r/PacemakerICD

Hello! This is my first time posting, as I have read before. I received an SICD due to a SCA in early 2024. Earlier this week I received my first shock. I passed out/fainted in my bathroom and apparently had two events total which resulted in three shocks. Looks like I may have been in torsades then VFib. I'm 40 now and was 37 during my SCA. Still processing a lot of anxiety from this latest incident as I rememeber all bit a small portion of it. The anxiety is REAL of it happening again whereas before I thought it may never happen. I have no known cause identified for my SCA event and this most recent. I was hoping this community could provide a bit of support. Thanks!

I just got a leadless pacemaker implanted on 1/1/26. Long story short I was nearly passing out, originally told it was “panic attacks” and when I almost passed out again a month later, I advocated for myself to get a cardiac work up. I am a 32y.o. F, ICU nurse, at a hospital that specializes in cardiac care. The Monday before Christmas 2025 I receive multiple frantic phone calls/messages to see a cardiologist immediately. Zio patch said “high grade AV block.” Turns out it was a Mobitz 2 with RBB. A week later I went to work feeling awful, my coworkers walked me to the ER, and I got admitted. Spent 4 days in my own hospital. Everything happened so fast that I didn’t have time to process what was happening. I’m now 4 months out, have had multiple adjustments, and feel every paced beat. I’m symptomatic with heavy pacing, my EP is fully aware and I’m redoing the Zio patch and have a stress test the end of this month.

I’m massively struggling with going from being a completely healthy person who just lost 52 lbs within the last 2 years and in the best shape of my life, to needing a pacemaker with no reason why (genetic testing in the works). I don’t know anyone my age who needed a pacemaker and have nobody in my shoes to really talk to. I know I should be grateful that intervention was done so quickly and I have an amazing doctor I know on a personal and professional level, but I cannot help being very sad about my situation. I was hoping there may be other people close to my age (and bonus in the Bay Area, CA) that I could talk to.

Hello, I got my EV-ICD just a week ago and im wondering if anyone here had inappropriate therapy from both devices? Wondering, how EV-ICD therapy feel like compared to S-ICD? Energy should be lower on EV, so logically speaking, it should not be so painful, or?

They changed my S to EV, because i had 4 inappropriate shocks and that caused PTSD

Having EP study next week (May 18). The dr says he is very likely going to put in an ICD during it because prior echo and holter monitor studies showed arrhythmic mitral valve prolapse and some very brief tachycardia episodes. He says I can pick whether to get S-ICD or T-ICD.

I also have POTS, which means my autonomic system messes with my heart rate pretty regularly. The doctor has not investigated the POTS at all, which means he’s not aware of just how much it impacts my heart rate.

I am a pretty active person. Female, 42. I rock climb and whitewater kayak etc.

From yalls experience, which would be better for someone like me? I am leaning towards T-ICD because of the chances that both the POTS and the exercise could trigger erroneous shocks, but maybe dislodging the leads would be way worse with a T-ICD?

Anyone have experience with an arrhythmic mitral valve prolapse?
Anyone have POTS and an ICD?

I’m a 19 year old girl and I had a heart attack a month ago. I found out I have a genetic condition called dsp. I had a heart monitor on for 2 weeks and during those two weeks I had 2 vtachs and my doctors are telling me I’ll need a ICD. I have a very thin body and I don’t gain weight easy. I don’t have large breasts and I’m worried about how much it will stick out of me. I’ve talked to my doctor about this and he told me he would advocate for one to go under my muscle if possible. That makes me feel a little better but I’m worried still. I know it’s superficial but I’m worried about how my body might look and how I’ll feel about myself. Im a model and don’t want it to affect jobs I get and how confident I feel. I also wanted to be a pilot and already have some flight hours, and now I’m finding out that that won’t be possible anymore. I feel like my life’s been thrown upside down and I’m feeling very alone bc I don’t know anyone besides some older family members that have this sort of problem. Anyone have any good advice?! 😩😩😩

Hi, I had an ECG holter a few months back and apparently I had an episode of Mobitz II. The note says, “08:46, epizode of Mobitz II - < 2 s”. The cardiologist said not to come back unless I'd start fainting. I didn't question her before I went on Google and saw that it was actually dangerous. Is it possible to just have it once and never again? Should I go check with a different cardiologist? I do get sharp pains in my chest (always assume it's from anxiety or something) and sometimes I get this feeling like my heart skips a beat, I feel my blood run cold, and feel a little faint. I've never fainted though, it doesn't affect me too much.

EDIT: F21

I was having trigemini and bigemini PVC’s. The doctor highly suggested that I have an ICD due to the fact that they were so close to the electrical junction box of my heart. I did not want one at all however, I gave one in at the last minute now I am feeling depressed and hate my decision. Ablation although an option wasn’t going to do any good due to the origin so close to the main electric box of heart.

The reasons for this is I feel like it’s really gonna limit my physical activities. I’m a 68-year-old male who loves to be active hiking biking fishing golfing you name it. I have always been really active my whole life and it’s just popped up. Plus I have scar tissue on my heart at a non-heart attack location.

I also don’t like the idea of having the object in. It’s a little late now.🤷🏼

I guess I am posting this in the hopes that there is someone out there that felt the same way I did to help with the depression.

Thanks

Hey folks. For some context, I've had my pacemaker since I was 2 days old. As a kid, my initial pacemakers were placed in my lower abdomen. Got my first adult pacemaker in 2020, and I'll have a pacemaker until I'm elderly. Had multiple and constant surgeries growing up for battery replacements, lead repairs, etc and have accepted this is my life until I kick the bucket.

Anyway, this got me thinking, since I see a lot of people ask others what life is like WITH a pacemaker, I'm curious to know what life is like without it, especially as I've been paced 24/7, with a dual chamber pacemaker. Only time I ever have my pacing "off" is when I go to the cardiologist and they turn me off for less than a minute. So, what was life like for you folks who got your pacemaker later on? Did your heartbeat feel differenf? Could you feel the irregularities? Does your pacemaker "feel" weird to you? Could you notice the pacing? I'm genuinely curious about it all. And feel free to share anything else. 😄

Monday my doctor called me and told me I have a 3rd degree heart block. I wore a heart monitor for two weeks. She said good thing is it happened while I was sleep.

I don’t know if I will need a pacemaker or not. It only happened one time from what the monitor picked up. It also picked up a 2nd degree block. I’m so scared and nervous. I have babies. I cried so much Monday.

Is the pacemaker surgery outpatient?

I've seen lots of posts saying how people walk X far, or cycle X many times a week etc, but whats the deal with us and running? Is this a flat no-go, is it doable but with a max heartrate/pace? Is it perfectly fine as long as you listen to your body and don't overwork?

I keep thinking of themat Christian Eriksen footballer who had a CA, but eventually returned to Premier league level football, and take inspiration from him, but is that unrealistic generally?

If you haven’t seen the news an Avacamten study completed a phase 3 trial and showed good results for symptomatic NON. obstructive HCM patients. Dr Marty Maron said it’s transformative.

https://www.youtube.com/live/-AJ7mMuaUMY?si=kZP13ImxGv14ieX1

Got my icd 8 months after my zio showed rest heart rate of 174 and down ro 19 with 3 second pause.

I’m in amiodarone -100mg , now my thyroid -tsh level ,t3 and t4 are off . My endocrinologist started Mr on meds .

I wrote my ep -they said I could try going off amiodarone and to discuss with Dr next month.

Unfortunately my arrythmia is multifocal -can’t ablate it . Propfarone only lowered pvc burden from 1k percent to 8. Amiodarone I’m under 1. I tried a hospital admission solatol but my qt spiked to 528 -dangerous .

I know amiodarone is toxic -liver,thyroid,have to watch for pulmonary fibrosis.
But I’m worried about gojng off it , anyone else went thru this or thoughts ? Thanks

Hi everyone. I’m a 27-year-old male, and I’m reaching out because 6 months ago, a Holter monitor test showed an average heart rate of 59 bpm. However, while sleeping, my heart rate dropped to a minimum of 28 bpm with several sinus pauses.

The device shows that between 2 AM and 7 AM, my minimum heart rate was 30 bpm and the average was 45 bpm.

The specific results were:
• 4 isolated supraventricular premature beats (SVPs);
• Normal AV and intraventricular conduction;
• 18 sinus pauses over 2.5 seconds, with the longest being 4.11 seconds, all occurring while I was asleep (meaning my heart stopped for over 4 seconds).
• Sinus rhythm throughout the entire recording.

I’ve had several ECGs and discovered I have a Right Bundle Branch Block (RBBB). The doctor who reviewed the test didn’t even mention it—I only saw it in the report myself—and I’ve been told it’s often considered normal.

I have never felt any symptoms: no fainting, no dizziness, and no serious episodes, thank God. But these numbers terrified me. Two months ago, I found out I have high blood pressure for unknown reasons. I have a sleep apnea test scheduled for next week, though my doctor says it's unlikely since I’m athletic/lean and don't snore much.

I do weightlifting but not much cardio. I’m asking about this because a pacemaker was initially mentioned as a possibility if these numbers become dangerous. In three weeks, I’ll be doing a 7-day Holter monitor to see how things look over a full week. Honestly, I’m scared of the results; I just want these pauses to go away.

This has been a huge life lesson because some days I can’t stop thinking about it, fearing I might die in my sleep. What do you guys think? I don’t mind getting a pacemaker; I just want to live well and feel like the doctors are paying attention. I’ve sought three different opinions, and none recommended a pacemaker yet because I’m young and asymptomatic, but the numbers are still there. My resting heart rate often drops to 43 bpm while sitting.

My doctor says it is almost certainly due to high vagal tone, but I just want this resolved. What are your thoughts? For those of you who are younger and got a pacemaker, what was the reason?"

Hi everyone,

I’m currently in my 7th week of post-op recovery after my 4th pacemaker replacement. I’m 36 years old.

I still have a strange sensation in the pocket area, along with a feeling of pressure. The scar looks fine on the outside, but I’m still not fully used to how it feels. It feels quite heavy at times, and I also get a mild tickling sensation in my right arm.

On top of that, I’ve been struggling with fear and often feel low, isolated, and emotionally overwhelmed. At times I feel like I might be a burden to my loved ones, which makes things harder emotionally.

Is it normal for recovery to take this long and for this kind of heaviness to linger? And how do you cope with the emotional side of recovery like this? I’m finding it quite difficult at the moment—feeling restless, crying often, and generally in a low emotional state. Any advice or shared experiences would be really appreciated.

🌸

48 y/o male here. Thanks for everyone who contributes to this group, I’ve found a lot of info here over time and it’s helpful.

I wanted to share a little of my ongoing saga to see if anyone has anything similar and really just compare notes. My mom passed in 2015 unexpectedly at age 62, we did some genetic testing as part of a university cohort and found she along with many of her family members, including myself have the RBM20 genetic variant. Really never had any issues and have led an active life. Fast forward to right around early 2021 and I started to experience afib. I was under the care of a regular cardio doc and started to see an EP due tot he afib; it wasn’t debilitating for me just annoying when it would happen and my doc implanted a Boston scientific s-icd in late 2021 as some insurance.

My afib persisted and in early 2023 I had an ablation and successfully removed it. Never had any further afib and as of early 2026, my device never went off

Fast forward to mid February 2026, I had an episode of VTach which shocked me twice and successfully controlled the VT. Over the next few weeks, I had two different VT episodes, a total of 6 more shocks. Ended up in the hospital, got put on Amiodarone as a bridge until I could get a VT ablation.

End of April, had the procedure but the doc was unable to find the arrhythmia as it was deep in my heart tissue. Path forward was decided to stay a couple days longer and begin Sotalol, 80mg twice/day + 6.25mg carvedilol (I had been taking carvedilol for a few years at this point as a precautionary measure).

I feel much better off the Amiodarone and generally I feel pretty good. I am two weeks past the failed ablation but seem to be good on the current meds, working out again (easing into things) and I haven’t had any episodes or shocks for almost three months now. I do seem to still have some anxiety, I was given a low dose (25mg) pregabalin which i am still taking twice a day…I’m going to start waning off of this.

The shocks still linger in the back of my head but it’s more mental than anything. It’s been a weird feeling months here but feel like I’m headed in the right direction. Long term I guess one thought is my ICD battery will need replaced within a year and they might possibly change it out to a never device which is more targeted for VT therapies and does have some pacing functions (so in concept it attaches unlike my ICD which doesn’t).

If anyone has RBM20 or anything similar - good or bad w the medicines or anything relatable - appreciate any thoughts. Thank you!

I had a SCA 2 weeks ago and have a defibrillator/ pacer implanted last week. How long did those of you that fly,wait before going again? Also, any problems or concerns? I’m hoping to go to Italy in September for a wedding. Thanking you in advance! ☺️

I was so nervous about nothing. My primary doctor had me super nervous and the cardiologist was like it happened in my sleep so I will be fine.

He said since my heart rate on the treadmill got up to 92 that means that my heart is performing fine. He said he does recommend a sleep study which I will have next month.

I’m still a bit nervous because your heart stopping in your sleep is scary but the cardiologist said I’m fine so I guess I should be super happy!

hey lovely humans - are these underwater activities just a flat out no for us pacemaker/ICD folks? has anyone done any scuba or snorkeling post device (or alternatively been told they should not)? would appreciate any of your insight and/or experiences.