r/PacemakerICD

12 years ago I experienced an SCA event likely brought on by too much partying the night before. The stewardess in an airport terminal used CPR and an AED to keep me on Earth. Hospital Docs ran stress test one stress test teo, radiation mapping of the heart, genetic testing for brugada and more; nothing was discovered. I decided to get the ICD as a precaution. After 12 years of good data, exceptional fitness / personal habits it was time to make a decision. The ICD leads became compromised and plan was the extract leads / device then replaced with new model on side of torso but I got several opinions and got it EXPLANTED with mo replacement. Your heart beams a magnetic field. Mine is once again uninterrupted. I am free

Age:76
Med hx: HCL (Crestor)

4 weeks ago went to the dr feeling fatigued, SOBOE and dizzy. Symptoms had been going on for \~ a month and worsening. At drs visit was found to have a pulse rate of 37 with HTN (170/89). His dr was concerned about his HTN and prescribed him medication for the blood pressure and referred him to a cardiologist.

Im getting the info second hand as this is my father in law. I work as a medic and I’m just trying to wrap my head around this. From my perspective (without getting to see his ECG or lead 2) that’s indicative of a third degree heart block, the AV node is ineffective and we’re running at an intrinsic ventricular rate. His BP was compensatory and putting him on HTN meds prior to hospital for ECG and bloodwork was irresponsible?

After his cardiologist appt he was immediately referred to get a pacemaker and it’s since been implanted \~1.5 weeks ago. With the pacemaker his heart rate has been 90-110 and his blood pressure has significantly reduced to normal limits. Why would a pacemaker keep his rate steadily that high? Should it not be keeping it nice and average aside from exercise or exertion? Is it normal for him to sleep 18 hours a day post surgery? Should he get a new family dr for incompetence?

Thanks so much!

I have a Polar H10 and both a Pixel and an iPhone. Looking for a reliable app to record my RR when sleeping at night.

Right now I am using my Pixel with the Polar Sensor Logger and it is just not reliable. It rarely records the entire night for some reason.

I often times only get an hour or two of data.

I would like to find something reliable that records RR every second that I can then use Gemini or load in Google Sheets to find the largest RR value.

I prefer a free app but would be willing to pay.

Any help appreciated!

Hi. I recently had an Abbot Assurity MRI pacemaker (model PM2272) implanted for bradycardia with syncope and sick sinus syndrome. Does anyone know if it alerts with an audible tone or vibration? Im seeing conflicting info online. Also, I understand that it’s magnetically shielded, but should I still be cautious about magnets like MagSafe iPhone accessories near the implantation site? Thanks!

Hi everyone,

I'm 31 and was diagnosed with congenital third-degree (complete) heart block. After extensive testing (normal cardiac MRI, normal blood work, etc.), my cardiologists believe it's congenital, and I'm scheduled to receive a pacemaker—I'm currently just waiting for my insurance to approve the procedure.

My concern is that my resting heart rate isn't extremely low. It's usually around 47–50 bpm. Most of the stories I've read are from people whose heart rates were in the 30s or who had dizziness or fainting, and they experienced dramatic improvements after getting a pacemaker.

I don't have dizziness or syncope. My main symptoms are lifelong fatigue, brain fog, poor concentration, low motivation, and very poor exercise tolerance. As long as I can remember—even as a child—I would get exhausted very quickly with exercise, hit a wall almost immediately, and have to stop to catch my breath. My stress test also showed my heart rate only increased to about 80 bpm.

I'm trying to keep realistic expectations because I'm worried my symptoms may not improve as much as I hope. Has anyone here with congenital complete heart block and a resting heart rate in the high 40s had similar symptoms and noticed a meaningful improvement after getting a pacemaker? I'd really appreciate hearing your experience.

Alô rapaziada meu nome é João sou do Recife eu treino no CT BRAGA eu uso CD desde 2014 tenho 34 anos treino de jiu-jitsu todo dia durante uma hora e meia faço musculação todos os dias durante uma hora e às vezes eu troco a musculação por corridas leves até 8 km de oito a 10 km medicado sinto o meu eu tenho cardiopatia arritmigenica do ventrículo direito. O meu remédio é clorato de Salo de 160 mg duas vezes ao dia eu faço tudo nos treinos eu só não sou competidor meu Instagram eu vou deixar aqui @nakinhamotomeionakameiomoto.
Se vocês forem viver com medo do choque vocês vão viver mal o choque é pra salvar se ele vier quer dizer que a tua doença ia te matar ele acabou de te salvar eu já me acostumei com choque quando ele vem eu não sei explicar eu não sei prever eu simplesmente recebo a terapia se for mais de uma eu me sinto no local tranquilo e espero acabar não é ano passado eu levei 10 e nenhum deles foi treinando nada simplesmente estava com a medicação atrasada. Da última vez eu levei cinco de uma vez só com o intervalo de 15 segundos nem ao médico eu precisei ir não vamos nizar uma coisa que é pra te salvar é um susto que te salva e é isso tem que aprender a viver com ele eu fiz a troca do aparelho tem um ano e meio troquei a bateria voltei a treinar com 3 meses

Hello im new to this community

23 Yo male

Structurally normal heart acording to Mri and echo cardiogram

I ve been dealing with pvcs/pacs and mobitz type 1 for over a year now

I would like to know if anyone has healed from type 1

I would also like to know if most people who have mobitz also deal with pvcs and pacs

Has anyone ever healed there mobitz?

As for the misdiagnosis in the hospital the other day the way the drop beats were coming were so frequent and random they more align with mobitz type 2

I may have been mis diagnosed

Hi everyone,

I'm 31 years old and have been diagnosed with third-degree (complete) heart block, which two cardiologists believe is most likely congenital.

I've had a thorough workup:

• Comprehensive blood work (normal)
• Thyroid tests (normal)
• Cardiac MRI (normal, no structural heart disease)
• Stress test, where my heart rate only reached about 80 bpm during exertion
• Resting heart rate is usually around 47–50 bpm

I'm currently waiting for insurance approval for a pacemaker.

The reason I'm posting is that I've only recently started connecting my diagnosis to how I've actually felt my whole life.

Looking back, I've always tired out before everyone else. During soccer or any physical activity, I'd hit a wall very quickly and need to stop to catch my breath. Over the years, I unconsciously adapted by avoiding stairs, walking less, and generally avoiding exertion without really realizing it. I always assumed I was just out of shape or had low stamina.

I've also struggled with chronic fatigue, brain fog, and generally low energy for as long as I can remember. The strange part is that I never thought of these as symptoms because they've always been my normal. When I was first diagnosed in 2021, I honestly thought, "My heart is beating, so I guess I'm okay." It never occurred to me that the heart block might explain how I'd been feeling.

Now I'm hopeful that the pacemaker might make a real difference, but I'm also nervous about getting my hopes up too much. I've spent years trying to fix my fatigue with better sleep, exercise, diet, vitamins, stress reduction, and nothing ever really changed. Part of me worries this will just be another thing that doesn't help.

One thing I've also been wondering about: when I read stories from people who felt dramatically better after a pacemaker, many seem to describe dizziness, fainting, or extremely low heart rates. I don't have dizziness and I've never fainted. My main issues are fatigue, brain fog, and exercise intolerance. I'm wondering if anyone with a similar symptom pattern noticed significant improvement after getting paced.

If your situation was similar to mine, I'd love to hear:

• Did you have fatigue and brain fog before your pacemaker?
• Did you feel like you'd been living with it for so long that you didn't realize it wasn't normal?
• How much did your energy and exercise tolerance improve?
• Was the improvement immediate, or did it take weeks or months?
• Did the pacemaker change your day-to-day life more than you expected, or less?

I know everyone's experience is different, and I'm not looking for guarantees. I think I'm just trying to understand what life might be like if my heart is finally able to respond normally.

Thanks to anyone willing to share their experience.

I experienced sudden cardiac arrest as a 13 year old, still in 7th grade. I spent a week in the hospital and left with a pacemaker, then I came back 2/3 months later, getting diagnosed with CPVT (Catecholaminergic Polymorphic Ventricular Tachycardia). I already felt so out of place amongst my peers because of everything I had going on, but then I had to add a heart condition and a pacemaker on top of that. Even when I managed to find other teenagers with pacemakers online, I still have a rare condition that no one relates to. I grew up feeling out of place because of a chronic illness (asthma), but now it’s so much worse knowing I can’t even relate to people within these communities. It’s so exhausting trying to talk about my disability because it’s just a reminder of how I’ll never get to be a normal teenager. I’m so sick of hearing “My grandparent has a pacemaker”, “Wow, you’re really young”, “How did it feel being dead?”, “I bet the pacemaker feels really weird”, “So you can’t do ___ ?”, “You’re so lucky that you get to have your phone in school”, and so much more. I just want to talk about CPVT without needing to give an entire prologue. I want to know another teenager with CPVT so we can rant about it in the same way we rant about common experiences.

If you have CPVT please don’t hesitate to reach out, and if you know how to find other people with CPVT, please share.

My whole life my resting pulse has been in the 40s and 50s with no issues. Since implantation nearly 2 months ago, my lowest setting is now 60bpm. I don't understand why it would need to be so high when the 40s and 50s were sufficient for the first 40 years. I am pacing 98% of the time now, but feel no difference compared to before implantation. The only thing that has improved is that I've stopped waking up to pee during the night. Any insights?

Hey Reddit People,

I’m looking for some advice, perspective, or honestly, just a bit of a vent.

I’m 30 years old, and I’ve had a pacemaker for the last 3 years. Aside from the implant, I live a completely normal, healthy life. It doesn't limit me daily, and it’s there to keep me safe and healthy.

Lately, I’ve been actively looking to get married, but I keep running into the same heartbreaking wall. Whenever I disclose to a potential partner (or their family) that I have a pacemaker, the response is almost always an immediate "no."

I try to explain to them that having a pacemaker is completely manageable, that it doesn't stop me from living a long, fulfilling life, and that it's essentially just a tiny helper keeping my heart in perfect rhythm. But people seem to hear the word "heart condition" and instantly panic, assuming the worst or thinking I’m frail.

It’s incredibly frustrating because I am completely honest about it upfront—I don't want to hide who I am—but the constant rejection for something I can't control is starting to take a toll on my confidence.

Has anyone else with a pacemaker or a chronic (but manageable) condition dealt with this while dating or looking for marriage?

When is the best time to bring it up?

How do you handle the stigma and find people who are mature enough to understand it?

Would love to hear any advice or stories from people who have been through something similar. Thanks.

Hello! Let me start by saying I’m sorry for the long post but I believe all the historical background is required.

Recently, in May I was admitted to the hospital for a high heart rate at 178 and felt like trash. Once admitted my heart rate was all over the place one minute I would be low then out of no where I’d experience a flushing sensation and my heart rate would shoot up to 150s-170s then back down to 50s. After these episodes my rate would be irregular, cardio said it was sinus arrhythmia. Also, while sleeping multiple times during the night nurses would wake me to ensure I was okay because my heart rate would dip as low as in the 20s and 30s. I had an echocardiogram and nuclear stress test, both being normal with an EF of 76%.

At discharge I was instructed by Cardio to immediately go to their office to have a 14 day monitor placed. During the hospitalization and a few weeks after discharge I had severe fatigue, weakness, and dizziness. Some days the fatigue was so severe I felt like I couldn’t take one more step or I would collapse, and I had severe brain fog. Also a very weird sensation that my heart was just going to stop beating. Now fast forward to current week, Tuesday, the day of my follow up with EP. On my 14 day monitor only 1% of the time was I tachycardia, but I had multiple events daily where my heart rate would drop in the 30s and 40s while awake and 20s to 30s while sleeping. EP gave me a diagnosis of sick sinus syndrome with tachy-brady events. He did not mention any pauses or abnormal beats. Honestly I was too shocked to ask because he recommended a dual chamber pacemaker. My shock is multifaceted, 1 I’m only in my mid 40s, and 2 this isn’t the first time a pacemaker has been recommended.

The 1st time a pacemaker was recommended was about 12 years ago with very similar events. I was admitted to the hospital with the same issues, heart rate all over the place, discharged with a 14 day monitor. This time the cardiologist called me and told me to go to the nearest ER for transfer to another hospital with an EP that I needed a pacemaker due to multiple episodes of going into a Junctional rhythm with severe bradycardia. I was transferred from my local ER to a large university hospital with an EP. The EP did an EP study and a tilt table test to determine I did not need a pacemaker and diagnosed me with POTS.

I have battled these “episodes” for YEARS and chalked it up to a POTS flare up. However, my current EP believes I NEVER HAD POTS. It was sick sinus syndrome all this time, and a pacemaker will dramatically improve my quality of life. I’m just really anxious but hopeful at the same time. While I wait for my appointment for my pacemaker placement all these questions are tumbling around in my head:

1. What if I get a pacemaker at such a young age and don’t really need it?
2. Why did one EP say I didn’t need a pacemaker but now another says I do?
3. Will the pacemaker really make me feel better and myself again? At this point I’ve dealt with feeling like this for so long do I even know what normal feels like?
4. Was a pacemaker the answer for all my symptoms I’ve been struggling with for so long?

If you’ve made it this far thank you for taking the time to read this. Any comments, suggestions, and/or encouragement is welcomed I’m really having a time with it right now.

I've had my Medtronic ICD since June of 2023. They always told me to keep my phone 6" from my device.

I upgraded to a new iPhone today and it seems like all the cases for these new models have these Magsafe magnets in them. Is that 6" distance from my device still sufficient with those?

I've recently had my pacemaker replaced and the surgeon took the old out of the original pocket and made a new pocket. Problem is, it is 3-4 inches higher than the previous. My seatbelt is directly over it, which hurts while healing and will be an issue on my commute to work. What have you found to stay belted, but untouched?

My pm activity readings are much lower than my actual activity readings. For example it says I had 30 mins of activity yesterday when I know I’ve had at least an hour and a half. My rate response settings were adjusted a couple months ago and I noticed it then. I was told not to worry about it. Thoughts? I’ve been really tired with headaches and when I sent the office a transmission they said everything was fine.

ADD: I make a point to walk daily at lunch 20 mins and after work 30 mins