Need advice about needing pacemaker

I am a 60 year old lifetime amatuer endurance athlete.  Cycling is my main activity (about 50-100 mi per week, on hilly terrain), with some running and other activities.  Last year I had three episodes, the first was on an a treadmill, at about 8 minutes, still in warm-up doing a slow run I felt really dizzy so I backed down to a walk for a couple minutes, felt fine, then continued back to normal pace.  I have a heart rate monitor watch, so when I looked at what happened later my heart rate in that first 8 minutes was slowly rising up to about 90 bpm, then dropped to about 60 bpm for several seconds, then recovered.  The second and third episodes were similar, sitting down with no exertion I became really dizzy and started to sweat profusely.  After a couple minutes in each case it went away and I felt normal.  I'm generally healthy with no other problems.

I went to my primary doctor who referred me to a cardiologist, who referred me to a cardiac EP, and then because of insurance complications I went to see a second cardiac EP.  They're all telling me I have sick sinus syndrome, chronotropic incompetence, and bradycardia.  I wore a 2 week external holter monitor, that didn't record a big episode, but it did show an average heart rate of 45 bpm overall, minimum heart rate of 30 bpm while sleeping, and a few bursts of tachycardia while sleeping.  The first cardiac EP recommends getting a MRI of the heart and having an implantable loop recorder put in to catch one of the resting dizzy spells.  Apparently there is a possibility they could be caused by low blood pressure, instead of low heart rate, which a pacemaker wouldn't help.  The exercising dizzy spell was definitely caused by tanking heart rate though.  The second cardiac EP says there is already enough evidence to indicate a pacemaker, but is willing to go the MRI and internal loop recorder route first if I wish.  I was cautioned I could actually black-out instead of just getting dizzy, and that would be dangerous in some situations like riding my bike or driving.

So I'm trying to decide what to do, wait until symptoms get worse, MRI and loop recorder first, or just bite the bullet and get a pacemaker if that's where I'm headed anyway.  I'm hoping someone on this forum has gone through a similar experience and could offer their advice.

6 Comments

crt-d

by asewrench - 2019-03-21 03:32:43

 my hart rate was similar to yours.  i put it off for a year. didnt think i really needed one,  ended up in the emergency room. hart failure dont waight like i did ,. just today at my wifes job a guy who worked there dropped dead . he also was diagnosed that he needed a pacemaker.  he also thought he realy didnot need it. he was 45 years old .   give it a shot it beats the alternative  hope this helps you on your decision  

Ditto

by Max's Mom - 2019-03-21 04:45:59

hello there I basically asked the same question a few days ago and got great advice ... I’m 59 y o and have similar episodes .. when I hear stories like asewrench and others about dropping dead or what if your driving it is concerning .

i myself have an upcoming appt please keep us posted and listen to the wisdom from the pro  pacers here 

 

It's a NO-BRAINER Joe, get a pacemaker !

by IAN MC - 2019-03-21 06:34:52

.... but what do I know , apart from having sick sinus syndrome, chronotropic incompetence and bradycardia and also being a very keen distance runner and cyclist.

Like you I ignored the warning signs for a couple of years... the dizzy spells, the drops in heartrate, the feeling that I may faint.   I was lucky , when I did eventually faint it was at the end of a 10 mile run and fellow runnners helped to break my fall. It so easily could have been at the wheel of a car or at the top of a flight of stairs !!!

There is no other treatment for bradycardia ( once Drs have discounted things like thyroid problems ), there aren't any drugs used to routinely treat bradycardia...a pacemaker is the ONLY  sensible answer.

 Bradycardia when caused by SSS has the nasty habit of getting worse which is when you  start fainting.

When you do bite the bullet explain to your cardiologist that you are a keen cyclist and suffer from chronotropic incompetence as the type of PM he fits is vitally important . You should avoid Medtronic and St Jude because they both rely on upper body movement to increase your HR when you are exercising. As a cyclist you would be much better off getting a Boston Scientific PM as it has dual sensors which measure your increased breathing as well as your upper body movement.

I was given a Medtronic PM and have had to virtually give up cycling.

Best of luck

Ian

Thanks everyone

by Joe_S - 2019-03-22 01:07:51

Thanks to everyone above that responded to my opening post.  It helps to know other people have gone through this, and what their experience has been like.  So far it's a pretty emphatic 4 votes get a packmaker now, 0 votes anything else.  There is a wealth of information on this website, and I'm grateful for that, as well as living at a time when there is at least a technological solution to problems like these we face.

I wasn't expecting that one sided of a response though.  The cardiac EPs I visited didn't present my case in quite the life threatening terms that some of you have impressed on me.  They did present the danger of fainting, but the danger was not that my heart would stop and not start again, the greater danger was presented as the potential collateral damage that would occur.

I understand I would be safer in general with a pacemaker.  What's given me pause is the number of posts on this website that describe all kinds of problems with the initial implantation, recovery, reliability and efficacy of the device long term.  It makes me wonder if I'm just trading one set of problems for another.

I understand many of the people that post to this website are those who have problems, and are seeking support and advice, so it's a skewed population.  I wonder what the overall statistics look like, for instance what percentage of people have PMs installed and lead unaffected lives afterwards, including returning to the same level of activity they enjoyed before the installation?

Ian, the second cardiac EP I visited spent about an hour with me, and went over the fact that some PMs are better suited for cyclists because they are not strictly motion activated.  I'm definitely going back to her.

 

Joe

by IAN MC - 2019-03-22 12:54:29

I sometimes think that this site should carry a warning  " Responses are not slightly skewed towards the possible  problems with pacemaker but are ENORMOUSLY skewed ".  I doubt though that there are any statistics to quantify this. 

A very small sample I know but I now have 7 friends with pacemakers. None have had ANY problems, none would even consider joining the PM club, they simply don't see any need.

The risks of sudden death / cardiac arrest from Sick Sinus Syndrome are absolutely miniscule and as you rightly say it is the collateral damage from SSS induced faints which are the real risk

Hope it all helps you to arrive at a decision.

Ian

intermittent

by zawodniak2 - 2019-03-22 14:43:53

I had intermittent episodes--mostly mild dizzy spells, but one faint when I ended up in the hospital and broke a rib.  Subsequent holter and tilt table tests and electrophysiology studies showed only bradycardia in the high 40's. Never a definite suggestion for a pacemaker. Due to my lifestyle of driving a motorcoach, I decided to get a pacemaker and glad I did. No more episodes and more energy and a better feeling of well being. Also, one of the great benefits not mentioned on this club site is the elimination of anxiety caused by the ever-looming fear of the next episode!! My electrophysiologist only suggested it would only be a matter of time before I would need a pacemaker----that was all I had to hear to help me make my decision..   Our rhythm conditions don't get better with time.  They only tend to get worse. Hope this helps.

                                     Rodger

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I had a pacemaker when I was 11. I never once thought I wasn't a 'normal kid' nor was I ever treated differently because of it. I could do everything all my friends were doing; I just happened to have a battery attached to my heart to help it work.