I want my pacemaker to be turned off

How can i get my pacemaker totally turned off... ever since ive had it i cant sleep.. i felt better before i had it.. im up all night and my quality of life is terrible.. it was supposed to help, but i have never been so miserable in my life.. im willing to be back to the way i was before.. i was happier.. i think a pacemaker is not for everyone.. does anyone know of somebody who has had their pacemaker turned completely off... thanks everybody for reading this and taking time to answer 


9 Comments

Sorry

by Graham M - 2020-01-26 16:51:31

Sorry you are feeling so bad - it must be very upsetting after going through all the trauma of PM implantation and not feeling better.

You don't say why you have the PM, but you should talk to your cardiologist before making any decisions. I expect that a PM can be turned off or even removed if you want it to be, but please bear in mind that you might be putting your life at risk if you do.  Perhaps the EP can adjust it to suit your lifestyle as well as your heart disease.

I hope everything goes well whichever choice you make.

Best wishes,

Graham.

Why do you have one tho?

by Mrclassy - 2020-01-26 20:35:25

Unfortunately if it's any type of 2nd degree heart block or complete you would be risking your life everyday unfortunately without it you can die depending why you needed it

Not sleeping

by Theknotguy - 2020-01-26 21:37:18

I had problems not being able to sleep at first.  They had the voltage at a higher level on my pacemaker.  Sometimes I could feel the tickle followed by the hard thump of a heartbeat.  It would wake me up at night.  At one of my pacemaker readings the tech turned down the voltage and it doesn't bother me.  

So, one question is if you've asked your EP or the tech if the voltage level is bothering you?  Some people are more sensitive than others.  

Next question is if you've been tested for sleep apnea?  Heart problems and sleep apnea go hand in hand and maybe that's a problem.  Not saying it is, but it's something to check into.  

I also feel if your EP isn't helping you should talk with your medical insurance and see if they can get you someone willing to help.  

Having had sleep apnea to the point where I was only getting 1 1/2 hours of sleep at a time I can fully understand how desperate you can feel.  However if you can find an alternate solution to removal of your pacemaker I feel that will be better for you.  

Hope you can find help soon.  

 

Question

by Pacer2019 - 2020-01-26 22:36:20

I see on your profile you had it implanted in 2019 .... what month ?

i was 10/2019 and have wondered the same thing ..... now I'm settled in and feel great - the main symptom I had is gone although I had it after the implant and was growing quite frustrated 

No One Will Take It Out

by Swangirl - 2020-01-27 01:26:53

I had a pacemaker that handn't paced even once in 6 years but I couldn't get anyone to take it out.  When the battery got wonky they wanted to replace i with another one that wouldn't pace.  This is all about medical liability.  My insurance would pay for another device but not for malpractice or wrongful death.  The Dr. needs to cover his butt.  Good luck getting it taken out.  It would be an elective surgery that you would have to pay for if you could get someone to do it.  A better solution is to work with he EP and get the settings adjusted to fix your problems with it.  Your heart is already scarred with the lead insertions.  You best bet is to try to make it work for you.  

Too soon to pull the plug

by Gotrhythm - 2020-01-27 17:43:14

Okay. I see that you have been here a couple of times asking about not being able to sleep.

Have you talked to your doctor about the problem? Have any adjustments to the pacer been tried? 

Having difficulty sleeping post pacemaker is actually a VERY common problem. Many, many of us have had it, and gotten over it. Not sleeping well certainly negatively affects the quality of life, it isn't a good reason to "pull the plug." Not until every possible remedy has been tried.

As for feeling worse overall. Again, there are a lot of reasons that could be true--not all of them caused by the pacemaker. Anyway, the thing to do is talk to your doctor. It's more than possible that your pacemaker needs some adjustments to make it a better fit for you. But there are also thousands of medical conditions unrelated to the pacemaker that could be making you feel unwell.

I honestly doubt if turning off the pacemaker would make you feel substantially better.

 

 

 

Swangirl

by Gotrhythm - 2020-01-27 17:50:16

Just to clear up any confusion. Taking it out and turning it off are two entirely different things. 

Jereomy said nothing about "taking it out."

He asked about turning it off, and that can be done. Whether it should be done is a different question.

Different question

by AgentX86 - 2020-01-28 08:50:41

Turning it off is still a liability issue. Doctors don't willfully get into that area.

sleep

by dwelch - 2020-01-31 00:40:51

it takes time you spent all your life from birth to this point fine tuning your sleep.  It took me months, but without the pacer I would be very dead by now, it has more than doubled my life, Id rather figure out how to sleep than have missed out on all these years.

As pointed out though, what we can do at this site is assure you that almost everyone has sleep issues post pacemaker, depending on the settings and your medical condition and mental state it can be shorter or longer.  What we cant do here is change your settings you need to talk to the doc.  I was mid 30s pre-pacer and my minimum was 50 for the next decade or two and is 60 now.  Realtively the time I couldnt sleep was minimal 1/2 to 1 of the last 32 years (well okay a few weeks for each device since so that adds another couple/three months)

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