I can't get an answer

I've had my Boston Scientific Duel Chamber PM for almost 2 months now. Sometime before the 6 week check up I began to feel my heart beating with a twinge or slight pain every time it beat.

This would go on for 15 to 20 seconds about 3 times a day. Some days are less and once in a while it doesn't happen at all.
I'm guessing it is when the PM is activating to stop the pauses.
During the checks it hasn't happened. I asked the EP and all I got was you must be sensitive to the wires. I have been released back to my cardio with my 1st appointment on Dec 1.

I have been told my two PM checks were perfect with the wires in a good place.

I can be sitting in my easy chair and it will do it. I can be driving and it will do it. I can be out to dinner and it will do it. I can be walking and it will do it. I don't know when it will do it. It gets my attention and it is annoying and scary.

Will this be for the rest of my life? Will it get longer and more often the older I get? Will this be what I feel all the time at some point?

I do still get some skips.

Any information will help and what should I tell my cardio?

Has anyone else here felt their PM working?



10 Comments

Amber

by RetCop - 2010-11-14 01:11:03

Thanks. Now why didn't I think of that? When I asked a rep at the check, I was told to talk to my EP. I'll see what a phone call will offer me.

feeling paecemaker

by makeuwell - 2010-11-14 01:11:18

I too have a Boston Scientific ICD. I feel it quite often. Fluttering and sometimes skipped beats. It was also pacing my abdomen for a while. You could see my abdomen beating from across the room. It was like I had continual hiccups. I dont no what your settings are but the reps came and reconfigured my settings. ie, redirected the amount of power to the three different leads. This helped a lot! But I do still feel the PM working. They told me that I too was very "in tune" with my body and might feel it. They also told me it would change if I gained or lost weight. But if the interrogation of the device shows nothing wrong then I would just have to ignore it. So I hope this helps some too.
Stacy

Stacy

by RetCop - 2010-11-14 02:11:55

Thanks. I just talked with a rep on the phone and was again told I had to talk to the doctor. Have you gotten use to it?

I only have two leads and no ICD. I too feel fluttering sometimes. I also feel some pounding sometimes.

I'm disappointed. I thought this would make everything wonderful. Geez

....

by RachelScholar - 2010-11-14 03:11:09

That used to happen to me often. I have a Medtronic Kappa 900. When I first got it I was 20 and my older and very grumpy doctor told me I was being sensitive and that I will get used to it. Of corse I was upset cause I felt the same things you do now.. I was thinking the same... I'm young, am I going to have this pain forever, that can't be right? But I did get used to it mostly...

Ask your EP to change your settings so that it doesnt "shock" so hard. I have had my settings changed so many times just for comfort reasons... It's your device and its 50/50... 50% you get used to it and 50% you have them change things till it feels better.
you will get used to it.... there are days that go by that I forget I even have one. good luck.

If the changing of your settings doesnt work and it still hurts and is upsetting you I suggest finding a doc that will listen to your problem not your PM report. :o)

Rachel

by RetCop - 2010-11-14 06:11:48

So how hard it shocks can be changed? Does that alter the settings I'm at as far as bpm? At least I'm getting some information as to what to say to them. How did my EP reach the conclusion about how hard it should shock? Would that come from the EP study?

I wonder why an EP would just ignore what I am saying!!!

Maybe my cardio will listen when I go to him. The EP seems to want to get rid of me back to a cardio.

voltage

by ambers - 2010-11-14 07:11:12

during the first 6-8 weeks they set your voltage higher to make sure everything is working for you. After they are certain everything is okay they will lower the settings so that your battery will last longer and this should help so you aren't feeling it.
Amber

Been There & Done That

by SMITTY - 2010-11-14 08:11:25


Hello RetCop,

There are lots of us that can say "been there and done that" to what you a experiencing. Unfortunately many of us can also say we got the same kind of response from our doctors or the people doing the checkups only slightly different words were used. I always figured they were really saying I don't know what in the hell is going on and anyway its your problem not mine so as soon as you walk out that door I'm not going to even think about it until I hear from you again.

Now for your questions:

"Will this be for the rest of my life?" Probably not, even if you can't get any help from the Dr and his staff. It could end tomorrow or it could last for months to come. (I was never able to predict mine.)

"Will it get longer and more often the older I get?" It may get longer but not necessarily because you get older, but because your pacemaker will be assisting your heart for longer periods of time. I should add here that based on what you say I totally agree with you that it is probably when the PM is activating to stop the pauses.

"Will this be what I feel all the time at some point?" While I doubt it will be forever, I think that is impossible to say because of changes that may be made in the PM settings for whatever reasons or even natural changes in your heart function.

You say "I have been told my two PM checks were perfect with the wires in a good place." Believe it or not I'm inclined to think they told you the absolute truth, but they didn't finish it. They should have included your pacemaker and wires are doing exactly what they are supposed to do. Therein is the rub because I think you need some changes in the PM settings.

Now what do you do? You will have to get the attention of that "sorry" EP or your cardiologist, or Boston Scientific or maybe even the administrators of the hospital. A nice quick easy way to do that is print out and send a copy of the message posted here to each of them letting each know who is getting a copy. Of course you will not make a lot of friends doing that. But think of it this way, if you purchased something from Sears or Walmart that gave you a totally different kind of problem but one just as bad would you keep quite?

As I told someone in a similar situation the other day, we the patients must never forget we are the customers. The EP in reality is nothing but a glorified salesman and deliveryman, Sure he has some very special training and skills to do his job but without him the hospital and Boston Scientific would have no place to sell their merchandise.
My feeling is this puts us in the unique position of being able to demand help when we need it and that EP's comment "you must be sensitive to the wires is not good enough."

With that I'll quit ranting.

I wish you the best,

Smitty

agreed

by ambers - 2010-11-14 10:11:22

Smitty, I can't agree more about being the customer! Another thing to consider when seeing your doctors would be what they get out of your visit. today my local paper published a list of doctors and the amount of money they earn from the drug companies. I was surprised to find some very familiar names on the list... you should be able to look online for the doctors in your area if you are in the US...the website is...www.projects.propublica.org/docdollars
This is not an all inclusive list because over 70 drug companies are not reporting.
might be worth checking it out...if your doctor is on the list then you may want to ask some different questions such as why they recommend certain products over others!
Amber

lead checks

by ambers - 2010-11-14 12:11:36

I also have a boston scientific PM... when I felt burning they told me it could be that the device checks the leads every so often. Boston scientific has a website and phone number on your device card for you to call with any questions related to your device.
hope it helps
Amber

I was having that

by sln - 2010-11-15 01:11:54

I was having sharp discomfort when my PM was working (I could tell that was what was happening because when I got the pain my heart rate would be exactly 80, the rate it was set to pace at if I had a drop in heart rate). It turned out it was set to pace the ventricle, which as we discovered wasn't really necessary. When they redid the settings to minimize the ventricular pacing, among other changes, the discomfort almost completely went away. It might be something else you could check.

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