Could it be shocking me that much.

I am 25 y/o female who had a icd installed in March 2011. I really haven't had to many problems maybe the ocassional itch or ant bite sensation. Since Friday I have had what i thought was just going to be the ant bite sensation, but it is like sharp stabs of pain around my icd. Some aren't as bad as others but a few are off the scale for pain. They come on suddenly and go away just as fast as they came on. I called my DR yesterday and he said he didn't think it was anything serious but to go to the ER. So after my husband had to hog tie me into going i did. I told them what was going on and all. They did an x-ray drew some blood and did an ekg and gave me some morphine. The DR said all was ok and she thought it was the device causing all the problems, So she called my DR who is 2 hours away and told him what she thought and he again said it was probley nothing. All I know that this isn't normal. I had 8 sharp stabs in 5 minutes. I would think if it was shocking me that much i need to be in the hospital and them trying to find out what is wrong. I don't know what to do nothing helps and i am now so scared of the very painful ones. Oh and i don't think the ER i went to has the machine that checks to see if it has fired. Any ideas or comment would be greatly appricated. My husband has to got to work tomarrow and i will be home with our two young children without any means of transpotation. This can't be normal.

11 Comments

Shocked

by SMITTY - 2011-07-31 07:07:33

Hello,

First and foremost DON'T BE SCARED. I say that with some conviction because I lived for several years with what I think is the exact same thing you are experiencing.

Mine was "stray" current from a pacemaker impulse stimulating a nerve. It is harmless, except for the damage it may make you do to yourself. Some times simple adjustments in the PM settings can stop the problem, sometimes it takes relocating the lead tip to another point in the heart chamber and in my case having the affected nerve deadened was necessary.

It is not uncommon for the Dr to say it is not the PM because frankly they don't know what in the hell it is, nor do they have any idea how much discomfort these things can cause. Your best recourse it to grab that Dr by the nap of the neck and say fix it damnit.

I know how much trouble I had and I know how my wife and I did everything but beg for help. This was in 2000 to 2005 and I had no other source for information except the Dr and the hospital, so I thought. I became so desperate that I finally told the Dr to turn it off. Now I'm not recommending that for you because I have no idea why you got a PM and if I did I would still not recommend that.

The best thing about all this is the discomfort can become less or stop all together with time if you can tolerate the pain until that happens. In the meantime I suggest you contact the Dr and tell him about your problem. If that doesn't get the help you need complain to the hospital administrator and if that is fruitless contact the St. Jude and tell them how badly you need help.

In the meantime I'll repeat, don't be scared. Your pacemaker is working just fine and will continue to work. Like mine it is probably just stray current from a PM impulse stimulating a nerve.

Good luck to you,

Smitty

Thanks

by w3il3r01 - 2011-07-31 10:07:10

Thanks for the advice. It has only been doing it for 3 days and them three days have been a very bad three days. Just when i think it may be gone it comes back. I had the device put in for long qt syndrome because of a long history of what they thought was a seziure disorder but turned out to be my heart. I think if this is how life is going to be with the ICD then they can take it out and I will gladly accept the risk of sudden death in the event of a long qt episode. I know it sounds like I would rather die but what is a life filled with pain. I am going to call the dr tomarrow but i don't think it will do much good. I have never been the type to just take medicine to mask the pain I am the type of person who wants to know why something is painful. I really wish some of the nurses and the drs had to feel what it is like for 1 minute I bet they would be more caring. I just want the dr to find out what is wrong and find out how to fix it. Thanks

Shocks

by SMITTY - 2011-07-31 11:07:05

Looks like I may have been talking when I should have been listening (again). I didn't know you have a defibrillator. I thought it was a pacemaker as the symptoms you describe are almost identical to what I had with my pacemaker.

I know what a defibrillator is and what it is supposed to do, but that is the extent of my knowledge about them. I do know they make a defibrillator/pacemaker combination and is it possible that is what you have. I have always thought that a defibrillator was for all practical purposes dormant until it detected the need to shock a heart that was in V-Fib.

Regardless of what I do or do not know about the device you have, please don't underestimate what a call or e-mail to St. Jude may get for you if you don't get what you deserve from the Dr. The Dr may give indications he is not concerned, but I can assure St. Jude would not be unconcerned.

To be honest, I would wager the Dr lack of interest stem from the fact he doesn't know enough abort the electronics of your device to give you much help. And if that is the case, he is like many Dr that implant defibrillator or pacemakers. They may be excellent surgeons, but when it comes to the electronics of the devices they implant they are lost. If the truth be known I expect many of them have not mastered the use of their TV remote. I know that sound ridiculous, but unfortunately it is too often true from what I see people say here about their experiences.

Good luck,

Smitty

Pain around ICD

by ElectricFrank - 2011-07-31 11:07:08

If the pain is around the ICD itself then it isn't the device firing due to a heart problem. I don't have one, but from what I know about being shocked and from the descriptions of others on this site the result of an actual defib shock hits in the chest area and is enough to bring you to your knees. It is usually accompanied with feeling light headed or passing out, because the shock is only delivered if there are real indications of a threatening condition. It is also a short sudden shock and doesn't go on for 1 minute.

There are two possibilities that occur to me. One is a sharp area on the ICD or a lead that it sticking into the tissue in the device pocket. I've occasionally had this with my pacemaker when I've done some new activity that caused pressure on the area. The other is a lead connection at the pacer that is not properly sealed which allows pacing current to leak into the area.

In either case I suggest you not use the word "shock" in dealing with the doctors. They tend to take you at the word you use, which can be totally wrong. Then they look for data that would indicate you had been defibbed (shocked) and can't find any indication of it. The next approach is to write you off as a complainer.

My suggestion is to refer to it as a "shooting pain around the ICD". This opens the way for them to look for other causes. And this sort of pain has nothing to do with the ICD preventing sudden death.

frank

I belive it.

by w3il3r01 - 2011-08-01 07:08:52

I agree with the previous post it is very surprising at what some medical persons don't know. The condition have is a genetic heart condition and there is alot of meds that can induce a bad heart rythem. I have to tell them prior to them giving it to me i can't have that which is really scary because what if i can't tell them what i can't have it could cause me alot of harm.
I just wanted to say thank you to all who posted advice and support. I haven't had the sharp stabbing pains like i was having them 3 days. I don't know what it was i belive it was a nerve over what the er dr was trying to tell me that it could be shocking me. I guess i will know what it was in a month or sooner if needed. Take care everyone.

Ok

by w3il3r01 - 2011-08-01 10:08:03

I don't think it was shocking me it is just something the er dr mentioned and I told he that if it was shocking me with very low jolts and eventually it would do a big shock. My thinking is that it is a nerve or that the device should be moved lower down because it doest poke out a good bit and the skin is very tight. Even though I do not want any more surgeries. My dr had a hard time getting this one in and was some issues during the procedure so i don't want to do it again. I am wishing for the best. Thanks

It's better today.

by w3il3r01 - 2011-08-01 12:08:04

I feel beter today. It still hurts but it isn't the sharp pains it was it is more like a mild pain in my heart area instead of the icd. I dont really know what is going on. Thanks to all who responded.

Well put, Cabg

by ElectricFrank - 2011-08-03 01:08:16

As far as medical types I really don't expect even an EP to be an expert in both plumbing, electrical, and meds. The problem is that they aren't aware of what they do and don't know. Most of it is anecdotal information from pharma reps, pacer salesmen, and other docs.

I'm also very concerned about the decisions they would make if I was unconscious. This is one of the reasons I have as much as possible done without sedatives or anesthesia. Of course this has it's limits, but I've found that they are much different than common wizdom dictates.

My suggestion on the pain you are having is to try to be aware of what you are doing when they happen. Certain movements that put pressure or pinching on the pacer site are suspects. And remember it may be something you do that irritates the area and causes it to be sensitive later to a different activity. This is an area where we have more info than the doc.

best wishes,

frank

Me too!

by TITLE - 2011-08-24 08:08:12

I am 56 and I to have had the same experiences. I had a ICD/Bi-Ventricular pacer implanted also in March 2011.
I would describe mine as pin pricks that increase and decrease. Funny, it seems to happen always at dinner time. It doesn't hurt, instead, it's a like electric "fizzies" (for us older folks to remember what a fizzy is). I haven't had recently though. Your are not nuts, your feelings are real. I agree with much of the feedback, Dr's don't understand completely unless they have one themselves.
How are you feeling overall? The strangest thing happened to me 2 weeks ago. I woke up feeling fine! No more always feeling tired, short of breath etc. Ever since my surgery in March I have been on a slow steady downward trend. The Dr. told me 9 months to a year would be my recovery time and said I'm out of shape after a year of inactivity due to the disease and I'm over weight. I was ready to give up. Then out of blue something happened that made me turn the corner.
My best wishes to you and your health.
TITLE

Fear,

by carla jean - 2011-09-16 03:09:56

I just had A pacemaker placed 1 week ago, ya scare me. All this talk about it being messed up. Maybe I'll just read between the lines. The good stuff. They told me yesterday that it was working 32% what ever that means? I dont know nothing about it, just know I glad to be alive. I had tackie then braidie then long paulses.

it was the wires.

by w3il3r01 - 2012-01-01 07:01:50

When I finally went back to the Dr he said that my wires are not in the place he put them. They moved any way he said that it was most likely what was causing the pain. It isn't anything of great concern, he said he could go back in and repostion them but it doesn't bother me to much so I am not worring about it right now. The leads are where they are supose to be so it should be okay if it needed to shock me, i know the pacer part works.

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