Struggling with settings

Hello,

Newly registered member here, hoping to get some help from you guys with my adjustment problems.

I got my Biotronic Evia pacemaker in November 2011 due to syncope and intermittent 3rd degree AV block. I was admitted to hospital for one week after the syncope before It was decided that a pacemaker was needed. During the observation I had a low nodal pulse at around 40 bpm, and some pauses up to 6 seconds long.

Before the syncope I was a very active young woman, working out at the treadmill and being able to do interval training with very high pulse (180-190 bpm). My resting pulse was low, around 50-60 bpm.

After the implant I have been having a hard time exercising. I did get back to work less than a week after the implant, but I had problems walking up stairs and running after the bus. I suddenly felt like an old woman, getting out of breath all the time during normal activities and feeling a heavy pulse in my throat while at rest.

I complained about this and got some of my settings adjusted, the doctor mentioned the word pacemaker syndrome and said that my heart was not in sync with the pacemaker. I felt better after this but still could not work out more than two minutes on the treadmill before "hitting the wall" and getting out of breath.

I complained again, and was scheduled for a bicycle stress test. Ten minutes out in the test, when my pulse was getting close to 160 bpm I had a 2:1 block and my pulse went down to 80 very abruptly. This felt terrible.

It turned out that my programming (DDD, 50-160) did not allow me to have a higher pulse than 160! Furthermore, it turned out to be very difficult to adjust the settings on my pacemaker to increase the upper tracking rate. The doctor and nurse technician did a lot of adjustments and finally were able to get it as high as 182.

Unfortunately, the new settings made me feel awful at rest and in normal activity. The symptoms I had initially came back and my heart was getting out of sync again, so I went back to the hospital again to complain.. The doctor explained that my nodal beat was interfering with the pacemaker, sometimes making
both the upper and lower heart chambers contract at the same
time. My settings were adjusted, causing a lowering of the upper tracking rate.

So, this is where I am today. Feeling better at rest and low impact activities, but not being able to work out. The doctors are going to discuss my case at the next Monday meeting, and I know they have been in touch with the manufacturer to get some answers.

I really hope they will be able to make this pacemaker work for me in the end. If anyone of you have experienced something similar, I would love to hear about how you resolved it.


3 Comments

understood

by DC Pacer - 2012-01-28 04:01:33

I have had similar challenges - my initial settings led to the same type of issues. I have been fortunate that my doctor listens closely to his pacemaker technicians and between the three of us my pacemaker is pretty dialed in.

My upper tracking rate is now also set at 180 as I have been working out more and resumed soccer play this year. My lower pacing rate is set at 60, and we also tinkered with the PVARP (?) setting. All I know is that where we adjusted the PVARP to has eliminated almost all of the uncomfortable sensations when at rest, working out, or (yup) after eating. Certain foods may be harder to digest, and it stimulated a nerve response that affected my heart rate.

Best of luck - it sounds like you have a good doctor. There are lots of settings that can be adjusted on a pacemaker outside of the rate and upper limit. Keep pushing until you reach a comfortable setting - it's worth it.

DC

Good to hear

by Mie - 2012-01-28 05:01:26

Thank you for giving me hope that my issues will be resolved. The thing that worries me most is the understanding I got from overhearing the technicians discussing that there seems to be a kind of trade-off between getting a high upper tracking rate and ruling out my pacemaker syndrome.

I know they touched the PVARP settings and the AV delays. IRSplus was also turned off to make me feel better. It seems, they were not able to find a setting where my upper rate response could get high enough for my needs. They even discussed whether the formula calculating the 2:1 rate was correctly displayed by the pacemaker programmer.

I do not feel comfortable with the thought that working out might again put me into 2:1 block, I will insist on getting a new bicycle stress test no matter what the theoretical upper rate might be.

Just got an Biotronik Evia Pacemaker

by jfuhring - 2012-01-30 06:01:33

I'm at post-op day 6. I have the Evia Pacemaker as well. For me, the Biotronik tech stated that only CLS (closed loop stimulation) was turned on. I was also told that I should wait one month until starting to exercise. It looks like I'm in a similar situation as you are: I was diagnosed with vasovagal syncope. I have no AV block though. I just faint when encountering a lot of pain (from a fall, from being sick (stomach), etc.). I am very active. My max heart rate is 183 and my resting pulse is 58. I hope I don't encounter the situation you are going through. My doctor basically said that my pacemaker would not be active unless it sensed I was about to faint.BTW...can't wait to start training again. I have the Disney Half Marathon in September.

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