Need an opinion

I have a question. Has anyone ever heard of a pacemaker being set "on the wrong speed?" Mine was installed in July 2010 after a fainting episode. My heart was not beating fast enough. Since that time, I have been BEYOND tired. I have struggled almost a year now. It is set to kick in when my heart goes below 60 beats. I am still young (only 56) and active. Today a new doctor told me that maybe the pacer is not set high enough to keep up with my activities. I go 5/2/11 for a check of pacer's workings. I want my old life back!!! ANy suggestions?

11 Comments

Maybe Upper Limit Pacing is too low

by SaraTB - 2011-04-28 08:04:27

I know others with more knowledge than me will add their thoughts to this, but it sounds to me as though the upper limit is set too low - thus not permitting your heart rate to increase when you are being active and need a faster rate to pump the oxygen around. When my first PM was implanted, I had to go back several times to my EP to have the settings 'tweaked' until I was able to get back to my normal activity level. The initial setting is usually a factory default one, and generally needs adjusting later once you and your EP can see what your individual needs are, based on your normal activity level.

This isn't that unusual, although I suspect it's fairly unusual for it to have gone on so long before someone questioned it. Keep telling your new doctor how you feel, and if next week's adjustments don't make things completely right, keep going back and discussing it: it took about 6 months before mine was set up in the best way.
Good luck
Sara

common

by Tracey_E - 2011-04-28 11:04:52

It's not wrong, it sounds like it's just not fine tuned for you yet. It's common to start them off with factory settings and only adjust if you need it. Make sure you tell them at the next check what's going on! And if you don't feel better, call rather than wait until the next check. It's common to take a few tries to get it just right so don't stress if tweaking it once isn't enough. They usually prefer small changes rather than drastic ones.

Why did you get it? Do you know if you're pacing atrial or ventricle? There are a lot of reasons why the heart can go too slow and they all have different fixes.

Rate Response

by PMtech8509 - 2011-04-29 05:04:10

It sounds like you need the Rate response settings adjusted on your pacemaker. Depending on the exact model and whether or not it is a single or dual chamber, your EP, PM Tech or PM Rep can adjust your rate respone. Rate responsive pacing allows the device to sense your physical activity and respond appropriately by increasing or decreasing the base pacing rate via rate response algorithms. This is crucial for active patient, especially if you are paced alot. Hope this helps!

Common

by Sally Fe - 2011-04-29 12:04:55

I got the pacer because on 6/13/10 I fainted for the 6th time in 2 years. I fell over desk chair, hit my head, bled like crazy and was unconsious for an hour. Broke 4 ribs. Spent week in hospital. Sent home wearing a monitor. July 4th weekend monitor company called and said my heart had stopped several times and wanted to know if I was okay or if I fainted again. Got pacer 7/16/10. Spent rest of summer in a fog trying to recover. Had trouble breathing, legs ached, back HURT from broken ribs. On 9/26/10 went back to hospital with what turned out to be a blood clot in lung. Spent another week there and was sent home with Coumadin and more Lovonox shots. INR results have not been the same two weeks in a row since September. Belly still knotty and stained from Lovonox shots. In 2002 I had an ablation because heart beating too fast. In 2010 heart now beating too slow. It has been quite a ride.

TraceyE

by Sally Fe - 2011-04-30 03:04:38

Only med I am on currently is Coumadin. Stinking stuff. I know I needed it for the clot but I have been promised that Monday 5/2 the doctor will review and I hope beyond all hope that he will take me off it and let me take baby asprin. THE EXTREME FATIGUE started when Coumadin started. I feel like an engine not knocking on all eight cylinders. I do not know what you mean by atrial and ventricular rates. How would I know? I was told I faint because my heart rate drops. I guess I need to ask more questions and to find out exactly what happened to me. I am so thankful for this site and for all of you taking the time to answer my posts.

Sally Fe

PMtech8509

by Sally Fe - 2011-04-30 08:04:57

I have a Medtronic Model ADDR01, Serial Number NWB487403H. When I go Monday to have it checked, I tell the tec I need the Rate response setting adjusted? You mean it is that simple? I've suffered a year telling them how tired I am. I don't want to insult cardiologist but he is not listening to me. I know my body better than anyone and I need more energy. It is set on 60 beats and when I go below that mark the pacer kicks in. I am not a little old lady sitting knitting all day. I am very active, work full time and need a heart to keep up with my pace. THANK YOU for your help.

Sally Fe

rate response

by Tracey_E - 2011-04-30 09:04:01

Rate response is only the problem if your problem is primarily atrial and your rate doesn't get up high enough on its own when you exercise. RR senses movement and raises your rate for you. In my case, my atrial rate is normal but the signal doesn't get through to the ventricle so I only pace ventricle. RR is turned off because it would compete with my own atrial rate and cause problems. So, adjusting rr may be the answer, or it may not. It depends why your heart is beating too slowly- does the atria drop off at random, does not not jump up with actiivty or does it beat normally but the signal gets blocked and doesn't make it to the ventricle. Three problems, three different answers.

meds

by Tracey_E - 2011-04-30 09:04:48

Are you on any? A lot of heart meds can cause extreme fatigue.

how the heart beats

by Tracey_E - 2011-05-01 09:05:45

This is the website for St Judes. It has some terrific short videos on how the heart beats and how the pm works, much better than I could explain
http://health.sjm.com/arrhythmia-answers.aspx

The heart has 4 chambers so a heartbeat is actually 4 chambers (left and right atria, left and right ventricle) working together to contract. The ventricular chamber makes the strong contraction we feel as our pulse.

When the heart works normally, all 4 chambers beat in sync. Most of us have a short circuit somewhere so it's possible for our atria to be beating at a different rate from our ventricle. The pm works by completing the circuit, making sure the ventricles beat every time the atria does (ventricular pacing) and that the atria doesn't slow down too much (atrial pacing). This is why we have two leads, atrial and ventricular. Most of us use one significantly more than the other. We all have a slow hr to get the pm, but there are different causes of that slow hr, and those different causes have different solutions. If you ask for a copy of the pm report, it will say how much you are pacing each lead and we can help you understand the numbers on it. Hope that helps!

That simple?

by Pookie - 2011-05-02 04:05:12

Hi Sally:)

Yes, it can be that simple.

I was profoundly exhausted for almost 6 yrs after receiving my pacemaker to the point I wanted it taken out!!!!!!!

Long story short - I finally got to be seen by an EP and a new Medtronic Rep and between those 2 and the PM Tech they decided to turn OFF my Optimization setting, which is part of the Rate Response feature. For most pacemaker patients, having the Optimization setting ON is perfectly fine, but for some (less than 2%) it makes a world of difference when it is turned OFF.

I finally got my life back, but sometimes it still makes me angry that I lost so many years (as I was practically housebound) all because of ONE little setting. But then I look at it this way: now when the next EXHAUSTED pacemaker patient walks into the clinic, perhaps the staff will remember my case.

It is totally amazing what one little adjustment can do!!!!

Take care,
Pookie

had same thing happen

by bmom91 - 2011-05-02 08:05:17

I am on my second pacer been paced for 9 years and finally had my rate response turned on. I recently changed cardiologist because first one just thought I was "deconditioned" and thats why I was tired all the time. One visit with new cardiologist and pacer tech and they tell me oh your rate response has never been turned on lets turn it on and see if that helps. So glad I kept on the doctors about being tired because finally feel like a 40 year old and not a 90 year old! I hope more pacer patients read our post because there is life after pacer!

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