Thanks for the % pacing answers

Thanks Frank and Inga for your thoughts and the comments you gave me. Of course it helped!

Just you to know me better: my symptoms started around age 36 - my heart rate was 35, I felt weak and dizzy all the time. It went lower and lower (20) until I was fainting. They made all the tests (ECG, ECO, tilt test, Holter) and the diagnose was I had bradycardia and also SSS.

I have a (DDDR) PM that helped until now to keep a regular beat -and it was really useful, if I may say it!
I am set at 50 bpm, after some changes. Nevertheless the main symptoms I felt are still there.

After the implant, my cardiologist told me I would need to be paced on the atria but also on the ventricle to compensate and to obtain a better response. We never talked about heart block, but after read your comments, I will ask him about it and clarify it better.
I will keep you informed.

Once again, thanks a lot for your answers.

Manuela

3 Comments

Thanks for the info

by ElectricFrank - 2009-08-10 10:08:23

You say you are set at 50. That is only part of the picture when using DDDR mode. In DDDR mode the rate response feature senses your activity level and uses it to adjust your HR. 50 sounds like your lower limit. The is also an upper limit which should be at least in the 130-140 range depending on your age and condition. There are also settings that affect how quickly the rate response increases your HR with activity.

You might try the following test:
Check your HR after a short time resting (either time your pulse or use a BP cuff to measure HR). Now do some sort of activity like walking briskly around the house, or if you can walk around the block. Quickly check your HR again. The rate response should have increased your rate to something reasonable.

One concern I have is your diagnosis of SSS. The HR you mention with your original symptoms sounds much more like AV Block. When the ventricles lose pacing information from the AV node they fall back on a rate that is built into them. Mine started at 40 and then gradually dropped to 26 the night before I got the pacer. I was still able to function without passing out, but sure felt lousy. The concern I have is that my cardio simple checked all the boxes on the diagnostic form and included SSS. Fortunately I was able to read my ECG and see that my atrial beat was normal (before the implant) which is NOT an indication of SSS. Using this bogus diagnosis they set my mode to SSS which left me with the pacer trying to second guess my own natural atrial pacing. After a bit of a fight I got to turn on off the rate response (DDD), set my lower limit to 55 and upper to 150. I've felt great ever since.

There have been several people here on the forum who have had much improved pacer results after one of us suggested trying the DDD mode.

frank

SSS

by golden_snitch - 2009-08-11 01:08:32

hi!

i'm glad our responses helped a bit. frank: you can go down as low as what manuela said with SSS. i was down to a minimum of 18 bpm at night, 30 at daytime without ever having a heart block. i know some other SSS patients who went as low as that, too.

i think it'll be a good idea to ask your cardio if you have a heart block, manuela. there really is no need to be paced in the ventricle, if it's "only" SSS. it's always important to let the heart do as much work as possible on its own. you may just google unneccessary right ventricular pacing to find out more about what it can do to the heart.

all the best for you!
inga

SSS or AV block

by Maguila - 2009-08-11 07:08:56

Hi again!
And thanks for the incredible infos. It is great to know that you are there and share infos with you!

I have to tell you that I got a little bit concern with all this and for sure I will talk with my cardio on my next appointment. And Frank you are right: my Lower rate is 50ppm and the Upper Tracking rate is 140ppm. My RATE response: ADL rate: 80ppm and Upper and sensor rate: 120ppm.
And I will made the test to check my HR, now I am curious...

By the way, after any date with my cardio he writes a report to my family doctor describing him how I feel and my settings (maybe it is familiar to Inga who lives in Berlin; I live also in Germany, but in Wiesbaden). In this report he says that I have this DDDR mode -as I told you- but on the quick report (the print out from Medtronic), it says that the mode is DDI.

This is new for me and I feel silly because I could have seeing this before. Now I have to ask him also why this discrepancy... and also find what DDI means and if it is more adequate to my situation.

I will be in touch with you, best wishes,
Manuela

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The pacer systems are really very reliable. The main problem is the incompetent programming of them. If yours is working well for you, get on with life and enjoy it. You probably are more at risk of problems with a valve job than the pacer.