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Posted by Nara on 2010-08-30 19:10
I got pm implanted on 8/18 for my syncope. I am 39 y.o., and for the past 20 years I would pass out "with a bang" on average once/every 2-3 years. When I would pass out, I would be out cold for several seconds and go into hypoxic seizure. During the tilt table this June, my heart stopped for 8 sec (and the whole scenario with seizure was repeated). So the cardiologist said pm will work with preventing heart rate drop (but I would still feel lightheaded, dizzy, etc. when "reflex" was activated).
Now, 12 days into this discomfort (including pm getting activated at least once daily with what feels like very uncomfortable rapid pacing and getting "zapped" internally 2 or 3 times for the past 12 days), I am wondering if getting pm was such a smart move on my part. I talked to cardiologist about the rapid pacing, and Medtronic tech adjusted settings (I still get the rapid heartbeat though), and my cardiologist pretty much ignored my complaints of getting "zapped", saying that I am "hyperaware" of my pm.
I can't find anything on the internet that suggests pm is a really great idea for syncope. My cardiologist, however, came highly recommended. My friends/relatives think that I probably really need the pm given my history of passing out with seizures.
Can anyone relate to my questions? i apologize for the long post (and the elements of whining in it).
Thank you,
Nara
8 comments
can relate
Comment posted by Finn on 2010-08-30 20:50.
Hi Nara, sounds to me like you really need it, i put it off a couple of years, finally after passing out more often and visiting several e rooms in several states i bit the bullet and had one inplanted. The zapping soinds strange to me though, mine is working 95% of the tome and i hardly notice at all, i'm coming up mon 11 months. Be a pain to your cardiologist with questions. Finn
syncope
Comment posted by pawgles on 2010-08-30 23:14.
I have syncope. Back when I was 22 I was passing out a few times a week randomly for no reason. They did a tilt table test, put a pacemaker in and I feel 100% better. That was 15 years ago. Getting a pacemaker was the BEST THING THAT EVER HAPPENED TO ME medically! I pace only 1% of the time.
Give it some time, you will get used to your pacemaker. I had to have my pacemaker settings adjusted quite a few times during the first 2 years but after that I rarely ever feel it go off.
You will be hyperaware of your heartbeating and any little thing going on in your chest for the first year or so.
We're all here for you. Feel free to pm me if you'd like.
Paula
You are not alone
Comment posted by PMtech8509 on 2010-08-31 11:47.
Please rest assure that what you are feeling is a very common complaint. I work in a very busy pm clinic and this is something I hear quite frequently. The "zapping" feeling is more than likely nerve pain, associated with your recent incision. This is very common and should decrease over time. And as the previous post states you will probably need time to get comfortable with your pacemaker. Also, I do believe that it was a very smart move to go ahead with the pacemaker, although it was infrequent, one day you may have passed out in the wrong place or at the wrong time. I hope this helps, sometimes your healthcare professionals can become desensitized to your feelings and concerns. I am glad to have stumbled upon this site, I will recommend it to my patients!!!
Have a good day!
Mine hit at 50
Comment posted by COBradyBunch on 2010-08-31 13:09.
I was 50 and had two syncope episodes a couple of months apart. I just went down 'boom' on the first and for the second my wife and I were talking when what she described as me deflating (scared the crap out of her because she is a medical professional and thought I was having a massive stroke) until I passed out. After the 2nd time they convinced me to stay overnight in the hospital. Turns out I didn't need a tilt table and as I was dropping off to sleep at 4:30 I suddenly awoke to a room full of crash team members. My heart had slowed down until it reached a point where it stopped a few times for several seconds each time.
Anyway, got the pacer and it takes a while to get used to the idea of having one. I will tell you that you are going to go through some hard times, I like to tell new implantees that you will go through what is very much like the stages of grief. Understanding you will go through them, that they are normal and that you will get through it and be a happier, healthier person is important. The zapping is one of these things. Unless you have a tech messing with your settings you are very unlikely to feel the pacer kick in. Given your symptoms you are probably very similar to me. I actually went almost 6 months post implant before I actually used the pacer and I still use it less than 1% but it has kept me from dropping a few times in the past months. Most of mine are in my sleep, and that was something that concerned my doc since he said that one day, without the pacer, my heart might not wake up from it's little heart nap.
Anyway, welcome and reach out if you have questions, need help or just want to chat. There are a lot of good people here ready to help.
I got mine at 58
Comment posted by Edouard on 2010-08-31 14:03.
I got my PM three months ago at age 58. Like yourself, I'd pass out occasionally (+/- once a year over a three year period). The last time I had a syncope, I banged myself pretty badly.
I had a follow-up at the Pacemaker Clinic in early August and found out, to my surprise, that I was pacing only 2% of the time. Like yourself, I questionned the wisdom of having accepted the implant. I made a flip comment on this forum, entitled "Hardly seems worth the effort".
Wow! Did I ever get an earfull!
You might want to make a search on this site for the title of my rant. The people who answered me make a better case than I ever can.
Good luck
Edouard
response
Comment posted by nbarton on 2010-08-31 14:15.
You and I are in the same boat my friend. I have had my PM since May of this year. I too felt everything you desribed and the doctor told me the same thing. I have been told to settle down and try not to focus on the PM as much, I know it's easier said than done. But I am taking the advice and I'm going to see if time will not heal it. I also have a little numbness in my left bicep, but then again I was told to give it time. I have had the PM adjusted a few times trying to calm down teh "zapping" and still no luck. I am going back on the 10th for my 3 month check and I hope that they can tell the settings that I need to be at. I am 36 and not really buying into the PM and that may be a lot of my problem. I hope all goes well....
pm for syncope...
Comment posted by Nara on 2010-08-31 21:02.
Thank you, everyone, for your comments. As I don't have anyone in my life who has a pm (at least, nobody told me yet :), after acquiring mine, I found myself quite lonely, as noone I know can share my reference points (discomfort, zapping, etc).
As I mentioned before, my internet search yielded nothing but several (fairly scholarly) articles summarizing research on pm implantation for syncope. In one of them (2006), the authors suggest that education is the best tool for preventing syncope. Not wanting to sound too dramatic, I really did feel like crying when I read it (feeling very angry with myself for not doing my "homework" prior to the procedure). My husband suggested I find a support group and talk to someone who actually has a pm, and that's how I posted my question.
I can relate to most of your comments - Finn, like you I ended up in several ERs in several states (I had 3 neurological work ups, with CT and MRI - because of seizures nobody ever thought of my heart until about 6 years ago, and at that point I was not ready for anything like a pm).
I can definitely see this process of getting PM in terms of stages of grief. Shortly before my procedure, I was joking about having a late onset (at 39 y.o.) of body image issues, sharing my distaste for the idea of dragging a pacemaker in my chest (as one of the lesser appealing qualities/assests/accessories for a woman, at least on a superficial level). I am still not quite ok with it (or with the fact that I won't be able to lift my 3 y.o. for a while now), but I am getting used.
So, thank you everyone for your responsiveness and warmth.
no zap
Comment posted by Skyking on 2010-09-10 06:23.
I had CABGx6 bypass and valve work done and I have had my PM for 70 days or so now.... When I went off the amiodarone I was CONVINCED that I was in A Fib and the pace maker had gone off a time or two, so I called the EP and went in to see the tech from medtronics, he downloaded and printed it out and I was SURPRISED to find out that my H/R was completely normal and the PM never once fired.... in fact, it has done NOTHING since it was installed.
So, I attribute this to not remembering or maybe never knowing how a normal is supposed heartbeat feel in your chest. It was foreign to me.
I dont believe I needed the PM, I view it as overkill and if I had a chance to do it again I would opt out of it, but my situation is not the same as anyone else, each of us must make our own decisions on what we will allow these docs to do to us. I know their trying to help, but a 77K dollar PM that has done NOTHING in almost 3 months is suspect to me, and I usually expect the worst when it comes to money and motivations....for anyone, docs included
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