My heart is fighting my pacemaker

My cardiologist just told me that this is what he thinks is causing me to have pacemaker syndrome symptoms. Has this happened to anyone else? I got my pm 3/24/17 and since that time I haven't felt like my normal self. My bp is lower than normal, sometimes really low. I get lightheaded every time I bend over.  Or even lean into the washing machine to get out laundry. (I'm short.)

now he is suggesting a tilt table test and he said they may be able to adjust the settings during the test to fix it. Or maybe try some meds to fix it based in the results of the test or the extreme would be to do an ablation and make me 100% pacemaker dependent.

i am going for a second opinion later this month. Has anyone else here been in a similar situation? It's been over 2 months and all I want is my life back!

thanks!

Cathy


6 Comments

Heart fighting pacemaker

by Rhythmstorm - 2017-06-09 21:03:16

I don't have the dizziness when I bend over but what I have is a hard burst of heart rate of 120+ for anywhere from 30 seconds to 3 or 4 minutes. Also get the same when I go from sitting to standing or visa versa. even happens when I am sleeping and roll over. Doesn't cause pain but the hard beating for a short time is nasty. Good luck to you, Cathy !

I have the same symptoms

by WarrenW - 2017-06-10 01:28:58

Hi Cathy,

i to experience all the same symptoms as you . I have exhausted all avenues with my current cardiologist. I continually went back saying that I am still having rapid heartbeats sometimes lasting 10 seconds to a few minutes. I have had 4 alblations for AF , A Flutter and SVT I have a st Jude dual chamber pacemaker implanted December 2016.

since the implant I have experienced concerning blood pressure drops ,fatigue episodes and lightheadedness prior to the implant I had no issues with BP.

I keep getting told it's not the pacemaker and he has no explanation. My cardiologist has referred me to a leading professor for a second opinion. I am seeing him in Brisbane on Thursday it will be a very interesting appointment.

i suggest you definitely have a second opinion making a decision to have your AV node alblated is a very BIG decision and one you should take very carefully.

hope that helps

Warren

PM syndrome

by islandgirl - 2017-06-10 08:24:32

I recently had a tilt test, which came out negative.  My EP said that with a pm those tests are not as accurate.

I then had my pm adjusted with an ultrasound tech specialized in cardiology and my EP at the interrogation computer and after about an hour they did adjusting.  They were calling out numbers to each other.  It definitely helped.  I went for a checkup after 4 weeks and he did a little bit more tweaking in the office.  Better, but not perfect.  

I had asked my EP for a referral for a cousin that lives in another state.  He told me EPs should be members of the Heart Rhythm Society.

Be patient

by Gotrhythm - 2017-06-10 13:09:28

I usnderstand you want to get your life back, but I think it's really important that you get no more tests, make no moves until you get that second opinion--not from a cardiologist---from an electrophysiologist!

If it is true that your heart can't accpept being paced in the atriam and the ventricle, and there's no way to tweak the settings, ablation is not neccessaritly the only answer. There is a different kind of pacemaker, one that paces at the His-bundle in the middle of your heart. The thinking is that pacing at the His bundle alllows for a more natural pumping action. I"m not saying that's what you need. I'm saying before doing an ablation there are other options to be explored.

Don't try to rush to a solution. Be patient.Get that second opinion.

Not All Ablations Are The Same

by Artist - 2017-06-10 18:02:55

In my case my heart ablation was a pulmonary vein isolation and was located around the 4 veins that enter the left atrium.  My AV node was not ablated.  The AV node is considered to be the primary source for sending the electrical signals that regulate your heart.  A very experienced cardiology nurse told me that even in cases where the AV node is ablated, other tissues in the heart can then take over the function of the AV node.  PMS are very reliable, but the usual SOP is to try medications in combination with PM adjustments and both of those things may need tweaking.  If that fails to relieve your symptoms ablation may help.  As you probably know, AFIB can make people five times more likely to have a stroke because it churns the blood and can create clots.  That is why most people with AFIB also take anticoagulant medications like Eliquis to regulate the clotting factor in their blood.  The tilt table can be a very helpful diagnostic tool, and in my opinion, is a good idea.  So, take your time and continue to work with your doctor.  

Being beaten up by pacemaker

by Grandadbren - 2017-06-23 05:17:31

I had pacemaker inserted over 2 years ago and initially had pain and out of breath on exertion and felt like I was being beaten up with rapid heart beats. The technicians and dr said not the pacemaker and all they wanted to do was increase drugs for blood pressure etc. I eventually went private to see electrophysiologist who downloaded my data from pacemaker said in his opinion I was being over paced and over medicated he turned my pacemaker down to only kick in if hr dropped below 40 I felt so much better within 10 minutes and I have not looked back since. My advice is get a second opinion with an electrophysiologist and do not let anyone tell you it's not the pacemaker you know your own body we are all different in our needs and settings have to be tuned finely 

brendan

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