Nervous New Member

Sinus arrest

by Rch - 2022-08-12 02:53:37

Sorry to hear about your bad experiences with multiple syncopal episodes but almost all occurred during sleep.

All the work up you have had such as echo, surface 12 lead ECG or even the holter did not reveal any significant  symptomatic bradycardia. Nonetheless you do have a documented 7 sec sinus pause, a hallmark of sinus node dysfunction which is class 1 indication for a pacemaker. However, before you consent for the pacemaker, I would urge to consult your Neurologist to rule out other causes of syncope. Also, side effects of the drugs you are being prescribed for RLS, or are you on any beta blockers or calcium channel blockers? Any recent history of tick bites etc etc. 

Life turns on a sixpence (in the UK anyway!)

by toniorr11 - 2022-08-12 03:06:19

Hi there,

I'm new to this pacemaker journey having had one fitted in May. I didn't want anything to do with pacemakers and ablations and I was resistant at first but eventually I came to realise that I really did need one if I was going to get any Quality of Life and thats what it comes down to. The medics wouldn't be offering one if they didn't think you need it and it'd certainly take that fear of syncope away because your heart rate would never go that low again...ever! 

I'm sure there are more experienced people on here to advise on questions etc. I didn't ask very much at first and now I'm wanting to know everything....this was because I had no knowledge to start with. I had no idea that there are different types of pacemaker for example. However, I have now realised I'll never be a cardiologist or electrophysiologist but you need to find out if there are any other options I guess.

 I'm replying because I can empathise. The thing for me was definitely QOL. And remember, there's millions of people who live full and active lives with a pacemaker. Millions. I wish I didn't have to have one but I'm glad I've got it 🙂 

Good luck...this is a great forum btw. 👍

Rch makes a good point

by crustyg - 2022-08-12 05:17:33

Lyme disease is more common in walkers and runners, and can present with heart rhythm disorders.  Get your Lyme blood tests done ASAP.

But it's probably not that, and you are as close to the edge as you'd ever want to be, so you almost certainly do need that PM.

Best wishes.

Vasovagal Syncope

by Meliseo - 2022-08-12 10:24:35

Hello Mad Hatter,

Your story sounds pretty similar to mine. I'm 33 years old and this February, I woke up in the middle of the night feeling sick, went and stood at my bathroom sink for a moment, and passed out. At first I wasn't worried, as I was told at the hospital that maybe I was just dehydrated and I should just go home and make sure I drink enough water.

A few months later in May, it happened again. I woke up in the middle of the night feeling sick, went and sat on a chair on my balcony to get some air, and then passed out. This time, I unfortunately injured myself when I tumbled out of my chair and onto the brick floor face first. The EMTs arrived and as they were examining me, I passed out again. When I awoke I saw one of the EMTs standing over me looking at the EKG, where I could see the flat line (15 seconds). When I saw that, I thought I was toast.

I was rushed to the hospital once again, and this time I was told I would probably need a pacemaker. I was in complete shock. I spent the night in the ICU and the next day, the cardiologists diagnosed an atypical form of vasovagal syncope (since it is apparently quite rare, but not unheard of, that syncope is triggered while you're sleeping).

They gave me three options:

1) Go home and do nothing. Try to lie down if I feel ill again, so I don't injure myself when passing out.

2) Implant a loop recorder which would record my heart 24/7, so they could catch any kind of infrequent arrhythmias or record the heart during the next fainting episode.

3) Get a pacemaker. They informed me that if I was over the age of 40, this is the option they'd recommend, but they were only hesitant because I'm young.

I decided to go for the loop recorder, to gather more data about what exactly the problem was and how to treat it.

A little over a month later, we got the data.  I woke up and passed out again, this time in bed. The next day the loop recorder showed that my heart had paused for 10 seconds.

The doctor explained that the pacemaker may not stop the fainting (as there is a blood pressure component to vasovagal syncope that could also cause a faint, regardless of what the heart's doing), but it would mean that my heart would no longer pause during these episodes. I was also told that the only danger to me from this condition was injury from falling, and the heart would always start again on its own. Nevertheless, my quality of life suffered greatly as I became terrified of passing out and injuring myself. What if I pass out on the stairs? What if I pass out in the crosswalk? What if I pass out in the tub? And despite being reassured that my heart was only pausing and would kick back in on its own, I just couldn't manage to feel safe knowing my heart was stopping at random, even if only briefly.

I did quite a bit of research into the studies that have been done regarding vasovagal syncope being treated with pacemakers. Especially promising were some recent studies on Pacemakers using the CLS algorithm to try to abort vasovagal syncope episodes before they develop into a full faint by detecting heart contractility. (This is used to try to detect how much blood is in the heart, as a measure of sudden blood pressure drops, which often precede the heart slowing down and even pausing in this condition.) When the pacemaker detects what it thinks is a sudden blood pressure drop, it kicks up the heart rate to try to counteract this and keep blood flowing to the brain.

It took some time for me to come to terms with the decision, but in the end I decided to go for the pacemaker. What helped me was talking to others who had pacemakers or defibrillators, who had told me they felt reassured and much safer since they had their devices implanted, and that they didn't feel limited by having the device. They were living perfectly normal lives, and had less anxiety than before. I also talked with friends, family, and other doctors and cardiologists. And of course, I found this forum, which was full of helpful information and stories from others who had similar experiences, as well as lots of encouragement.

I wrote down every question I could think of about vasovagal syncope and pacemakers and had a meeting with the cardiologist where he listened to my concerns and explained everything to me in detail, so I could feel like I knew what to expect.

I got my pacemaker three weeks ago on July 20th (a Biotronik pacemaker with the CLS algorithm I spoke about). I'm still not sure if the fainting will stop, but I feel hopeful that it will. (Or at the very least, happen much less often.) So far I haven't fainted yet since the implant, but it's only been a few weeks, so let's see.

I also feel hopeful because the problem is at least halfway solved. My heart is not going to stop beating in the middle of the night anymore. If the episodes continue, I can have more peace knowing my heart is still beating. And I also feel now I have more options to try if the problem continues, because now I only need to try to manage my blood pressure. For that I could try medications or lying down and tensing my muscles if I feel ill to return blood to the heart. Or maybe changing some settings on the pacemaker.

The point is, it was a very difficult decision for me to make, but in the end, I think it was the right one for me and I don't regret it at all. I hope that my story can help as you adjust to this new reality. I'll be sending my best wishes to you on Tuesday!

The Right Path

by MinimeJer05 - 2022-08-12 11:36:50

Hello,

First off, I am sorry that you have ended up here, having to ask all of these difficult questions about a potential pacemaker. But let me start by saying, you are on the right path. Ask lots of questions and make sure you get lots of answers.

It might not make the decision any easier or the stress any less, but at least you will hopefully form the idea of knowing what is right for YOU. My situation was much different, but I am also only 30 and was never expecting a PM (but was born with other heart-issues that I thought we figured out) and I can say that I try not to think of my PM as a burden or concern, but instead just a reassurance thing -- it's not doing any harm (I hope not, right?), and it's not preventing me from living my life in a mostly normal manner, so why be concerned?

I hope you find the answers you seek and I hope the deicsion is made with as much knowledge as one can have -- know that it's never easy learning that you may need one, but it WILL get better.

Take care

Jer

Pacemaker?

by AgentX86 - 2022-08-12 11:39:49

With a long sinus pause, you absolutely need a paemaker.  An ablation is the wrong solution and dehydration is very unlikely to be the cause, particularly if it's repeated.  Worse, a seven second pause may not be enough for complete syncope, suggesting that you've had longer.

When the heart stops (pause), it's only a random (chaotic) occurance of small electrical signals that restart it. The longer the pause lasts means that the probability that this occurance will happen. At some point, it won't and you won't care anymore. Cardiologists typically put the threshold of watch/do at five seconds.  Shorter than that, just watch and perhaps to frequent Holter tests to monitor the situation.  At five seconds, the decision is made and there is no longer any "watch". It's time to do.  Any syncope says the it's go-time, too. As noted, syncope can be deadly.  Driving or at the top of a flight of stairs could end it all, and not just for you.

Thyroid condition (either hyper or hypo) can cause heart damage, either temporary or permanent, but it doesn't change the solution. ...and it is a solution.  A pacemaker is absolutely the fix for this.  After, you live a perfectly normal life, as will your wife.  Think about that.

@Meliseo

by Mad Hatter - 2022-08-12 11:42:43

Wow, that does sound similar!  It was strange to me to hear the EP say there is little risk that my heart won't resume beating, only that I could pass out and injure myself.   Like you, the thought of my heart stopping is more concerning than the passing out and especially for my wife.  In light of that the option of doing nothing kind of threw me for a loop.  That and the fact that it only happens during sleep as you said makes you think it might be manageable without a pm.  I'm sure the decision was even more difficult at your age so thanks for sharing your experience.  Very helpful. 

@agentx86

by Mad Hatter - 2022-08-12 11:55:40

That's a helpful explanation of the heart pauses.  I think if the EP had explained that and said you need to do this right away I might not be questioning so much. I know he was trying to be helpful and involve me in the decision making process but it just seemed a little nonchalant to me.  I'm sure it's the easiest diagnosis and surgery he does so it probably is no big deal in his world but it is in mine.  So thanks to all who are responding with empathy--I definitely came to the right place.  

Similar Experience

by Shaun - 2022-08-12 12:11:56

8 years ago at the age of 53 after an enjoyable day of cycling I passed out during the night while sleeping. Within the following 24 hour period the same thing happened about a dozen times, each time while I was sleeping. My only option was an immediate pacemaker after which no further episodes.

PS. My ECG revealed 40 seconds of 5+ second pauses.

PPS. The only previous indication I'd had that "all might not be well" was a single syncope episode the year before. But because it happened while I was sleeping then I was unable to make sense of what had happened to me and so it went undiagnosed.

Longer term monitor

by Lavender - 2022-08-12 14:05:41

I would ask for a thirty day monitor to see if these events are happening more often than you think. 

Less nervous and moving ahead

by Mad Hatter - 2022-08-12 16:23:26

Thank you all for your comments.  They all helped me work through the issues in my mind.  Two other things have made a big difference this morning: 1.) The original cardiologist I saw called to check up and confirmed that the pauses are still happening from 3-5 seconds and they are going to keep calling me until I get the PM; 2.) Saw my PCP, asked lots of questions about the RLS medication, possible other contributing factors, he understands my concerns but fully supports PM, says not only will it continue to happen but will probably get worse untreated.  He knows the EP and highly recommends him.  I am thankful he referred me to the cardiologist and that the cardiologist encouraged me to do the holter monitor or I would not know.  As some of you said, I guess I need to change my perspective of the PM as reassurance rather than a limitation.  I know it will be for my wife!

So ready or not, here I come.  I'll be expecting my official club membership card and secret handshake induction ceremony next week.

Persistent sinus pauses

by Rch - 2022-08-12 17:28:55

I agree with your decision to proceed with the Pacemaker as recommended by your PCP and the Cardiologist as the pauses are still continually happening on the holter and all treatable causes have been ruled out! 

You will do fine!!! 

Definitely Reassurance

by Shaun - 2022-08-12 17:50:51

In the 8 years I've had my pacemaker, the only limitation I've experienced is not being able to have an MRI for my prolapse disc. I'm still cycling, in fact some of my cycling buddies are convinced my pacemaker gives me an unfair advantage. Given that I'm 15 years their senior and still beat them on hill climbs then I can see their point ;-) Good luck next week, it's the right decision.

Best wishes!

by Lavender - 2022-08-12 21:44:10

Report back after you get your battery pack on Tuesday! Sounds like the right decision and that you're more at peace with this course of action!

All will be well!

Just a thought

by Lavender - 2022-08-15 10:06:17

At one point, I was misdiagnosed with restless legs syndrome too. They gave me Requip/Ropinirole. The medicine made me faint. 
At the time, I had not been diagnosed with ventricular standstill. I later saw this warning on that med:

Make sure you tell your doctor if you have any other medical problems, especially:

Heart or heart rhythm problems

Maybe once your pacemaker is in, you may find you don't have RLS if the low rate wasn't getting your legs enough circulation. 
 

Again, just a thought. 
May God guide your team tomorrow to a great outcome!

@Lavender

by Mad Hatter - 2022-08-15 15:03:03

Lavender, the same thought crossed my mind.  I have taken Mirapex nightly for years and occasionally also Gabapentin, both of which I had taken before my flight because I was concerned about RLS on a long flight.  None of my doctors have suspected that to be a cause, nor the thyroid medication.  The RLS has gotten worse over the years and often kicks in after I initially fall asleep, which would correlate with a lower heartrate and possibly the rhythm issues (maybe even before I started taking the Mirapex?).  Blood pressure is normally remarkably low for me as well.  The EP said if I had been able to lie down I probably wouldn't have passed out, but because I was sitting up on a plane blood couldn't get to my brain so I kept passing out.  I was actually surprised that didn't have an issue with RLS on the plane but you're right, if it is circulation-related then my legs were getting circulation but my brain wasn't!

I do believe God was merciful to reveal this issue to me in this way and that my doctor referred me to the cardiologist or I would not know until something maybe worse was bound to happen.  Thank you for your prayer.  I am at peace and ready to get it done.