Persistent Band of Tightness/Pain Since Shortly After Pacemaker Insertion

I am a new member who received a pacemaker six weeks ago for brief periods of intermittent complete heart block occuring infrequently. The pacemaker is set at DDI at 50. I am pacing less than 1% of the time. Beginning within a few days of the pacemaker insertion I started having periods of throbbing heaviness in the substernal and epigastric region. About 10 days after insertion this became continuous and became mildly painful. It has persisted since then.

I have a tight band like sensation at the level of the xiphoid process that goes around to the side more on the left on the right. It is intensely tight and mildly painful at times with a throbbing quality. I'm also quite tender on the chest wall in many points especially on the lower right rib cage. I find that any tightness or construction around my thorax or abdomen increases the symptoms and I can't tolerate my waistband, even though I have lost 30 pounds through diet and exercise.

The pain is relieved by Advil, but not the tightness. Lying on my stomach or right side or standing improves the symptoms, and lying on my back and sitting makes them worse.

I have had a cardiac work up with troponin and EKG. I have had an echocardiogram showing that everything is fine and I have no cardiac dysfunction and a normal ejection fraction. I've had an abdominal ultrasound which showed no abnormalities. My stress test was normal.

Does anyone have any ideas about what this could be? Could this be from phrenic nerve stimulation? It doesn't match the symptoms that I have read about ithis, but I can't think of anything else.

The symptoms are really significantly decreasing my quality-of-life. Prior to the diagnosis of complete heart block, I was misdiagnosed as having epilepsy for two years due to the pre-syncopal episodes and occasional brief seizure like activity. I am in fact very happy to have the pacemaker, since I'm now not on seizure meds and can drive again, so I don't think this is stress related.



by CyborgMike - 2020-06-15 02:25:48

Christine, welcome to the club. The initiation is a tall order.

It is normal to have a lot of residual aches and pains from surgery, especially around the wound sites, left arm, upper body, etc. These can last several months or longer. That said, what you describe doesn't sound surgery related. It seems to be too low, based on how you describe it.

I had two reactions when I read your post. 1) before my PM when I had arrhythmias or my heart wasn't keeping up with O2 demand, I always felt it low in my sternum as tightness and pressure, almost like heartburn but more painful and tighter. You indicate you have "complete heart block" yet you are only paced 1% - that doesn't sound right. Do you know what your heart is doing when you feel the pain/tightness? Is it a low bp? high bp? Lying on the right side is generally better for cardiac output. so, ?

2) the second reaction I had was it might not be heart or PM related. My wife and I have both had c. diff in the last two years. It is common after being in a hospital and having a lot of antibiotics. It is painful in the lower sternum area about 30 minutes after eating. I thought mine was related to my heart, but it wasn't. There are lots of other GI related issues that could cause similar symtoms. Does it corrolate to eating?

Response to Questions

by Christine11 - 2020-06-15 02:45:43

CyborgMike - I have thought the same things as you.

1) The symptoms are almost continuous so I don't think it can be angina or cardiac insuffuciency. The symptoms happen with normal BP and pulse. I have intermittent complete heart block. It lasts about 3 - 8 seconds and only occurs occasionally - less than once a week. I have a 1 - 2 minute period of pacing daily (which I think is inappropriate, but that is for another post), and the symptoms are not worse during pacing, although pacing is incredibly uncomfortable. The real intense tightness which is like a vise is localized just behind my right costal margin.

2) I thought C. diff as well initially, since I have had it before (but not with these symptoms, cramping was in lower abdomen). So I had a stool C. diff toxin checked and it was negative. It is something that has remained on my mind though. It doesn't correlate to eating, I've never had GERD so it shouldn't suddenly start now, and I've had my gall bladder out.

Thanks for the thoughtful response.

Throwing darts...

by CyborgMike - 2020-06-15 22:17:16

Well... At the risk of playing the symptom guessing game (a dangerous sport on the internet), here are a few more thoughts. 
The right costal margin is the liver and small intestine, so it doesn't sound directly associated with your PM. The PM leads usually run high from the top of the heart. 
So... you had your gallbladder out, so you likely know what upper GI pain feels like. Is it similar pain? Have you had your liver enzymes checked? How about SIBO? My wife has gallbladder issues and gets SIBO, gets it treated and feels better, but it comes back. How about an ulcer? Appendix?  Maybe time to visit your GI doc if Cardiologist didn't find anything. 

Seizure meds ?

by Gemita - 2020-06-16 05:23:38

Christine, hello,

just a thought, you say that you are no longer on seizure meds. I wonder if withdrawal has triggered some neuropathic pain ?  Although your troubles started at time of implant, has stopping these meds at the same time too perhaps unmasked another medical problem ?

I was taking Lyrica (Pregabalin) for some years and on stopping developed a band like tightness around my diaphragm (as in MS hug) and similar symptoms to those you describe.  I still get these problems intermittently but a visit to the neurologist might bring some answers for you.  Mine turned out to be caused by my complex regional pain syndrome, a debilitating condition and treatment was Lyrica again !

Your situation though does sound more muscle/nerve, inflammation related especially around diaphragm/chest wall, or due possibly to effects of pacing causing irritation, trauma to a nerve. If your quality of life is so affected, I would seek further advice and additional imaging?   Presumably you have had both cardiac and lung investigations ? Time though is often a great healer and it is still early days since implant, so maybe waiting a wee bit longer before rushing in might help. 

I have gastric issues and a course of PPI's is proving very helpful at the moment.  Your general doctor may want to try this first to see if it helps before doing any invasive gastric investigations.  I wonder too whether a very short course of an anti inflammatory med might help (although I see it does and you have been on Advil) - anti inflammatories might worsen any gastric problems though if you have developed them, but PPI's can be protective. 

I wish you well and swift answers and please let us know your eventual diagnosis 

Reply to Gemita

by Christine11 - 2020-06-16 15:12:47

Thank you so much for your insightful reply. These are super suggestions.

The one term that jumped out at me was "MS hug". I have never heard of that, even though I am very knowledgeable about MS. On looking it up, it matches my symptoms exactly.

I do have multiple CNS lesions, which is why I was misdiagnosed as a seizure disorder. The top on the list of possibilities is MS.

In reading about this, it also mentions the symptoms can be caused by costochondritis, so it would be great if that is all it is. 

I think I will try a course of anti-inflammatories and if that does not help, talk to my doctor about trying pregabalin (Lyrica).

I agree with your comment about giving it time.

Just reading a description of "MS hug" was very helpful to me, in that an entity exists that fits these symptoms, as what I am experiencing just seems crazy to me.

Rest assured that I am continuing medical follow up. It is just difficult when I do not know if the symptoms are pacemaker related, neurological or musculoskeletal. As well, the interest level of the medical professionals in helping solve the problem varies.

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I just want to share about the quality of life after my pacemaker, and hopefully increase awareness that lifestyles do not have to be drastically modified just because we are pacemaker recipients.