Getting a little nervous

While you wait for the Biotronik pacemaker members to respond . . .

by Gemita - 2020-10-18 08:02:32

I thought I would just say good luck CLE.  The actual "fine" setting adjustments will need to be discussed with your pacemaker team and will, I assume, be ongoing work in the future.  I hope you have told your team about your activities and what you hope to achieve with your pacemaker (apart from alleviating your heart block symptoms of course!).  If you have, I am sure your EP has chosen the most appropriate model for your needs.

I would hope when the pacemaker is adjusted appropriately, it will complement "the natural action of the heart" as you increase load/speed but I am not a cyclist.

welcome!

by Tracey_E - 2020-10-18 09:58:30

Glad you found us! 

Make sure your doctors know you cycle. Some rate responses are better suited to cycling than others. Sounds like they may already know, tho, because Biotronik makes the one that uses breathing rather than movement. That said, with heart block it probably won't make a difference. Rate response is for people with sinus node issues, rate response helps the rate get up on exertion when the sinus node in the atria gets lazy. With heart block we usually have a perfectly normal sinus node, our problem is the signal gets lost on the way to the ventricles. So for us, the pacer is playing follow the leader, making sure the ventricles beat when the atria does. It's keeping the heart in sync, not setting the pace.

The only way it will affect your heart as you work harder is to make sure the ventricles never miss a beat. It only adds beats, it can't keep the heart from beating on its own. However, the pacer will only make the ventricles beat as fast as it's programmed to go, that's upper limit. They often start that around 120-130. If the atria goes faster than that, the heart will be out of sync again. That number can be adjusted as needed. Ideally you want it 10-15 bpm over the max rate you hit working out. I average 160 but get as high as 170-175 sometimes so my upper limit is 190.  The don't like to have it too high, and if you end up needing rate response it has a lot of setting options, so it may take a few adjustments to get it fine tuned to where you need it to be. We are all different so they send us home with settings at a good guess, then modify from there. If you ever feel symptomatic while exercising when you start back, back off and let them know.

Cycling

by SNORTINGDONKEY - 2020-10-18 19:57:39

Hello CLE:

I am an endurance athlete/triathlete/tennis player and had to get a pacemaker because of complete ventricular heart block. I used to ride and run a lot, but unfortunately, I am only 25% active compared to before the pacemaker was installed. Some of my problems cannot be attributed to the pacemaker, but yes, cycling has been a huge problem with my Medtronic PM. (I have many posts about my travails on these forums if you want to look them up.)

I would suggest talking to your EP about the right PM. I lot of people are saying that the Boston Sci is the best one for cyclists.

Is your heart block just ventricular or ...?

Are you in Cleveland by any chance?

By the way, extremely interested in your experience whichever PM you go with...

Heart block

by CLE - 2020-10-24 14:09:19

My heart block is only ventricular and is type 2. I am in North Carolina near Charlotte. Doc set my minimum at 50bpm with a max of 160 bpm. I'll only be paced while I sleep and when I sit still for a while. My heart rate use to go to mid 40s if I sit for a while. 

Cycling & Biotronik programming

by darmaggi - 2020-11-10 16:14:11

I'm also an avid cyclist, swimmer, and weight trainer, and I was diagnosed as having an AV second degree electrical blockage mobitz type 2. Functionally speaking, when I was exercising and my heart rate would increase to whatever my level of exertion was I would hit a certain rate, that seemed to me to be a threshold or triggering point, at which point my heart rate would drop, usually to about 50% of where it was. My condition worsened over the years,and the threshold rate or triggering Point kept getting lower and lower, so at the outset it might have been 150 and then cut to 70 beats p.m, and shortly before I got the pacemaker I was lucky to get it up to 80 or 90 beats per minute, with it commonly dropping into the 40s and 50s while I was exercising, and even passed out once when I was on a stationary trainer and my heart rate dropped into the 30's, luckily I wasn't on the road in front of a truck at that point.

So a couple years ago I had a Biotronik Eluna 8 DRT implanted, and started off with a common programming mode, I believe it was DDDR. All those D's indicate Dual, first one is chambers paced, second chambers sensed, third is the response to sensing, and the fourth letter R represents rate adaptive. Within a few months after the implantation and getting used to the pacemaker, I felt it wasn't working optimally, especially when it came to rate adaptation. I think on my first follow up we just tweaked some parameters inside that programming mode DDDR. A few months down the road I still wasn't happy with the rate adaptation,and I think at that point we changed the programming mode to CLS, or closed-loop stimulation. I don't know if you're model of pacemaker is capable of this programming mode, but biotronik advertisers it at the best mode for rate adaptation. CLS is unusal as it doesn't use movement as an accelerometer would, or respiration to determine if you are exercising. CLS measures cardiac muscle impedence after sending an electrical signal directly from the PM housing to the heart and using the lead to sense the electrical impedence in the muscle. Even though Biotronik advertises this as the best at rate adaptation, I was still not satisifed, especially because I exercise a lot, it's a lifestyle for me, and it felt like at times my PM was going to sleep, and not keeping up with me. We've tweeked the parameters inside the CLS programming mode several times to try and make it more sensitive, but here it two years later and considering the Eluna is a state of the art PM I'm not totally happy. 

I've called Biotronik's USA home office several times to talk to techs, and only recently have I gotten a hold of one that had some unique insight regarding my dissatisfaction. He asked my about my lifestyle and I explained I am a trained athlete with an accent on endurance sports like cycling and swimming. He mentioned something called the Strarling Principle or Frank Starling law, and without getting too far in the weeds about what it is and how it applies, he suggested the maybe the CLS mode wasn't right for me because he feels it may be best at minute rate variation. I just mentioned all this because you're a cyclist and have a Biotronik.I'm going back to my EP to get him to change the programming mode, because the Biotronik techs I see locally, on my follow ups at my cardiologists PM clinic, have been willing to tweek the paramaters inside my programming mode, but wouldn't change the programming mode, and I've decided I want to go back to DDDR and see if we can get that to work better where my exercise regimen is concerned.

If I were you I would learn as much as possible about your pacemaker so you can discuss how it functions, how you feel, and if it's programming mode is meeting your needs. I think it's also possible the local techs may not see highly active, or athletic folks with pacemakers all that often, and haven't built up enough of a knowledge base about how to optimally set the PM. Also, if you are as active as I am athletically speaking you probably know your body really well and demand a lot of it. Of course there's always the issue of individuality, and while there may be similarities in how the PM programming modes function for different people, there's also each persons unique biometrics, history of exercise, and how well trained they may be. My oxygen uptake is good and the mechanic of my heart are good it's just the electrical system needs help.

I hope any of the information I've shared can be of use to you. I'd be interested to know what programming mode they put you on, and how it's working for you.

Cheers,

Mark

Active Lifestyle w/ Biotronik

by BHviz - 2020-11-30 22:40:55

At 53 I received a Medtronic PM which I had about 5 years; replaced at 59 w/ Biotronic Edora 8 DR-T in 2018.  Before either PM I was an avid runner, biker, and hiker and it was a frustrating struggle with the Medtronic to regain a similar activity level.  The Biotronic was a noticable improvement from the beginning.  It took several months with the help & patience of a great technician to get the settings adjusted for optimal activity.  No-it's not like 'before' but it's a pretty good 'after' considering the alternative! 

Initially I thought the Biotronik utilized both the CLS and Accelerometer simoultaneously but I was disappointed to learn it was either one or the other but not both.  When set to CLS I didn't experience any significant improvement over the Medtronic device.  I ended up disabling the CLS feature and have used only the Accelerometer for almost 2 years.  And it took some time to get the settings adjusted.

As mentioned earlier, clearly communicate to your technician your pre-PM lifestyle and activities.  A good tech will take time (weeks/months) and work with you to adjust the settings off the factory default.  Be patient and willing to make several visits to get the best results.

Biotronik PM Edora 8 DR-T

by woodyharris - 2021-01-14 15:44:26

I had a Biotronik PM implanted yesterday. I saw the comment that Mark made on this forum regarding a PM tech that helped him . Would you be able to give me his name and how you found him? I'm a serious runner,  who wants to maintain or improve my performance level. I also posted a message to the general group, not knowing how this all works.

Thanks,

Woody