pacemaker

Can my pacemaker be swithched off and left in situ for a trial period ?


9 Comments

Why would you want to do that?

by MartyP - 2018-11-08 13:35:00

The PM is basically just "standing by" and just watching for something "bad" to happen.  It may be turned off during surgery, but precautions are always made should something go wrong during the operation and either it or an external PM is in place.

Why would you want to take a chance of perhaps even dying if it was turned off as a trial.

Perhaps others might have a reason, but I don't see a plausible reason.

pacemaker suspension

by satnavstan - 2018-11-08 15:50:16

MartyP,   thanks for your quick response. I do believe I have good reason to ask the question. I wished I could honestly say my life has improved since the pacemaker was fitted nearly 2 years ago. Having been an endurance athlete for most of my life I am now reduced to being almost totally handicapped, doing any kind of exercise is almost impossible.

pacemaker suspension

by satnavstan - 2018-11-08 16:33:05

Robin1. thanks for your comments

How would switching off help?

by LondonAndy - 2018-11-08 17:03:41

Is there something you haven't mentioned yet, as I don't understand how switching it off would improve anything.  Since a pacemaker is a "safety net", telling the heart to beat more often than it would otherwise, switching off the pacemaker switches off the safety net. That will not give you more energy. 

Are you on a beta-blocker, such as Metoprolol?  If so, that's more likely to be the cause.  And have you told your pacemaker guru about the lack of energy, in case there are settings they can change to help?

 

pacemaker suspension

by satnavstan - 2018-11-10 15:51:42

thanks to Swangirl and London Andy - I found your comments useful

What to do when it seems like your pacemaker is making you worse

by Gotrhythm - 2018-11-12 16:17:11

Although at first I felt much better with a pacemaker, over time I felt worse and worse. After a while my quality of life was so low, the thought of dying was no scarrier than the thought of continuing to live as I was. To me it was obvious that something was either wrong with my heart, or with my pacemaker. Tests showed my heart was normal. And I was assured a thousand times, my pacemaker was "working fine."

I wondered many times if it was possible to turn off the pacemaker. I did the research, and the answer is yes, it is, and it's quite simple to do. Everytime they do the interrogation, the pacemaker is turned off for a second or two. And do you have the right to have it turned off? Yes, you do. Like any artificial life support, you have the right to refuse it, and the right to have it turned off even after it has been started. 

In the end, it turned out that my intuition that the pacemaker was causing the problem was correct and, guess what, the solution was to turn off the ventricle lead! 

So you see, I think a trial period with the pacemaker turned off could be a very rational way to determine if the pacemaker really is what is causing your symptoms. But I do think it's a last ditch approach.

First, recognize that with a heart that's wonky, you're probably not doing your best thinking. You need an advocate. Someone who is only on your side and only wants to see you get better. Take tha person to every appointment.

Second, go to a major medical center. If your doctor knew how to help you, I believe he or she would have done so by now. It's time to go somewhere else. For most people, pacemakers really do work. So recognize that you fall outsiide the ordinary cases the average private practitioner sees 80% of the time. When my problem was finally nailed down, I could see that I was in the 1% of 1%. Travel if you must, but go somewhere they see lots and lots of unusual cases.

Third. Do your homework. Learn all that you can about pacemakers, and all that you can about your condition. Familiarize yourself will all the tests that have been done and the results. The more you know the more respect you will get, and the more specific you can make your questions, the better answers you will get.

Good luck. Don't give up. It really is possible that your heart is not reacting well to the way the pacemaker is currently programmed. Turning everything off is possible but a last resort. First let a really skillful EP have a go at reprogamming it to work with your heart.

 

pacemaker suspension

by satnavstan - 2018-11-14 16:33:07

Gotrythm, thanks for for your views which were really appreciated. One of my problems are that the medics dealing with me don't have much knowledge of how an athlete tics. When I initally visited my GP with an exceptionally high pulse rate whilst riding my bike, his response was "what do you expect at your age". I had been riding 100 plus miles in a day regularly more or less all my life. Since having a pacemaker I am exhausted after riding 10 miles and need to go to bed for a while. When I have appraised my GP and the hospital consultants they all say the same "continue as usual with exercise" when told of the difficulties I am experiencing they seem to think 10 miles is a good effort... I still get the arrythmias just the same as before the pacemaker was fitted - hence my original question " can the P/M be turned off for a while. Anyway thanks to everyone for your comments / views

Exactly why were you given a pacemaker?

by Gotrhythm - 2018-11-17 18:44:30

Nothing you say about why you got the pacemaker computes. Your pulse was "exceptionally high"? A pacemaker can make a heart beat faster. It can't make a heart beat slower. 

"I still get arrythmias just as before" ? A pacemaker can eliminate pauses. It can't fix PVCs and PACs, or tachycardias.

You've been complaining to your GP about problems with the pacemaker? GPs don't know diddly about pacemakers. (At least in the US and I'd be surprised to know that UK GPs are all that different.)

You are clearly in a far different state of fitness than most pacemaker recipients. If I rode a bike for 10 miles, I'd need to be hospitalized. But it's true, few cardiologists have a good understanding of the pacemaker requirements of athletes.

Have you been seen by a cardiologist or electrophysiologist at all? If not everything I said about going to someone else goes double. Your intuition that you could be better off without the pacer could be right on. But you won't know until you have consulted with an actualy heart rhythm specialist.

Pacemaker suspension

by satnavstan - 2018-11-18 07:47:22

Thanks Gotrhythm, my pacemaker was fitted because the medics thought my resting pulse of 45 - 50 bpm was too low... despite being told many, many times that was normal for me as I have been an endurance cyclist since I was 14 years old. My P/M is set at 60 bpm and is supposed to "cut in" if my pulse should fall below. At my last visit to have my P/M checked I was told it was pacing at 98 percent ... given that my normal resting pulse was 45 - 50 bpm in theory my heart is working harder than it's been used to. Your comment regarding GPs seems to be true in my case and cardiologists I have seen ( at least 6) seem to know little about athletes needs. As usual thanks for your comments

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