"Jitters" and Shaking after Pacemaker

Hello!

Thank you for taking the time to read this.  I am writing this on behalf of my mother, who recently received her 1st pacemaker at the age of 69 (almost 70 years old).  She had her procedure on July 30th and ever since then, has been experiencing what she calls as internal "jitters" throughout the inside of her body and shaking. 

Until February of this year, my mom was healthy and a "young" 69 year old.  In February, she then started to experience bradycardia & arrhythmias.  After many months of doctors appointments and other procedures, it was decided that a pacemaker was the best - and only - option.

On July 30th, she had her pacemaker implanted and a few days after her pacemaker procedure, she experienced severe chest pain.  She went back to the doctor and it was determined through her symptoms, EKG and ultrasound that she had pericarditis as a complication of the pacemaker procedure.

She seemed to heal overall from that.  They also wanted to do a CT scan, but I was the one who asked that she wait a bit as I didn't want her to get more radiation than she had already had in the previous months.  They thought the CT scan would just double confirm all the lead lines were connected.

Now it is August 9th so it has been a month and few days from her pacemaker procedure and she is experiencing internal "jitters".  Her whole body (inside) feels as if it is trembling or shaking all day, all night.  In addition to the "jitters", she is also experiencing pain on the left side of her chest (around where the incision was made).

I chalked it up to anxiety - at least the "jitters" part, but I dont know if anxiety would manifest itself in shaking the entire day and night.  I am praying that maybe the Pacemaker Club warriors have experienced something similar.  She cries daily saying she hates the way she feels and this isn't a life for her.

The only difference was the pacemaker.  The packemaker is working 71% of the time (its set at 60 bpm or above) so she absolutely needed it, but has anyone experienced the "jitters" as a side effect of the pacemaker.

And/or has anyone experienced pain around the incision site a month after the procedure? I thank you in advance for your guidance and sharing your story.  I feel hopeless and as a daughter, I want to help - I just don't know how to.  Thank you from the bottom of my heart!


7 Comments

Not sure where to start

by crustyg - 2021-09-09 13:08:10

Remote diagnosis is difficult enough, and always unwise.  Remote-by-proxy via you, the daughter, is even more foolish.  But that's never stopped me yet - probably a learning defect at my end.

I'll be blunt.  The CT-scan that you stopped was *not* to "double confirm all the lead lines were connected."  The real reason that the docs wanted this was to try and establish where the tip of the RV lead was (although it can be difficult in CT due to scatter artefacts), because their concern was that the little metal screw at the tip of the RV lead might have partially penetrated through the ventricle wall and caused the pericarditis. The radiation dose from fluorimetry during insertion of the pacing leads is low, and the extra radiation from a potentially diagnostic CT-scan to try and help them decide whether to remove and resite the RV lead was *never* a real, valid concern.  Medical uses of ionising radiation are very carefully monitored and regulated (within one imaging dept, if the docs went crazy and ordered a whole-body CT-scan every other day, the imaging folk would stop them), and while it is true that for almost all of us medical imaging radiation represents the bulk of our annual exposure, the doses are tiny compared to doses absorbed by folk who work with radiation (e.g. cancer physicists, nuclear medicine specialists) - and these people have better survival rates than the general public. And you should see the doses of radio-iodine that we give to patients with some thyroid cancers - their own families have to avoid them for 24hr - and they get better.  Even a long-haul flight (remember those?) gives you a good radiation dose.  Our bodies are radioactive (K40), and we have evolved to have mechanisms to repair a lot of cell damage due to radiation (mostly UV, but it's the same genetic damage).  Please don't interfere with your mother's doctors' advice when it comes to imaging - I know you're in the USA and *some* docs overuse investigations...

OK, rant over.  It sounds as though your mother's symptoms are quite possibly caused by her PM activating the muscle of the diaphragm, which would feel really odd and might well be felt as 'jitters'.

Pain at PM incision site after a month.  Yes, easily.  New PM patients get twinges of pain around the PM or the incision site for months after first implantation.  People vary, some get more pain than others (there's a survey running here to put some numbers to this).

Last PM club contributor who had a pacing wire puncture the ventricle wall only just made it - the ones who don't make it tend not to contribute.  If this were my mother I'd be back with her docs pleading for them to recheck where the RV lead is, in case it's nearly through the heart muscle.  I'd get the EP-techs to check the PM settings (impedance, pacing voltage) and try - briefly - stopping pacing and see if the horrible feeling goes away.  In short, I'd take this seriously.  It's not anxiety.

Thank You, crustyg

by Waldorfgirl - 2021-09-09 13:30:00

Hi crustyg,

Thank you for your insight and I appreciate your knowledge and wisdom through all of this.

Just to clarify - I know we have 2 separate issues: the PM incision site pain and the "jitters".   Are you saying the RV lead could be causing the "jitters" if it has not been placed correctly/punctured? 

Or are the jitters as a result of the pacemaker itself (and not the pericarditis, RV lead placement, etc) activiting the diaphragm muscle?  Her biggest complaint is the "jitters"/shaking she feels within her body.

She saw the electrophysiologist yesterday - the tested her PM and its working well.  They lowered her settings from 60 bpm to 50 bpm to see if that could help.  Do you know how long it takes for your heart to "reset" or "recalibrate" after pacemaker setting adjustments?

Jitters

by AgentX86 - 2021-09-09 18:01:26

I know I'd sometimes feel "jitters" when I was in Afib/flutter (or if I drink coffee).  I sometimes still feel it, though I can't feel myAflutter directly.  It doesn't happen that often but it is disconcerting when it happens.

How long to 'adjust' to changed PM settings

by crustyg - 2021-09-09 18:27:20

I suppose there's an element of person-to-person variability: however the direct effect of the PM on the heart changes as soon as the PM is adjusted.  What that feels like - and how long it takes for the patient to notice any difference depends a lot on the patient's heart health etc.  I don't think the heart has to 'reset' or 'recalibrate' after PM changes, that's not how this works. And you say that your mother had arhythmias: I agree with Agent that many of us feel palpitations or 'jitters' when our hearts aren't beating normally - I did.  And don't forget that for some people odd heart sensations actually produce anxiety and not the other way around.  But you know your mother and I don't.

Yes, I think it's very likely that your mother's sensation of 'jitters' is caused by the PM's pacing output.  But that's the risk (foolishness?) of attempting remote diagnosis.  One thing we all learned as trainee doctors, is that listening to the patient tells you the answer in about 80% of cases.  The trick is to avoid projecting onto the patient what you want them to have, and instead putting aside personal prejudices and just listening.  My prejudice here is a) no more radiation, b) it's anxiety. So I may be wrong, but that's where I would start: a) get the imaging done, b) take it seriously.  All good EP docs arrange a PA and lateral CXR immediately after pacing wire implantation, and the lateral view is especially important to prove that the RV lead has been implanted into the thick muscle between RV and LV and *not* into the much thinner anterior wall of the RV.  It can easily look correct with the top-to-bottom view during the implantation real-time 'scope view - the lateral view shows the difference.  The quickest way to test out the theory that the 'jitters' here is PM pacing output is to turn it off for a few seconds: it's a routine check for PM patients (like me) whose natural pacemaker has failed.

"jitters"

by Julros - 2021-09-09 23:18:09

I can attest to having muscle stimulation after pacemaker implantation. Initially, I experienced chest muscle(pectoral) and diaphramatic stimulation which was visible. I also had more pain than I expected. Once the wires had scarred into place, the output was lowered and there was less pectoral jumping. I continued to feel intermittant diaphram twitching, and finally I was seen by the pacer rep who was able to sucessfully change the settings on my LV lead. And I experience nausea when I am in atrial flutter. 

Jitters

by Selwyn - 2021-09-10 12:34:11

This all depends on what is meant by 'jitters'.

The rhythmic contraction of chest muscle timed to the pacemaker pulses  of the diaphragm as a complication of pacing ( in my case changing the setting from unipolar return of current to bipolar- lead return of current, sorted the problem) is one thing, and  fast twitching is another.)  I have never heard of this affecting limbs. 

Of course, people feel ' jittery' with anxiety. It is unusual to have this actually to disturb your sleep.  This is more of a whole body thing. 

Crustyg gives sensible advice about radiation risk  and possible complications of lead placement.  Whilst multiple CTs have some risk, I have been reassured by my radiologist that a CT scan is about the same as 1 year of background radiation.  I have had more CTs than I care to think about.  

In my childhood, we would go into the shoe shop and the shop assistant would check the fit of the shoes by X-ray fluoroscopy! So far my feet have 'stood' the test of time!

Shakes or jitters

by TLee - 2021-09-13 16:39:21

I remember the first time it was discovered that I was experiencing a-fib. I was in the hospital after a severe asthma attack. I was doing better, about to be moved out of ICU, was even sitting in the chair reading the morning paper. I was wearing that big, clunky monitor that they always put on you in the hospital. All of a sudden 3 or 4 nurses flew into my room & started fussing around me, saying that I had a-fib & asking me all kinds of questions about it. I didn't really have a clue what they were talking about & it scared me quite a bit. They put me back in the bed, & I sat there & realized that I was shaking from head to toe, It was uncontrollable, and it lasted quite a while--I even remeber saying, Boy, I wish I could stop shaking! To think that I went from sitting quietly reading the paper to this--Wierd! I believe that in my case it was nerves & not any type of heart-related symptom. 

If your mom was really traumatized by the surgery, the recovery, or the idea of having the pacemaker at all, it COULD be anxiety. Best to get everything checked out though--Good luck

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