I need your help!

I am so frustrated! I had my PM implanted in March 07 and I am still having SO many problems. I was told my Doctor was one of the best but he (actually a team of 5) can't figure out what is wrong. I got the PM because I have a second degree heart block when I exercise. My heart rate would go from 170 to 60 and stay there for a minute or two while working out. The signal from the upper chamber to the lower chamber was not going throught so that is where the pacemaker came in. After MONTHS they seemed to get the setting right. But again my heart rate started dropping at strange times. NOW they think there might be a problem with the atrium (upper chamber). Is there any one else out there with a similar problem? I am 44 and work out a lot. I teach at a health club. I am going back again for more tests, I have been to the hospital almost every week since March! I'm really starting to think I'm crazy! I don't know if I should try a new doctor. Does anyone have a doctor who specializes in unique cases? I don't even care if I have to travel. I live in RI and drive to Mass General now! Any info would be great. Thanks!

1 Comments

for KarenLL

by jellybean - 2007-08-07 08:08:35

First of all, you need to work closely with a Medtronic pacemaker rep, have they had one present for your programming? They will usually call technical/medical support for suggestions on programming around any problems.

I had an EnPulse pacemaker and had a lot of problems with settings initially. The sudden drop sin heart rate can sometimes be caused by a few different things. Here are my thoughts:

1) hitting max 2:1 block rate. When you get up to the mac tracking limit, it can sometimes throw you into 2:1 block, dropping your HR by HALF immediately. EG if 140 is your rate it 2:1 blocks you down to 70bpm. This can be changed to increase upper limits.

2) you exercise, a lot. Active people are not an enigma to the pacing world, we just need more programming tweaking- the upper rate can be set as high as 200bpm in some devices. Sometimes docs go with manufacturer settings and set to 120-140bpm nd never customize. If you are very active ask to move this max rate up to 140-160, even 180bpm. Chances are it won't hurt anything, and will pace you when needed, improving your athletic experience.

3) find out about your PVARP and AV interval settings. You said you have an A-V block. the timing between the paced A and V beats can be adjusted. If it is too far out, it is still possible you are not conducting efficiently to the ventricle. See if they have this set close together in time.

4) find out about rate smoothing, hysteresis, and rate drop algorithms on your device. These can be set to prevent sudden drops and make your HR smoother.

5) Don't ever be afraid to get a second opinion or new doctor. If you're not happy keep looking. Consider going to a large university medical center with a big pacing/device clinic. OR look at your doctor's credentials and publications. The big players in research and medical for cardiac are all over the country. For device issues and programming, you should not have to run the countryside to get someone competent to program you. But do post your general location so people might make suggestions.

Those are some of my initial thoughts. Please remember a lot of what you see here is people who have problems, hence why they post. This does not mean you should expect issues. You Medtronic device is intended to be programmed to your needs and it can take some time, thought, and experienced tech, patience, and trial and error.

Do not accept any passing the buck. Your EP who implanted it is responsible for you, make them work for you and I don't care if you have to call them every day until its right. Do it, and feel better.

Best,

jb

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