Well, I’m in the Club Now

Hello everyone,

Today, I officially joined the club.

I am 33 and recently (in February 2022) started experiencing syncope episodes with asystole. I would wake up at night feeling hot and nauseous, and then would pass out. Didn't matter if I was standing, sitting, or lying down.

The docs diagnosed vasovagal syncope and implanted a loop recorder. We caught a 7-second pause once when the EMTs had me hooked up to ECG as I passed out. Then a couple months later the loop recorder caught a 10 second pause.

The docs tried reassurance, education, and conservative measures, assuring me that this is a benign condition, despite the pauses, but I just couldn't come to grips with the idea that my heart was randomly pausing at night and that that was okay. I became terrified that this could start happening during the day, and that I could injure myself when I least expect it. I developed severe anxiety and panic attacks over the whole thing.

The docs said the official recommendations would be a pacemaker if I was over 40, but for younger people it was a case by case basis. So initially the advice was to just lie in bed until the episodes pass, avoiding injury. I did this with the 10-second Asystole, and this time didn't physically injure myself, but the psychological damage was still too much for me.

I did quite a bit of research regarding vasovagal syncope and it's treatment, and eventually, I decided to try the pacemaker, as the fear was just destroying my life and I had been trying things like meditation, mindfulness, CBT therapy, and anti-depressants for months to try to overcome the anxiety.
 

I now have a Biotronik Enitra 8 DR-T. It's a rough first day, and it's hard not to worry whether I made the right decision to treat a "benign" condition in such an extreme way.

There is also the possibility that I may still pass out due to blood pressure drops, but at the very least, I know my heart won't stop while I'm out anymore. The best result would be to have the syncopes stop altogether, with second best being that they become less frequent.

 

Now I'm worried about what the first days with the pacemaker will be like, and how the recovery will feel. I'll be released from the hospital tomorrow after an x-ray and a check that everything is working properly with the pacemaker.

I'd be especially interested to know how others have faired with the Biotronik CLS function, and if they needed to make some settings adjustments to get things right.

I believe I have a minimum rate of 60 bpm and max 120 set per default. (However, I'm a little concerned as my heart rate sits around 80 even when resting, and can zoom up past 120 just walking normally.) Does this max number mean my heart rate can't speed up past 120 anymore? Should I ask the doc to adjust this already?

Thanks!


4 Comments

Welcome!

by Julros - 2022-07-20 22:37:36

I can answer a few questions, but I don't think I quite understand the CLS system. You will need some adjustments as you heal, and depending on your level of activity and how well the CLS adjusts to you. Initially, you will need to not lift anything with the arm on your affected side, or raise it over your head or reach behind your back. And you will need to keep the wound dry. How long for activity and bathing restrictions depend on your dr. 

As for the rate limits, those are the standard factory settings. The pacer will likely only kick in if there is more than a 1 second pause in your heart rate ( 60 beats per minute equals a 1 second interval between beats). The high rate is how fast the pacer will pace based on your activity, but it doesn't limit your natural rate. , if your heart naturally beats faster, the pacer will just sit back and watch, so to speak. For me, 30 is as fast as my heart ever beats, so my pacer speeds me up when I need it. My upper rate is set to 155. 

You will get regular pacer checks, also called device interrogations. The pacer records how much it works and when. Based on how much it works, the pacer will calculate how long the battery will last. 

Best wishes and I hope your mind can ease. 

It’s going to be ok

by Lavender - 2022-07-20 22:43:43

My first days with the pacemaker were restful ones. I slept a lot and read a lot on this site. I took Tylenol as needed and used ice on the sore spots with a towel underneath and not for long periods. My left arm was kept with the elbow no higher than the shoulder.  
 

I had been traumatized from all the fainting spells and was initially reluctant to leave my house alone. That soon passed as I learned to trust the pacemaker. 
 

The first thing I realized was that I needed to drink water more often. Dehydration happens. My throat and neck felt odd and I wasn't used to the faster heart rate. 
 

Be good to yourself, you've been through a lot. I can tell you that my life is normal. I feel fine and go wherever I want. It took time. How you feel the first week is not how you're going to feel down the road. It's just for now-not forever. 

Pacing

by toniorr11 - 2022-07-21 04:19:18

Hi there. 

I had my Pacemaker implant on the 9th May and it takes a while to get used to it. I've got a Boston Scientific but aren't they all variations of the same thing?!

I was paced eventually at 60-120. At first I used to feel it kick in whenever my heart rate went below 60 which it did every night watching TV and going to bed. It was a funny feeling but also reassuring because I knew it was working. I was told that all a pacemaker does is stop your heart going too slow. At the higher heart rates it just lets your own AV node take over so you wouldn't feel any different. 

But now I've now had an AV node ablation because I have Atrial Fibrillation so I'm totally dependent on the pacemaker  and it will regulate every beat which, again is quite reassuring  and now that the AV node has gone my resting heart rate is dependent on my pacemaker so I don't feel it at all. But my problem was different to yours in that I had an extremely fast heart rate and thats why they knocked my AV node out.

Recovery from pacemaker implant just takes time. I watched Netflix and did knitting! Your anxiety will go, I'm sure, once you start feeling confident with your pacemaker. You've got a seriously good piece of technology helping you out now! 😊

you made the right choice

by Tracey_E - 2022-07-21 09:28:52

I don't know how they can call a 10 second pause benign!!!! Age has nothing to do with it. How old was the doctor who didn't want to pace if you're under 40? Because I had a cardiologist like that in the 70's and 80's, that has not been the way of thinking for a lot of years now. Heart pauses and living in fear of passing out is no way to live, especially when there is an easy fix.

120 means it won't pace you over that, your heart can go as fast as it wants on its own. The pacer is a gas pedal, not a brake, so if your heart is going faster on its own, the pacer will just sit back and watch. I expect you won't pace much at all, just a few seconds here and there when your heart pauses.

The pacer will give you peace of mind that your heart will not stop now, you've got a high tech computer back up system waiting to step in as needed. If blood pressure drops are contributing, there are medications and diet modifications that can help with that.   

Many of us here have lived a long time with a pacer and are thriving. I got my first at 27, I'm 55 now, healthy and active. They pacer doesn't keep me from doing anything I want to do, most of the time I forget it's there. If you have any questions about having it long term, please don't hesitate to message me. 

You know you're wired when...

Your heart beats like a teenager in love.

Member Quotes

Try to concentrate on how you’re able to be active again and feel normal, rather than on having a machine stuck in your body.