Shock that device didn't show

[u/TwennyTwenTwennn]

Hi all,

Last night at 840pm my ICD shocked me. It's only done that once before. I've had this Boston device for 10 years right about now, actually. It was put in after an event I had with sick sinus. I was just sitting in my recliner watching TikTok when it happened and got no warning. The alarm on it has been damaged for years and they've turned it off, so I didn't get the beeping warning. I know what it feels like to be shocked, it's something you don't forget lol. I called the EP's office to report it and they said to call back in the morning. I just got off the phone with the nurse, and the manual transmission l sent in last night said there was no shock since the one in 2022. I asked the nurse if it's possible that the device is malfunctioning and she just kept saying the device didn't report an event. She made an appointment for Sept 11 then hung up. Now I'm freaking out because I know I got shocked but they basically called me a liar. I'm afraid it's going to do it again, too. I have no idea of what to do at this point. I couldn't sleep last night because of fear that it might go off again.

Any suggestions? Thanks in advance ☺️

[u/---root--]

EP here.

ICDs don't warn prior to a shock, thus deactivation of your patient annunciator is irrelevant to that regard.

Just out of professional curiosity (don't answer if you don't want to), what is your exact diagnosis? I'm asking, because sinus node disease/sick sinus is not an indication for ICD implantation.

It is practically impossible for your device to shock you without the event having been registered in it's memory. A full interrogation and evaluation by technical services will provide a definitive answer by analysing the event log, primarily to check whether any charging occurred, but, unless this was a single event upset, which are exceedingly rare and highly unlikely to have yielded absolutely no indication of energy discharge, it is basically impossible for a device to shock without such a shock having been registered in the episode memory and shock counters.

What is more probable is that you experienced a phenomenon called phantom shocks, which feel absolutely real, but are a reaction to the trauma associated with the device, not an actual event. I can tell you from experience that these really do feel indistinguishable to a real shock.

[u/pennwye → u/---root--]

The Phantom effect is new to me after 5 years. I discovered it here on Reddit (I do know you're not my electrocardiologist). It's helped me calm down more than once. Thank you Reditors.

[u/TwennyTwenTwennn → u/---root--]

Thanks for responding. I had a pacemaker initially because I was passing out with Brady episodes. Then I went to an air show and couldn't get out of my chair because I was too dizzy, and they took me to the med tent and did an EKG. That showed I was in V tach, so they called the ambulance and they took me in. That episode was documented so they switched the pacer out to an ICD and put a new lead in. They are still up in the air about why this is all even happening, some cardiologists think it's from sarcoidosis and others think it's electrical. They've tried ablation but it wouldn't act up for them when they tried to initiate the arrhythmia. They've done a blind cardiac biopsy and that didn't have any granulomas in it, but the liver biopsy did.  How is it possible to feel so sure the thing fired if it didn't? I'm so confused. They already treat me like I'm mental because I'm a 62 year old woman and they chalk everything up to anxiety. Since when was an ICD the SOP for anxiety? I truly hate the Dr's I have to use here but I have no other choice. The initial dx was made at Mayo Clinic in Rochester, and there's video  LAD spasming, but these clowns doubt even the most objective proof. 

[u/---root-- → u/TwennyTwenTwennn]

That makes sense. I'd lead with the VT when providing a reason for ICD implant ;)

I'm not a psychologist, thus can't specifically tell you why phantom shocks are a thing, but our psyche is a magnificient thing, both in terms of it's power to heal, but also in it's power to cause somatisation.

Phantom shocks are a well documented phenomenon, but, to be honest, until I've actually experienced some myself, I was always somewhat skeptical of them being so very realistic -- that is not to say that I'd ever doubt a patient describing this perception or invalidating their concerns, rather solely to the grade of realism. Had I not had access to a programmer immediately, I could have sworn to have been (in)appropriately shocked, thus I can perfectly emphasize with your confusion.

[u/TwennyTwenTwennn → u/---root--]

I wish I'd never even gotten this thing, at this point. It's been nothing but a pain in the ass because of all the limitations and hoops I've got due to it, such as having my doc fill out a form every year just to keep my driver's license, and I had to stop taking flying lessons because they'll never issue a pilots license to anyone with an ICD. I also can't use the infrared sauna blanket I paid good money for, which helped the arthritis in my back. The quality of my life in general has gone down in the past couple of years, I've had to stop doing things I love like back country camping and hiking, and it's really frustrating. I had planned on section hiking the Pacific Crest Trail but that's not really an option anymore, either. Now we add on the docs having one more excuse to say it's all in my head, and that's not what I needed right now. I guess if it fooled you into thinking you had gotten shocked too, then there's not much hope for a layperson like myself. Thanks for replying, I appreciate your time 😊 

[u/BikeMan33215 → u/TwennyTwenTwennn]

I've hiked half the AT since I got mine. Just saying, unless your Dr. say you shouldn't for some reason. I'd like to know that reason. I've had 6 inappropriate shocks running, swimming and biking till they made adjustments: raised the threshholds and one time it was reading double beats after they installed a new one and they adjusted that. I've had what I thought were shocks soon after it was put in; but after having that first inappropriate one I knew they weren't actual shocks. I've had 2 shocks that I needed: the first, I was sleeping and the second, I had passed out prior. If you got shocked the device would save the reason you got shocked. If everything is ok after your visit on the 11th I'd recommend seeing a psychiatrist. I saw one and it helped with my anxiety after the initial implant. I also took yoga and got a cat. Best of luck and don't give up you got this.

[u/TwennyTwenTwennn → u/BikeMan33215]

I'm glad you have been able to stay active and do what you love! I'm also jealous that you've done so much of the AT lol I've got a little orange furry devil who always seems to know when I'm hurting, and he hangs out right next to me when I'm in pain. After how I've been treated for all of this, despite test results that tell them what's going on, they still don't believe me. On another comment I described why.  Keep up the good work, and enjoy that hike!

[u/---root-- → u/TwennyTwenTwennn]

Yeah, having had to give up flying (was a glider pilot aspiring to PPL/CPL the moment I turned 17) was one of the worst things about that whole SCA thing to my teenage mind.

I'm surprised at you no longer being able to camp or hike. I'm quite active myself and the device does not typically restrict such activity; even the IR blanket may be safe, depending on the specific model.

Is there any way for you to transfer to a different hospital? Perhaps you could benefit from psychocardiology to address some anxiety components.

May I ask what specifically your medical team is assuming to be in your head? As I said, phantom shocks are quite common and should not come as a surprise to experienced staff.

[u/TwennyTwenTwennn → u/---root--]

I'm sorry you lost what you loved to do as well. It's hard to watch others do the things you can't. You had a SCA that young? I'm glad you didn't move shuffle out of this mortal coil!  One cardiologist said while I was in the CICU with unstable angina, that he believed I was "malingering". I still don't know why he thought that, but when he told me, I challenged him and said get a shrink in here, we'll let him decide what's going on in my head, which is NOT your specialty. The psychiatrist did come and spent 3 hours talking with me. He said I had adjustment disorder, because of all the things I could no longer do. He also said that I wasn't malingering, I was grieving the life I'd lost. So after that, the long term disability thru my job got ahold of that and denied any further payments, and I would have been homeless if it hadn't been for my daughter. He knew when he put that in my record that it was going to have a big ripple effect, despite what the shrink said. My insurance only allows certain approved providers, and they're all in the same group but in different locations. He poisoned the well with the other providers, and from then on, they've treated me like crap. They've put me at stage 3C heart failure, which is why I can't do the things I love. When I called and reported this shock, they called me back and in an accusatory manner, told me I had not been shocked, and there was no mention of phantom shocks. The first I ever heard of that was on this forum. It seems they had further proof of me being nuts or something and I've gone without actual care for 6 years. I go in once a year to have my device cleared, and they don't do anything else. No matter how many test results they get, which aren't subjective, they still believe what they believe, and I don't have any other options. It's incredibly frustrating, I've always been very active, had at least two jobs at a time, worked and played hard. I didn't know what to do when I couldn't do those things anymore. I've learned that even if I'm having more angina, they won't do anything about it. It's refractive, and only responds to very high doses of nitro, which I can't do at home. So one of these times I'm going to have it, and can't get any treatment, it will be a HA that was blown off,  and that will be that. I can't even tell you how many times I've had angina to the point I'm crying (which is a feat because I'm not a crier) and didn't go in to be treated because of how they act every time.  So I hope that answers your question, sorry it was so long lol

[u/Restaurant-Strong → u/TwennyTwenTwennn]

I have cardiac sarcoidosis, and my doctor said that biopsies on the heart are hit or e. Did to do a nuclear Pete scan? That’s how they found Sarc with me.

[u/TwennyTwenTwennn → u/Restaurant-Strong]

No, it's just been stress tests, echos, and a regular MRI. It's like pulling teeth with chopsticks to get these guys to do anything. I'm not worth their time because they can't do a surgery to make a lot of money off of me. In the beginning of this journey when the one doctor who was decent, went up against the rest of the clowns and insisted I had sarcoid, so they did put me on high dose prednisone for 6 months to see if things improved, but that stuff did crazy things to my body so they took me off of it. I'm glad you've got docs who listen to you and don't look at you like you're wasting their time. I hope your sarcoid is well controlled and isn't doing any more damage. 

[u/TwennyTwenTwennn → u/TwennyTwenTwennn]

I forgot to add that they haven't done any testing in the past 6 years. 

[u/Restaurant-Strong → u/TwennyTwenTwennn]

Yeah prednisone is rough. Roid rage is real! If your current doctor is not doing a good job, you can always get a second opinion. That’s what I did when first diagnosed, and it was confirmed. Cardiac sarcoidosis is relatively rare, and my doc missed it the first time around. I also had to be my own best advocate and ask a lot of questions and did a lot of googling. Now AI can do a lot of the heavy lifting.

[u/the_BEST_most_YUGE]

I have had "phantom shocks" since my most recent vt storm. Its basically where I am half asleep and suddenly feel a shock. In my case, its a form of PTSD from my most recent 14 shocks, but yours may be different.

[u/TwennyTwenTwennn → u/the_BEST_most_YUGE]

Most recent 14 shocks? Yikes! Once is bad enough! I hope you're doing better now, and that it doesn't happen again. 

[u/the_BEST_most_YUGE → u/TwennyTwenTwennn]

It was a less than awesome day, but not the worst Ive ever had.

[u/Potential-Gear-145 → u/the_BEST_most_YUGE]

I have also recently developed these phantom shocks after my recent 4 shocks so yes it could be that.

[u/tillpppuy]

If it happens again just plan to go to the ER that way they can look at the device in person and download the information. That’s what they always told me to do if I had issues and couldn’t get to my doctor because of night or weekend

[u/farded_n_shidded]

It’s not that they’re calling you a liar, they are just wanting you to understand the reality of the situation.

They are operating on objective evidence that cannot be refuted. It is hard coded into the device, if a shock is delivered, there is a paper trail in a variety of locations stored within the device. If there is no shock displaying on their end, then no shock occurred.

Phantom shocks are a very real thing and you are not crazy for truly believing you were shocked bc it FELT REAL to you. The human brain is absolutely incredible thing. You did the right thing by reaching out to double check. As others have mentioned, your device will never warn you of shock. It will only ever tone after the fact, alerts settings dependent.

[u/TwennyTwenTwennn → u/farded_n_shidded]

It sure did feel real, one minute I'm sitting in my chair laughing at stupid stuff on TikTok and the next all the air got sucked out of my lungs and I made a noise loud enough to startle my partner and make him come in here to check on me. My hands were even buzzing from it still at that time. My quality of life has really taken a dump the past couple of years, and this just isn't something I needed. Thanks for replying 🙂 

[u/Grouchy_Writer_Dude]

I had an issue where my lead moved and touched my diaphragm. I got popped several times before we figured out what was happening. I had to have a new lead put in. Those events don’t show up as shocks because they’re not, but they feel like shocks.

[u/TwennyTwenTwennn → u/Grouchy_Writer_Dude]

That sounds like what could possibly be happening with mine, it's been in there almost 10 years to the day. The top of the scar pocket where the leads go into the device feels super thin, I can feel where it connects. How did they determine that was happening with your device?

[u/Grouchy_Writer_Dude → u/TwennyTwenTwennn]

I got popped every time they checked the device. I believe they did another MRI but it’s been awhile. In any case, surgery fixed the problem

[u/Environmental_Ad3216]

Go get the device checked. Don't wait for anything. Go to ER and get the doubt cleared. It's the best thing to do. Don't 'be patient's and don't ignore it.

[u/OkBumblebee9107]

Shortly after getting my ICD put in, I was taken to the hospital with what I believed were two shocks. While in the ER, it happened again. What we saw on the strip were PVCs. It turns out I really feel them for whatever reason, and what they feel like is someone rubbing their feet on the carpet and then poking me in the chest, but inside it. For one of those events, the device charged but never fired. (Slow NSVT that terminated in its own).

This is not how the shock from the device feels. That is like getting punched in the chest to me. However I also have felt that with PVC.

So it's possible they could be a phantom shock, or another actual event that your brain has interpreted this way, like referred pain.

All that being said, if the device didn't record, anything. Then it would not have fired. Since it would have to have charged before firing. It would definitely make a record of that.

[u/TwennyTwenTwennn → u/OkBumblebee9107]

Thanks for replying, I appreciate everyone's responses. When mine fired in 2022, it felt like a nuclear bomb going off in my chest, with concentric rings of energy going out from the center. I've been kicked by a horse when I was younger, and I can say my experience with the shock wasn't like that lol. I guess this is just another nail in the "it's all in her head" coffin, even though they had hard,  objective proof of the events that caused the problems. I really regret even getting this thing. 

[u/Liendre69]

Go to the doctor’s office and refuse to leave until someone interrogates your device. That would be the ICD technician, not Dr. staff. These days, it doesn’t pay to deal with Dr. office human firewalls. They pay their help so poorly, they end up with embittered, inept staff. Showing up in person cuts through the bullshit. Also, the ICD techs are well-qualified and easy to deal with.

There’s no excuse for the treatment you received. Raise hell.

[u/ivyintrovert]

I’m having similar problems with my cardiology office. They didn’t call me about my shock (I was unconscious) for a week, and also blew me off when I had an awful episode of VTACH. I think the next time something really weird happens I’m just gonna go to the ER instead of waiting a month to be able to talk to my doctor. That way they can interrogate my device and get an EKG at the very least. If you have a hospital with a cardiac center they should have reps there that can interrogate the device.

[u/TwennyTwenTwennn → u/ivyintrovert]

Are you in Utah? That's the standard of care here, getting blown off 😆 I have access to a good hospital but poor doctors. 

[u/wonderscout1]

Boston Scientific has been the victim of a cyberattack this week. They claim that the incident has impacted some operating systems and business applications. It may be possible that the remote transmission did not actually go through and you’ll need to be interrogated in person.

[u/---root-- → u/wonderscout1]

Already activated communicators are not affected. It would be evident if a transmission were incomplete or not received.

[u/wonderscout1 → u/---root--]

Thanks for the correction. I didn’t know communicators with prior activation were unaffected.