cant get the setting right

Hi, am new to this site. I am a 58 year old female. Last year I had aortic valve replacement surgery, aortic repair, developed a blood clot , then had pacemaker installed all within 2 weeks. The pacemaker has been an emotional battle for me because I was not prepared for it, I am thin and it sticks out of the skin which is uncomfortable. I am not an athlete by any means but I do exercise almost daily and when its nice outside I like to take leisure bike rides. I started out with the normal pacemaker settings but kept going into 2 n 1 block, or as I prefer to called it "getting slammed". They kept adjusting the setting but the slamming kept on happening. They called in the reps (boston scientific) they set the top # to 160 and did some tweaking. I have had the strangest things happen since this setting. I wear an oximeter when I excersice so that I can give them as much details as I can to what is happening. On my eliptical I get slammed around the 140 range. I feel it first then I watch the oximeter slide down to the 70 range and stay there. If I stop for a few minutes it jumps back up into the 120 range. Last time I was bike riding I got 1.5 miles from home, pulse was at 186, and I felt like someone poured concrete all over me. They tested my oximeter and it is properly working. Today I did not get slammed while excersing but when I was walking up stairs I almost passed out. I just want to get on with my life and not have to keep dealing with this. Has anyone else had these problems and if so what did they do to get you on the right track. thanks

6 Comments

challenges

by Tracey_E - 2012-12-10 08:12:55

I'm so sorry you've had so many issues!! There is always an answer, but sometimes as you've discovered it can take a lot of time and a very patient technician/dr to get it straightened out. Been there, done that, though my problems weren't exactly like yours they were very similar.

A question first, do you know if you mostly pace atrial or ventricle?

Random thoughts/observations....

Have they put you on a treadmill in the office while hooked up to the pm computer? That has quickly solved several exercise issues for me. Instead of me trying to explain what happens, I ran for them and they watched. They tweaked, I ran again to see how it worked, they fine tuned. Much easier than trial and error over weeks!

(I can't tell if you're only talking about pulse that you got from the oximeter or O2 sat) Have they done a stress echo to see how your heart function holds up with exercise? If your pulse is good and your O2 saturation is down, that's not the pm.

when you were doing 186, you were beating on your own. Your pm won't pace you that high, all it can do it sit back and watch when you go fast on your own. If this is a common problem, a low dose beta blocker may help. I dragged my feet and procrastinated for a long time but it helped me a lot. My atrial rate would get up to 180+ but I'm totally dependent ventricle (av block) and it could only pace me up to 175 (my max) so my atria would be going a lot faster than my ventricles. With the beta blocker, I never get over 150 so that problem went away and I still feel good.

When your hr goes from 140 to 70 that's the pm putting you in an artificial block and you will feel AWFUL. Been there, done that, too. There are two things they might be able to adjust to help with that.

One is a safety setting, when the atria goes fast on its own the pm may think you are in afib so it suddenly paces the ventricles at half (70). If you have no history of afib, they should be able to simply turn this off.

The other thing that helped me was rate drop response. Sometimes I plummet on my own, the rate drop setting can prevent that. When it drops too quickly, the pm kicks in and paces atrial to keep my rate up.

This can be VERY frustrating but know that it's not that unusual and many of us have been there and come out doing great. Most drs don't get very many active patients so they don't always know what to do with us. Also, they like to make the changes in small increments rather than drastic, much easier to troubleshoot if it's still not right and safer for us. It sounds like you're not quite there yet but your dr and rep seem willing to work with it. Many don't so we are lucky that way. Stick with it and don't give up!! When you don't feel good, go back and go back and go back until it's right. Ask for the treadmill if they haven't done that yet, it really has been invaluable for me.

setting of pacemaker

by Yvvy - 2012-12-10 09:12:58

Thanks for taking the time to respond. I pace 13% in the atrial and 100% in the ventrical. I had the surgery done at one hospital and the dr told me to go back to the cardio dr at the other hospital. That hospital does not use the boston pm so I think they have a harder time knowing what to do so thats why they called in the rep. No one has said anything about putting me on the machine and watching me while I exercise. I feel this is something that should have been done awhile ago but they just said we will get it. I use to be able to do a 7 mile bike ride in 37 min. Since they put it up to this new setting it takes me now 58 min and the waited down feeling is overwhelming. I am on cardizem because of being an asthmatic they said they could not put me on a beta blocker. I feel I should be on a beta blocker as there are ones that won't affect the lungs. I decided to go back to the doc that put the pm in as he also is a Electrophysiology and they are more knowledgeable of my device. My o2 saturation level is always around 98 and my asthma is in control. The rep told me last time that my pm thinks I am in artial attack acardia most of the time. Why?? Just not happy with the answers I am getting and trust me I do go back and back. I have a treadmill and eliptical in my home and the treadmill I do fine on, but the eliptical is the one that gets me indoors. I have never had a stress echo done, just regular echos and only one since the surgery but they said it was OK. I am hoping for the best once I get to see the new doc. I will bring up about the exercise testing. Thanks again

Atrial Tachycardia

by TRL28 - 2012-12-10 10:12:17

I had my pacer placed 10/12/12 and am having the same issues as you are. I have a history of asthma also, so I've been placed on verapamil 240 mg twice daily with minimal side effects... slight headache occasionally. Since the dose change I've been able to do my day to day activities without too many problems but exercising is still an issue along with showering/getting ready in the mornings. I too have a boston scientific pacer and even the reps seem stumped. I've mentioned Tracey's above setting suggestions to the pacer nurse, however they told me that they didn't think that either would be benaficial but didn't give me any other suggestions, so I don't know if she just thought I was over stepping my boundaries or what. Definately keep me updated on what you find out and if anything helps improve the "hitting a brick wall" as I call it, effect. Try to keep your head up babe and if you need to just vent, I'm here.
Tiffany

a-tach

by Tracey_E - 2012-12-10 10:12:26

It does sound like a low dose beta blocker may be helpful. Go back to the first dr, sounds like the new one doesn't listen very well. EP's are always a better choice than a regular cardiologist. Reps can be wonderful or clueless, unfortunately.

Sometimes the heart just races. Sometimes it's aggravated from the pm but eventually settles down. Sometimes it always raced but we were in block so we didn't feel it, that's how it was with me. If it's out of control and meds don't help and/or it's dangerously high, they can ablate. But meds and settings are the place to start.

Off the wall question, have you tried completely eliminating caffeine? Some are more sensitive than others and even a tiny bit can cause racing.

Tiffany, there are a lot of nurses out there that don't know what they heck they're talking about!! They are only taught to read the report and see malfunctions, that's it. Well, fine tuning settings isn't a malfunction so they don't know how to handle it. Theoretically the reps are the ones who know the device inside and out but some are better than others. Try to get past the nurse and ask the dr your same questions. I've found that the nurses will say they asked the dr when actually they're giving out the same answers they tell everyone.

I hope both of you get answers soon!!! It's frustrating when you know there's an answer out there but no one is finding it.

Settings

by Yvvy - 2012-12-10 11:12:28

Thanks Tiffany and Tracey for giving feedback. Tracey I use no caffeine. I am very sensitive to any type of upper whether in food or meds. I just want to be able to carry on with life and not feel so vulnerable all the time. I know my life has a "new normal now" but I don't think this is what they meant. My appt was for the end of month but got call that they had an opening for tomorrow. So hopefully I will get some results soon. I hope they booked me a long appt 😀. Will give an update tomorrow.

Doctor appt

by Yvvy - 2012-12-16 02:12:01

Just an update...went to doctor was a little concerned when they brought in the same rep that I had from the other hospital. But then the EP doc came in and told him to fix the fall rate so when I hit the block my pulse rate wouldn't slide down to lowest in 5 seconds. I told him it is so frustrating to keep detail data when i hit the wall and the rep tells me that the pm readings dont show it. So doc scheduled a treadmill test right after Christmas with him in room and the pacemaker machine on me. Then if they don't see anything I still am experiencing it, then they will put a halter heart monitor on me. I feel that I will get some answers now. Fingers crossed!

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