Side Convulsion

Hello,
I am 25 years old and had my pace maker implanted on July 16th. Starting the day I had the pace maker implanted I have been experiencing a large contraction on the right side of my body. I have called my cardiologist twice and they aren't concerned. I have also seen a different cardiologist who took chest x-rays and believes that my leads may be stimulating my diaphragm. He said it "wasn't serious." I am very frustrated because I don't feel like anyone has aknoweldge how frustrating it is to have a huge "twitch" in my side. It happens standing, sitting, working out. There isn't anything I can do to stop it or anything I have noticed that causes it. I am going to see another practitioner today.
Has anyone heard of something like this before?

8 Comments

It happens...

by dward - 2008-08-14 02:08:35

I also had a twitch.
When I told my PM Tech about it, she put her hand on my diaphragm and "triggered" my PM, YUP! There's the twitch (I couldn;t tell when she triggered the PM, so she knew it wasn't any sort of nervous reaction.

She too said it may be that one of my leads is too close to the phenic(?) nerve.

I went for x-rays etc., and they ended up reducing the power going to the leads, which seemed to help a little at the time - but like nat said, mine seemed to go away as time went on (a couple of months).

So yes, good to check it out, but it may just be part of the healing.

Twixt twitch and the trivial

by Smart Redd - 2008-08-14 08:08:52

If you're really quiet, can you hear your breath leaving your mouth right after a 'convulsion'? Sort of like a hic-cup with out the hic? If so, it is your diaphragm that is being affected by one of your leads.

For me, the twitching was not painful exactly, but noticeable enough that DH could feel the bed shake with every beat. After a lot of lost sleep and discomfort, I called the doctor and started "squeaking". According to the good MD, whatever I was experiencing was all in my head. The x-rays and read outs indicate everything was working just fine.

Through some contortionist maneuvers, I was able to show the nurse a minor twitch so she believed me and called in a Medtronic rep. who tweaked the parameters down and around a bit and most of the issue was resolved.

Hope you get your problem resolved quickly and well.

Love, Redd

welcome to the group bikebunny

by sis - 2008-08-14 12:08:31

I was just wondering how large of a contraction feeling that you are feeling? I had an ICD implanted on April 18th and had a sharp burning followed by a contraction mine hurt in every position just about! I went and had x-rays & an echo and they decided that my lead was prefferated threw my heart touchin my diaphragm. One week later they did a lead revision and moved it. Within another week the pain was even worse the sharp stabbing pain was even stronger than the first time and the contraction pain was worse than labor pains!!! Mine was on my left side though. My EP Doc couldnt figure out what was wrong so he told me the best option he could think of is that the lead might be defective and he could take it out and put another one in......Round 3 for me!! They did that on May 9th my hospital stay that time was not a very fun one I was in soo much pain and everytime i would feel those contractions they told me that my monitor was perfectly FINE....................So I still havent heard if I had a bad lead or not and to this day I still dont know what caused all of that pain! I do want to say I was consistant and kept calling them and bugging them!! I knew my body and what didn't feel right and I was right so keep on them if you don't feel right!! Hang in there it does get better :) Sis

worth looking into

by nat - 2008-08-14 12:08:41

Hi, I am 23 years old and received my pm going on two years ago. I have experienced the 'twitch' you are speaking of. Frustrating, yes, but for me it eaither went away or i got used to it. Your pacemaker is very new. I think it is good to get the doctor to look at it but also give your body time to adust. (make sure too it isn't set too high if you are waking up at night because of the pain/twitch)
good luck!

Problems From PM

by SMITTY - 2008-08-15 01:08:52


Hello,

I've there and done of what you describe. Of course the doctors are not concerned and in my opinion there are several reasons for that.

First, the doctor does not have to live through your daily torment so it is too easy for him to brush off your complaint.

Second, doctors tend to believe everything the pacemaker manufacturers tell them about pacemakers and there is no way a manufacturer is going to say "by the way these things may cause the patients pain and or discomfort due to the electrical impulse going where they are not supposed to go."

Third, many doctors implanting pacemakers have not mastered the use of a TV remote, or a computer, so there is no way that doctor can know just how a pacemaker works and what the potential is for it to cause unwanted problems such as yours.

Fourth, not having to live through what you are and the fact the manufacturer will not tell what is happening to you is a possibility, that doctor probably doesn't believe you.

So now what do you do. Your job now is to convince that doctor you have a problem and if that is too a big problem, then make such a nuisance of yourself that doctor will be willing to do whatever is necessary to get you some relief. Remember that old axiom, "The squeaky wheel gets the grease." Don't be afraid, or ashamed, to be that squeaky wheel.

In my case my pain and discomfort got so bad I asked to have the thing turned off, and I had no idea what the results of that would be. My very (in)considerate doctor even offered to remove it, but I declined his offer. It turned out, as I learned from another doctor two years later when I had to have my PM restarted, that electrical impulses going to the ventricle were "leaking” over and stimulating a nerve, as well as the diaphragm on my right side and causing my pain.

I had the option of letting them remove that lead and implant another or I could try for a spinal injection to deaden the affected nerve, I elected to go with the injection and I was lucky, it gave me complete relief. The only problem is the injection wore off after almost three years and I have recently gotten the first of two new injections as the problem has resurfaced. I was warned that if the injection even worked it probably would not be permanent.

What I'm trying to say is unfortunately the burden of getting help is now your job. All you can do is make your problem known to everyone possible. Since your PM was implanted a little less than a month ago, if you cannot get help from the doctor, put your complaint in writing to that doctor and send a copy to the hospital administrator. It is not necessary to make any threats of legal action just yet. But that hospital administrator will have more incentive to see that you get help and for certain they will not tell you it is not your pacemaker, as you and so many of us have heard in situations like yours.

Good luck,

Smitty

stimulating the diaphragm

by ElectricFrank - 2008-08-15 12:08:32

The main cause of diaphragm or other muscle stimulation is that the pacer is set to monopolar (or unipolar mode). This can be caused by the pacer not being programmed properly or a bad lead can cause it to revert to this mode. The bottom line is a simple interrogation of the pacemaker will show the problem.
Two suggestions:
1. Ask to have the pacemaker manufacturer rep see you for a checkup. They are generally much more knowledgeable than the local cardio or tech. Cardiologists are trained more in the physical aspects of the heart and usually tend to think in terms of meds or surgery to correct problems. The rep knows the pacer electrically and can often easily find a fix.
2. Ask for a copy of the pre and post printout of you last checkup. Several of us here can often spot something to ask the doc about.

There is no reason you should have to put up with the discomfort of the problem. Also, it can be the sign of something more serious that needs to be corrected.

frank

Doctors!

by ElectricFrank - 2008-08-16 01:08:19

Your right on Smitty about doctors and remotes etc. I have manufactured biofeedback equipment for nearly 20 years. It always gets my attention when a doctor calls and asks me how to do something simple with the equipment, and. hen suggest checking the manual I get the response "I can't read manuals". Wow and he got through medical school!

frank

pain relief for diaphragm stimulation

by dstills - 2008-09-06 12:09:49

I had an ICD implanted 8 days ago and started having the burning stinging pain on day 4. Day 5 it was bad enough I made my first ever trip to the ER. The interrogation showed nothing. Seen a nurse practioner in my cardio's office the next day. I was basically told my body was trying to adjust to the implant and to use Advil for pain. I decided to try and ignore it and hope it would go away. Yesterday I started having the convulsions and burning, stinging so bad I got back on the phone. Finally talked with a nurse in the EP doc's office and was told it is probably diaphragm stimulation and I needed to be "re-programmed". I have an appointment for Tuesday afternoon.......this is Saturday. Anyone have any suggestions for pain relief until that time? I've thought of going to the ER at the hospital where it was implanted, but for me that is a 2 and 1/2 hour drive. In the meantime I got some strong pain med from someone else, but it only masks the pain a little and makes me a lot sleepy. Just call me "cranky" right now.

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