My heart is working on its own ~5 months after receiving pacemaker

This is my first post on the site and first time sharing my experience online. Thanks for having me, I can definitely see this community being a valuable resource moving forward.

A little background on me: 

I'm a 33 year old man. I've never had any kind of serious health issues, I live an active lifestyle, I'm not overweight, and never considered my health to be of any concern.

A few months ago, in the early hours of 2/13, I was laying down to go to sleep. Suddenly, I felt the "head rush" sensation that I would get from time to time when standing up too fast, but I was laying motionless in bed. I tried to brush it off, but a strange feeling came over me and I became short of breath. Apparently around this time I had my first fainting episode, and regained composure feeling disoriented. 

I could feel the episodes coming on, starting with kind of a chest-flutter, and a shortness of breath. I remember that my hands were in strange positions when I would snap out of it, and recall the confusion I felt when I regained consciousness.

I tried to just forget about it and laid back down, but it happened again, and again. I started typing my symptoms in on Google, and it kept happening. Every time I regained composure, I’d wake up with my phone in my hand and continue typing the symptoms to try to figure out what was going on. This happened 20-30 times while I contemplated what I should do next. I tried getting up and walking around which helped for a bit, I went outside and got fresh air which also seemed to help.

I laid down on the couch and the sensation came back. I ended up waking up my roommate, and told him that something was going on and that I might need a ride to the hospital. I changed my clothes while I tried to make absolutely sure the trip was necessary - I thought I was uninsured, I'm beyond broke, and I didn't want to put him through the trouble if I didn't have to. He came to the doorway of my bedroom and saw me have one of the episodes and told me it was time to go. We hopped in his car and headed to the ER, which was under a mile or so away.

In the ER lobby, I had an episode while filling out paperwork, and they got me checked in right away. In the exam room, I was being questioned about all the normal things, and let the nurse know that I was about to have an episode. When I regained composure, there were 2-3 additional nurses and techs around me. This happened a few more times until there were probably about 15 medical professionals surrounding me. They told me I had third degree AV block and that my heart was not receiving electrical signals telling it when to pump, and that the resulting lack of oxygen was causing me to lose consciousness. 

Around this time, I stop remembering much, other than them explaining the procedure that they thought would be necessary - outfitting me with a temporary pacemaker, whose leads went through an artery in my neck and into my heart. I'm told they hit me with the defibrillator paddles as well (does this mean I died?)

The next time I regained consciousness, I was being put into an ambulance to be transferred to a different hospital that had better resources for cardiac care. 

The next few days I spent being poked and prodded, having tons of blood work done, ultrasound scans from different areas, X rays, etc… the doctors never found a cause for my heart to stop working. They told me that it looks completely healthy,  and was working like a healthy heart once the temporary pacemaker was in place sending those “pump now” signals. They assured me that it was not the result of any “mistreatment” that I could have caused it, and none of the blood cultures grew any bacteria that could have caused this to happen. 

I never got an answer for why/how I ended up with a full AV block, but since I was stable with the pacemaler, they decided that the best route would be to implant a permanent pacer and send me on my way. 

A few weeks later, I had my incision check at the cardiologist's office. They checked the wound quickly, then put a device over my pacemaker and ran some tests-checking different settings and recording how my heart was responding. The nurse/pacemaker technician changed a setting at one point and says something to the effect of "huh, that's weird..." and tells me that one setting she changed resulted in my heart beating on its own. She told me that she was going to put the pacer on "MVP Mode" where the pacemaker would only fire if the heart wasn't doing the pumping on its own. 

Fast forward to about a month ago, I return to the cardiologist for my first device check... When I meet with my doctor, he tells me that when I was outfitted with the device, it was responsible for my heart beating for 99.9% of its beats. He goes on to tell me that since I left the incision check appointment, the device only paced for my heart 0.4% of the time. He goes on to ask whether or not I'd like to have it removed. He said they still didn't know what caused the heart block in the first place, so I told him I felt it was probably a good idea to just keep it in as a sort of "battery backup."

I left the appointment with a feeling of relief but overwhelming confusion. Did they misdiagnose me in the first place? Was there another route that could have been taken that could have figured out what was going on with me? What am I supposed to do now? Should I have it removed?? 

I guess I'm making this post to see if anyone here has gone through anything like this, or has known anyone that has gone through anything like this. Please let me know,' if you have. And thank you!

6 Comments

Several members have faced a similar dilemma

by Gemita - 2024-07-25 05:53:38

Balony Stark, I see you posted this for the first time about three months ago as a “comment” on another member’s thread.  Thank you for re-posting  as a New Message.

There isn’t an easy answer and no one can tell you with any certainty whether you “might” need a pacemaker at some time in the future.  That would be my main concern.  

Electrical disturbances can be very difficult to control or to understand.  They may start and stop for no apparent reason.  Our doctors may be able to successfully treat heart block if the cause can be found.  Heart block may develop after taking certain meds like beta blockers which slow conduction through the AV Node for example.  Important causes of heart block could also include coronary artery disease, cardiomyopathy, thyroid disease, sarcoidosis or an infection like Lyme Disease.  If the cause for your heart block cannot be identified and treated successfully, I am not sure that I would want to remove the pacemaker.

Some of us are born with heart block or are more at risk of developing heart block because of other heart defects at birth, or because our Mother may have had an autoimmune condition like Lupus.

Personally now that you have a pacemaker, I would wait to see how things go over the next year or two, whether you develop any further electrical disturbances before you rush into making a decision about taking the pacemaker out.  I am assuming your device team have set your pacemaker to watch for falls in heart rates or to look for long pauses and have set your pacemaker to intervene if your own heart fails to pace.  I see you have needed 0.4% of pacing in any event.  I wonder why and when it was needed?  You could ask for the data.

Have your doctors fully discussed this with you?  It is difficult for me to know how best to advise you but being an arrhythmia sufferer and knowing how quickly my electrical disturbances can change, I wouldn’t give up my device in a hurry.

A big decision to make, so I wish you lots of luck

Your symptoms

by piglet22 - 2024-07-25 07:35:43

Probably, worldwide, many millions of people suffer from some disturbance of the hearts' electrical activity. Some of it never noticed or in your case, made you feel decidedly unwell.

I would agree with Gemita and take your time to see how things progress.

It's possible, but not certain, that this could be an indicator that you do have a problem. It could be a one off. Some people live with significant problems without intervention.

The "head rush" sensation is indeed a symptom of low blood pressure or low oxygen saturation. I've had many. When I checked, I would feel pauses in my pulse.

The decision to fit a pacemaker would not have been taken lightly. It's a significant and expensive procedure.

My own pacemaker journey started four years before I received a pacemaker. I had noticed a bit of unsteadiness and what I describe as my hump-backed bridge moments, that whoa moment.

Eventually, an episode put me on the floor, 6-weeks off work, no driving.

Four years later, that became more than a moment, and I was running at about 40-beats a minute and no amount of exercise would raise it. 6-months later, full tests, rapid diagnosis, complete heart block, Mobitz type 2, urgent pacemaker fitted.

That was 19-years ago and now coming up to my third pacemaker. The pacing percentage is near enough 100% in both chambers. That's it. It isn't ever going to go back to normal.

The point is, that quite often with these conduction problems, they can and do progress.

5-months is far too early to be considering removal. I think I might be looking to get another opinion.

It's possible the original decision might have been right at the time, but it's surprising to be offered the option so early on.

A difficult situation to be in.

Advicewise, I might start to keep a check on things like BP, BPM and O2 %.

A BP monitor is always useful and quite good at detecting disturbances. An oximeter will check your heartrate or a disturbance, and your oxygen levels.

In heart block, the pacemaker might have a setting called the IPG base rate. IPG is Implanted Pulse Generator. It might be in the range 50 to 70 BPM. This is the minimum rate your pulse is set to. When relaxed, and the pacemaker working, you might notice that your pulse flat-lines at whatever the base rate is set at.

thoughts

by Tracey_E - 2024-07-25 10:24:36

Glad you found us! What a ride you've been on. 

A few random thoughts...

Electrical problems can happen for no reason in an otherwise healthy heart. Nothing we did caused it. Nothing we could have done differently would have prevented it. Some meds, infection or surgery can cause it, but most of us never know the cause and many of us have no other health issues.

Make sure with all the blood tests that they checked out your thyroid. 

Block can come and go. Not everyone stays in block all of the time. If you are going in and out of block now, it almost always progresses. The pacer is there to kick in as needed so it's possible to need it a small amount now but more in the future.

With av block, the sinus node in the atria usually works normally but the signal gets blocked on the way to the ventricles.The pacer's job is to watch and if the atria beats but the ventricles do not, then it kicks in. They can adjust how long the pacer waits before kicking in, which can mean more or less pacing. If it's set to kick in after a short delay you'll pace more than if it's set to give the heart more time to do it on its own. While it seems intuitive to want to pace less, setting it so that you don't pace as much isn't always a good thing. The goal is a nice steady heart rate, where the atria is filling then the ventricles push it out. If the ventricles aren't doing their part, if the pacer waits too long to make the ventricles beat, that stresses the heart. Think overfilled balloon.

Without pacing, the delay can get longer and longer which results in passing out or the heart stopping. Even if the pacer only kicks in once, that's enough to save your life. Not using it much, or seemingly at all, does not mean you don't need it. A note, if it only kicks in once that will be statistically 0 and possibly show up as no pacing on the interrogation report.

It's normal to take a few tries to get the settings just right. They send us home with a good guess, but we are all different and have different needs. 

Drops in blood pressure can also cause passing out. Sometimes pacing fixes all of the problem, sometimes it only fixes part, as it can't control blood pressure. 

Unless you are 1000% sure something else other than block caused your episodes, I would not even consider removing it. And you'd want to turn it way down as a test first. There are some folks who have had them removed, but it's not something to be done quickly or lightly.

There are some doctors who do not want to pace someone young, simply because of age. This is a GIANT pet peeve of mine. My doctors knew I needed a pacer but they held off giving it to me because of my age. My heart rate tanked on day and I nearly died and ended up in emergency surgery. If we need it, we need it. It doesn't matter how old we are. I got mine at 27. I should have had it 18-21. I'm 57 now and thriving. At this point, what does it matter if I've had it 30 or 35 years? Other than I would have been feeling good for those extra 5 years.  Maybe it's just the lens through which I see things, but it sounds like perhaps you have one of these doctors. He sees the pacer not working much and suggests getting it out because you are young. I would at the very least wait a bit longer, try turning it down or off for a few months and see how you do, and definitely get an second opinion before making any decisions. For me? If I knew I flatlined, I would not under any circumstances want that pacer out. It's a small price to pay for an insurance policy. 

Lucky

by sgmfish - 2024-07-25 19:10:30

If I had to choose between having good knowleddge of my problem, but nearly dependent on my PM (my case); or being puzzled and frustrated by not knowing much, but my heart was working well on its own most of the time; I assure you I'd pick the latter every time :-).

If I were in your situation, I'd settle the issue in my head this way.....man, I'm lucky!

 

P.S. Quite a story there.....very useful at some dinner parties <grin>.

I would leave the PM in!

by Rch - 2024-07-25 21:58:51

Hi

You are very lucky to have the PM on board before suffering a catastrophic event! Thank your stars, your room mate 😀 and your providers for saving your life regardless of your insurance status!! As others have already stated, heart blocks get only worse over time. The time interval could be just a day, a week or even a year! I have been in a very similar situation as you are. My 2:1 AV block disappeared a month after the PM insertion with essentially 0% ventricular pacing for almost 2 years until a few weeks ago when my AV 2:1 reappeared out of no where! I'm still less than .1% V pacing, even that .1% could amount to a few hundred a day. I'm also not PM dependent.

Your Managed Ventricular Pacing ( MVP) mode with DDD backup set by the device tech, might be a better approach for you, but please discuss that with your EP as well. In Boston Scientic it's called AV search+. 

You are only 33, very active. Enjoy your life and sports without ever worrying about passing out!!!! 

 

Heart block

by Stoudien - 2024-07-31 08:43:22

My story was is similar to yours. After being diagnosed with 3rd degree block my two lead pacemaker was installed and was pacing at 66%. About a year later during a pm check it was noted that my pacer was only operating about 1% of the time...good news...and we discussed removing the pm. After 15 months of operating less then 1% , my next quarterly check showed pacing at 33% and each quarterly check pacing increased until I reached greater then 99%. Then a year later I started to develope mild cardiomyopathy, my ejection fraction dropped from 50% to 45%. Finally my cardiologist agreed that a third lead would be helpful...that is pacing the left ventricle. This was complete about 3 years ago, I pace 100%, ejection fraction is now 55% and I feel great, all signs of cardiomyopathy gone. 

You know you're wired when...

You can feel your fingers and toes again.

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I'm 35 and got my pacemaker a little over a year ago. It definitely is not a burden to me. In fact, I have more energy (which my husband enjoys), can do more things with my kids and have weight because of having the energy.