Terrified
Ok, so I finally called the doctor about the EMF sensitivity. The nurse only half listened to what I was telling her and said she would call me back. She called back and stated the doctor said he has never ever heard of such a thing. I once again reiterated that I am completely fine when I avoid the things I have found to "zap" me. She said the doctor wants me to come in so they can re-create these situations to find out what is going on. I asked her if she understood that it was painful when it happens. She told me to talk it over with my husband and call back if I want to come in.
I don't want to be a guinea pig and I don't want to be poked and prodded unnecessarily. My biggest fear is that they will find something is wrong and then I will have to be re-opened. I was so terrified the first time around that I just don't think I could handle it if they had to do it again.
As I sit here typing on my computer, I feel these tiny little "zaps" occasionally on my chest where the leads are located. When my daughter sits in the back seat of the car texting on her phone I know it because I feel the "zap" which is more painful and stronger than the one from the computer. I am always yelling at her to turn off her phone when I am in the car with her.
There always seems to be a lot of people on this site every time I log in, but there doesn't seem to be much conversation. I was so glad to find the site in hopes of somehow getting through this phase in my life because of course my family truly does not understand what I am feeling.
5 Comments
Not EMF
by SMITTY - 2010-10-25 09:10:30
I’ll try not to be so abrasive this time, but I do not think you are being zapped by EMF. Now don’t get me wrong, I know you are being zapped because I have been there and felt the exact thing. But don’t be terrified. The pacemaker is working fine, too good in fact.
First let me go back to my experience with EMF. EMF interference is not painful. It will feel like a very irregular heart beat and if it lasts long enough a person can get short of breath or even pass out, but they will not feel pain.
Now, I’m going to talk like I know what I’m talking about here but all I’m really doing is relating my experience. When I got my first PM in 2000 everything was perfect for the first three weeks when I had to go back for a routine pacemaker checkup. I don’t know, and will never know, exactly what settings were changed but in less than 10 min after leaving the PM clinic I started having what felt like electrical shocks. These took place at various times and were impossible to predict. This went on for almost three years with me complaining regularly and getting countless PM checkups only to be told "there is nothing wrong with your PM; it is working fine." Finally I decided that the cure (I had the PM for a low heart rate that had never really bothered me) was worse than the illness and I asked for the PM to be turned off. The Dr resisted, but finally complied. Instantly my shocks were gone. A couple of years later the low heart rate got bad enough that I was having shortness of breath and the PM was restarted. Within the hour I was again being shocked. A few months of this went by before a doctor decided my shocks were coming from part of the electrical impulse going to the ventricle was escaping the ventricle and "stimulating" my phrenic nerve. To stop it I could get an injection to deaden that nerve, I did and it worked, but other problems resulted from that do not involve the heart.
My problems have caused me to spend hours and hours researching what was going on. From what I learned and what others, mostly here have told me, it that when our pacemaker sends an electrical impulse to the heart to make the heart chamber contract, some of that impulse can escape and get to a nerve or some of the surrounding tissue. These impulses can feel exactly as you describe. The bad part about it is the more your PM helps your heart the more often you are likely to feel them.
The only good part about this is every time you feel one of these you know your PM is on the job and doing what it is supposed to do, that is help make heart beat as it should. I don’t know why you got a PM, but I’m going to guess it was for a low heart rate and is therefore an on demand PM. In other words it helps only when needed and unfortunately the more often your PM thinks it has to help out, the more often will get zapped.
Most of the time, simple PM settings adjustments can solve the problem. Occasionally they have to reposition a lead, but this is rare.
I wish you the best,
Smitty
zaps
by Tracey_E - 2010-10-25 10:10:56
I agree with Smitty, the odds that it's EMF are very slim. It's more likely it's your settings or, less likely, a lead out of position. Re-creating the problem isn't fun, but it's not a common problem so it's the only way to get a good answer to what's going on and to fix it once and for all. I'd rather do that than spend months guessing at it and not fixing it, ya know? Good luck!! Is your dr a cardiologist or an ep? If it's not an ep, you might consider getting a second opinion.
The times there are not many responses is when most of the visitors you see are newbies like yourself looking for answers. The regulars, those like me who've been around a while, come and go. Chat is almost always dead. If you want to chat, it's best to post or do a shout and ask people to join you. That's about the only time I go in there, usually I skim the posts, answer a few, then leave.
The key is Terrified
by ElectricFrank - 2010-10-26 01:10:09
Anxiety and fear can cause all sorts of symptoms. If you are as terrified as you are saying then I'm not surprised at what you are feeling. That doesn't take away from what you are going through, but trying to fix a non existent EMI problem will not help the situation.
I only mention this because most doctors won't be straight about what they are thinking.
best wishes,
frank
Nerves
by Dvd - 2010-10-26 12:10:58
I had the same problem with my first IED. They actually started after I had been working out. I was told that scar tissue forms around the leads where they are anchored in the heart mussel. The electric pulse passes through this tissue widening the point of contact, thereby increasing the likelihood that you will feel pulse. If it's bad you should insist that the anchor points are checked closely. If there is a problem it could lead to even more scarring which could lead to the leads having to be moved and that can lead to even more problems. It might be as simple as really taking it easy and let things heal. I've had EMI and EMF problems in the beginning but that effected the operation that led to inappropriate shocks ( I have a deifb ).
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advice
by LS - 2010-10-25 08:10:24
I would go in for an interrogation. It's quick, painless & easy & it will show EVERY single thing that has gone on with your PM since it was put in. The times they occured too.
Liz