Rate Response Causing Tachacardia

Initially PM was implanted for Heart Block. Seven months later, after noticing exercise intolerance when trying to run, I was diagnosed with SSS. I failed the treadmill test (after reaching 130 BPM my heart rate suddenly dropped to 80). The doctor turned my rate response on to pace me up to 130. After rate response was turned on, I began to have episodes of higher heart rate often triggered by exercise. Sometimes when I was at rest my heart rate would be in the high nineties (usually I am in the 60's). I also noticed that my heart rate while walking was significantly higher than it was before rate response was turned on. The past several months I have not felt well (shortness of breath, fatigue, and difficulty exerting myself in any way). I believe the RR was competing with my natural rhythm and perhaps exciting my heart unduly. It may be that a more skilled doctor or St Jude's rep could have tweaked my settings to suit me better and alleviate my symptoms but that didn't happen. Last week I finally asked my doctor to turn off the RR and I feel so much better- better than I have since implant and close to what I felt like before I ever had a heart condition! I am wondering if anyone else felt as sick as I did on RR and if RR can actually cause or lead to Tachacardia and higher overall heart rate.

I know that since I have SSS, I probably will never be able to get my heart rate above 130 but I'll settle for brisk walking or a very slow jog. I also know that my Clonotropic incompetence is likely to get worse over time and then I may well need the RR turned on again. If that happens I will go to an expert who can tweak my settings better than my current dr.

In addition, to prevent further episodes of high heart rate, I have cut out most caffeine, ETOH, and sugar. This also has probably helped me. But the single most profound improvement I believe is due to RR being turned off.

Also, I'm thinking that the next time I need I new PM I will ask for one with a CLS and an accelerometer, since that system seems better than an accelerometer only. Inga has written a lot about the benefits of a dual censor, and her amazing feats of bravery and persistence have made a believer out of me:-) Since I have a St. Jude's now, can the leads I already have be attached to a different brand PM? Perhaps St. Jude's will have new technology and better RR features 10 years from now anyway and I won't have to switch brands.

Thanks for reading and for any words of wisdom in advance.

4 Comments

Leads

by golden_snitch - 2014-06-10 02:06:12

Hi!

Yes, the leads will work with other brands, too.

Regarding the better RR features, do not get your hopes up too much. I have spoken to manufacturers reps, and they have all said that their companies are no longer working on optimizing their rate response sensors since they a) think the ones they have now are doing a good job, and b) many patients don't even need them. Actually, there hasn't been any progress in rate response sensors since 2005 when the CLS sensor was introduced; accelerometer and accelerometer + minute ventilation are much longer on the market already.

CLS works alone, without the accelerometer. Another option is accelerometer + minute ventilation which is, according to my experience, a good sensor, too. For chronotopic incompetent patients, I'd always suggest CLS or the combination, never an accelerometer alone.

Inga

Thanks

by HoneyBadger - 2014-06-10 07:06:51

Thanks Inga. Hopefully I can make due with the model pacemaker I have and change brands next time. I'm going to write a letter to St. Jude's so they have input from someone who has had a bad experience with their RR. Hopefully next time, I will be able to find a dr. and clinic who will install and monitor a device with a better sensor. Very glad to hear my leads will work with other brands. Thanks again for your response.

And if it wasn't for this site and for the knowledgeable people on it, I'd probably have to settle with feeling poorly the rest of my life. One of my drs even told me that some of the younger more active patients with pacemakers just never do well! No wonder, with many dr's not even able to figure out how to adjust pacemakers correctly or to even think that the RR feature could make a person sick.

drops

by Tracey_E - 2014-06-10 08:06:51

Exercise intolerance is not the same as sudden drops and it has a different fix. Rate response is the pm raising your rate for you when it doesn't go up on its own. I think the other is called rate drop response but I know for sure St Judes can be programmed to prevent sudden drops because I use it. I don't understand all of the specifics but they have to turn off the safety feature that puts us into an artificial block if it detects afib as well as adjust the rate it lets your heart come down. There's a balance between keeping the rate up during exercise and allowing the rate to come down normally after exercise.

I had this going on as well as several other things. None of them were big problems, but combined they kept me from working out as hard as I wanted to. SJM is incredibly responsive when you get the right person. Perhaps if your doc/rep are both stumped, you can get another opinion? My dr readily admits that the rep knows more than him about settings on active patients because the rep has a lot of us over his large territory, my doc has me and I think one other.

When the two of them together couldn't figure it out, my rep started by going through case files from the other reps. When that didn't help and we had done two stress tests with him adjusting settings while I was on the treadmill, he faxed my whole file to SJM and the engineers who developed my pm put their heads together and came back with recommended settings. Now that's in their case file history, also. And what they sent has worked well for several years now. There may be resources your dr and rep have not tapped.

Thank you Tracy

by HoneyBadger - 2014-06-10 10:06:30

Right now I'm feeling pretty good but it is comforting to know that someone might be able to help me with these issues. I am planning to see a SJM rep when I have my next interrogation. I have to admit, that with my experience with RR, I am hesitant to ever turn it on again. I felt terrible for many months. I will investigate though because it would be nice to be able to exercise more vigorously. Thanks for you input.

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