Leadless pacemaker

Welcome to our world

by Gemita - 2023-02-04 07:52:49

James, welcome.  If you do a search (top right under "Q" by typing in leadless) you should bring up several posts of members here with a leadless pacemaker.  The majority of us in the Pacemaker Club have conventional pacemakers with leads, but I am always interested to learn more about a leadless pacemaker from new members like yourself.

I hope your vasovagal symptoms are helped with your new pacemaker.  I also suffer from vasovagal syncope (swallow syncope) and although I still sometimes get pre-syncope symptoms, I very rarely actually faint now with a pacemaker keeping my heart rate steady and higher and I hope it will be the same for you too.

Thanks

by JM2023 - 2023-02-04 08:03:29

Thank you.  Am hoping it will stop my fainting, but interesting to know you still get the pre syncope symptoms, I was warned by the doctor that may still happen so am prepared 

Fainting.

by Penguin - 2023-02-04 17:10:24

Hi James, 

Another UK member here! Welcome! 

Sorry to say that I can't help you with the leadless device, but know a little about VV syncope. Did they say what's causing it - do you have specific triggers?  My pacemaker removed any vv symptoms that I had, but my situation was a bit unusual ! Often pacemakers are only part of the solution for syncope disorders. Did they prescribe anything to support pacing and increase BP for you?  

It's a bit poor sending you away without any information about this new leadless device.  Are you worried about it being new technology or do you have other concerns?  No need to reply unless you're comfortable discussing any or some of this online. 

Happy to listen if you're feeling a bit low about it all and need to post. 

 Did your doctor say why the device was suitable for your condition? I have little to no knowledge re: leadless devices so it's not a loaded Q. I'm just interested in the criteria for implanting them and the conditions they're used for. 

Hi

by JM2023 - 2023-02-04 17:27:42

Hi and thanks for replying.

I have only suffered from it twice, 3 years apart. No triggers and unknown really why it happened - although I haven't asked the doctor yet although that is one of my questions to ask 

After the first faint, I had a loop recorder fitted as they didn't know why I fainted and obviously wanted to monitor my heart etc. This second time, I did a download from the loop recorder and within a few hours of the download the Dr called me (was at a&e so didn't actually speak to them at that point) but when I did speak to him later that day, he told me that a pacemaker would help. I saw him the following week and he again said with my symptoms this new leadless pacemaker is ideal for me and 2 weeks later it was fitted. I was in the hospital for most of the day, and then about 2/3 hours after it was fitted I was told I could go. I do have a follow up appointment in March. I have been told not to drive for 4 weeks, take it easy etc, but that's about it really.  

It might be because it's new to me, but I just thought there might be a bit more immediate support, sort of talk me through what will happen in the first few weeks, things I may feel, how my body might react (I know everyone will text differently) but was basically just left to it. So everytime I feel something, I wonder if it's 'normal' or not.

I don't really know much about the leadless pacemakers other than they are a trial still which the doctor did tell me and what I've read online about it

Coming home with more questions than answers following implant procedure

by Gemita - 2023-02-05 05:46:49

James, yes I know how you feel.  I think it is much the same for all of us at first.  We are sent home with precious little information about what will happen next, other than any wound care instructions, restrictions and a follow up appointment at say six weeks to look at how the settings are working for us.   As you only had syncope I think as an indication for your pacemaker and your syncope episodes are infrequent, you shouldn’t feel a great deal differently on a day to day basis once you are healed.  The pacemaker will only respond when it is required to pace.

Of course immediately after any implant, our hearts may respond to the implant by throwing out some unwelcome rhythm disturbances until our hearts settle from the procedure.  

Your pacemaker will have been fed into the right ventricle using a catheter and placed into your heart wall and secured with flexible tines.   The implant may have caused trauma to your heart and this will take time to settle so you might expect some heart rhythm disturbances initially for example.

I also had a Reveal Linq loop recorder implant for 3+ years prior to my dual lead pacemaker and the Reveal Linq implant effectively picked up my arrhythmias, syncope, long pauses and bradycardia all indications for my pacemaker.  I attach The British Journal of Cardiology link on leadless pacing in case it is of interest.

https://bjcardio.co.uk/2018/10/leadless-pacing/

Thanks

by JM2023 - 2023-02-05 05:56:38

Thank you for the reassurance. I think that's what I was looking for more than anything, that I'm not alone (I know I'm not and am glad I've now found this group), but yea, its the feeling of 'off you go then' and sort of left to it.

I have had some rythum disturbances and did put it down to my body adjusting, but at the back of my mind I was like 'what if it isn't that...' also sort of felt I wasaybe making things up in my head as didn't know what to expect. Am sure it will all settle down over time and thank you for the article, I will have a read of it.

Im certainly feeling better now having been able to air my feelings here and getting back the answers I was probably hoping for and expecting, so thank you 

Not Surprised ....

by Penguin - 2023-02-05 06:25:52

I'm not surprised you're reeling James. That's quite a run of events - frightening syncope, A&E, a sudden decision to implant a device - a new model at that, and then nothing!  I'd be looking for reassurance and support too in your shoes. 

Did you get a diagnosis and indication for pacing? It's usually in your discharge papers and will appear in any pacemaker downloads once you start your clinic visits.  Symptom will be listed as syncope probably, but the indication for pacing is the reason / diagnosis which merits pacing. 

I agree with Gemita about the implantation process. I had some ANS disturbances when my first device was put in and I remember that the implant made them worse. It took a while to settle. That's why I'm wondering about your diagnosis?  Two faints isn't a lot to work on and seems on the light side as an indication for pacing to me - but there's probably more to it and you don't have to share that with me. 

Although most of us won't have direct experience with your type of device, it sounds to me as if you need some support right now.  There are some pretty knowledgeable people on this site and I'd like to think that the type of support you need can be found here. Don't be put off by the shortage of people with leadless devices. Those numbers will inevitably swell if we have members like you on here too. Please stick around and ask all the questions you need answered.  

Take care 

Feeling welcome

by JM2023 - 2023-02-05 07:52:56

The first faint in December 2019 I was driving and felt unwell but couldn't find anywhere to stop, passed out as I was trying to turn off the road and ended up crashed in to a traffic light crossing, wrote my car off (well wasn't mine a lease one ) but luckily no one else was injured. Had lots of tests, all came back clear and had the ILR implanted about a month later. All the recordings over the last 3 years from the ILR showed nothing of note until December 2022 when it happened again, as soon as I came round I did a download from the ILR and this showed that my heart stopped for 16 seconds - I assume this is the reason for the pacemaker, all I was told was that i was a good candidate for a leadless pacemaker, I'm wasn't going to argue with the doctor and if it helps to stop it in the future then I'm not going to say no - although probably should have asked more questions at this time but it was all happening so quickly (although I was definitely ok with the decision to have a PM) 

In terms of indication for pacing, being honest, I have no idea what that means. All I got from the hospital was my discharge certificate, nothing has been said to me about pacing etc, and there is nothing on the discharge certificate about it. I have an app which I use to send info from the PM to the hospital but that's all it does, it doesn't give me any info so I have no idea what my PM does and when it does it (other than the obvious), this is another reason why I feel in the dark as people have mentioned pacing etc but it means nothing to me and makes me feel like maybe I haven't been told everything or am missing out for want of a better phrase (not knocking the NHS/hospital in any way). I assume I'll find out more when I have my follow up next month, but it certainly gives me ideas of questions to ask, which I am really grateful for 

Am definitely going to stay in this group, as I feel much happier and more relaxed with things since I've been here.

Having someone with a leadless PM would be an advantage for me, but that's also irrelevant to an extent as I am finding out that what I am feeling is 'normal' and I am getting support from you guys which means a lot, so thank you 

Your indication for pacing

by Gemita - 2023-02-05 09:58:15

James you have given us all what we need to know “your heart stopped for 16 seconds” so that was a substantial pause and indication for a pacemaker and the cause for your syncope.  We often say here that even if you only need 1% pacing, that 1% is still essential to keep you safe.  Without a pacemaker you might not survive another long pause like that in the future.

Pacing percentages differ from member to member depending on their heart condition, but what is important is that we feel well with the pacing we receive.  Some of us are 100% paced in either our right atrium or right ventricle or indeed 100% paced in both right atrium and right ventricle in some instances.  I am paced 100% in my right atrium for Sick Sinus Syndrome, with less than 7% pacing in the right ventricle.  I have dual chamber pacing.

Your own natural heart may be doing all the work 99% of the time without needing right ventricle pacing support unless you experience another long pause, when the pacemaker will then pace you.  But that is still an indication for pacing.  Your need for pacing might change in the future since once electrical disturbances start, they may progress, so it is good that you have a pacemaker to keep you safe.  So to conclude, your pacemaker will just sit there waiting and watching and will only intervene (pace) when you need help.

When you go back a good way of finding out how much pacing you are receiving is to ask the % time you are being paced in the right ventricle (or wherever you are paced) and what your lower rate limit (LRL) is?  For example, they usually set the LRL at around 60 bpm (the factory setting) although mine is set at 70 bpm because I prefer a higher rate. 

Did you look under "Q" by typing in leadless to find the names of other Pacemaker Club members with leadless devices?  You could always send these members a private message to enquire how they are doing.  I am sure they would be happy to share their leadless device experience with you.  

Pacing

by JM2023 - 2023-02-05 10:20:16

Thank you for explaining pacing to me and what it is etc. I am definitely going to ask when I am back at the hospital in March 

Indication for Pacing

by Penguin - 2023-02-05 15:12:06

Don't worry about an 'indication for pacing' - I was really asking about a diagnosis, but thought if you had any paperwork from the device that particular heading might guide you to provide the diagnosis. Ignore me - I confused you unnecessarily. I am sorry. 

Yes, a 16 second pause is certainly indication enough for pacing.  Thank you for sharing what has happened to you. No wonder you feel the need for a bit of support.  

I had a 10 second pause prior to pacing and that was a shock to me. I've not had any pauses of that length with a pacemaker in place as it jumps in if my pulse gets lower than 60 bpm.  Your pacing will achieve that too. 

When you go in for your post implant check in March you could ask for the telephone number of the pacing clinic and a contact there. Most of us have this and can telephone if we have a symptom that causes concern or we need help / advice.  I appreciate that the NHS are incredibly busy right now but you should be able to phone in.   

The arrhythmia alliance also have support groups in some areas of the country if you need some face to face support. https://heartrhythmalliance.org/aa/uk/patients/support-groups

There is also a help line if you need to speak to someone without posting on a forum.

I hope this helps a bit. 

Thanks

by JM2023 - 2023-02-05 16:30:05

Thank you for the information, I am going to have a look now.

And don't worry about confusing me, it doesn't take much at the moment 😂

6 seconds

by AgentX86 - 2023-02-05 22:29:52

"I assume this is the reason"

You bet it is!  Five or six seconds is the normal dividing line between no-pacemaker/pacemaker. Six to eight can cause syncope.  Sixteen is closer to SCA than anyone wants to be. 

Once the heart stops, it relies on a random (chaotic, really) alignment of signals to get it to restart.  The longer the pause indicates the lower the probablity of these events and the lower the chance that the heart will restart at all. Some here have reported 30-seconds but that really is an interrupted sudden cardiac death. Sheer luck.

Heart

by JM2023 - 2023-02-06 02:59:03

That's interesting to know. 

My doctor did say that my heart would always restart itself, which was a relief as this is was obviously one of the things I worried about when he told me my heart stopped for 16 seconds 

I have a leadless

by _Claire_ - 2023-02-07 14:17:25

Hi James

I have a leadless PM for similar reasons to you. I was given mine in 2019 immediately after a collapse and a 13 second pause on my loop recorder. I was 34. I know now that I'd had vasogal syncope since being a child (which caused pauses/fainting) but I was misdiagnosed with panic attacks. My loop also showed some other pauses I believe, so I was diagnosed with sinus node dysfunction.

I had some issues with automatic threshold testing with this pacemaker as I could feel it fluttering every hour. The PM techs had no idea, I was lucky that a really good tech realised what was happening. I had the setting turned off. The hospital didn't know much about the PM and got Medtronic rep to talk to me instead about my questions in the early days. Mine doesn't pace me barely ever and it's simply there as a lifesaver for any future long pause. Therefore the PM doesn't affect my day to day life directly.

I was also told like you, that the heart can use other natural pacemaker cells to restart during a long pause, but I don't know how guaranteed that is and I wouldn't be happy to be without a pacemaker, if I was ever given that option. The batteries last a really long time for our situation as we're barely using the PM so that's another benefit. Mine is a very basic PM with no memory function so can't record other potential arrhythmias which is a downside for some people. 
 

In the future I would like a more traditional PM with more features and memory. At the moment I don't know if they retrieve these leadless PMs when the battery dies, or leave them in forever? I don't like the idea of either of those options. 
 

This group is a great source of info with some really experienced members here. 
 

All the best 

JM2023 MICRA AV on 8-2021

by Ram - 2023-12-18 01:50:20

You have probably resolved all your issues by now but just want you to know except for the first month out of the hospital everything has been great with this leadless PM.  Like you the first month I had all sorts of funny feelings inside and barely could walk because they had the upper level paced quite high so anytime I walked or moved a certain way I felt like a punch in the stomach.  I told them to turn off the upper level pacing as it wasn't necessary for me because my only problem was the heart pauses so I only needed the bottom level pacing.  I also had the bottom turned down to 40 bpm as it would kick in and wake me up at 50 bpm which is about my sleeping heart rate.  My battery has hardly been used. The monitor is really easy to transmit every 4 months as long as you read the manuel the first time.  You hopefully don't even notice you have it in you now.