Pain relief??

I received an ICD 8 days ago. Today is the 4th day of convulsions/stimulation or whatever. The EP doc office says diaphragmatic stimulation and I have an appointment for Tuesday. This is Saturday and I'm beginning to think I can't make it until them. The hospital and doc who did the procedure is 2 and 1/2 hours away so I am reluctant to go to the ER there and waste a trip. They said I need to be "re-programmed". I am so sore thru to my back I can't even relax. Any ideas for relief until Tuesday? Thanks.

4 Comments

relief

by patpeter - 2008-09-06 07:09:18

Sounds like you shouldn't wait until Tues. Maybe you should call the ER and speak with an MD or nurse and explain what's going on and have them advise you what to do. I think you need to get this attended to as soon as possible. Let us know what happens.

Pain

by SMITTY - 2008-09-06 10:09:36


Hi DSTILLS,

I've been through the nerve/diaphragm stimulation and know what hell it can be. Of course I don't know what you got a pacemaker for, but if it not "assisting" your heart 100% of the time, I have a suggestion. Again, this is assuming you are not having this problem 100% of the time and that would mean you are least likely to have this pain when you are sitting or lying down. I keep saying this, but I want to be sure you know that everything I say is contingent upon the fact that your pacemaker is not working all time. But if you do get some relief while not physically active, then the thing to do is be as quiet as possible. When mine was at its worst the only time I could get relief was when I was lying down. But even that was not a given as it woke me from sound sleep many times.

I'm going to guess that the voltage setting on a lead is much higher than necessary or it is possible that a lead is in such position that it allows some of the electrical impulse from the pacemaker to impinge on a nerve. It was the lead to my ventricle that gave me my problems. I don't think there is not much you can do or take to get relief unless you can find activity, or lack thereof, that may help.

I will say if it gets bad enough and you have to go to the ER, don't walk in and say I think I have a problem with my Pacemaker. Most people without one or that have not been trained in just how one works will not believe you so they try to ignore you because they don't have a hint of what to do. You will need to go in and put on your best show for them. They will then, maybe, get you some help.

I have never seen an ER with the facilities or personnel to even do a pacemaker checkup, let alone change the settings. So you will have to get their attention.

I wish you good luck.

Smitty

Update - pain relief

by dstills - 2008-09-14 03:09:28

I went to an appointment for possible diaphram stimulation on Tuesday, Sept. 9. The interrogation showed nothing and they wanted me to wear an event monitor. I had to rant, rave, stomp and cuss before the ANP took me seriously. Then he did chest xrays and echo. He redeemed himself, at least to me, by saying he wanted to admit me for observation and a CT scan. He said he had only seen two cases of lead displacement in his seven years, and that is what he was thinking. After making contact with the EP, I was sent for admission and the EP ordered the CT for that night. The ventricular lead had pushed thru the ventricle, but had not pierced the pericardium. It was repositioned the next day in general surgery with a heart surgeon standing by. All seemed to go well and I was sent home the following day.

I think I learned two lessons from this. First, trust what your body is telling you; and second, like Smitty said "put on your best show for them". It is kinda out of character for me to really raise hell at a doctor's office. Hope I don't have to do it again.

Thanks for your help.

Deannie

Pain relief??

by Tshirt - 2008-09-18 10:09:37

Wow! Deannie I have just read your update! I wish I had ranted and stomped like you! I hope you've got it all sorted out now and feel absolutely nothing - because that's how it's supposed to be!!
I got my pacemaker in Dec 07 and from the very beginning I could feel it pacing. It was quite strong and painful, but I assumed it was all part of the process and would all settle down. That's what the Drs told me, too. They at first thought I might be a little sensitive to the pulsing.

On my first post-op visit - a couple of weeks later, the Dr told me that the xray had shown that the lead had moved slightly and he was ready to replace it right away. But then he called in his partner, who has had several years more experience re pacemakers, and they 'hummed and ha ad'and eventually decided to wait a few weeks - until January,

I kept having the various tests and scans etc., and kept being told that I was probably just sensitive, and had a few adjustments. The Dr. did acknowledge that I needed a higher voltage than I should have done, but he didn't listen when I explained the pain level. I didn't push it hard enough, I guess, partly because I hadn't realised that it wasn't supposed to hurt.

After another month or two, I was becoming quite desperate. I felt as though I had a 'brick' inside me, that just didn't fit, and it felt almost as if I have a boil under my breast! I still couldn't lie on either side or my stomach, and my left shoulder and arm and neck and jaw always ached. But by this time, I think he was beginning to think I was a little mad. See how it goes for another couple of months.......

Somehow, at the next visit, I managed to convince him that I could cause the pacer to pace by lying on my side and so he gave me the chance to prove it while he monitored me. He could see on his screen that I was pacing unnecessarily and I could tell him each time.

It was only half the story, but after much consultation I was flown to another centre to have the lead removed.
They came to the conclusion that the lead had penetrated, but not pierced the pericardium so they decided to disconnect that lead and insert another - to see how it would go. I, of course, always went along with their suggestions and always convinced myself that 'this time' it would all be fixed. But it wasn't. It did seem to feel a little better - at least I don't feel the 'triggering' so much

But I'm still at it. I keep having to consult more specialists who always say we should wait another month or so, to see how it goes..., and now the dilemma is that I will have so much scar tissue that it's a dangerous op to have to remove the lead - and nobody wants to take on the responsibility.

So I am SO GLAD to hear that you had yours replaced right away! I wish I had raised hell like you did! And I wonder just how common this is - my Drs all seemed to declare it almost unknown to happen too!!
Trish

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As for my pacemaker (almost 7 years old) I like to think of it in the terms of the old Timex commercial - takes a licking and keeps on ticking.