Pacemaker since 3/2021

I've had my pacemaker since 3/2021. It was sudden, my husband noticed one night out of the blue that my speech was off, I wasn't making sense. He quickly dialed 911. The paramedics came and found my heart rate to be plummeting to 27. I was quickly transported to the hospital and given a temporary pacemaker to "buy time" and then roughly 4 hours after I was in the OR again for the placement of my permanent pacemaker.  I woke up feeling drunk. I don't drink, nor smoke but the one time I did get tipsy I remember and that's how I felt when I awoke from surgery. My legs felt like rubber, heavy and sluggish. I immediately felt vertigo, the worse I've ever known. That was nearly 3 years ago and it's never left. At times it's a little better but not sustainable. I don't have any headaches so I'm thankful for that.  At this point I should clarify:  I'm a polio survivor, I got polio July 1949, age nearly 3, prior to the release of the Salk vaccine in 1955. I survived the iron lung, and re learned to walk with the help of my grandmother teaching me to swim, before I even walked again.  I did a pretty good recovery, grew up, went to college, married and had 3 kids, and life carried on. I was a survivor.  Then I started falling but I continued working and finally I had to retire early due to fatigue. But even still I was active and I used my forearm crutches and still managed to do my work and keep the house up. Then the pacemaker happened, and as I said I awoke feeling strange and not myself.  I still can't walk, I'm still wobbly, I still have no stamina, nor strength, nor balance.  The room is moving all around me and my head, and I feel as if the floor is moving underneath me, and I'm never stable. Standing is too scary and much too wobbly. I realize I'm older but I don't think I should be this tired and this out of sync.  I've been to 3 cardiologists. Presently I have sn appointment coming up with a electrophysiologist December 1.  I'm anxious for that appointment. 

My vision is also out of focus, blurry and fuzzy. My eyes have been checked, my glasses only needed to be slightly changed.  I had cataract surgery on both eyes so it isn't that.  My eyes are fine. Yet I can't focus.  I'm wondering if anyone else has a similar problems or experiences as me. I'm so frustrated and angry.  It's not just scary it's quality of life is so poor. Please contact me or post if you have been affected by your device. I'll post again after I see the newest dr. 
I wish you all good health and hope you're all well. Best to all, Conzie. 🩷

edit: 10/6. 
i'm stable as far as my heart rate today, it's set at 70, but I'm often 66-70 so it's fine, my blood pressure is also doing very well.  Example yesterday it was 126/67. My HR was 68. There's no issue with my vitals. I'm sort of answering a post that was the one reply to my post above. I'm new here so I'm just t trying to put myself out there to find ways of coping with these problems and symptoms I've had ever since my pacemaker was implanted. I can feel just fine sitting, almost normal. The minute I move to stand I'm wobbly, dizzy and the vertigo starts.   My overall body feels weak, and I'm very tired, no stamina. But the thing is, all through the days and nights my HR and my blood pressure remains normal. My oxygen levels stay between 94-96 always !  So it's so strange that I have these crazy days where I'm so weak, exhausted, overwhelmed and I can't even perform the easiest tasks. I have no balance so using my forearm crutches is even out of reach for me, because I can't walk without feeling like I'll fall.  My biggest fear is falling. I'll go to as many drs as I can find until I can find some answers.  


2 Comments

Hello

by piglet22 - 2023-10-06 07:11:02

You have a lot going on and most of it is outside my experience so hopefully others will help.

Obviously, this forum is to do with what might be just one of several problems you have.

What I think you need to is somehow get to the bottom of the cardiac problem and get a cardiologist to explain to you what is going on from their point of view.

The falling and the low heart rate all go together and if you are getting or were getting down to 27 beats per minute (BPM), you are not going to be feeling at all well.

The pacemaker (PM) should be sorting out the arrhythmia, but they aren't infallible.

Do you have things like a home monitor? It's fairly standard practice now to be issued with a bedside monitor.

Are you doing some basic checks for yourself, like taking and recording pulse? You need to have a decent blood pressure monitor with arm cuff and take and record readings maybe twice a day.

Get a decent oximeter to keep track of heart rate and oxygen levels.

You can develop conditions even with a pacemaker that it won't cope with.

I would recommend that if you are getting symptoms like dizziness or lightheadedness or your readings don't look right, then get to your emergency department ASAP.

What you really need to get is some reassurance and a way out of this distressing situation. December 1st sounds like a long way off and it might be better to have a word with your GP in the meantime.

Good luck

 

How about a neurologist?

by Good Dog - 2023-10-07 07:42:55

I completely agree with everything that Piglet22 suggested.

It sounds like you have your heart block problem fixed with the PM. Although arrhythmia's remain a possibilty. That is something your PM cannot fix. Your Cardiac (EP) Doc or a PM Tech should be able to interrogate your PM (now that you have one). If you or your husband record the date and time of those symptoms they may be able to look back to try to determine if your heart is doing anything crazy. Here is the thing; In addition to a possible arrhythmia, your symptoms could be caused by anything from an inner ear problem to a nervous system issue, etc. So if you don't get to the bottom of it with your heart Doc, don't stop there. Find a good neurologist.

I am confident that if you continue to make a persistent effort to get to the bottom of this, you will eventually get the answers you need. 

BTW: In your original post when you said that your husband noticed that you were not making any sense; My wife says that about me all the time. So in my home, that would not alarm my wife. No, it would just irritate her as is usual! lol....

Seriously, keep working on this till you get to the bottom of it. I am confident that you can and wish you nothing but the best. Please stop back in and let us know how you are doing.......... 

Sincerely,

Dave

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