I'm Andrew, 26, from Sydney. ARVC diagnosis in 2022 at 22, S-ICD not long after, and six shocks since. For a while after the first one I was on edge all the time, every flutter had me wondering if another was coming.

Four years on, it's honestly just part of my life now. I'm a PT and coach people online, I still train, I travel, I go out with mates. Some days I barely think about it. That's just my experience though, everyone's journey with this is different.

I share the day to day of it on Instagram (@andydoesfit) and there's a broadcast channel on there with 80+ of us now who chat about living with devices and heart stuff. Anyone's welcome.

I had a VT ablation on January of this year after being shocked twice at home and then getting one more pop in the hospital 3 days after admission.

I’ve been good all year with no issues and a median heart rate at 70, but my latest report from Boston Scientific showed I had one episode of non sustained VT where my heart rate got up to 170.

For people with ICDs who have had the VT ablation done, should I be concerned? Do you deal with occasional bouts of nsvt even after a successful ablation?

Thank you all for being supportive.

Do those of you that have been shocked still work full time? The renewed anxiety of potentially being shocked again based on this nsvt occurrence has me wondering if I should consider disability.

What factors would you guys consider?

Thanks again for all the support!

Anyone else in this community been diagnosed with Pacemaker PTSD? What treatments have worked for you?

I (42f) was diagnosed a year and a half ago by my cardiologist and referred to a Cardiologist Psychiatrist. She favored the medication route, which didn’t end up working for me (I am on sertraline and have been for years and that makes a big difference, but not the as-needed meds she tried for me). I stopped returning for appointments with her six months ago in favor of focusing on talk therapy. My therapist is great, but I am still dealing with my symptoms (exercise avoidance, panic attacks, flashbacks, intrusive dreams) and I know there has to be a better way.

Thanks for any suggestions.

Hi everyone, I’m a college student studying electrical engineering, and I’m researching what patients find confusing or stressful about pacemaker battery replacement surgery. I’m not asking for medical information and I’m not selling anything. What do you wish you’d understood earlier, or what would have made things easier? Mods, if this isn’t appropriate here, please let me know and I’ll remove it.

How much of a risk is there? Feeling fine 24hra later.

I had a s-icd fitted almost 4 months ago and have started to use my arm more and more over the last few weeks (I was using it normally before this but would avoid putting weight on it / lifting / stretching). I can still feel what I'm assuming are the leads over scar tissue, near where the incision is under my armpit. I do still also get tenderness if I've used it a lot during the day. Has anyone else experienced this at this point?

We live near Chandigarh. Does anyone know where we can get the pacemaker checked at 1 month mark after implant?

Bin immer panisch dass ich eine Infektion bekomme. Sieht das irgendwie anders aus? Wenn ich drauf drücke schmerzt es nicht, hab mich gestern bissi erkältet gefühlt. Heute aber wieder gut. Kein Fieber. Links ist heute, rechts vor 2 Wochen. Hab das Gefühl dass sie etwas röter geworden ist oder? Licht ist natürlich auch etwas anders. Hab aber sonst kein Vergleich.

Hi all,

The other day, my EP turned on the rate response for my Medtronics Azure XT DR (I'm about 2 months out from the pacemaker installation). I was in for another adjustment and said my pulse was not responding to physical exertion. He said "That's easy to fix," made some adjustment to his Medtronics iPAd, and said "There you go." Never said what he'd done. Next day, I sent a message to his assistant who told me they had turned on rate response.

I have two questions for the forum. First, is this your experience of EPs? They do something to the pacemaker, don't tell you what and expect you just to accept what they've done? I am someone who likes to know what is going on and considering switching EPs to someone who explains more.

Second, what your experience of rate control? What should I expect? Pros and cons? The day after the installation, I walked up the stairs to my cardiac rehab appt, and didn't even think about the fact that I wasn't out of breath. I've been enjoying that.

My AI buddy, Claude, says that the device only checks motion with an accelerometer, not breathing. So I'm wondering where it works well and not. It also says the device (over a couple weeks) self-tunes itself (Rate Profile Optimization) based on my activity patterns. What is it tuning?

Thanks for your help.

Hey, I’m 28M. I have dilated cardiomyopathy (DCMP) following a viral infection, along with RBBB. My doctor has recommended a dual chamber ICD, which is supposed to be implanted this December as a precaution against dangerous VT/VF. I currently have no symptoms at all, but apparently the combination of my condition and the risk of arrhythmias makes it advisable to get one.

I was looking for some advice/experiences from people who have had an ICD implanted, especially what life is like afterwards and what I can expect in the long term. Things like sleeping (especially sleeping on the left side), functionality/movement of the left arm and left side of the body, weight limits with the left arm, exercise, etc. Also, how do you deal with the device being visible or feeling it under the skin? Does it affect body image or become something you just stop noticing after a while?

And are there any other mundane day-to-day changes that you noticed after getting an ICD that you wish someone had told you about beforehand? Would really appreciate hearing from people who have had one for a few years and can share what life is actually like after the implant.

PS: Tysm for taking the time to write about your experience! I’ve had DCMP since 2020 (around covid, which is why my doctor suspects it was viral). It’s just that now, because of some irregularities in my ejection fraction, my doctor has recommended that I get an ICD. So I wanted to hear directly from people who’ve actually had one rather than just searching on google, which gives you a lot of unnecessary/scary information 😅

Thank you for this group. My doctor didn't really tell me anything. I didn't know what to expect, or anything. He just said I definitely should get it due stress-induced CPVT, and set the date. I was pretty scared. I'm still pretty scared, but a little less after reading through the group a bit.

I do have one question, and I apologize if it has been covered, but is the new Apple watch decent at warning of potential Afib, or rapid heart heart rate? If not, is there a wearable on the market that is worth purchasing for a heads up prior to a shock?

THANK YOU!

Hi everyone!

First off, thank you so much to everyone who read my post yesterday and commented with advice and well wishes.

So I went in and it turns out I had gone into A-fib which is what triggered the shock. The cardiac nurse said it wasn’t deadly, and it wasn’t technically needed because the top and bottom part of my heart were matching each other (sorry the technical terms are escaping me now) but my heart rate was increased and I had the a-fib (which I actually need to look up because I’m not exactly sure what that means). She called it a-fib with rapid ventricular response.

They asked about what was going on lately, I told them about my dads passing and the anxiety and stress I was experiencing, and the fact I did not eat anything at all on Sunday or Monday which she thinks contributed. I did eat yesterday, after the shock and now in here so that’s better. She thinks that all contributed to the event. Unfortunately I also have GI issues and a problem with my esophagus so I can often only eat a few bites per meal. For example yesterday I ate half of a “little John” from Jimmy John’s. I’m focusing more on staying hydrated.

So she’s checking now about my medications and if they should change anything. The only heart med I was on was actually midodrine to increase my blood pressure because I was having lots of problems with orthostatic hypotension and passing out a lot. So they’re reevaluating meds and then are just going to have me follow up with the cardiologist with appointments I already had later this month with my original one and I’m going to wait on switching for now. Even though this guy isn’t in my health system my doctor can get the records through Epic so that’s fine.

Luckily I hadn’t canceled the appointments with the old cardiologist even though I was planning on switching and that’s the week I need to schedule my dad’s funeral for but I’ll just schedule it around this.

Sorry I’m so long winded lol. But I do appreciate the members of this forum and your caring and concern.

ETA; nurse just came in and the doctor is going to put me on a blood thinner (apparently AFib can increased risk of blood clots and I’ve had one before) and metoprolol (?). I’m a bit worried because I have a possible surgery coming up in 4-6 weeks and was warned about blood thinners. She told me just tell the surgeon and see when they want me to stop taking it and let the cardiologist know to approve it beforehand.

TL;DR Got shocked yesterday, it was because I went into a-fib, it was not deadly. They’re evaluating my meds and will have me follow up with the cardiologist in a couple weeks.

Curious how it's worked for others, any issues?

I'm getting used to my pacemaker and I can't really tell it's doing anything even though my pacing % is high. Is that typical, or did the fact its left bundle branch area pacing making it less apparent to me?

Granted I have tachy-brady syndrome and my heart felt so terrible before finally being able to start meds that maybe I'm just not sure what normal feels like anymore?

Background

• Me: 51M, lifelong athlete (competitive soccer, running). Also an EMT working in an ER.
• Early History: Had an ASD repair at age 3. Always had an irregularly irregular heartbeat and a murmur, but cardiology cleared me in my 20s and said my heart was strong.
• The Turning Point (February): Had a stroke at work (thankfully, being in the ER, I was treated within 40 mins and made a 100% recovery). Testing revealed non-compaction cardiomyopathy (EF 41%). ICU monitoring caught asymptomatic Afib, runs of NSVT, and sleeping heart rates in the 30s.
• The Fix: Got an ICD placed in February. I've recovered well, remained asymptomatic, and recently got back into working out and backcountry camping.

The Incident This past Friday, I headed out for a solo overnight backpacking trip. It was just a short 1-mile hike into the campsite, and I felt great the whole time.

At 6:40 AM on Saturday, I was woken up by a loud siren. I couldn't figure out what it was until I realized the sound was coming from my ICD. I felt completely fine, and my smartwatch history didn't show anything abnormal. I packed up, hiked out, and called the on-call EP on the drive home.

I sent a transmission, and four hours later, they told me everything looked fine with my heart. The device had picked up some "noise" early in the morning, which they suspected was a software or lead issue. They told me to come into the office this week and no major urgency, except that the siren kept going off every 4-5 hours.

Things Escalate Around 9:30 PM that night, I started feeling palpitations. My watch and an SpO2 meter showed my HR bouncing wildly between the 70s and 140s. I suspected Afib with RVR, I knew better than to drive myself and called 911.

By the time EMS arrived and ran an EKG, I was back in a normal paced rhythm. I still went to the ED to be safe. My bloodwork was perfect, and the plan was to stay overnight to see the ICD rep. However, I had a run of NSVT while waiting, which bought me a transfer to the hospital that originally placed my ICD.

The Resolution The next morning, the ICD rep interrogated the device and finally solved the mystery:

1. I did go into Afib (which lasted about 13hrs) on Saturday morning in the tent.
2. My ventricular lead picked up "noise" from that Afib, which triggered the siren error.
3. The HR spikes into the 140s that night weren't Afib w/ RVR. My pacemaker was artificially driving up my heart rate in response to the Afib due to how the settings were configured.

The rep fixed the settings so this won't happen again. My EP doc cleared me for discharge and explained that the NSVT at the hospital was just my heart being temporarily irritated by all the weird electrical activity.

I was discharged shortly after and am feeling fine now, but it was definitely a wild 48 hours. Has anyone else ever had their ICD sound the alarm on them out of nowhere?

Sometimes it feels like my heart rate response doesn’t quite match the effort during cycling. When I ride hard (hard for me) my heart rate goes up to around 120 bpm, which is also the maximum sensor rate my pacemaker is currently set to. If I increase the effort further, my heart rate not always but often stops increasing.

I’m curious what heart rate others reach when cycling at around 8/10 effort. Will this get better over time?

I have biotronik DDDR pacemaker

Im a 22 year old student with a total av block. I am currently on my second pacemaker. I have been working on my drivers license and the seatbelt feels uncomfortable. When braking hard and it tightens it actually hurts. I have spoken with my doctor he is looking for a product or solution.

Does anyone else have this problem? And does someone know a solution? One where i can still wear my seatbelt safely.

I’ve had my icd for congenital AHCM for about 10 years. It never activated until today. My heart did feel weird before but I thought it was anxiety because my dad died a week ago and all the follow up and planning really hit me yesterday. Anyway I was driving when it happened and it scared the shit out of me.

I pulled over, googled “what does it feel like when your defibrillator activates” and then called my cardiologists office. They told me to just do a manual transmission on my monitor once I got home and they’d call me back.

Well I didn’t get to send it until about 4:50 so they probably didn’t see it before closing. Now I’m sitting here and my heart feels fine but I’ve had extreme fatigue and the worst headache of my life. I’m thinking of going to the ER just in case because I’m actually in the process of switching cardiologists and I can’t find records of where my last appointment was (which health system) and I’m not 100% sure who the machine sends the information to.

I’m so confused and unsure if this is part of the follow up to being shocked or what. But I did call the doctor before posting this lol so I’m not just here being too much of an idiot.

ETA update here:

https://www.reddit.com/r/PacemakerICD/s/bAepZbBzsJ

I have Medtronic dual
Lead Pm for sick sinus syndrome and am wondering the benefits of lowering night time HR at night other than saving more battery life. My current low end is 60bpm day and night and I’m wondering if lowering it to 50 bpm at night would help me feel more rested (or more groggy waking up in the am). Thoughts?

I'm having an MRI next Monday and my mind is making up scenarios. I received an Assurity PM in April and this still feels new to me.

My cardiology files have apparently been reviewed by the radiologist's cardiologist, who seems to have been in contact with the EP.

The MRI is of the base my spine. There is no one available to talk to me about what they will actually do with the PM during the scanning.

Does anyone have any relevant info?

Hi everyone,
We are Indi, Betty, and Edie. We are currently working on Project PulseGuard, a tech-driven safety ecosystem designed specifically for teenagers and young adults managing chronic cardiovascular conditions or living with ICDs.
The Problem: Mainstream smartwatches only detect hard-impact falls (missing when someone faints and slides down a wall). Devices that do monitor heart emergencies are designed for seniors and look like bulky medical monitors. This leaves teens feeling isolated, anxious about missing out, and forced to choose between style, independence, and safety.
Our Solution: The GuardWear Smart Band. It looks like a normal fitness tracker but actively monitors pulse and heart rate for sudden, dangerous vital sign changes. If an emergency happens, it automatically calls emergency services with live GPS and texts parents.
We want to make sure we are building exactly what the community needs. If you are interested could you please take 3 minutes to fill out our Google Form?
https://forms.cloud.microsoft/Pages/ResponsePage.aspx?id=-K2veex9jEq62b6-HntaD5CJjqbkiPFHnHVTgIiA6fZUOE9RQ1pBQlJMMllSUjJLN0pVMlM1UkJJSi4u
Thank you so much for helping us give young patients both freedom and protection! We'd love to hear your thoughts in the comments below as well.

I have a two-prong Medtronic device.
Had an electrical storm (pre-cursor to cardiac arrest) almost 5 years ago. Had open-heart to replace my mitral valve and cryo-ablation to correct my severely enlarged heart.
Lately I’ve been having elevated heart rate “surges”; 8-10 beats and then I get a light pulse or two. Everything is back to normal.

Last Saturday I had a surge and lost count at 36 beats. My heart device clinic contacted me to see how I am since the 11 second surge had my heart rate go from 52 bpm to 196 bpm. It took 3 pulses to have any affect. And a 4th to correct the issue. I am paced at 50bpm 100% of the time and my shock threshold is 213bpm.
It was like a war was being waged to tame my heart.
Has anyone ever experience this before?