New Pacemaker

Hi everyone,

I'm new to the site and hoping for some insight about my new pacemaker. I'm a 32 year old woman with no previous health issues. I'd been having dizzy spells for the past year which, up until now, had been diagnosed as panic disorder. My good doctor had me wear a heart rate monitor and it turned out that my heart was stopping. I have complete heart block and had my pacemaker implanted 5 weeks ago. It's been a bit of a rough road as I'm convinced there's something else really wrong that hasn't been diagnosed. So, first off, is there anyone out there with the same fears and if so, any tips on how to let go and start accepting and perhaps even embracing my pacemker :) ?

Additionally, I started running again this week. Ironically, I had run my first 10 miles race a week before I found out about my heart problem. After a light jog, I started walking and bam, I felt like I had balcked out for a split second. I went to my cardiologist who checked my pacemaker and said I was fine...to let him know if it happens again. Needless to say, I'm a little fearful. Has anyone had similar dizziness etc after running or working out? I'm wondering if it has to do with my pacemaker's upper limit (170 HR when running, 120 when resting) and maybe I went from running to resting too quickly? Again, I would appreciate any and all insight.

Thanks for listening and I look foward to hearing from the pacemaker pros out there!

7 Comments

What works for me

by Russ427 - 2008-07-14 09:07:40

Hi spraks08,
Yes getting a PM does suck, but it's better than the alternative, you know, possible sudden death, etc. What works for me better than anything else is exercise, I work out for and hour to an hour and a half nearly every day. It is by far the best medicine for me. I have heart failure, and according to my echo cardiograms my ejection fraction is only 16%, even with my pacemaker. That means that my heart works only 1/6th as well as a normal person. I am also a runner, I have run the Deseret News Marathon, one of the hardest Marathons in the country, with a lot of rise and drop in elevation, the first 20 miles is run in the mountains and did it in under 4 hours. I was really mad at god, but I am slowly coming to accept my situation, kind of. Staying as physically fit as you possibly can gets the endorphins going and you gain a real feeling of confidence, feels like your " life force" is greater. Weight
training makes you so much stronger, is so good for you head, and makes your bones more dense. People that meet me for the first time are shocked if I tell them I have heart failure because of the way I look. So don't dwell on what you have lost, think about what you have left and what you can do. My attitude toward my heart failure is screw this crap, I'm going to fight like hell and have the best life I possibly can, and YOU SHOULD TOO! You can feel and look really great. Do this and you will also be kind of an inspiration for the people in you life. The ones that are close to you know about your
situation and they can be positively affected by your fighting attitude and actions.
All the best to you, make the best of this stuff, YOU CAN DO IT!
Russ.

New pacemaker

by ElectricFrank - 2008-07-14 10:07:30

Welcome to the club! A few comments from someone with the same problem as you only I'm 78.

First off it is helpful not to use the term "Heart block". It sounds ominous and is easy to to confuse with blocked arteries. The correct term is AV block, meaning the electrical pathway from the artium to the ventricles is blocked and doesn't transmit pacing information. Complete just means that the pathway never works. The cause is usually can not be determined. It commonly the result of an infection, and rarely the result of heart attack, which explains how someone in good physical condition develops AV block. Fortunately this is one of the simplest malfunctions to deal with since the hearts natural pacemaker still paces the atrium properly in response to exercise. The pacemaker has two leads into the heart. One senses the contraction of the atrium and the pacemaker uses the information to send a pacing signal down the other lead to the ventricles. Set up properly the pacer activity is almost unnoticeable.
Where the problem happens is when the pacer is set to sense your body movement as in running and use it to set the heart rate. This is called Rate Response and can be turned off or on at the programmng session. Often the cardiologist doesn't bother to determine whether rate response is needed and leaves it on "just in case". The problem is that now you have a conflict between your natural pacemaker and the rate response. The can give some odd feeling pulses during changes in activity like starting or stopping heavy exercise.
The other problem is with the upper and lower limits. Something sounds strange with your resting HR of 120. For a person in good shape who can handle an upper limit of 170 I would expect your resting rate to be more like 55-60. If the lower limit is set to 120 it means that the pacer will take over and force extra beats to keep the heart from dropping to its natural resting rate.
Unless you have some other heart problem I would suggest that the pacer be set to DDD mode with limits at 55-170. I would suggest asking to have the pacemaker rep do the programming. Also ask for a copy of the pre and post programming printout. There are several of us here who can help interpret it for you.

And finally, having a pacemaker doesn't suck! It is a great little device that can restore an active lifestyle for many of us. I hiked at 13,000 ft in Colorado last summer and felt great.

Oh, one one more thing. Try to get used to some of the new sensations associated with pacing. The heart is very sensitive to emotional input and anxiety can cause the very symptoms that are bothering you.

best of luck,

frank

p.s.

by Tracey_E - 2008-07-14 11:07:11

if you'd like to chat at more length, I'd be happy to talk to you on im or by phone. tceller@gmail.com

me, too

by Tracey_E - 2008-07-14 11:07:13

Welcome to the club! It can be scary when you get a pacer so young, been there done that. :o) I was born with CHB and got a pacer at 27. I'm 41 now, on my third battery replacement and feel wonderful. It's easy to start imagining worse things are going on, and it takes time to get used to having it, but I hope you'll come to see it as a blessing as I do. Every day is a gift- if I'd been born the year my grandmother or even my mother was born, I would have died by now. Pacers virtually fix most CHB so we can have a normal, healthy, active lifestyle. Many people are not so fortunate, most diseases are not so easily and completely fixed.

If you're getting dizzy when exercising, you need to be reprogrammed. That's not done by the doctor, it's done by the manufacturer's rep. Get to know your reps, they will be your friend! As far as the doctor is concerned, the pacer will keep your heart from stopping so you're fine. Your rep can fine tune it so you can do virtually whatever you want without side effects. Ask to see your rep! And try to do it fairly quickly after an episode of getting dizzy so it's still in the pacer's memory, that makes it easier for them to pinpoint what needs tweaked. If your doctor doesn't get this, get a new doctor.

I've had dizziness issues several times over the years. There are a number of things that could be happening. None are serious!!! It can take a few tries to get the settings just right and figure out what is just right for you. Most pacer patients are not otherwise healthy and active so our settings are more complicated than most cases your doctor probably sees. I've had dizziness while working out that was caused by maxing out, another time I needed rate response turned off. I know it's hard, but try to take a deep breath, relax, and remind yourself that the worst is over, all that's left is fine-tuning the programming.

Hello

by meg22 - 2008-07-15 04:07:49

I too am a 32 yr old woman who just got a pacemaker in April. I had to have my settings adjusted a little bit. Your resting HR sounds really high mine was set at 60 and had to be raised to 70 during the day time. I also have been put on medication because my blood pressure is now low. Low BP was the reason I was dizzy and blurred vision. It took me bugging my doctor and saying over and over that I still didn;t feel right to get on the meds.

I started running again recently and I feel great when running as long as I took my BP meds.

Hope this helps a little bit and just know that it takes some getting use to

Same here!

by Mar - 2008-07-15 09:07:59

Hi there, I can totally relate to the fear side of things! I'm 32 too and have had my pacemaker for about 6 weeks. I was totally asymptomatic, only felt a little bit tired, turned out I had complete AV block.

I know EXACTLY what you mean by thinking there's something else wrong. I thought I'd feel on top of the world straight after getting the PM but it takes a while (we did have something shoved into our hearts after all!). Reading what all the lovely experienced folk have to say here has really put my mind at ease. Especially reading that it takes a bit of tweeking to get the settings just right. Makes perfect sense, given no two people have the exact same responsive rate to exercise etc. The fact that it has to be taylor made to fit gives me far more confidence than if it was just plug and go!

I'm sure all will be absolutely fine but don't be afraid to feel afriad, it's completely 100% absolutely normal! And ask your doc loads of questions, it's what they're there for.

take care
Mar

exact same situation

by Brooklynn - 2008-07-16 01:07:44

My defibrilllator was implanted a couple months ago without any warning whatsoever. I'm a healthy 30 year old with no genetic predisposition. My dizzy spells and anxiety were also chalked up to panic disorder and was being prescribed xanex by the boatload, even though I was convinced sonething else was going on. Listen to your body would be my advice.Sometimes the meds they put you on can make you feel dizzy as well, or if you are getting up to quickly. Can't really offer much advice, as I am new to this site myself, but good luck to you=)

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It is just over 10 years since a dual lead device was implanted for complete heart block. It has worked perfectly and I have traveled well near two million miles internationally since then.