PPM/Beta blockers/ prior ablation

53 years old today. First time posting. Diagnosed with Wolf Parkinson White disease at age 22. Cardiac ablation performed. Required medication for rate control for many years due to some idiosyncratic tachy  rhythms. Fairly well-controlled until the past one year with beta blockers. Have developed a intermittent 2nd° heart block. As a result recommendation was to come off beta blockers to see if this would help. Significant difficulty doing so but was able to stop beta blockers eight months ago. Suffered with significant withdrawal. Have worn three event managers. Have had a local electrophysiologist opinion and opinion from Cleveland clinic based on my current situation. 

 Recommendation is pacemaker placement to help correct the 2nd° block. 

 One of my main concerns is I still suffer from significant tacky rhythms and very from fast heart rate with intermittent pauses all the way to regular heart rates that end up going into a 2nd° block. 

 I am symptomatic almost hourly. Quality of life not great at all, still able to work. Deathly afraid of having a pacemaker placed, have been told there are no guarantees which I understand that it will correct my situation. With the heart block situation, I do suffer from significant Canon waves i.e. throat tightness, jar discomfort, neck pulsation, this is all due to retrograde flow from electromechanical dissociation. This symptom has also been termed “pacemaker syndrome”.

 I have also been told that if pacemaker placed I will likely need to go back on beta blockers for rate control. Supposed to meet with the electrophysiologist again soon, we are supposed to review my most recent, third event monitor recording. 

 Extremely anxious, depressed, scared, symptomatic, fear of the unknown, possibility of inheriting more complications from an implantable device that can’t really guarantee to fix the problem.  All of this I know the physician can’t know until something is placed. 

 Not sure how many people out there with similar situation with a heart block yet tacky problems requiring beta blocker therapy. 

 Again, first post here, any thoughts or comments are appreciated, happens to be my birthday today, 53 years old, not what I was expecting to do today, LOL. 

Thx

Doug

 

9 Comments

happy birthday

by Tracey_E - 2018-09-02 11:17:49

I know it doesn't seem like a pacer is  a very good birthday present, but it might just be the answer to some of your problems. Were you feeling good on the beta blockers before the heart block? It's good that they took the conservative approach and tried going without the beta blockers before jumping in to a pacer but it seems like that's not working out so a pacer can be a good option. There are no guarantees it will fix everything but there are a few things you can be confident a pacer will do for you, including allowing you to be on enough beta blockers to control the tachy, not allowing pauses, and fixing it when you go in block. That should get you feeling a lot better than you do now. 

Don't let the posts here scare you. We tend to attract the people with rare complications so reading the posts makes it sound like every other patient has problems. Most get a pacer and get on with their lives with no issues. There are really very few risks and complications happen less than 1% of the time.  Everyone heals differently but most of us are pretty much back to normal within a week or two. We might be a little sore and napping more, but overall feeling pretty good and getting back to our lives. I'll be 52 in a few weeks so we're close to the same age, but have been paced since my 20's. I do what I want to do and for the most part forget the pacer is there. I have congenital heart block, not WPW, so my situation is different, but the pacer itself is no big deal. I found the idea of it was a lot more scary than the reality. 

2nd Degree heart block pacing .

by Selwyn - 2018-09-02 12:26:53

You can look forward to many more birthdays, fear not!  This club has 33 000 members and is just the tip of the iceberg in numbers of pacemakers fitted per year. 

A pacemaker will get rid of your distressing symptoms from the incoordination of the heart chambers and relieve tiredness.  The Guidelines are type II second-degree AV block (either intra- or infra-His), symptoms are frequent, prognosis is compromised, and progression to third-degree AV block is common. The sooner you get a PM the better for you.

I think I would combine this with further electrophysiological studies of your heart to try to understand where the tachyarrhythmias are coming from. It may be that they can do something permanent to stop these ( I have had 3 ablations and now have stopped all antiarrhythmic meds.).

Nothing to getting a PM implanted- a bit like flying, everything has a risk ( even lying in bed), however the overwhelming odds say you will get benefit. Many in the club are active, sporty, and would not be around were it not for their PMs. 

Happy Birthday- look forward to the PM and some decent health. 

Selwyn 

2nd degree heart block

by AgentX86 - 2018-09-02 13:06:03

Were I in that situation,  I'd be begging for a pacemaker. It should correct the big problems and allow you to get back on the beta blockers. Did your EP mention an AV ablation?

I've been on beta blockers (metoprolol) for a dozen years, because of Afib. Six months ago I had a pacemaker implanted for Bradycardia and pauses. It hasn't been a perfectly smooth ride but at its worst, it's been better than a year ago.

I'm now dependent on my pacemaker but I have my life back. I wouldn't have been able to work, as I was. My advice is to get over your irrational fear of a pacemaker. No, it's not the best situation but it's the best of the choices in front of us.

PPM /2nd degree block/BB

by 69ChargerMD - 2018-09-02 15:56:41

Thank you very much for everyone that responded, I truly appreciate it. I had a open ablation at age 22 for treatment of my Wolf Parkinson White disease. I had several EP study’s post ablation to investigate some of the tacky rhythms, no obvious source, no further accessory pathway. As a result, I ended up on various medications to help control rate. Never really had any “rhythm problems”.

 Historically I felt pretty well on beta blockers, could exercise, do whatever I want, no limitations up until the past year when I started having significant pauses and therefore was diagnosed with the 2nd° intermittent block. Despite being off beta blockers, the 2nd° issues remain and now suffer from tacky rhythms along with it. Quite a roller coaster. 

 I really appreciate people’s comments about getting over the fear of proceeding with a implantation, I know it’s a rational but I have had several  heart issues for many years including the above mentioned ablation, proximal LAD stent thing after an acute coronary event and now what looks like development of a intermittent 2nd° block. Always feel like a time bomb sitting in my chest. 

 Current rhythm problems are getting more and more difficult to deal with, quality of life seems to be suffering. I will keep everyone updated after I meet with my electrophysiologist soon and again truly appreciate peoples insight, comments, concerns, etc., sincerely Doug 

Addendum

by 69ChargerMD - 2018-09-02 16:00:34

 Just wanted to add, I think my purpose of posting on the site was to get some input from people that have gone through this. Always easy to talk to family, friends, colleagues and get advice but this input from everyone on the site means much more and helps put things in perspective, again thank you 

Time bomb

by AgentX86 - 2018-09-02 16:19:43

You may think of your heart as a time bomb but it's the only time bomb you get. A pacemaker will stop the timer. Even if the have to cut the red wire (AV node), the pacemaker will almost certainly make your life better.

2::1 Heart block and tachy problems.

by Jane S - 2018-09-03 07:41:57

Hang on in, I have been through similar (no WPS) with HB and pacemaker syndrome and intermittant A.tachy It took a while to get diagnosed and and a couple of years to get settled (AV node ablation). There were good spells nad bad but when I felt good I did evertthing I could, hill walked cycled kayaked and went to work and looked after my mam who had dementia.

Now 3+ years after PM implant I'm in the very lucky position to have taken early retirement (56) and now the proud owner of my very own sea kayak and looking forward to doing more adventures. I still have off spells but try not to fight them, have a chill day and allow myself to take it easy. I take a low dose of bisoporol for the tachy.

I totally get your frustation, but dont be worried about asking questions and getting the PM implanted is not nothing ,but at the same time a very routine procedure . It will help sort out your block and that in its self will make a huge difference. Once things have settled after that then any other issues can be worked on.

Good luck

Jane

Doctors appointment tomorrow

by 69ChargerMD - 2018-09-13 16:34:20

Have appointment with the EP Doc tomorrow to review my most recent event monitor. Looking forward to it but nervous nonetheless. We will see what he advises based on the event readings. If a PPM is the answer, I will set it up. I have been procrastinating for some time but the above comments and this site has helped quite a bit to improve my courage. Will post more over the next few days. Thx everyone. Doug. 

Date set for PPM

by 69ChargerMD - 2018-09-28 06:54:29

Met with my EP, date set for Oct 5th for PPM. Event monitor continues to show significant 1* and intermittent 2* blocks. Wish me luck. Thx 

Doug. 

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