Problem with a lead?

Does this sound familiar to anybody?  

I am realizing tonight I may have a problem with a lead, and I would assume my RV. I have had the oddest feeling for the last week.  I am getting a slight vibration, almost feeling like something is crawling in me, between my shoulder blade and spine, deep in my chest, feeling it in my back and not my front. It lasts several minutes at a time (trying to pay attention to duration and frequency) and are sometimes more intense. It's deep, and I'm wondering if my lead may be causing it?  I'm paced around 30% in my ventricle and 100% in the atrium (SSS).

I've been sending daily transmissions and EP hasn't said anything.  Maybe he's looking at things since he increased from weekly to daily.  

I am calling the EP's office tomorrow morning.  I'm concerned due to past SCAs.  


Your symptoms sound all too familiar !

by Gemita - 2020-08-14 03:24:51

Hello Islandgirl,

Yes I get crawling sensations, vibrations and other strange discomfort (like little electric shocks) particularly around diaphragm, chest wall, extending upwards and into upper back.  Can only assume it is some sort of nerve entrapment, adhesions from previous surgery or nerve irritation from pacemaker/leads.  

You might be spot on thinking it is due to a lead or pacing problem/irritation.  Are you getting any inappropriate shocks from your ICD or are you still having heart rhythm problems?   Arrhythmias can often trigger vibration type discomfort in my chest and upper back along with the other nasty symptoms.

What to do about it?  That is the hardest  part.  You could wait and see or do as you are doing and making sure that your leads and pacemaker are sound, particularly with your history of SCAs.  Your daily downloads should allow your doctors to pick up on any heart or pacemaker irregularities.  

I do hope it is just a temporary problem for you that will settle but perhaps a full pacemaker check could rule out a major problem with one of your leads or with pacing in general.  

My discomfort intermittently continues.  During flare ups I sometimes take a short course of a neuropathic pain med (such as Lyrica).  However in my case I have been diagnosed with Complex Regional Pain Syndrome making me extremely prone to sensations like these and pain symptoms which can continue long after the original cause has been successfully treated.

Take good care and I hope for the very best for you

Thank you Gemita!

by islandgirl - 2020-08-15 00:01:18

No inappropriate shocks from ICD.  Lead was placed almost 4 years ago, upgraded from PM to ICD, and ventricular PM lead removed.  

Since I don't pace very much in my ventricle, I wonder if the lead may not be detectable on the Carelink transmission if I'm not pacing in the ventricle at the time of the transmission.  

Yes, I am continuing to have heart rhythm problems, atrial tach 160-180 and occasional atrial flutter.  

It is happening for 3-5 minutes and today at least 10 times.  Sometimes the sensation is very strong and concerning.  

I had 4 apppropriate shocks in December and have been increasing my activity over the past couple of months.  I am hoping things didn't loosen in December and have been more active in the past month.  

I have an echo scheduled next Friday.  

Stay well!


by Old male - 2020-08-23 10:52:59

During first week after implant I had a twitch like muscle contraction in my left elbow exactly timed with my pulse.  Went to doctor and you know it wouldn't happen when you try to show someone.  Soon went away and never had a problem.

Crawling Sensation

by Ancient1914 - 2020-09-28 22:59:41

Well I have had trouble describing what I feel and the term 'crawling sensation' is the best I have heard so far. I get it strongly in most of my body. I think it started 3 months ago when I had a replacement ICD implanted and the pacing voltage in the RV, normally about 2V, has had to be set at 5.1V due to a new RV lead issue.

I am paced 100% of the time and also have permanent AF at around 200ppm although we are working on that.

I do have periods where this crawling feeling is not apparent and I try to work out what the trigger might be. 

Right now the feeling is quite strong from the waist down to my feet and less in the rest of my body.

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