushy to get their attention, possibly get someone else to look at it. Sometimes the person running the test at the clinic doesn't know how to do much more than run the tests so sometimes they give us incorrect information as to what can and cannot be done.

Why did you have the ablation? There are others here who have had av node ablations and are still able to exercise, hopefully they will chime in soon with more specifics.

stress test

by Tracey_E - 2014-04-10 05:04:04

Were they watching what the pm was doing during the stress test? Ask them WHY you failed it, it might be something they can program around.

Settings

by amethyst34 - 2014-04-10 05:04:17

Hi Tracy,
I had the ablation, following several other ablutions without success for SVT and atrial flutter, and atrial tachy.

I had a stress test and failed miserably only managing two minutes.

Shortness of breath on stairs.

by Selwyn - 2014-04-10 05:04:33

I would certainly want confirmation that the rate response setting on your pacemaker is switched on.

I trust you are not taking medication that could be a problem? ( e.g. beta blockers etc.)

Tracy's idea is a good one.

My personal experience, and it is just that, is that although I am fit for exercise, short burst activity can be a problem ( e.g. running up stairs) as there is a lag period before the pacemaker's rate response kicks in. This can produce breathlessness. Especially when the upper body is still and the legs do all the work, this is more likely to be a problem.

Stress test

by amethyst34 - 2014-04-10 06:04:16

Thank you,

No no longer on any other meds, failed after two minutes as was so out of breath And giving of ectopics I had to stop the test!

The letter that followed stated "the pacemaker is ok"
So hopefully will get some more news tomorrow, I will put my foot down with the technician till I get some joy!

Karen


Settings

by Many Blessings - 2014-04-10 11:04:31

Hi Karen,

I too, had an AV Node ablation. I exercise regularly and live a full, active life. Personally, I do MUCH better with my rate response turned off. The couple of times they turned mine on, I felt absolutely horrible! I could not even make it across the parking lot at work, and when I tried to make it up the stairs to my office, I literally didn't think I was going to make it. My legs felt heavy like cement, my face and extremities were tingling, I was out of breath, I felt weak and dizzy. I went back the next day and had my rate response turned back off and I was good to go! Everything you read or hear says I should do better with it on. But, that doesn't work for me.

Settings are a weird thing. A wrong one can make you feel like crap, and when they get them right, you can feel great! I could not believe the difference! "They" cannot tell that "your settings are correct". They need to experiment around until you feel good, THEN they're correct!

Keep pushing for them to test what might make you feel better. What works for most, may not work for you. The rate response seems to be a common problem for a lot of people. For me, I do better with it off. But, like Selwyn said, you may do better with it on. It really is different for everyone. If yours is off, have them turn it on. If it's on, have them turn it off, just to see if that's it.

Have you had an echo lately to see if there's anything new going on that they can see? What is your EF at? I have cardiomyopathy w/heart failure. Do you have that as well? If so, have you moved to a higher level for either of those? That made a difference for me prior to my CRT-P w/AV Node ablation. Don't give up trying to figure this out until you get an answer.

Good luck! Let us know how you do tomorrow!

Appointment

by amethyst34 - 2014-04-11 04:04:34

Well what can I say, went to appointment, technician said they would never turn off the rate response! So he did some adjustment with the sensor and sent me away to walk up some stairs, no difference at all. So now witting to her from the consultant to see if they will upgrade pacemaker to CRT!

So I am no better off.

Thanks for all your messages

CRT

by Tracey_E - 2014-04-11 09:04:30

I wrote a reply earlier, guess I forgot to save it!

At the very least you need to have a long talk with your doc- not the technician- though I would probably go get a second opinion and let fresh eyes look at your case. Your circumstances are not unique, but they're rare enough that the average technician, probably even the average decent ep, does not have a lot of experience with similar patients. This means that when the things they usually try don't work, instead of writing you off or talking upgrade because they are stumped, they might have to do some homework, they might have to think outside the box, they might have to put their ego aside and admit they don't know what to do and refer you to someone with more young active patients who have had ablations. Talking CRT after one attempt to tweak the settings and trying them out on the stairs is crazy. It may be that a CRT will help you in the end, but that's barely scratching the surface of things they can try before resorting to that. There are many other things to try first. If they can't do it, find someone who can.

I'm with Tracey

by Many Blessings - 2014-04-12 10:04:28

I agree with Tracey not to give up, and talk to your cardio/EP doc to see what he/she suggests. I have an awesome PM tech, who listens to me, advice I've been given on this site, and she continues to research for answers if she can't figure it out herself. My local cardio doc, University Hospital EP doc & PM techs are the same way, thank God. If you can't get what you need from who you're going to now, you may want to try someone else, just like Tracey said. I'm not sure with the Boston Scientific if you can turn the RR off or not since I have a St. Jude. Tracey, do you know?

My PM tech has had to call St. Jude (my CRT-P company) to see what could be going on, a couple of times. Maybe yours could call your PM company to see what they suggest. Or, you can call. Again, like Tracey said, sometimes they need to put their egos aside admit they're stumped.

As for the CRT upgrade, I didn't mean to go and do it right away, but look it as an option if all else fails, especially since you already have had the AV Node ablation. Yes, it would be another procedure, but it might really make the difference IF all else fails.

I just can't help think this is a settings issue, especially since it sounds so much like when mine were wrong a couple of times. But, maybe I'm wrong. Either way, keep at your EP doc and cardio doc to find an answer if your PM tech doesn't. Maybe something else is going on.

Good luck!

Intolerance to Exercise Also

by fredzkx - 2014-04-14 08:04:15

Karen --

I am having the exact same symptoms with my Boston Scientific dual pacer! This one was implanted in October and has never worked quite right. Before this, I had St Jude's pacers, but after breaking pacemaker leads every year and going through five surgeries, my EP decided to switch to Boston Scientific, which has thinner , more flexible leads and a different system for connecting with the pacer. II never had these problems with the St Judes pacers, so I am wondering if the problem you and I are having is specific to this pacemaker.

The settings on my pacer are ok, also (per the EP technician ) and after going through a stress test and an echocardiagram there appears to be nothing wrong with the heart.

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