What to do

I am 50 YO male and a father of two beautiful girls 2 and 4. I was diagnosed with Bradycardia on 1/31/09. I was having light headed episodes while driving and thought it was neurological or my high stress job. Episodes were due to toprol xl, a beta blocker that I was taking because I had slightly elevated BP (>130). Off meds, had cath work done, heart and pipes are clean. Have worn several HOLTER monitors and event recorders. BPM decent during the day ( >50) while sitting at work, higher (60-75) when moving around, but goes down to an average of 44-45 at night while sleeping or when I lay flat. Can exercise well, getting BPM > 140-150 for 30 minutes at gym during cardio, good recovery rate. After Cath work, EP came in and said she had a spot for me the next day, I resisted and wanted to think about it. After wearing 4 HOLTER's, she stated that my average BPM was 50 or > so no need for a PM @ this time. She stated that my symptons will dictate whether I need a PM. My concern is that my BPM will get so low that my heart will stop in my sleep. Where is the cut off for this? Should I stop fooling around and get a PM? After reading some of the posts here I am kind of scared.

8 Comments

Thanks so much

by Bradyman - 2009-04-28 04:04:24

They are going with a 2 lead configuration. I have a call into a medtronic rep this afternoon to get the low down. I have just been feeling bad the last couple of days and trying to put this off hoping it will get better thru working out etc.... Your words are certainly encouraging and bringing me around. What activities are you prohibited from? Do the stories I read in this forum unusual? How does the PM improve your life? I have so many questions and I don't want to burn anyone out from asking. I know my EP is frustrated with me and she is the best in Texas Medical Center which is saying something. Its just that in todays medicine, they have a toolbox for an issue, thats it. You get your alloted 15 minutes prior to a decision because they are so busy. Then you have to ferret out information on your own, which if published on the web, and usually it is not always good. I really appreciate any advice I can get.

when

by Tracey_E - 2009-04-28 07:04:02

Bradycardia is simply a low heart rate. It's more a symptom than a diagnosis. Did they mention Sick Sinus Syndrome or AV block?

SSS is when your sinus rhythm (atria) sometimes drops off at rest but it picks up normally with exercise.

AV block is when the atria beats normally but sometimes the signal doesn't get through the av node in the ventricles and the hr drops off. Then the signal gets through again and your heart beats normally.

A pm can fix both of these easily. With SSS, it makes sure you never get below the set rate, usually 50 or 60. With AV block, the pm simply completes the circuit so the ventricles always get the message from the atria and your heart beats normally. Medications will not fix either of these.

It's time to get the pm when you are either unsafe or symptomatic. 50's is not generally considered unsafe so I agree with your doctor that you need to look at the symptoms. It won't stop in your sleep in the 50's, probably not in the 40's or even the 30's. The biggest concern isn't it stopping but robbing your organs of oxygen every time it drops. When your hr drops, it does damage you don't feel directly. And of course you don't feel so good when it drops!

Two reasons why I think you should think about getting it sooner rather than later. Just my opinion! One, you have symptoms. Do you want to pass out while driving your kids? It starts with dizziness, the next progression is passing out. That may never happen, but is it a chance you want to take?

Second, my own experience. I was born with an av block and my hr never went above 45. Mine isn't a partial block but what they call 3rd degree or complete block- that signal never gets through. I got by just fine and was told the same as you- to get the pm when it dropped to unsafe levels or when I was symptomatic. My hr was in the 20's when I was admitted for emergency surgery at age 27. It dropped off so quickly that I was on the verge of cardiac arrest before I realized there was a problem. I knew I'd eventually need a pm, I knew my hr had dropped, and still I was amused by blue fingernails rather than scared. It's almost like being drunk. Fortunately I had the sense to call my cardiologist. Will it happen like that with you? Probably not. Could it? Maybe.

In hindsight, I wish my doctor had encouraged me to get it sooner rather than taking the conservative approach and waiting for me to ask for it. I waited too long and almost paid the price with my life. If I'd known how good I was going to feel and how easy the surgery was, I would have done it years sooner.

Another thought... how long had you been off the toprol before all of the tests? Toprol is a betablocker, which means it keeps your hr from going up. It's generally used to slow down a fast hr. If you had an undiagnosed av block, which is not uncommon, betablockers might have made you symptomatic. Have you had symptoms since you got it out of your system? If you've been ok since then, you might want to just watch for now.

If you have any questions about the surgery or living with a pm, please ask! It's nothing any of us asked for but it's not awful either. I am on my 4th pm now and feel terrific. It's a very minor inconvenience, a small price to pay to know my problems are fixed and my kids will have their mom around for a long time.

questions are ok!

by Tracey_E - 2009-04-28 07:04:42

Just keep asking, we don't mind! We can take this to private message if you prefer, or email or instant message or even the phone if you'd like. I've been there, I don't mind talking you through it.

Working out is not going to get you through it, sorry to say. If your heart isn't going fast enough, working it harder isn't going to make it work faster.

Prohibited... officially by my doctor? Nothing other than arc welding and mri's because we can't be near big magnets. Oh! And I can never work in a junkyard near those big magnets that pick up the cars, broke my heart I'm tellin ya, lol. Some doctors say no tackle football or karate but there are guards you can get to protect the pm if you want to do that.

Are the stories here unusual? Yep. Not unheard of and as with any surgery it's not without risks, but much of what you see here is extreme cases, not the norm.

How does it improve your life? Everyone is different. For me, it means I can get a good workout without getting dizzy. I used to mostly sit around and read when I visited my parents who live at 7500 ft., I had no tolerance for altitude. Now, I ski and snowmobile in winter, hike and go horseback riding or biking in summer.

Definitely don't forget that everything you read on the web is not gospel! I'm not a professional either, no one here is. I can only tell you what I know from experience and pestering my doctors and reps over a lot of years. I'm one of those annoying patients who won't leave until I understand what's going on with my body. They know me well by now and respect that, I usually don't even have to ask anymore. Even if they had a problem with it, I would not apologize for asking a lot of questions- it's come in handy a time or two because most docs in other specialties don't have a clue what's wrong with my heart or how a pm works, this was one afternoon in med school years ago for them. I usually know more than they do. It's my body, so it's up to me to stay informed.

In case you didn't know, Medtronic is probably the biggest mfr of pm's. There are a lot of them around here! I've got a St Judes.

Please don't hold back if you have more questions. Whatever it takes to get you comfortable with this.

to pm or not to pm...

by ShadowWeaver - 2009-04-28 09:04:50

One of the things to keep in mind when deciding if you should get the PM now or later is what affect it will have on your life. For the most part, unless your lifestyle includes taking hits to your chest (like in martial arts) it doesn't seem it would negatively impact you much but like Tracey said, it could positively impact you and help you to avoid the passing out episodes. I have SSS with A-Fib and my heart rate would drop as I worked out and then sky-rocket later. Mine went down to 12 bpm in my sleep when they told me I needed the PM. Since having it (about 4 weeks now) physically I am feeling much better. I am no longer passing out and my chest doesn't hurt all the time from the tachy times. There is a normal depression that follows having a pm installed, so be ready for that, but unless your livestyle includes taking hits to the chest, I would get it sooner rather then later. The procedure is very simple and you go home either that day or the next depending on the doc and how everything goes.

Let us know how things work out. Don't be afraid to ask any questions on here that you have or just to express your concerns, we have all been through it and are here to help.

Michael

Bradyman

by Bradyman - 2009-04-28 10:04:35

thanks to all for replying, I really appreciate it as I am scared to death. I have SSS and not AV block. I am concerned about pulling out the leads. I have read horror stories on this site and others regarding implants.
My concern is what is safe for a HR at night? I have asked my cardio and EP and not getting any answers. As for physical activity, can you lift weights? My EP said I shouldn't lift 35 pounds over my head and I love to toss my 4 yo around in the pool.

TraceyE. I wore 3 of the HOLTERS after coming off Toprol and it improved my BPM by maybe 3-5. What other side effects from Brady should I be experiencing? Does anybody have a recommendation for a 2 lead product?
How can I type more on this site w/o getting cut off?

horror stories

by Tracey_E - 2009-04-28 11:04:05

Not sure why it's cutting you off. I type books :o) What is it doing when you try to type more?

Main symptoms are dizziness, shortness of breath, getting tired too quickly, overall lack of energy, maybe chest pain and syncope if it gets too low.

They can't tell you a number that's safe because we're all different. If it's under 60, they label it bradycardia. There is no one number that's safe for everyone. 50's is generally safe. 30's is not safe, though occasionally you'll see someone here with a hr that low who says they feel ok. It's hard to say where to draw the line in between because other factors are involved- your overall health, how strongly the heart beats, if you have any blockages, if you're overweight. One size does not fit all.

It is actually quite rare to pull out a lead, or even to have complications. Keep in mind that for every one person who has a problem and comes here looking for answers, there are hundreds, probably thousands, of people who never have a problem, and therefore no reason to come looking for a place like this. Don't consider what you see here to be the norm, we're mostly a collection of exceptions to the rules. I've had 3 replacements and no bad experiences so far.

Leads grow into place within about 6 weeks, scar tissue forms around it and anchors them in. After that, it's extremely rare to have problems with them. The way to prevent problems the first six weeks is not lift any weight over a few pounds with your left arm (assuming you get it on the left, most do) and not raise your left arm higher than shoulder height. They may send you home from the hospital with a sling for the first day or two, that helps us remember not to use the arm.

After the six weeks, anything goes! I toss kids and I lift weights, hike, ski, whatever I want. The only thing they usually tell us to avoid is contact sports like football and karate, where you're likely to take a hit directly to the pm.

What kind is best to get is going to be up to your doctor. Really, they're all good and going to fix your problem. Most doctors have relationships with the reps and that's how they choose what you'll get. I consider my manufacturers rep to be as important as my hardware, they are the ones that usually do the programming. All pm's are good, a great rep is priceless.

Sometimes they go with one lead for SSS. Push for 2 if they bring it up. You may never need the second one but it gives them data and it's no more to put in both than it is to do just one. Better to have it and not need it than need it later and not have it.

Did it all start with the BP treatment?

by ElectricFrank - 2009-04-29 11:04:09

The thing that stood out for me was being given a beta blocker for a BP that was only slightly >130. Until recently that wasn't even considered hypertension until the drug companies saw $$ in it. Are you sure that wasn't the cause of the earlier light headed incidents?

It is extremely unlikely that your heart is going to just slow down and stop during sleep. The night before I had my pacer implant my HR was down to 26BPM and I could still stand up without passing out. The numbers are different for those of us that are in good shape.

It sounds like they have checked you out pretty thoroughly what with several monitors etc. My suggestion is get off the beta blockers, stop worrying, and enjoy those two wonderful kids!

frank

Passing Out

by ShadowWeaver - 2009-04-30 03:04:10

Another thing is that you not only can pass out from your heart beating too slowly, but also from it beating to fast. I have never passed out due to my heart going to slow, but have passed out several times from it going to fast and entering A-Fib (where it flutters instead of pumps so not enough blood makes it to the brain).

Before I got my pacemaker, I didn't realize how much I was hurting day to day due to my heart going to slow. I have been in martial arts for 20 years and I have a very high pain tolerance and so I just didn't realize how much it was slowing me down. After the pacemaker, I feel much better and I am not having to slow down all the time. I still take it easy due to my a-fib (they haven't got that all the way under control yet) but am hopeful that they will get that under control soon. However, even with the a-fib, having the pacemaker I now feel much better. You may not even realize at this time how much your slow heart rate is causing you problems. If it has come on slowly, you may have just adapted as time went by. You will probably be amazed at how much more you can do with the pacemaker.

By the way, I have a Medtronic Enrhythm so I guess that will make us brothers in pacer. lol With SSS, the two lead is better because often when your heart rate does jump high, you not only enter into A-Fib but SVT (super ventricular tachycardia). The second lead helps the pacemaker to also pace the ventricles if needed making sure that blood continues to pump to your brain. Doing so helps to prevent you from passing out due to your heart rate going to fast (I haven't passed out once since having my PM and I use to pass out at least a couple times a week).

Make sure with the two lead PM that the PM has MVP (managed ventricular pacing). MVP monitors the ventricles and only paces them if needed (if the arrhythmia can't be corrected by pacing the atria themselves). The more that the PM has to pace the ventricles, the worse, so the MVP helps. On my last PM interrogation my atria were being paced 19% of the time and my ventricles were being paced only about 8% of the time.

Never feel like you are asking too many questions. Like I said before, we have all been through it and we understand that you have many questions. Like TracyE said, it is your body, make sure you know what is going on as best you can. We aren't experts here, but we are people who actually understand what you are going through.

You know you're wired when...

Your life has spark.

Member Quotes

I, too, am feeling tons better since my implant.