Vasovagal Syncope & Pacemaker

micra pacemaker

by new to pace.... - 2023-06-16 20:09:04

not that many have this particular model.  You  can click on what looks like a magnifing glass next to "log out".  In the search box put in "Micra". there will be some answers for you about the Micra.. 

new to pace

Hi Millie

by Lavender - 2023-06-16 22:21:08

You wrote your story so nicely! I too fainted a lot and no one was too concerned. Like you, my body was sneaky and didn't act up when I had tests.  Finally I insisted on a thirty day heart monitor.  Ten days into wearing it, I fainted. My heart paused for 33 seconds. That led me to the ER - and I finally had proof-I have a rare arrhythmia called ventricular standstill.  I was fine except for when I fainted 🤪

I have had a CRT-P pacemaker for two years now. I'm used to it. I'm glad to no longer be fainting. I'm not on any meds. I am fixed now. I live a busy normal life. 
 

I know nothing about the Micra. Folks a lot younger than you-even babies-get pacemakers!

Leadless pacemaker ?

by Gemita - 2023-06-17 10:09:31

Hello Millie, what a lovely upbeat message you have sent to us.  I think you will do well whatever pacemaker you choose but I would have a long chat with your EP to find out the limitations of a leadless pacemaker like the Micra first before you commit to one.  At your young age, you don’t want to be held back activity wise.  We are a traditional pacemaker family for members who have pacemakers with leads although we do have a growing number of members who now have leadless single or dual chamber pacemakers, so I hope they will see your message and respond.

By the way, you are not the youngest member with a pacemaker.  We have mothers posting about their children and even telling us about pacing their babies.  Members may have been paced from birth, so at 29, you are quite mature to be paced for the first time.

I have vasovagal syncope and my dual lead pacemaker has definitely helped prevent a loss of consciousness from sudden falling heart rates, but not everyone with a pacemaker is helped with this disorder since a pacemaker cannot prevent a sudden fall in blood pressure and a sudden fall in blood pressure can certainly trigger a syncope episode particularly if we are dehydrated at the time.  The pacemaker will however prevent long pauses from occurring since pausing and slowing of heart rhythm (bradycardia) can trigger syncope.

Surgery and recovery for the majority of patients is straightforward.  Most are able to return (for pacemaker recipients implanted with devices with leads) to work after about 7 days and rarely experience major symptoms like pain following their implants, although clearly a small number do, particularly if there are any complications from the implant.  A leadless pacemaker should be less traumatic and healing should be faster and less restrictive.

So I wish you well whichever pacemaker you choose.

Focusing on the pacemaker surgery

by Gotrhythm - 2023-06-17 15:47:01

It really is minor surgery. For someone like you, young and in good health otherwise, it's likely to be outpatient with minimal anesthesia. Takes 4-5 hours, door to door.

I have a regular pacemaker, which is slipped just under the skin. It doesn't connect to your nervous system or your circulatory system. It's just a little metal thing under the skin with wires that go to the heart. The little endpoints of the wires that touch the heart are really to only way it's connected to you.

What you will feel afterwards is the after effects of the incision in your skin and the healing of the "pocket" the surgeon created to hold the pacemaker. I had minimum-to-no pain, either when I got my original pacemaker or its replacement.

I haven't had a MICRA, but I understand the surgery and after effects are even less.

I"m not going to tell you the surgery is "nothing." But I will say I've had dental suegeries that were more painful and I felt worse for longer afterward.

You'll do great.

Addendum: I too have vaso-vagal. It was diagnosed after I got a pacemaker, so I didn't have to get a pacemaker--I already had one!

Pain & Endometriosis

by Penguin - 2023-06-17 17:03:02

Hi Millie, 

I posted to Chris67 just a few posts down from yours on a very similar subject. Rather than regurgitate the same response maybe take a look at it and the link that I attached.  This is quite a big decision for you and my (peer) advice would be to take your time making an informed decision ideally guided by an expert in the area of syncope disorders - particularly as you've been fainting since you were a young child.  

You mentioned endometriosis (possible).  I'm not a sufferer myself but it's well known that it causes a lot of pain and pain is a trigger for fainting. It can also cause significant blood loss. No need to answer on the open forum as I appreciate that this is personal territory but fainting, palpitations and anaemia are also linked and if you are struggling with endometriosis it's worth getting yourself checked out for anaemia in case it's affecting your heart rhythm.  

Should you get a pacemaker?  I don't know.  Your cardiologist thinks you should and you have a second opinion, but I don't know if they have expertise in this area? The link in my previous post is written by a specialist in syncope disorders.  I'd listen to a specialist before making such an important decision because thinking on the usefulness of pacemakers for vasovagal syncope is variable and their usefulness isn't that clear cut.   

Expect to have medication added which 'swells' blood volume.  Pacing alone can't solve a BP issue unfortunately.  

Research Paper by Richard Sutton

by Penguin - 2023-06-18 03:39:20

This paper by Richard Sutton (the professor cited in the British Heart Foundation link provided in a previous post) summarises research paper findings up to 2019 and is written in a fairly accessible way.  

He comments that research data for younger people (roughly below 40 yrs of age) with VVS is absent. I'm not sure whether his comments on the social disadvantages of pacing for younger people are that pertinent or not, but that's just my opinion. I guess it depends on the individual and their activities. 

Note: The paper summarises findings in research up to 2019

 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7196018/

There is also a later (much more complicated) paper which, if you can wade through it, explains a pacing mode that is now thought to be useful for VVS - the Biotronik CLS algorithm.

Note: the study was conducted on just 36 people.*

The authors comment on the effectiveness of CLS and explains the pitfalls of previous rate drop algorithms that various manufacturers used. In essence CLS jumps in sooner to prevent syncope.   

The paper flags up any dilemmas which have not yet been addressed via research and these include AV block which can apparently appear during VVS (the mechanism isn't completely understood) although holter monitoring may not indicate any AV conduction disorder.  

This 2020 research paper is new to me and I'm still digesting it. I'd suggest that you get somebody medically qualified to explain it to you.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7196018/

Apologies for the double post but I wasn't aware of the 2020 research previously. 

*Late edit: Typo. This should read 46 people in the study

Just had a pacemaker inserted - what to expect

by Joisey - 2023-06-24 14:27:48

I was resistant to getting a pacemaker - I am 56 and also had some episodes of syncope, after wearing a heart monitor for a week it showed one night my heart stopped for 15.7 seconds - luckily while I was sleeping that time! It took a little convincing, but it really is providing some peace of mind. My heart won't stop again and I shouldn't faint again either. I just got it done on 14 June.

As for what to expect with the surgery - it was not awful, nor is the recovery. The hospital I had it done at required an overnight stay - just check to see what yours says - but I know for some it's a same day procedure. Local anesthesia and you are given something so you are semi-awake. I could hear everyone talking but was super-relaxed, and they put something over my face so I couldn't see anything. Afterwards, minor pain (controllable with Tylenol) at the site and obviously some temporary restrictions. After 10 days, pain is pretty much gone. Root canal was worse than this!

One nurse told me this is like getting an insurance policy against future issues like what I had. Worth every penny to me!

Good luck, let us know how you do!

Leadless pacer

by Chey - 2023-06-30 05:57:28

Hi Millie,

im 28 and have an almost identical story to yours. I just got the Aveir leadless pacemaker 2 days ago. Did you make a decision? I'd say the only downside to the micra is it doesn't have a great retrieval rate and you'd likely need more than one in your lifetime (: 

this is hard decisions , here for you

ICD/Pacemaker

by mkatz - 2023-07-18 17:46:11

Hi Millie!

I'm very new to all of this too, but thought I'd share last week I just had an ICD/Pacemaker placed. I've fainted throughout my life and was told it was vasovagal and not to worry, then I had a few episodes back to back this year and was referred to a cardiologist. It turns out I have a congenital heart defect, left ventricular non-compaction, this led to me getting a tilt test a month ago and I passed out and my heart stopped for 18 seconds. It's been quite confusing since I have had a few doctors give different recommendations but due to my LVNC and syncope I have the pacemaker/ICD implanted. I'm 34 and feel pretty young to have this happen and I can relate to feeling like my symptoms have always been dismissed, even the doctors recommending the ICD have been a bit dismissive in a way, they are convinced it is still severe vasovagal with asystole that is benign and that it is incidental that I have a congenital heart defect. Perhaps this is true but I am sensitive to being a relatively young woman and my entire life essentially being told I'm just anxious and need to drink more water. Sorry I'm rambling a bit but I can very much relate to you, I'm glad we both got checked out and advocated for ourselves. A week after the ICD and I'm feeling a bit tired but overall pretty great!

Welcome to the club ✨️

by aodorisio10 - 2023-07-22 14:42:23

First, I'm sorry to hear about your experience not only with your symptoms but with some of the treatment you received from some of your providers. But I want to commend you for being your own advocate and not backing down. I don't care how skilled or smart your provider is, you know your body better than anyone.

My story is actually a bit similar to yours. I had a short episode of cardiac arrest during a tilt table test I had a few weeks before my 30th birthday. Even then my provider was very dismissive and said having vasovagal syncope isn't that dangerous. I insisted on a second opinion and thankfully found a wonderful cardiologist that recommend a pacemaker. 

It's definitely a shock and takes time to process that information. It challenges how we see ourselves and our capabilities. But I've learned that it can look like however I want it to. I used to be worried of what I wouldn't be able to do with a pacemaker and my cardiologist told me I get to do those things because of my pacemaker. Getting my pacemaker has made such a different for me both physically and emotionally. 

I also had never had any surgery prior to this procedure. It was relatively simple and recovery was doable. It's different for everyone and it takes time for your body to adjust but before long you'll find yourself feeling normal. I have times I forget I have a pacemaker. But I'm very grateful to have one and I look at it as a strength and a tool that keeps me in the game so to speak. I hope this helps and don't hesitate to reach out or ask any questions. I wish you good health and the best of luck on your journey 👏👏