Pacemaker or not - that is the question!

Hi - I'm from the UK and my condition is that when my heart rate gets up to around 150 it starts missing every other beat and therefore only happens when I do strenuous exercise. I am a keen runner having completed the London marathon several times and have been told that if i want to carry on running I will need to have a pacemaker fitted. My cardiologist has told me that I don't need one if I don't run but it is possible that the condition is progressive and I may need one anyway in about 10 years time (I am 55 yrs old). Is there anyone out there that has the same condition and what would you advise. Does a pacemaker hinder your everyday life?

12 Comments

running

by Tracey_E - 2013-07-01 08:07:59

My problem is different in that my pm is not optional, I not only need it for running but just getting through the day. But I'm extremely active and have been paced since 1994 so I have an opinion on your situation ;)

A few questions... does it happen every time you exercise or just sometimes? Does it keep you from exercising completely or just hold you back from doing your best? Are you able to exercise at all or is just running the problem?

Having a pm does not hinder my everyday life at all. Most of the time I forget it's there. It takes me a little longer to get through the airport. I can't have an mri, but that's not a problem with most of the new ones. Full contact sports are a bad idea and I'll never got a job at a junkyard operating that cool big magnet that picks up the dead cars. I have it checked every 3-4 months, am laid up for a couple of days when the battery goes. That's about it.

To me, keeping my heart strong and being fit is a top priority. Once we stop and let ourselves get out of shape, it's so hard to get it back and other health problems can start to stack up. My heart is already messed up (congenital av block) so I figure it would be pretty irresponsible of me to not keep my arteries clear and my muscles strong, end up with additional heart problems that could have been prevented. I will do whatever it takes to maintain the ability to keep exercising as hard as I can for as long as I can.

If you blew your knee, you wouldn't think twice about getting it fixed so you could get back to running. To me this isn't much different. If you can still be active without it, then maybe wait and see how it goes but if this is what it takes to maintain your current level of fitness, I'd be getting it done before your fitness level deteriorates. That's just my opinion, take it with a grain of salt!

Hi Tracey

by PAMMY - 2013-07-02 02:07:34

Thanks for your comments. In answer to your questions - no it doesn't happen every time I exercise - only when my heart rate goes up to about 150 bpm which is usually when I start running up a slight gradient or at a faster pace. I can still run (plod) on the flat but at a slow pace and as I am a competitive runner I find it very frustrating. I have to keep stopping when out running as I get dizzy spells but as soon as my heart rate drops I can carry on again. I have tried going back to playing badminton as I don't seem to have a problem with that but now I've got tennis elbow!
I agree that the longer I leave making a decision the harder it will be to get my fitness back - I have already put on nearly a stone in weight! One day I'm swaying towards having a pm and the next day I am not! That's why I thought I would go on this web site to see what other people have experienced before making my decision.

Hi ian - thanks also for your comments - it's made me wonder whether the pm will work for me as you seem to have the same symptoms when your heart rate is at a faster pace. Good luck with treadmill let me know how you get on.

Hi Pammy

by IAN MC - 2013-07-02 02:07:34

As your symptoms are so similar to mine..dizziness when the HR gets to a certain level.... I am curious to know if your cardiologist has actually given a name to his diagnosis. I am told that I have Sick Sinus Syndrome ; have you been told the same ?

Ian

Hi Ian

by PAMMY - 2013-07-02 03:07:24

I have found the piece of paper the cardiologist wrote on with my condition and it is -AV block - with effort - 2nd block - 2:1 wenckebach - if that makes any sense to you. I have had an MRI scan and there is no heart disease of furring of the arteries etc. He just said it was an electrical fault and does not know the reason it started happening especially with my age and fitness.

Pam

diagnosis

by Tracey_E - 2013-07-02 05:07:20

Here is a good explanation of the different types of blocks
http://www.hrsonline.org/Patient-Resources/Heart-Diseases-Disorders/Heart-Block#axzz2Xv5vBxfV

and here is a collection of animations that explain how the heart beats and how the pm works
http://health.sjm.com/arrhythmia-answers/videos-and-animations

av block means the signal doesn't go from the atria to the ventricles

with effort means it's not doing it when you aren't running

2nd degree means either partial block (some signal gets through) all of the time or full block some of the time

2:1 means for every 2 atrial beats, the ventricles are beating once

wenckenbach is where the signal breaks down

If we have to have a heart problem, believe it or not this is the best kind to have. The heart is structurally sound, the arteries are clear, the heart's natural pacemaker (SA or sinus node in the atria) works just like it should, it's an electrical short circuit. The pm watches. If the atria and ventricles beat in sync, it continues to watch. If the atria beats but the ventricle doesn't follow, it puts out a signal to the ventricles mimicking what the heart should have done, the heart responds to the signal with a beat. Our hearts are still setting the pace, our heart is still doing the work. The pm is just completing the broken circuit.

What Ian has is sort of the opposite problem as what we have. With activity, his SA node gets lazy and slacks off so in his case the pm is watching for activity and raises his atrial rate if needed. His ventricles work just fine so once the atria beats his ventricles beat normally.

They usually don't know what causes electrical problems. They can happen at any age and are unrelated to fitness. Some meds or infections can cause it, heart procedures and surgeries can damage the electrical system, but more often than not we never know what caused it. In my case, I was born without that electrical connection. It's not genetic, just a fluke. There is some evidence, nothing conclusive, that years of extreme exercise can cause the electrical system to degenerate. If you google it you can find the studies. That doesn't make sense to me, but I'm not a cardiologist. Strong is good, right? *confused shrug*

Have you had a Holter monitor to confirm you aren't going into block at night when you sleep (that's common) and also how high your atria gets when you run. Reason I ask is 1) if you are dipping down at night that's a reason to fix it sooner rather than later. it's not crucial, but low rates are hard on the body and 2) how high you get may affect your choice of pm when the time comes to get it. Most of them go up to 180. My upper limit is set at 175 so I can comfortably exercise up to 165-170. Medtronics makes one that goes to 220. There is one that only goes to 150, do not get that one!

Hello Pammy

by IAN MC - 2013-07-02 05:07:22

I was really interested to read your post. I, too, am from the UK and have run the London marathon several times.

I had a pacemaker fitted because of sudden falls in heart rate...bradycardia... culminating in me blacking out after a 10 mile run. I can now do every thing I want to ( except distance running) . I play fairly strenuous tennis, cycle and play golf BUT when I run ; at round 140 bpm, would you believe it ,my heart starts missing beats after a couple of miles so the PM hasn't fixed that but I'm no longer worried about the bradycardia.

The cardiologist can't work out what is going on and I'm off to the hospital for yet another treadmill test next week

Your condition may be different to mine and a PM may be
the answer for you . Keep in touch and I will let you know if I can suddenly run long distances again and what the answer was.

Best of luck

Ian

Thanks

by PAMMY - 2013-07-03 05:07:43

Your knowledge and comments are a great help Tracey - you obviously know your subject. Funny you say that the cause could have been from an infection. I had a nasty wasp sting where my arm went very red and swelled up. I had to have antibiotics and it was a few days after that when I started getting dizzy spells when out running. I did mention this to my cardiologist but he thought it was just a coincidence but i have wondered whether the wasp was the cause.

Yes i have had a Holter monitor which I wore for 24 hours but everything was normal. To be fair my cardiologist has given me every test going - from blood tests to echo cardio gram, ECG and MRI scan and all showed that I had a healthy heart and it was just the electrical fault when the heart was under stress that was the problem.

My heart rate can go up to 170-180 if that's what you mean by how high my atria gets so if I do decide to go for a pm I will check that i get the higher one. I was told that due to my age (young!! cardiologist's words not mine!!) he would probably fit me with an MRI safe one.

blocks

by Tracey_E - 2013-07-04 08:07:14

I was diagnosed in 1971, so I've had a few years to listen to the medical jargon get tossed around. I'm lucky to have a wonderful cardiologist and St Judes rep who indulge me when I pepper them with questions. Cardiologists can go a career and not have another patient like me, for the average gp it was an afternoon in med school. Other specialists are completely clueless so I've gotten good at explaining it.

It's great that you don't dip down at night.

Mri-safe pm's are a huge breakthrough. Imo, that is the biggest drawback/limitation to having this, that someday I might end up with cancer or something else that an mri is an important diagnostic and I can't have it. That might leave you with a decision to make. Most of them go to 180. One of the more popular mri-safe ones only goes to 150, I don't think he'd give you that one but it can't hurt to make sure. Medtronics makes one that goes to 220, no idea if it's an mri-safe one but I don't think it is, so you may have to choose between mri and an upper limit you might bump occasionally.

It's nice to have a cushion of about 10 bpm between the highest you get when exercising and your upper limit. I usually stay 150-160 when I work out, so my upper limit is 175.

It probably wasn't the wasp, but who knows. Were you on a new or super strong antibiotic? That would be more likely than the infection itself. The type of infections that can cause heart damage are more like the big systemic infections that land you in the hospital on iv's.

If you have any questions about the surgery itself or recover, just ask! I'm on #4 now, will have had this thing 20 years next spring.

Recovery

by LeeT - 2013-08-01 01:08:07

Hello Runner, I ran for years best I ever felt. You have many comments of which I have not read. First and foremost I couldn't accept my condition 22 years in the gym. Reality is yes you have two options and the third option is you could just drop dead during one of your runs. Please... I love to run but it's clear your times are a changing. Suggestion: you could run slower or get your PM but it will be different. It's ok I love the gym work out again since my PM feel very strong but cautious, listen to your dr. Not a fear monger rather a realist. Much Luck, Lee

Hi Lee

by PAMMY - 2013-08-04 04:08:32

Thanks for your comments.

If you read Tracey's comment above under diagnosis she gives a good description of my actual condition. It shows that the only problem I have is when my heart is under stress ie when it gets up to around 140-150 bpm.

I have been assured by my cardiologist (who I have a lot of faith in) that I won't drop dead or have a stroke. I have had MRI scans and all the usual tests which show there is no disease and my heart actually looks healthy so it is just an electrical fault. He says that the worst that will happen is that I may pass out and this would only happen if I carried on running when my heart starts missing beats. When it does miss my legs feel like lead and I feel a bit light headed so I have to stop anyway. My heart rate then goes down and I can carry on running again. So basically I can continue with running but obviously the condition is hindering my performance etc. The question is therefore do I bother with a pacemaker or not as in my normal everyday life I have no symptoms and therefore do not need one. It's all a matter of whether my quality of life is affected by my not running to the extent that I am used to. It's a very hard decision for me to make and that is why I came on this web site to see if anyone else had the same problem as me. Unfortunately I have yet to find someone who does share this problem. Everyone who has a pacemaker needs one to live. I am swaying towards the yes I will have one but I'm still not 100% sure.
Pammy.

Same as you Pammy

by OhioBob - 2013-08-09 05:08:54

Hello Pammy. Fortunately, you have now found someone with your same problem. Unfortunately, I am in the same decision making stage as you are.

I started having the exact same symptoms as you about 1.5 years ago, where my heart would miss every other beat when I was running uphill or at a faster pace. My body would force me to stop and walk until my heart went back into normal rhythm, and then I could continue running (at a slower pace). Since that time, it has progressed to the point where it now goes into AV block after I climb a couple flights of stairs. I have had the blood tests, echocardiogram, and cardiac MRI, which all showed that my heart is healthy and everything is normal. My cardiologist is now recommending an electrophysiology (EP) study, to determine exactly where the block is occurring in the electrical system of my heart - concentrating on the areas just above, at, and below the AV node. I currently have that scheduled about a month from now.

I found the story of the wasp sting interesting, because my symptoms started occurring after I had poison ivy all over my legs. I have no idea if there is any connection there, but I thought it was interesting.

I hope all goes well for you, and you get all the information you need to make your decision.
Bob

HOORAY

by PAMMY - 2013-08-10 01:08:17

Hi Bob - I am so pleased to have found someone else with the same condition - except that yours seems to have progressed quite quickly to having the symptoms just walking up a couple of flight of stairs. My cardiologist seems to think mine will progress at some stage but probably not for about another 10 years but obviously he cannot say for definite that that is what will happen.

I don't think I've had an electrophysiology study (I'm sure I'd know about it if I had) but I have been shown a diagram of where the block is occurring.

I also find it interesting that your symptoms started after having poison ivy on your legs - you never know do you?

Hope all goes well for you also and keep in touch with what's happening with yourself and I will let you know how I get on. I am going to put another posting on to find out if people had the same condition if they would choose to have the pacemaker or not knowing what they know now post pacemaker.

Pammy

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