At wits end!!!

Hi Everyone,

I have to say that my doctor and I are at a complete loss with my heart issues, this pacemaker, and its settings. I had it implanted on June 4, 2009 and we still have not found the proper settings and I continue to feel bad and I am getting worse.

After waiting 4 weeks after implantation I began riding my bicycle again (I am a competitive cyclist) only to find out that I had zero endurance and my heart rate was all over the place, I explained this to the doctor and he changed the settings to max 150. That didn't help at all. He then changed it to max 130 and he shut off the rate response, the minimum is 60 (which is WAY too high for me but he refuses to lower it). The next day I went riding and I can honestly say I have never felt so bad in all my life! I rode 3 miles and was dying, I could not go up an incline that is equivalent to a ~3% grade! He then changed it again to max 150 and turned the rate response back on. Again I felt terrible and I started to feel palpitations, or flutters. I went to see another doctor while I was in New York and he changed yet again to max 180 (the highest for the Medtronic Versa pacemaker I have) and I felt ok for a little while then the palpitations came back. I went back to my doctor and told him about what the doc in NY did and that I was experiencing the flutters, when he interrogated the pacemaker he discovered that I had 7 episodes of tachycardia but very short, under a minute each. He then once again lowered the limits to 150 and put me on Bisoprolol, it did absolutely nothing for me but give me massive headaches, I continued with this fluttering feeling I get whenever I do anything. At the next appointment he took me off the meds. Now I just went riding again and according to my heart rate monitor this is what happened: while descending a very large hill where I was just coasting, doing nothing my heart rate soared to 150 but it didn't feel irregular, as soon as I started pedaling again the heart rate went down, to 138, then when it was time to climb again my heart rate, instead of increasing, decreased! First to 135, then 130, then 128. The harder I pedaled the lower the heart rate became and very irregular feeling,, beating very hard and erratically. I only went 12 miles and I felt like I did 190. I can't even walk up the stairs without getting this feeling or being out of breath. I can sprint up the stairs and I feel better than when I walk. I don't understand.

The doctor had mentioned once that I may still have a small problem in my heart but he wouldn't risk going in again for a 4th ablation. I know that I can't live like this, that's for sure. I would really like to ride my bike and start training again. I'd like to be able to play with my 21 month old daughter and not feel so terrible. Anyone have any ideas?

Thanks Everyone,
Todd

7 Comments

tests

by Tracey_E - 2009-11-09 04:11:52

Has he done any testing or just changed meds and settings? A holter monitor or stress test could give them some answers. I've had problems a few times working out, when the initial setting changes didn't fix it they had me get on the treadmill while hooked up to the pm computer so they could see exactly what happens when I exert.

Keep in mind that the monitor may not be accurate. Pm's tend to mess with them, either missing beats due to interference or picking up the pm spikes as extra beats.

Good luck getting it straightened out!

tests and recorder

by MonteCristo - 2009-11-09 05:11:03

Thank you both, TraceyE and ppt.

TraceyE - I haven't had a test done since I was implanted and I agree with you that we should do some sort of testing. I am scheduled for an appt tomorrow where I am going to see if I can bring in my bicycle and trainer and have him do a stress test, it won't be the same thing as if I were on the road but it's better than nothing.

ppt - my cardiologist is and EP and, unfortunately, he is one of only 2 here in Costa Rica. When I went to New York (that's where I am from) I went to see an excellent cardio/EP, he gave me an event recorder for 30 days, the problem with that was that it was very hard to capture anything. It was different from what you had. Every time I felt an episode I was supposed to push the button so it would record and after 5 recorded episodes I had to call the clinic and have the recorder downloaded over the phone. I was told not to record the "small" things, only when I felt like I was having tachycardia. It was very, very hard to capture it and although I did experience flutters, and 7 episodes of tachy I was unable to record it. It sounds like the one you had required no intervention on your part and that it recorded very much like a Holter Monitor but for 30 days. That would be great for me.

If I can't get this resolved down here I am going back to NY in december, maybe the doctor there can try again.

Thanks again guys!!
Todd

Event Recorder

by ppt - 2009-11-09 05:11:05

My settings were not right until approx 8-9 months after implantation. It was awful. I could not walk across a room.

The Cardiologist referred me to an EP - so 1st question is are you seeing an EP? If not you probably need to think about that.

The EP ordered up an Event Recorder. This is different from a Holter Monitor. A Holter Monitor records 24 hours of activity - all activity. I think there are different lengths of time for a Holter Monitor but not sure - like 24 hours, 48 hours etc. The Event Recorder I wore for a month. It records anomalies (anomalies defined as outside the range of EPs prescription) and there is a series of touch screens that you can use when you feel as if an Event (whatever you think is not normal) is occurring. All data from Event Recorder is wirelessly transmitted to base station - and EP receives a report everyday. WOW - it was amazing what my EP saw and then we started on fixing settings. I am not perfectly back but WOW on a scale of 1 to 10 I was a 3 or 4 when I went to EP and I would say I am an 8 or 8.5 now with endurance and strength continuing to grow. Hope this helps you. Good luck !!

same experience

by Tracie - 2009-11-09 06:11:08

I, too, am a competitive athlete (Ironman), so I understand your frustration with not being able to ride/train like before. I was implanted with a PM in Mar of 08. I, too, had some problems adjusting to the PM. My doctor didn't understand how I felt it was affecting my training and I had to just talk with him and convince him that biking, etc was extremely important to me (as was being an active mom with my two kids) and we HAD to work out something. In the end, my max is set to 170 and my lowest is 50 (I wanted it lower). I got him to get it there when I showed him my resting heartrate for several weeks. He realized I had lower rhr than most people and was willing to lower it. When it was up too high, I was getting too many heart palps and felt terrible. My body was not used to that high of a heart rate.
So, my advice to you: keep track of your resting heart rate, training heart rate and your max (VO2 max, too maybe) to show him that your are more fit than his other patients (most likely, anyway).

Good luck and be safe out on your bike! :)
Tracie

my experience

by sam78 - 2009-11-09 09:11:25

Hi Monte. I had to look back at some of your old posts to see what it is you have the pacemaker for. If I am understanding correcting it is because you have 3 degree heart block. I have only had my pacemaker since June, but I can tell you that I similar problems as you. I would definetely recommend you turn the rate response off. It sounds like you have a fully functioning SA node and that was found to be some of my problems and I was having similar symptoms as you. If you SA node works good then there is no need for rate response. Also, I too was having problems with my heart rate decreasing when it should have been going up. We were finally able to catch it on the monitor (only after running the stairs and throwing on the pacemaker interrogater to watch it). What was happening to me was when I met my max heart rate, I would drop beats which would give me an irregular low heart rate as the cardiologist said "your pacemaker is getting confused". My guess is if you are on a hard conditioner you probably go higher than 150. I would see if you could go back to the 180 and turn rate response off and try that again. I would lay money on the fact that you would feel better at that then you would 130 or 150. Just my experience and thoughts.

still with problems after rate response is shut off

by MonteCristo - 2009-11-11 01:11:23

Hi,

Well I went to the doctor yesterday. I explained to him my symptoms and he agreed to shut off the rate response. He told me to go riding today and to go see him on thursday. In general I feel a bit better BUT when I went riding I had new problems. At first I felt good I didn't feel any palpitations or flutters but I also noticed that my heart rate would not go above 60 (the programmed minimum). This turned out to hurt a lot. Where I live there is nothing flat, you're either going up or down. When I started to climb my heart rate still did not go up, it just stayed at 60 and although I didn't feel any flutters or palps. it took its toll on me real fast. I was out of breath and my heart was pounding (slowly). In total I rode 3.3 miles and today was the first time in 9 years that I had to get off my bike to walk up a hill ( a small one at that) and I was exhausted.

Does this mean that my SA node is shot and that I will need the rate response on? I can't live with that feeling, and obviously I can't live without it.

Before I had any ablations I would sometimes experience this same problem. I would be riding very hard (usually up hill) and feel "ok", breathing hard, working hard, etc... But when I looked down at the heart rate monitor my heart rate would only be at ~128 and it should have been much higher. It didn't last long and would only occur once in a while. I did record it once on a Holter Monitor and the doctor said that I could have another type of arrhythmia and that it could be dangerous. Unfortunately going back to this doctor is not an option. Does anyone know of any type of arrhythmia like this that is dangerous and could be fixed through an ablation or other procedure?

Francisco:
my normal resting heart rate was ~42 but my doc refuses to lower it and seeing that I am having issues still I don't think he will do it until I feel better.

Sam78:
My doc said he wanted to first try shutting off the rate response, then later we could try increasing the max. I agree 100% that I need the maximum increased to 180 and that I would feel better. When I was in New York the doctor there increased bot features to 180 and I felt good, it was only when I came back here to my doc and he discovered 7 very short episodes of tachycardia that he lowered it again and once again I feel bad.

Any more suggestions as I am going back tomorrow?

Thanks everyone, I really appreciate the help.
Todd

New here and wondering???

by FirstDuely - 2010-01-05 11:01:08

Sure wish this discussion would have continued. I am also a cyclist (Hey Roadbiker!! I live down in Hemet and still do lots of riding) and would like to be able to push past the wall I feel while riding. I've had 8 or 9 pacers over 23 plus years and have always been very active. I keep pestering my cardiodoc to improve things so I can stay active.

I hope Todd has had an improvement since his last post but I am really interested in his results and I would really like to see somewhere the data settings for a pacemaker that makes a person be a normal athlete. From what I have read above you all have just touched the surface in trying to achieve something I have worked on for so long and STILL don't have it just right.
I rode about 45 miles today, 27 yesterday and 28 Monday trying to get back in shape. Some weeks I do 125 to 150 or more miles but Christmas and cold meant no riding for 10 days. Now I am again trying to be able to "hang" with the other riders in my group. I just hit a wall. I have been experiencing palps since before Thanksgiving, ironically right after a pacer clinic session with my doctor. I have also had flu-like symptoms and pre-beats (palps?) like I read above, too.
So things are not completely right.

AGAIN, it would be really interesting to hear from someone athletic who had their pm dialed in and be able to see the settings they have and I'm sure that would help all of us "feel better"......

Just my 2 cents, adjusted for my experience of 24 (end of March) years with a dual chambered, activity regulated pacer.

You know you're wired when...

You have an excuse for being a couch potato.

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