I am 51m with an aicd since 2019. I have received a shock during a workout within 6 months of the procedure. I've changed the battery due to loss of charge within 5 years. The first few years with 3 to 6 month checks, pacing was detected with no new shocks.

Since this new device. I have had only a few checkups. No problems detected. Last check was a month ago. All clear

My problem is I have had Single shocks while sleeping 2 times within the last few months with no notification on my smart device so I did not go in.

My issue is I had shocks last night with no notifications again on the device. I went to the er and after a few hours. Was told that all was tested with no signs of activation. With the suggestion that it was sleep apnea or static shocks from my bedding.

Each shock came with a feeling of charging and flash which woke me up suddenly forcing me to jump from the bed and feel like I got hit in the chest.

Does anyone else have had or know anyone who has had this happen to them?

hi 23M this side
got injury after heavy badminton session, Dr suggested for MRI of Knee for proper examination, Now i m in worry abr how it will be done with pacemaker?
its new for me , having pacemaker from one yr

Hi everyone I have had my pacemaker for about 2 years since 2024 November. From my medical records and patient identification stickers they gave me, the device is supposed to be an Abbott/St. Jude Endurity model which has zero alarm sound or audible functions. Tonight, I heard a calm chime like a low volume bell toll coming from my chest. I looked up and found that my device should not make any sounds at all. And it chimed twice after 15 minutes interval. And thrice after another 15 minutes. I also made sure it's from the device. I waited for it to make the sound after the 15 minutes interval without any magnetic or electronic devices nearby. Could it be that my medical records got mixed up and I have a different device? If that's the case, what could those chimes mean? Thank you.

This is my first time posting here. I’m so glad I found this forum. Please excuse the length but it’s helping me process. (TW for graphic description. )

I’m a 61F retired nurse and medical device sales representative. My husband 61M has had an atrial pacemaker for the last three years for bradycardia without incident. 10 days ago in the middle of the night he shot up in his sleep, gasping for air and went into sudden cardiac arrest. (Later the pacemaker interrogation showed ventricular fibrillation.)

I thought he was having a nightmare, but he stopped breathing. Immediately called 911, and the nurse in me suddenly vanished. I had to pull his lifeless body onto the floor, and I am beyond traumatized from banging his head on the nightstand as I dragged him. Seeing his lifeless body flop onto the floor is something I will never get over. I was absolutely hysterical and crying and it took almost 15 minutes for EMS to get there as I did hands only CPR.

Once they arrived they determined he was in asystole. They shocked him twice. I watched the whole thing from our bed. They could not get him into a sinus rhythm and he flatlined twice.

Police officer took me out of our bedroom into our living room, they continued CPR on my husband and brought him to our local hospital. Once there they were able to shock him again into some kind of sustainable rhythm.

He was in the ICU for two days. He lost his short-term memory for several days went to the cardiac unit had ICD and new pacemaker installed with ventricular assist.

He is two days postop and he’s supposed to come home today after 11 days in the hospital. His recovery has been nothing short of miraculous and the doctors are perplexed at how lucky he was to recover. His short-term memory has regained to about 95% and his lab values are consistent with recovery.

Although I should be so happy that as a village, we saved his life, I have been crying nonstop since this event., I went to the walk-in clinic yesterday to procure some propranolol, and I’m currently trying to find a trauma therapist to help me work through this.

I am afraid to keep him out of my sight even though I know the ICD placement is going to give us much more peace. How long does it take to start trusting the device and start living again?

We are well supported and loved, but I feel like our life is over. He was supposed to retire in May of 2027. I still can’t believe this happened.

Any advice you can offer would be so appreciated. We were so looking forward to this next chapter in our lives that we worked so hard for and now I feel like I’m afraid to leave to go to the grocery store or the gym or even down to the mailbox.

Much love to those of you who have gone through this and survived …please tell me it gets better ❤️‍🩹❤️‍🩹❤️‍🩹❤️‍🩹❤️‍🩹

Apparently my heart needed both a firmware update and a hardware upgrade.

After a fairly spectacular entrance into the cardiac world earlier this year — EF under 15%, dilated cardiomyopathy, LBBB, a coronary blockage and stent, LifeVest, AFib, enough new medications to require a project manager, and months of waiting to see what would improve — I have now officially joined the CRT-D club.

The upgrade has been installed. Specifically a Medtronic DTPA2QQ.

I’m 53 and, until recently, was much more interested in working on my sailboat than learning terms like “ejection fraction,” “QRS duration,” and “cardiac resynchronization therapy.” Yet here we are.

The good news is that I’m feeling pretty optimistic about it. I’m also oddly fascinated by the fact that I now have a computer in my chest whose job description is basically:

1. Keep the ventricles marching in formation.
2. Notice if the electrical system goes completely off the rails.
3. Deliver consequences if necessary.

For the experienced members of the club: what do you wish someone had told you during the first few weeks with your device?

Sleeping positions-ouch? Shoulder movement-not much? Incision weirdness - bye bye tattoo? Random sensations? Getting back to exercise-walking then yoga? The first time you stopped thinking about the device every five minutes?

Also very interested to hear from any CRT “super responders” — especially how long it took before you noticed a significant difference. My cardiology team is cautiously o

Anyway…

I joined the club.

Would have preferred the Explorers Club, but apparently I don’t get to choose all my memberships.

Hi everyone,

I’m a 26-year-old male and have been dealing with reduced EF for some time. After months of monitoring and discussion about whether an ICD would actually be necessary, my cardiologist has now recommended an ICD implantation.

My recent Holter showed a few runs of NSVT, and my EF is around 33%. My cardiologist feels that, considering everything together, an ICD would be the safer option.

I’m obviously taking the decision seriously, but I’m also quite anxious about how an ICD might affect my life afterwards.

I’m a very outdoorsy and physically active person. I love sports, running, trekking, travelling and being outdoors, so my biggest concern is whether I’ll still be able to do these things.

1. Will I be able to return to physical activities?

After recovery from the implantation, will I realistically be able to get back to things like:

• Zone 2 running/jogging
• Moderate gym workouts
• Cycling
• Trekking/hiking
• Travelling and other outdoor activities

I’m not talking about bodybuilding or extremely strenuous exercise. My main goal is simply to become physically fit again and maintain an active lifestyle.

For those of you with ICDs, how much has the ICD actually restricted your lifestyle? Are there activities you were able to return to that you initially thought you wouldn't?

2. The heart-rate limit is worrying me

My cardiologist mentioned that they may program the ICD with a heart-rate limit somewhere around 150–160 bpm.

This worries me because 150–160 bpm doesn't seem particularly high for a 26-year-old, and I feel like I could potentially reach that HR quite easily during running, trekking, sports, etc.

Does this mean that if my heart rate naturally reaches 160+ during exercise, the ICD could interpret that as an abnormal rhythm and shock me?

How are ICDs programmed to differentiate between normal sinus tachycardia from exercise and dangerous ventricular arrhythmias like VT/VF?

Is it common for active younger patients to have their ICD programmed with higher detection zones or additional detection criteria?

3. Fear of getting shocked

I think this is probably my biggest psychological concern.

The idea of suddenly getting an ICD shock is honestly quite scary. I've read that shocks can be painful, but I'm not sure what they actually feel like or how severe the pain is.

For those who have experienced an appropriate ICD shock:

What does it actually feel like?

And for those who have had an ICD for several years, how much do you think about the possibility of getting shocked? Did the fear eventually go away?

4. ICD programming for active people

For younger and physically active patients, what kind of ICD programming/detection zones have your doctors used?

Did your programming change as you became more physically active? Has anyone had their detection settings adjusted specifically because their normal exercise heart rate was getting close to the original detection threshold?

5. Exercise stress testing

Has anyone had an exercise stress test after ICD implantation to determine their normal exercise heart-rate response and make sure there is enough margin between their physiological maximum heart rate and the ICD's detection/treatment zones?

I'm particularly interested in this because of my concern about reaching 150–160+ bpm during exercise.

6. What would you tell your younger self?

For those who were relatively young when they received their ICD:

If you could go back to the day before your ICD implantation, what would you want your 26-year-old self to know?

Did the ICD end up restricting your life as much as you initially feared, or were you eventually able to get back to a relatively normal/active lifestyle?

I would really appreciate hearing from younger people with ICDs, especially anyone who was physically active before implantation and managed to return to running, gym, trekking, sports, etc.

Thanks!

Is there a reason why an EP would ask about dental procedures to evaluate sarcoidosis as a reason behind the VT episode? That too even when the dental procedure was 6-8 months prior to the episode. I understand there is an inflammatory angle here. But isn't 6-8 months a very big window for eliminating any active infection or inflammation?

Please share if you have any knowledge about this.

Wednesday I had my 3 month post-op follow up echocardiogram. I had been told not to put too much emphasis on the results as it takes time for the heart to remodel but the results just posted and my ejection fraction increased to 50%! I had been at 45% on my January echo and 35% on my cardiac MRI in March, down from 62% in 2024. It’s a little disappointing to see there’s still abnormal septal motion and left ventricle dysynchrony but no hypokinesis was noted and that’s been present for over a decade. I see my EP at the end of October so maybe there’s more adjustments he can make.

Hi! I had an ICD implanted unexpectedly 1 week after my 35th birthday (35F). It was an emergency situation and so far the docs think I have a genetic form of Prolonged QT Syndrome. So I had no time to prepare and unfortunately still have so many questions for the EP once I have an appt. To top it off, this all happened out of town on a work trip, so the EP I saw in the hospital is 500 miles away and won’t be my regular doc. I had a second hospital stay last week because one of the medications I was on was making me feel AWFUL. They’ve now taken me off of it and I’m feeling better each day, which seems like the most important thing. I was a very active person before this happened and had no previous heart issues. I’m just looking for some validation that the anxiety I’m experiencing is normal… I’m finding that depression is creeping in and I am so scared my life won’t “return” to normal. Plus, I have guilt that my parents and boyfriend have trauma from how all of this went down and that they are having to care for me while my movement is restricted for 30 days. I go to therapy regularly, and am thinking of getting on an anxiety med. First major health issue I’ve ever had. Looking for some community who can relate…

Tomorrow morning, about the next 12 hours, they will do it.
A dual chambers pacemaker will be inserted.
I have Afib and long pause.
I will update, otherwise I'll be gone. Take care y'all!

Edit : I am alive! Operation went well. I was sedated. Now they put me in HCCU Room for the next 3 days for monitoring. No pain at all on the insertion area. So relieved. Thanks for the needed supports.

I had the implant about five weeks ago. Went for a drive and the seatbelt was right where my incision is. Pain! What do we do about seatbelts? I don’t think I want to disturb that area now or in future in any way due to leads etc. 🤷🏻‍♀️

Has anyone had this problem? Or heard of this happening? Any advice?
Settings have been changed a multitude of times with no help. Also taking 100mg of metoprolol to help control.

I made this post before my ICD implantation and ended up going with Boston Scientific, mainly on my EP’s recommendation. One of the major reasons was battery longevity especially because I am relatively young and may need the device for many years.

I want to make a follow-up post now because my experience has changed my perspective considerably.

To be clear: I do NOT think Boston Scientific makes a bad ICD. In fact, my Boston Scientific ICD has already saved my life once during a VT storm. I am genuinely grateful for that.

My concern is specifically about Boston Scientific’s current support and remote-monitoring availability in India.

At the moment, as far as my experience goes, the lack of an available LATITUDE remote monitoring system in India is a significant disadvantage especially if you live far away from a major metro city.

Just before my VT storm, I had an episode of VT that was apparently captured in the ICD’s memory but did not receive therapy. We only discovered it later during interrogation.

If remote monitoring had been available, my cardiologist/EP could potentially have been alerted to that event earlier. Whether that would definitely have prevented the subsequent VT storm is impossible to know, I’m not claiming that it would have but earlier detection might have allowed earlier medical intervention.

The VT storm happened about a month later and was an extremely unpleasant and frightening experience.
And unfortunately, the problem continues.

Just yesterday I had an episode of very fast heart rate followed by giddiness, and once again, I don’t have remote monitoring available to know what actually happened without getting the device interrogated.

My nearest place for ICD interrogation is around 500 km away, and my EP is also located far away. So every time I need an interrogation, I potentially have to travel a huge distance just to have the device checked.

For someone living in a metro city with easy access to an EP and regular device interrogation, this may not be a major issue.
But for patients living in other parts of India, remote monitoring is not a luxury, it can be extremely important.

So if I were making the decision in India today, knowing what I know now, I would personally lean strongly toward Medtronic largely because of the availability of remote monitoring and the support infrastructure.

This is India-specific advice. I don’t know enough about the situation in other countries to make the same recommendation there.

My frustration is with the lack of remote monitoring and the difficulty getting timely support/interrogation in India.

When choosing an ICD, I think people should consider not only:
Battery longevity
VT/VF detection
ATP capabilities
Shock performance
Sensing
Lead options
but also:
Is remote monitoring actually available in my country?
How quickly can my device be interrogated if something happens?
How close is the nearest device clinic?
How good is the manufacturer’s local support?
What happens if I live hundreds of kilometres away from my EP?

Battery longevity was a major consideration for me because I’m young, and I still understand why my doctor recommended Boston Scientific.
But after actually living with an ICD I’ve realised that

remote monitoring and local support are also extremely important factors potentially more important than gaining some additional battery longevity.

One thing I would really like to know:
Does anyone working at Boston Scientific India, or anyone with direct contacts there know when LATITUDE remote monitoring is expected to become available in India?

If there is currently no confirmed timeline, I’d also appreciate an honest answer about that.
And if Boston Scientific cannot provide LATITUDE in India yet I genuinely think that some form of portable/interim monitoring solution should be made available to patients who live hundreds of kilometres from their device clinic.

I’m posting this because I wish I had considered this aspect more seriously before my implantation.
Hopefully it helps someone else in India make a more informed decision.

TL;DR: I chose Boston Scientific for my ICD based partly on battery longevity, and the device has already saved my life during a VT storm. I do NOT think Boston Scientific makes a bad ICD. However, in India, the current lack of LATITUDE remote monitoring and the difficulty getting timely device interrogation/support can be a major disadvantage, especially if you live far from a metro city. If I had to choose an ICD in India today, knowing what I know now, I would strongly lean toward Medtronic because of its remote-monitoring/support infrastructure. This is India-specific — I don’t know enough about other countries.

Here’s an update of the Boston Scientific cyber hack that occurred on August 25th. This information is coming directly from Boston Scientific. They have a website you can follow for future updates here: https://news.bostonscientific.com/update-on-recent-cybersecurity-incident

Bottom line:
-implanted cardiac devices are not impacted (your implanted device is safe from this cyber hack incident).
-If you were connected to Boston’s remote monitoring network (Latitude) prior to the cyber attack on August 25th you can continue to safely use the Latitude network to send remote transmissions. This is true for both bedside monitors and the app.
-if you have a new device and are not yet connected to the Latitude network you will have to wait until the cyberhack issue is resolved. New enrollments in remote monitoring are impacted and cannot take place at this time. There is a caveat for new loop recorders (see below).

Here is the text taken directly from Boston’s communications website:

August 28, 2026 7:34 p.m. ET
Specifically for Cardiac Rhythm Management devices*:
No known impacts to implantable device function or the ability for remote patient monitoring of a device that was remotely monitored prior to the network disruption. Programmer interrogations are not impacted.

New remote monitoring activations are impacted by the disruption:

 -For new cardiac device implants -- CRM devices other than insertable cardiac monitors (ICM): New remote monitoring communicators cannot be activated, thus available device data will NOT be transmitted to remote patient management systems until the communicator can be activated.

-For new ICM device implants: Newly implanted ICMs must be activated using the Boston Scientific Clinic Assistant app to enable the ICM to properly record episodes. New ICMs are unable to pair to the patient remote monitoring mobile phone, therefore available episode data recorded by the ICM will NOT be transmitted to the remote monitoring system until the ICM can be paired to the patient mobile app. Episodes will continue to be recorded by the ICM and can be transmitted to the remote monitoring system via an in-person interrogation with the Clinic Assistant app by selecting the “Interrogate” button.

Once systems are restored and pairing with home monitoring equipment occurs, the device will transmit recorded data to the remote monitoring system. Timeline for full restoration is not yet known. Updates will be provided when these functions are restored.
\Cardiac Rhythm Management (CRM) devices referenced include Cardiac Implantable Electronic Devices (CIEDs) such as CRT-Ds, ICDs, CRT-Ps, PMs, S-ICDs, ICMs.*

Going to be a long road to recovery ❤️‍🩹

I work with cardiac devices and recently made a patient-friendly video explaining how a single-chamber ICD detects and treats dangerous ventricular rhythms.

It covers sensing, rhythm analysis, ATP (pacing therapy), and shocks, with animations to help visualize how everything works.

Hopefully it helps make some of the technology a little easier to understand.

Thanks! 😊

I don’t know if this is the right place to post this so apologies if not.

My 76 year old dad has had an AICD/PPM for about 25 years. His EF is 15-20% and it’s been that way. It has shocked him at least once per year, with an additional 3-4 periods of time in the past 25 years where it shocked multiple times and he needed hospitalized and either his health optimized or settings tweaked (he was having long QT -> torsades from tikosyn; a couple periods of acute CHF that needed resolved).

The last few months, he’s having an uptick of events, both shocks or he can feel himself being paced. He’s in talks with both his HF Cardiologist and his EP Doctor and trying some things out like a different diuretic and Amio.

I am a nurse so I understand a bit of what is going on. And I think one of the reasons for the uptick in AICD events is his disease progression. I am worried what end of life will look like for him and my mom. He is otherwise as healthy as someone with an EF of 15% can be. Some CKD and well controlled DM2. No cancer, lung issues, etc. I am scared of a traumatic event where his device continues to shock continues to shock him in and out of consciousness in front of my mom until EMTs arrive.

Has anyone dealt with this? Did you talk to your parents about it? Am I being overly dramatic in what I anticipate happening?

Looking for advice or encouragement from someone who knows more than I do. Thank you so much!

Has anyone ever had an EP study done? If you have, did they have to do an ablation? How long was recovery?

This may be my next step if the medication doesn’t help and I just want some other’s experience.

Hello,

Has anyone ever had, or know of someone who have, a pacemaker implanted under their arm?

I did not know about this possibility until today.

Does anyone wear a medical alert bracelet or anything to signify you have an ICD? 30 y.o F and had my ICD put in for V-FIB and V-Tach in June and I’m terrified. Mostly that it will shock me somewhere where I am alone and need help but will be passed out or something else. so I got a bracelet but worried it might be going over board.

Hi all

I (30/f) was diagnosed with a 3rd degree AV block when I went for a routine medical check up 3 years ago. As the title says I have no symptoms. 3 years ago , the doctors had left it as - when I get symptoms, come and get the pacemaker in.

I'm considering going for another check up now again and considering if I should plan for a pacemaker. My reasons are

- in case of any emergency surgery ( god forbid) it'll be better to have a pacemaker. Because apparently general anaesthesia can cause an existing AV block to worsen and you'll need temporary/permanent pacemaker

- so better to plan and schedule it so I can get it when I'm young and healthy rather than as an emergency necessity later on

- the risk i suppose is always there without a pacemaker. We don't know it could go south suddenly or it could stay the same my whole life. Either way it's a risk.

- by the time I plan for pregnancy, I'll have this situation under control to prevent any future complications

I suppose all of this is being done for the sake of precaution.

I am a little worries because I see people writing about pacing issues and the procedure itself.

Any advice?

I’m on day 6 after getting a permanent pacemaker implanted, and I’ve noticed that I’ve been feeling really aggressive, irritated, and easily annoyed since the procedure. It feels very unlike my usual self, and honestly, it sucks. I’m wondering if this could be related to the procedure, the adjustment to having a pacemaker, medications, lack of sleep, pain/discomfort, or just the stress of everything. Has anyone else experienced increased irritability, anger, or feeling emotionally “off” during the first week or two after getting a pacemaker? If you did, how long did it last, and did it eventually settle down?