jossikins

Hi! I am new to this group and discovered it while surfing the net in an attempt to identify my present problem. I was fitted with a pacemaker last March because, in spite of having AF, my heart had on just one occasion dropped very low. However, soon after having it fitted, I went into serious AF, and my heart rate never dropped below 110. So, the PM lay dormant below my left shoulder until three weeks ago, when I had an AV Ablation, which was pronounced successful. And so it seemed to be until day 4 when I attempted to climb a flight of steps rather quickly in order to catch my train.. My knees went out from under me just as I reached the top and I was gasping for breath and my whole body was shaking, as if I was in shock. As soon as I fell into my seat on the train, I felt my pulse. I es[ected it to have gone through the roof. It was 80 bpm, the rate at which my PM had been set. The next day, a similar thing happened when I walked up an incline and was going fairly quickly because I was late. I made it across one wide and busy road, and again my knees went out from under me and I was terribly short of breath, and my whole body was trembling. After assuring a kind passerby that I was really OK, I felt my pulse. Again, 80. I have tried, on several occasions since, to exert myself in a way that would normally increase my pulse rate. It just doesn't happen. Always 80. It would appear that my pacemaker has been set with only one setting - 80, which would possibly be understandable for the lower setting, as I suppose my heart would need a time to recover, before resetting to the bench mark of 60.. But is it normal to have my upper setting set so low that I can hardly do anything without going into that awful state of physical collapse? I have been told that PM's cannot be set at an upper limit, but I find that difficult to accept, considering my problem. Could a lead have become dislodged? Or has the PM really been set with a lowest and highest rate of 80? I really need to know, because my lifestyle is so restricted at present, far worse than before I had the ablation.

4 Comments

80 is very low

by SaraTB - 2014-11-11 02:11:00

If they have set your upper pacing limit at 80, they'd better give you a very, very good explanation why! I had an ablation that unintentional ablated my AV node, so I am 100% paced, and my upper level is around 130, from memory - and I still sometimes struggle with the stairs.

Most initial settings are, I think, at least at 120 for upper limit pacing, so I would definitely want to talk to my doctor if I couldn't get my rate above 80. Whether it's been inappropriately set for you or not, clearly, collapsing after a flight of stairs is unacceptable, so I urge you to see your doctor and get everything checked, especially the settings.

If you can, ask for a copy of the print-out of your settings, which will help you get to know them.

Any other diagnosis?

by Grateful Heart - 2014-11-11 03:11:33


Did the Doctor say you have Sick Sinus or SSS?

From what you are describing, it sounds like your Rate Response (a setting in the PM) may not be turned on. Usually if you have SSS you would need RR turned on and it is typical to need some adjustments from time to time anyway.

In any case, make an appt. with your Doctor so you can get it straightened out and feel better.

Grateful Heart

PM and afib

by Theknotguy - 2014-11-11 04:11:17

My situation was very similar to yours. Got the PM because of a "heart event" - collapsed and my heart rate was 20 when they got to me. Fast forward to getting the PM. Go into an afib session with RVR (Rapid Ventricular Response). Heart rate was 140 and the PM just sat there and watched. Gave me Cardizem to slow down the heart.

Two things thereafter. Because my heart had been through so much, I'd go into high blood pressure spikes. Then I'd have chronotropic incompetence when I'd start to exercise.

They took care of the BP spikes by spreading out Metoprolol. Lower dosage over a longer period of time. That took care of the spikes. But it increased the chronotropic incompetence.

Chronotropic incompetence is where you start to exercise but the heart rate doesn't come up fast enough to keep you supplied with enough oxygen to keep going. You run out of air, get dizzy, have tunnel vision, see spots. All sorts of stuff. If you stop exercising you feel better when your blood oxygen returns to normal.

I still have chronotropic incompetence. But I had to go through therapy to learn how to work with my PM. I have to take it a little slower on start up and allow the PM and my heart rate to catch up. I can now run without running out of air, having tunnel vision, and see spots.

Question I'd have for your EP is something similar is happening to you? Is your PM not keeping up with you when you go upstairs/ downstairs and you're getting chronotropic incompetence. Are there settings he can change to help you adjust? Do you need to add medications? Do you need to adjust medications? Any other suggestions. At any rate, I'd get checked out ASAP.

I was in the UK in June, so know you do a lot more walking than in the US. Obviously it's very important for you to keep up your level of exercise. 1) Because it's necessary for your day-to-day life. 2) Because you should be able to return to a fairly normal life with your PM. We have people on this forum with PM's who are doing everything you like to do without any problems. And you should be able to also.

Hope they can get you some relief and some answers soon. As soon as you can, have a pint of Guinness for me.

SETTINGS

by DJDIV - 2014-11-13 01:11:34

There are a number of settings that can be tweaked. They all interplay to provide performance. You will be more then pleased once you get the settings in synch.

You know you're wired when...

Microwave ovens make you spark.

Member Quotes

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.