Pacemaker Syndrome

Pacemaker syndrome

by grilor - 2018-02-12 06:41:35

I don't know the answer you want to hear, Jimmy. I am sorry you are having such a time. I will pray for you. 

Time to do something different

by Gotrhythm - 2018-02-12 13:49:52

I'm sorry you're having such a hard time.

It's clear the doctors at the VA don't know how to help you. That being the case, your only option is to go somewhere else. Somewhere that the more rare conditions are seen, and where there is a more creative approach to treatment. 

There are other pacemakers than the one you have, pacemakers that work differently. Pacemakers that perhaps would work with your heart more effectively. Certainly you need to discover if Bundle of HIS pacing is an option.

In my case, I'm pretty sure going to Duke saved my life. Certainly it gave me back a life that is worth living.

Even if you must travel and pay out of pocket, if you feel so bad that you'd rather die than continue to live as you are, you don't have much to lose by going to somewhere that can offer you some other choices.

You are in my thoughts and prayers.

Praying!

by FaithGrace - 2018-02-12 22:57:11

Praying for you Jimmy!  It will get so much better once they get the Settings right.  Can you possibly call the pacemaker company and see what they suggest? Or, get into a new Cardiologist/Electrophysiologist that can help you get things straightened out.  Don’t give up! 

I was in same boat as you!

by Mojo - 2018-02-13 13:30:41

I am so sorry about what you are going through. I have almost the same condition as you and had a dual chamber Medtronic pacemaker installed June of 2013.  I had 7 ablations to try to correct this and then had the pacemaker installed. My cardiologist told me he couldn’t help me any more after all these years of arrhythmia whenever I would even stand up. I could feel every beat and I hated it. My quality of life was in the tank.   Last Thanksgiving I was so bad I didn’t want to live that way anymore. I went online and requested an appointment at Mayo Clinic on that Saturday night. I got a call from them on Monday at 7 am. I was stunned! They gave me an appointment within 2 weeks and we took the trek up there. I also have severe asthma and many of the heart meds trigger a bad asthma attack so those wouldn’t work in my case. They wanted to try me on a blood thinner, but I’m a bleeder and that wouldn’t work. They said to go home and get a good treadmill and start walking, 10 minutes at first, walking through the arrhythmia until I could build it up to more minutes. The first few days were absolute hell, dizzy, heart beating out of chest, short of breath and felt like I was going to drop dead. I persisted because I had no other choice. By the time I went back to Mayo a week ago, I was walking 30 minutes in the morning and 30 minutes in the afternoon. Is it fun?  No!  But I do it because most of the arrhythmia is totally gone. I cannot believe what it has done for me. And no extra medications. Unbelievable to me and my husband but for me it works. I pray you can get some relief also. If I were you, I would look elsewhere also. God bless!

PM problems

by Jimmy Dinfla - 2018-02-13 22:35:22

Here is another vote for you to get another opinion by different doctors.  I would select an EP at a major clinic or teaching hospital.  I don't know if the VA has specialty hospitals, but would check directly with the VA headquarters. 

Please don't give up.  Life is so precious!  Thank you for serving our country.  I am rooting for you.