6 months later and still not feeling well

This is my first post.
In May 2011 I received a Medtronic Adapta 2 lead pacemaker after being diagnosed with trifascicular block. My only symptom was that I blacked out at home.
Within 5 days of receiving the PM I started experiencing dizziness and nausia. Other symptoms include shortness of breath when climbing stairs or lifting heavy objects and fluttering in my chest.
This has been going on intermitantly ever since. I can go 2 weeks or more with very few symptoms and then have a few days or weeks when I feel terrible most of the time.
I saw the internist who diagnosed my condition last week. He listed attentively to my list of symptoms, check me over and then downloaded data from my PM. He told me everything was fine and the PM was functioning as intended. When I pressed him on why I was having these symptoms he responded that I had to realize that my life was different now and I had to adjust my lifestyle. I have a a hard time accepting this as the same doc told me that I wouldnt even know I had a PM or I would feel even better after having it implanted.
He decided I should see a doctor employed by Medtronic and I have an appoitment next week.
Any advice on how to get some satisfaction would be greatly appreciated.

9 Comments

PM Settings

by SMITTY - 2011-11-29 06:11:07

Hello,

Welcome to the Pacemaker Club.

Due to the fact that your problem started shortly after you got the PM, I agree with Cabg Patch that it sounds like your PM just may be the culprit. Now for a few other comments.

First, thing I suggest is that you understand that the Medtronic rep may or may not be a dr. I've seen at least a half dozen since I got my first Medtronic PM 11 years ago and none of them are dr. I say that so that you don't expect them to be able to diagnose any heart problems you may have. They are strictly PM technicians and all of them know my PM better than any DR. or nurse/technicians I have seen.

Second, don't forget you are a customer of the company that rep works for and there seems to be a greater incentive for them to be sure your PM is doing all it can for you. Like all companies they don't want a dissatisfied customer. Think of it this way, you get a new car and some part of it doesn't work the way it should and you keep going back to the dealer until you give up an contact the manufacturer. They send, or put you in contact with somebody that fixes the problem.

Third, why not take a copy of what you posted here, or something similar, with you so that rep will have in writing your exact symptoms. If you are like me, even after 11 years when I go in to talk about my PM let them bring up something or ask me a question and I'm likely to forget some of the details I had in mind.

Fourth, If the Rep can't fix things I suggest that you get another Dr. ASAP.

Good luck to you,

Smitty

Agree

by Sue H. - 2011-11-29 07:11:54

Have the Medtronic rep look at your PM for you and tell him all the symptoms. The reps are good and know their product better than most of the cardiologists. I'll bet it's not set right for your activity level and for the doctor to say it's working ok, I'm sure it is but not for you. Every patient is different and the pacers need "tweeking" to adjust to the lifestyle of the patient. That's another thing....you say you go to an internist. You should be going to a cardiologist /electrophysiologist who is experienced with pacemakers. I switched from my general cardiologist to the electrophysiologist in the same practice and what a difference. If I had symptoms, first thing he did was check pacer, e.g. rate response, etc and didn't automatically want to put me on a drug for the heart symptoms. Good luck and you should feel better with a pacemaker.... Sue

Thanks for the helpful comments

by dgtvl - 2011-11-29 09:11:04

Thanks to the 3 of you who responded to my posting so quickly. Your comments were very helpful and make me feel better. I believed my PM needed adjusting but after seeing the doc thought that maybe I was wrong.

To respond to some of your comments:

I have an internist because I live in a rural area and there are no cardiologists.

I thouht the Medtrocs rep would be a technician but my appoint is with Dr Xxxx of Medtronics. Based on your comments I have confidence that this person will at least listen to my symptoms and try to make things right.

I will take your advice a bring a list of my symptoms with me. I agree that you can be taken off point easily during an appointment.

Luckily I am on no med's so far. The internist told me he could fix my prolems with a beta blocker but did not recommend it as I am only paced 42% of the time and with the beta blockers I would be paced 100%. I am not keen on a chemical fix for what is probably a mechanical (electrical) problem.

Thanks again to all of you for your advice. I hope I can pay it forward as I become an experienced PM'er.

Medtronic rep

by ElectricFrank - 2011-11-30 01:11:49

Medtronics has field reps who are highly trained. Most of us have had excellent experiences with them.

I also live in a remote desert community and the Medtronics rep does all the programming even for my cardiologist.

frank

I agree

by ElectricFrank - 2011-12-01 02:12:22

Just figure..my old pacemaker is still working correctly in its plastic bottle on my desk. That doesn't help me any. LOL

frank

Me too

by shelee - 2011-12-05 12:12:07

Hi,
I too had a new pacemaker box fitted in Feb 2011. 5 days later developed dizziness, extreme tiredness, sometimes nausea and generally restless. Had lots of tests 24hr ECG, BP, chest x ray. At one point they said my pacemaker was oversensing, and they adjusted something. Symptoms lasted on and off for three-four months. GP put me on beta blockers which appeared to help a bit. Attacks started to be less severe and longer duration in between. Oct and Nov virtually nothing at all. Then in the middle of the night last week, woke up to find it all happening again. They too keep saying nothing wrong with pacemaker, nothing in history. Very frustrated at the moment. I am now seeing a neurologist tonight to try and rule out anything in that area.
Let us know how you get on.
Shelee

Update

by dgtvl - 2011-12-12 09:12:54

Hello everyone
I had my appointment a week ago and am pleased about how it went.
It turned out that the appointment was with a cardiologist and a tech from Medtronic. Both of them took my symptoms seriously. They looked at the outputs from the pm and discussed options with me. In the end they changed some settings and so far so good. I haven't had any symptoms since. I am seeing them in a month to follow up.

Thanks again for everyone's comments!

cool

by keyladewal - 2011-12-21 02:12:26

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Update

by dgtvl - 2012-03-01 07:03:21

Hello again everyone. Since my last post I went back for another PM check. I had been feeling well but the Medtronics tech and the doc felt that my PM was pacing me too frequently and they made a number of changes to the settings. Within a week I was feeling poorly again, mainly shortness of breath especially when doing any kind of exertion. I called to ask to get into the next clinic which was in a month and after some confusion was given an appointment. It was discovered that the PM was now pacing 100 % of the time. Some more adjustments were made but again I am not feeling well. The tech seemed genuinely concerned and told me it could take a few more appointments before we get it right. The doctor on the other hand told me I was a "problem" and he hoped I wouldn't be back. I was shocked! The nurse tried to cover up and said he hadn't had any sleep in 48 hours but there is no excuse. I plan to speak to my family doctor and get a referral to another cardiologist.
I thought I would share my experience in case others have had difficulty getting the settings right and. / or a similar reaction from the doc.

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