pacemaker syndrome

I was implanted with a dual leed PM 3 months ago. I thought I was doing well enough, though not real sure what my new normal is. I live at 3200 elevation and seemed to be doing okay. Like I have done for the past 13 years went to our cabin at 6300 elevation, and have never experienced what I did this time. Of course now I have a PM. The day after I arrived my breathing became more labored with very little exercise. My first indication would be a tightness in my neck, then heavy breathing, and sweating. I felt my PM going off, actually thumping in my chest! There were times I felt light headed, and a couple of times I darn near passed out and had to lie down very quickly. This experience happened every single day, sometimes several times a day, and occasionally would like 2 hours. Called my heart specialist who was no help at all, though he suggested that I might have asthma. I went to the local clinic and they ran tests for asthma, did blood work and told me I didn't have asthma and blood work was fine. I called my heart specialist several times and talked with clinicians in his offer to no avail. They weren't helpful at all. I'm not sure what to do at this point. I had to leave our cabin early and I'm back at 3200 elevation and do feel better. I'm frustrated because I know this is not normal for me, and it is not in my imagination. My body was literally stressing during that period, and even lost weight. I don't know where to turn.

2 Comments

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by Tracey_E - 2013-07-01 10:07:59

I'm sorry your vacation got cut short! There is a missing piece to the puzzle somewhere, you just have to persevere until you find it. What a pain your doc wasn't more help.

Ok, lots of random thoughts, maybe one of them will trigger something and be helpful ....

Have you been able to exercise since you got the pm? Trying to exercise would be comparable to being at the higher elevation. It's common to need the settings tweaked to accommodate activity.

Were they able to interrogate the pm at the local clinic? If you can pinpoint the times you had the episodes, you see what the pm was doing at those times. If it hasn't been done yet, get it done asap because the pm has a limited number of episodes it can record so you want to find out what you can before the data gets written over.

I doubt if it's pacemaker syndrome. It wouldn't happen that quickly, it usually takes years, and it wouldn't be triggered by altitude. The pm is not affected by altitude so it's either settings or something with you.

Could you have been dehydrated? I live at sea level, my parents live at 6500. I am more sensitive to dehydration at higher elevations than my family is. I start chugging when I get on the plane and continue chugging much more than I would drink at home for the first few days. I usually take it easy the first day, by the second day I'm skiing or hiking. I still get winded more easily than the others, but I can keep up just fine as long as I'm super careful about water and electrolytes.

Colorado Sprimgs...

by donr - 2013-07-02 07:07:55

...is at 6000 ft, also. A lifetime ago we went there for our #1 Son's wedding, leaving Davenport, Iowa at a mere 751 elevation. I was flabbergasted at the affect on my breathing due to the elevation change & reduced Oxygen level. Part of the reaction was psychological, I figured that out rather fast, so just accepted the fact & operated at a slow pace.

When you went to the local clinic did they happen to put a pulse oxymeter on your finger & tell you what your O2 saturation was? That could explain it all. That number could have been in the tank & you may not have realized it.

Suffocation is a truly fearful experience & it does not take much of a deprivation of O2 to bring on that primal response, all of whose symptoms you described.

PM's DON't thump - hearts do. And they have to do that when the required output to satisfy the brain's requirement for O2 is not being met. A simple test at the local clinic could have answered the question about O2 deprivation. Just stick an O2 gizmo in your nose & see what happened to your breathing & how you felt. Did they do that for you?

I'd say that your body should have been stressing AND - you had a new variable thrown into the breathing game - your PM. The unknown is a fearful environment when it comes to breathing.

Let me give you two personal examples: 1) I went into a a section of a chemical plant that required wearing a full face mask to protect against potential contamination. I was going to climb up 5 flights of stairs to inspect equipment at the top level. At the third level, I was in shear panic mode - I could not breathe; heart was racing, lungs felt like they were going to burst, panting like mad - as best I could because i could not fill my lungs. headache, light-headed - felt like I had a constricting band around my chest. All the symptoms of poisoning by the potential contaminant. This was WAYYYYY pre-PM. I made some wimpy excuse about having seen enough & left the building. Walked outside, ripped off my mask & sat on a bench. In just a few minutes, I felt fine. That told me I had NOT gotten exposed to contamination. Then it suddenly struck me - I couldn't breathe because of the difficulty of pulling air through mask filters! I was too embarrassed to talk about it to my companions - I should have known better. 2) Fast FWD a couple yrs & I went back to the same facility, went to the same section of the plant, donned a mask & climbed all 5 flights of stairs to top, looked at equipment & went back down. This time, I KNEW what was happening to me & had no difficulty accepting it - the fear factor was gone.

3) Working at a facility that had a process requiring a huge vat of liquid nitrogen. The first time I visited that part of the plant, I was leaning on a railing near the vat, watching the clouds of gaseous N2 as it floated above the vat. Naturally the nitrogen diffused throughout the area & reduced the O2 concentration locally. I felt some of the same effect as before w/ my breathing, but now realized that I really was having trouble breathing - this was NOT all psychological. I moved away from the vat & the effect went away slowly.

In your instance, I'd first have bet on this effect, rather than the more complex ones of asthma or PM issues - although those would first come to your mind. A natural response that the clinic should have thought of immediately, but apparently did not, based on the facts that you gave us.

Don

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