Implanted Loop Recorder

[MoyB]

I was fitted with an ILR last year due to a request from my neurologist who was seeing me for unexplained falls backwards. Interestingly, I have now had no falls since March 2023.

However a few weeks ago, I was in bed and almost on the point of sleep when my heart went bananas! After about half a minute of extremely irregular beats, it seemed to stop for a few seconds and I could feel myself starting to lose consciousness. I managed to move a bit and the heart beat again and returned to a normal rhythm. I've had no problems since.

I half expected that this would be picked up by the bedside monitor and I might hear something from the Cardio department but have heard nothing at all.

I have been ok since, but the lack of heartbeat for several seconds and the feeling of fading away was scary and, although other issues have made me put it to the back of my mind, I'm curious to know if others have ever been contacted by Cardio following a similar event.

xx Moy

[BobD Volunteer]

You need to ring the department concerned with time and details and ask them direct. It sounds like a period of AF followed by a short pause as you went back to NSR which can casue this.

[MoyB in reply to BobD]

Thank you. I will see if I can get hold of someone - must admit, it's not easy at the moment. Answerphone messages don't get a response etc. I will try, though. xx Moy

[JaneFinn]

Hi Moy, that sounds scary (as do the falls) I bet you’re glad to have the ILR in. In my experience of an ILR (but mine was an older model, battery ran out in 2020) they told me to activate the trigger to record any symptoms I was aware of, but assured me that even if I didn’t, it would be recording and transmitting wirelessly to them overnight.

One time they contacted me to tell me about an event they’d picked up on, but another couple of times they missed it. Turns out it hadn’t transmitted to them. So my advice would definitely be to contact the department as BobD says, and tell them what you’ve told us. Whatever their procedures, you need to make sure they’ve logged this issue and notified your EP for his/her records and any action needed.

Good luck - I’d be interested to hear what they say? Jx

[MoyB in reply to JaneFinn]

Thank you. I have wondered if they are getting the info but in the absence of any contact from them I have just hoped all is well. xx Moy

[JaneFinn in reply to MoyB]

I’ve done the same, so I understand! Hoping no news is good news. (Let alone the added difficulty in recent years, when getting responses and action seems so much harder with all nhs services.) But I’m afraid this is one of those times when I’d have to make myself do it, rather than miss something significant. Hoping you get through and get reassuring news. Xx

[DawnTX]

I just had mine removed when they put in my pacemaker. No I never got a call. I didn’t have the unit like you did. Mine was wireless, and it was also monitored by a service.

I am Monitored 24 seven now By the clinic regarding my pacemaker, and I have an app, apparently no matter how good things are. There are still things that they cannot do.

I went for several weeks with what I considered a fib, not my flutter and supposedly my a fib is no longer in existence. I was very uncomfortable that I finally called one night to ask them to check it because I had not heard from them, but I know what I was feeling. It wasn’t heartburn. It wasn’t anything except as I said a fib it’s my body. I know what I’m feeling. Just like an EKG cannot pick up a fib unless you are having it happen during the EKG, the same can be true with monitors. There are just certain things they don’t pick up and I don’t understand why it kind of makes me angry.

I went through this a while ago I was laying down one night and it felt as though a horse kicked me right in the heart. It was sudden and hard and it happened twice again there was no record of anything. I will be seeing my EP next month and my cardiologist in a week or so, haven’t redone my appointment with him. I just canceled the other day. It’s the EP. I will ask the questions of. again, it’s my body. I know what I felt. I have a state of the art pacemaker. I have a tech assigned to me, and we have spoken with one of the engineers who can go into parts of my pacemaker that others cannot get into because of cyber security.yes I know what you’re talking about not hearing back especially with yours that definitely had to be frightening

when I just had my first annual, I was extremely surprised because my doctor even showed me the print out. They had just taken while I was there. It pulls all the data from the time I went online with my pacemaker. He was over the moon with it, he said doctors would beg to have reports like mine. it is not that I am not grateful but I still want to know why I feel what I feel and no one knows about it. I do know I will feel regular a fib and flutter, but to have it last a couple of weeks almost nonstop and a time is getting worse and the night that out of the blue, I felt hit so hard, you would think something would show

when I finally get an answer, I will make sure to share it with others. There may be a reasonable explanation just like when I found out the AV node does not stop the feeling it stops the damage. FYI I do want to tell people getting the pacemaker when I did has actually helped reverse my heart failure from the 40s now My ejection rate is in the 70s my EPtold me my heart would not have been able to take much more, which is why he scheduled me relatively quickly after the horrible failure of the cardioversion. I am so glad they always give me general anesthesia. Some things I just don’t want to know.

[MoyB in reply to DawnTX]

I suppose I thought the ILR would pick up everything, but then again, I don't understand how it's all monitored. I imagine that a computer algorithm will flag up anything out of the 'norm', but the definition of 'norm' may be very wide.

I haven't had any further problems to date and think I've left it a bit too late to flag up now as I don't have the date recorded of when I had my strange feeling. I will certainly record heart related events in future, though, and not just rely on technology.

I hope someone comes up with an answer to your 'horse kick'!

xx Moy

[DawnTX in reply to MoyB]

if you even have the month that you felt it, they can look up your record. Do you go in periodically and have them do a reading? I had a tech that would do that. They had a simple gadget they put around my neck somehow that read my implant and out would come what looked like a long supermarket receipt you should be able to roughly pinpoint just remember, though getting these feelings are not unusual. We are never gonna be free of them. Even though with the pacemaker, I still can get them and I do once in a while usually I have misbehaved . The thing that triggered my couple of weeks of feeling bad I can tell you everything I did wrong that day. Oh boy did I ever. Now I’m even questioning if I took my meds that morning because it was a crazy day. The weather just broke this past week after months of hundred degree plus weather not just feels like but actual 100+ and it was one of those days. My cousin and I were taking several cats to be spayed and neutered just getting them ready was a problem. After we dropped them off. we decided to go to lunch because we realized we had not eaten. The only smart thing we did was bring water with us. We went to my favorite TexMex place and I tried something new. That was incredible. I was so hungry. I cleaned my plate and I was so thirsty, I downed a glass of icy sangria and they are not cheap with it there. It was only the second time I have had alcohol since the pacemaker and prior to that I had not had any since my first a fib attack. I’m not that big drinker except for sangria lol

we had to stop at the store and I forgot that my cousin shops worse than we do. He gets lost in Walmart. Meanwhile, I was sitting in the hot car AC was running, but with those temperatures it doesn’t do much I wasn’t even smart enough to open the car door I think I was starting to lose it. By the time we got home, I could barely walk into the house. I went straight to my bedroom, sat on the bed and I don’t really remember much after that. My feet were still on the floor when I laid back. I woke up around 7 o’clock that night , four hours after we got home I got a drink of water and went back to sleep pretty much. I slept over 20 hours except for bathroom breaks. I could not stay awake that is when the AFib started. I am going to question about the fib because several times I’ve been told I no longer have it. I only have the flutter a typical the good thing with the pacemaker is regardless of what I was feeling it isn’t damaging, but when it doesn’t stop around the clock for a couple of weeks, it still feels lousy.

I don’t know how many people are actually told when they get a pacemaker that you are going to feel flutter, and afib but it’s a good thing for people to keep in mind because it scared the heck out of me until I knew it was normal. Yes, even my perfect EP forgot to tell me. I think in his head because my pacemaker is running the show, and there is no further damage being done, he wasn’t concerned and he was right, but knowledge is power and knowing it stopped me from being afraid.

A fib is so different for each, and every one of us, the odds of us having it in the same spot or the same triggers is not very likely. I think this might be why it’s so hard to cure. You have to have a common denominator to solving almost anything, even a crime. In my mind, this is probably why diseases that have been around for quite a while are so hard to stop.

at least we all have each other here to give you an idea and see if it fits anything going on with you but when it’s important, come to us first on here get on the phone with your doctor. The other thing that might be surprising to some people is the fact that just because you have a pacemaker does not mean you cannot have a heart attack because you can, they are not the same thing so don’t ignore if you think you could be having one better to be safe than sorry or dead

[MoyB in reply to DawnTX]

Wow! That was a day and a half you had!! It seems likely to me that you suffered proper, full on heat stroke and are lucky that you didn't have even bigger problems! Thank goodness you recovered.

The things you have written about pacemakers are interesting to me as my husband has one. Fortunately, he has a regular pacemaker check. However, despite having had a few concerns which the pacemaker technicians have flagged up to the cardiologist, he has heard nothing from the 'big man' and all the GP can do is a general check up. Frankly, we can do it at home as it's just blood pressure, temp, O2 and a chat. In my opinion, he could do with speaking to someone from the heart failure team again, but we can't get hold of them and GP thought my husband just needed to lose a bit of weight. That was a fair comment and my husband achieved a reasonable weight loss, but it feels a bit like being lost in the desert at times. I need to remember that we can phone a nurse at the BHF for advice. I'm sure they would be helpful, but I still think there's a serious lack of follow up post procedure.

I hope you go on ok now. I'll bear in mind what you said about getting the ILR readings checked and see if I can bring myself to go into battle to get it done. It does feel, at the moment, as though I'm fighting a one woman war over a couple of things - ongoing medication issue in particular - and I'm not sure if I have enough energy to take this on as well right now. However, if I have any further odd sensations, I WILL make contact with the hospital and try and get it checked right away.

I hope you keep well!

xx Moy