Deciding if I need a PM

Looking for some advice or wondering if anyone else has been in a similar situation. I'm a 34 y/o male, had an ablation done in May 2019 due to an atrial flutter. Two weeks after the procedure I was feeling really crummy and had a rate around 40 bpm. It went away after 48 hours, then returned two weeks later, and again went away after 48 hours. At first, EP was suggesting a PM, but I then starting going a month, then two months without an episode, so he decided to hold off. I've had some more episodes over the months (sometimes shorter and not as bad, sometimes longer) and yesterday another day of low 40s and just feeling crummy (can't concentrate, exhausted, jittery, etc). 
 

I'm a regular runner (2-3 times a week, 3-6 miles per run). It doesn't always happen after running, but when it does happen, I've usually run the day before. At this point, EP is suggesting if it keeps happening to get a PM. He says it's really up to me when I feel it's time based on the symptoms.

Anyone have any advice? Anyone ever been stuck in this sort of in between stage where you don't absolutely need the PM, but it may be a good idea?

Thanks!


8 Comments

Decisions Decisions!

by arentas80 - 2020-01-13 22:36:22

Hello there!

I was in a similar situation. I'm a 39 year old male with sinus arrest (pauses) and sinus bradycardia. It was discovered with a Zio Patch and at first the EP said I needed a PM. The next day the attending Cardiologist said let's rule out all other options first. They did another sleep study because I had sleep apnea and surprisingly I needed more pressure. It actually slowed down the pauses from 8 seconds to 4 and under. The problem is they still happened nightly and my HR would drop down to 21, 24, 26 etc. It didn't stay that low for but a second or two but that was the low point. Long term my only option was a PM and now that I have it I'm ok with it. It gives me peace of mind and since I'm young I don't expect too many complications. Hopefully by the time I need the leads removed in ten or fifteen years they'll have wireless PM technology by then. I say if you're symptomatic I would get the PM. You don't want it to get worse and something happens when the PM could have prevented it. I wish you all the best with your decision and please keep us posted. Take care!

 

Alejandro 

Flutter after running

by AgentX86 - 2020-01-13 22:55:05

Sounds like a classical case of dehydration to me.  Make sure to drink plenty of water and I'll lay odds that you come up short on magnesium (maybe potassium, too, but almost all of us get more sodium than we need in three lifetimes).  Magnesium seems to be the key mineral that most are missing.  Exercise depletes minierals and water.  Make sure you replace them with daily suppliments.  Forget magnesium oxide, as well (eating sun screen is gross ;-).  The organic form of magnesium absorb much more completely.  One hint:  don't over-do the magnesium.  It could be ambarrassing.

 

It Happened to Me

by Swangirl - 2020-01-14 01:34:49

I was 46 with tachy-brady--irregular fast and slow beats which started when I had a huge stressful crisis.  I had an HMO at the time and was offered a pacemaker as my only treatment.  Within a couple of months my heart started to function normally and years went by when my pacemaker didn't pace even once.  I finally got a surgeon to take it out and went for many years without it.  I have a pacemaker now for an AV block and I always wonder if jabbing my heart with leads could have injured it.  I wish I had been able to have a more conservative treatment.  Sometimes doctors recommend a pacemaker to cover their own liability rather than waiting and it isn't the best option for the patient.

Depends on other factors too

by crustyg - 2020-01-14 05:42:37

Hi: If you've had flutter and you keep on with endurance activities then the chances are high that you will end up back in AFlut or Afib.  Read 'The Haywire Heart': we don't know exactly why some folk end up with atrial-driven arrhythmias (genetics is *probably* a factor), but you're in that group.

As your EP doc has said, whether you need a PM right now depends on your symptoms: your resting HR and whether you experience symptoms of low BP after sitting for a while, or when walking up stairs.  You need to ask yourself if you're fit to drive (sounds as though you are at present), but it would be terrible to come over all faint driving a car at 65mph.

When you feel terrible is your pulse truly regular and just slow, or are you having episodes of AFib already?  When you run, do you run with a chest strap to monitor your HR? (don't waste your time with A**watches or similar nonsense, they all use a pulseoximeter approach which doesn't work correctly if your heart beats are of varying intensity as they would be in AFib).

From your symptoms, you sound as though you're developing Sick Sinus Syndrome where your natural pacemaker, the SA node, is starting to fail.  You don't die from this, as normally other conducting tissue provides the essential electrical stimulation to the heart - commonly the AV node.  This doesn't work very well, no A=>V synchrony, and you feel terrible, but you're alive.  The natural history of this condition is that it gets worse, probably more quickly as you keep up the exercise.  I'm also an endurance athlete, 2 * AFlut, 2 * ablation, SSS+brady+CI and now PM.  Stopped competitive running, but I cycle up mountains with my chums (roadbike), + swimming + yoga + Pilates.  But I'm *old* - in your eyes!

It's a big step to have a PM implanted, but we get over it.  You're committed to a certain amount of intrusion into your life, and some PM box changes every 7 or 8 years (unless you get a large battery model which could last 14-15years), but it depends on what you want out of life versus what price you will pay to get there.

Keep up the athletics - don't stop exercising, the health benefits are huge - but be aware that in all probability the real question facing you is not *IF* I should have a PM, but *WHEN*.

HTH.

Yes decisions JS2020

by Gemita - 2020-01-14 05:51:12

What would I do in your shoes and at your age?  

Firstly I see you have had an Atrial Flutter ablation.  I believe some patients do have problems after an ablation when the heart is still healing and getting used to scarred tissue. They say healing can take longer for some. I suppose the other possibility is that after an ablation something else is "unmasked" like bradycardia or another arrhythmia and only your EP can comment on this. But after an ablation you may well be prone to having other arrhythmias, particularly as you are an athelete.

I would go back and speak to your EP.  Maybe ask for longer term monitoring to find out what is going on.  Then armed with good information you can make a decision (if this hasnt already been done?)

I was suffering from bradycardia, pausing and syncope prior to my PM so it was a clear cut decision but for years it wasnt so clear cut and I suffered, I believe, needlessly.  I also suffer from a number of arrhythmias (including intermittent Flutter) and I can honestly say that a PM has made a real difference to my quality of life and for the better.  

In your case because of your age, you will be looking at numerous PM changes over your lifetime so this needs to be taken into account. However it is the here and now that really matters and if you keep feeling you cannot get enough fuel in the tank I would work with your EP to try to rectify the situation and quickly !!  Before a PM however I would definitely make sure that nothing is being overlooked because PM implantation comes with some risk.  I wish you the very best and hope that this helps 

Thanks!

by JS2020 - 2020-01-14 08:30:40

Thank you everyone for such in depth and thought out responses. I didn't even know if anyone would reply when I posted. 
 

Just some other info I probably should have included in the original post:

During the ablation they found extensive scarring across the back of the top two chambers of my heart. I ended up getting an mri after to make sure it was Sarcoidosis (which it wasnt), so their best guess is it's a genetic abnormality or just something congenital. Either way, they think it is the cause of the flutter, bradycardia, or any electrical issues I'm having. They've also mentioned that my amplitude is very low, which I guess is due to the scarring. 
Sorry I didn't mention all that in the first post, just figured I should update to give a better picture. 
 

Thanks again everyone for all of your thoughts!

when to pace

by Tracey_E - 2020-01-14 10:15:58

I should have had one in my teens, early 20's at the latest. I had a doctor who didn't want to pace someone so young and I was terrified so I happily procrastinated until I landed in the ER with a heart rate of 20 and had emergency surgery. Not the easy way to do it, in case you are wondering lol. After, I felt amazing. It got worse so gradually I just had no idea how bad it was until I had something to compare it to. In hindsight, I was a little resentful that I suffered all those years when I could have been thriving.

So, my advice is if you have days you just are too tired to do much of anything, if there are things you want to do that you cannot, if your friends go do something fun but you find yourself backing out of plans, just do it. There is no need to live that way when there is a fix. I've been paced 25 years, putting it off a year or two seems pointless now. I'm on my 5th device, healthy and active, in the best shape of my life. The pacer has only enabled me to live more fully, there is nothing I want to do that I cannot. Don't rush into anything, but don't be afraid of it either. 

Your decision but …..

by IAN MC - 2020-01-14 10:40:02

Like you  I had a very successful ablation for atrial flutter  but a few weeks later developed Sick Sinus syndrome  and needed a pacemaker ....I am also a regular runner ... symptoms were breathlessness, low heart-rate, feeling faint etc.  As Crusty says above , it sounds as though you may have developed SSS.

I will never know if the ablation caused my need to have a  PM  or as Gemita said did it just unmask a pre-existing problem ? I will never know.

Wonderful though flutter ablations are,  they can damage the heart's electrical system and can lead to various arrythmias such as Sick Sinus syndrome . If you do have SSS , facts to remember :-

i )  It tends to get worse with time rather than better 

ii )  it is an intermittent condition. You will have good days and bad days.

iii )  a pacemaker is an immediate CURE of SSS -induced bradycardia, so it is a no-brainer

You appear to be also experiencing exercise-induced hypotension which of course leads to low blood-flow to the brain . The advice above re. hydration is very sound. I know some very talented distance runners who sometimes forget just how important hydration is.

At the end of the day, it is your decision but you may be just delaying the inevitable

Best of luck

Ian

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