PM need adjusting, heart attack or something else?

I had my PM implanted in about August last year and had some initial hassles with max rate issues which I discussed in these forums (and got some great advice).

I was awarded the PM for 3rd degree AV block (bradycardia) and now occasionally pace for 1st, 2nd or 3rd degree block. The cause – who knows? Possibly hereditary (both parents have ischemic heart disease although issues did not develop till late 70’s - no PM tho - and I’m late 40’s). Its also possibly linked to the Radiotherapy I had for Hodgkin’s disease in 92 (this is a cause for debate amongst the various doctors I see but there seems to be more and more statistical evidence for this these days).

I’m just interested in getting peoples input and seeing if anyone has experienced this sort of thing themselves?

I’ve been active and had few problems till recently – even spending about 3 weeks total skiing in Canada in December and March. Over the past 4-6 weeks the “pacing feelings” I sometimes have became much stronger and far more noticeable. According to the PM stats I don’t pace very often.

The feelings became worrying enough that I returned to the Cardiologist and the PM tech found a number of examples of PMT (pacemaker mediated tachycardia) occurring. To overcome this they increased a delay factor in the PM’s operation (unsure which one). Result was the discomfort/pain went away immediately (was actually having a PMT episode at the time of adjustment).

The next couple of days were ok and then I started developing the most incredible shortness of breath – I couldn’t walk 50 metres without needing to rest as if I had just run a race. Back to the PM tech and Cardio and they switched Rate Response on and shortened the delay they had previously increased. SOB gone – did a rapid 5-6kmh walk around a 500metre block leaving the doctors with no SOB, no pain.

Then similar story over the next couple of days I started developing some serious chest pains (and a fear of heart attack as I do have some ischemic heart disease and mild stenosis of the aortic valve). There were 3 days that were particularly bad and then they dropped right off for the following week, still occurring but without the extreme severity. The Cardiologist booked me in for an echocardiogram and a radiation traced stress test as he felt the pain was non-pm related cardiac issues as I didn’t pace much!

Just had my review with him on Monday. The echo showed all was fine and whilst the valve had degraded slightly however it was still mild stenosis. According to the Doc the radiation stress test showed that the pains were not due to heart function issues (a la classic heart attack from vascular/arterial blockage). His words were that this test was more instructive than an angiogram (because I asked if I should have one). He’s referred me to a gastroenterologist for further checks as to the pain but having had a hiatus hernia since all the vomiting I did in 92 (radiotherapy), I am quite familiar with those pains and suspect there isn’t much to be found there!

The check of my PM this time showed it had been operating more often and pacing me “wrong” at times so the rate response settings were adjusted.

Again sensations changed and yesterday afternoon/evening I had some very discomforting short duration sessions of whatever accompanied by high BP and pulses of 120-140. They lasted from 2 to 10 mins, the shorter ones being milder. Only a couple of mild ones this morning (almost normal stuff actually).

One of the oddest things with these pains (both the initial ones and the more recent ones) is that they generally don’t occur with exercise or exertion (which to me meant they weren’t classic heart attack pains). The most common place to occur is actually when I am driving and have been sitting in the car for 10-15 minutes. The latest style of discomfort is a bit more exercise linked but still occurs more often on rest than with activity.

Sorry for the long post – looking forward to seeing if anyone has any ideas or experienced something like this!
Thanks
Grant

11 Comments

A thought

by ElectricFrank - 2012-05-29 02:05:40

It seems like your symptoms come, go, and change randomly. You have a symptom, they adjust for it with good results for a short time, and then the process repeats itself. I would be suspicious of a detached or defective lead. A detached lead can flop around in the heart and change it location of contact. Various areas of the heart wall have different pacing characteristics so each time it moves a new set of adjustments are needed.

Just a thought.

frank

I agree with don

by ElectricFrank - 2012-05-29 06:05:25

He and I seem to be the only ones nutty enough to accept the psychosomatic possibility.

I've never quite understood why folks would rather have terminal CHF than consider an emotional component.

frank

Hmmm

by nicbridge - 2012-05-29 08:05:12

Thanks Frank, I hadnt thought of that (leads). I'll ask them and see although I would have thought they might of checked that with the echo too?

Then thanks again Frank and Don - I too was thinking along the "all in my mind" track. Its not an anxiety attack type phenonema - having dealt with close friend that suffer those I could discount that as the onset symptoms are quite different - often occuring in a low stress situation without any triggers.

There is an anxiety issue here but I believe it relates more to a hypersensitivity to other sensations when going through this. When I have the PM related ? feelings I then become hyper aware of every little twinge in my body - "ooh, there was a pain in my arm" etc and I tend to catastrophise that.

I think correctly I can say the actual discomfort/SOB issues are real. I am able to tie these occurrences to escalated BP and pulse via my home BP unit - but I would accept the arguement that could be my anxiety doing that.

However, on 2 of my 3 recent visits to the PM tech there has been a defined issue in the downloaded PM data - firstly the PMT was as clear as anything on a graphical representation of the various pulse responses - agreeing very well with times I had recorded when feeling odd. The techs description of PMT also matched my other symptoms. Not much was said re what was found on the second visit but again with the third and rate response turned on there was data present that was explained to me as a settings issue due to me being paced at a lower rate than my body required.

Oh and Don - one of the driving routes this regularly occurs on is on outer metro/rural roads where traffic is light and none of those kind of stress triggers are present. Funnily enough work - where there can be many triggers - rarely causes problems.

I also need to ask the tech if the driving issue could be related to Rate Response "misjudging" the situation I am in and responding incorrectly - not that familiar with RR yet!

If I find out anything interesting I'll post it here. My "painfull" symptoms have lessened today but I still dont have the aerobic capability I should given my normal level of activity!

Grant

A follow on thought...

by donr - 2012-05-29 09:05:47

...behind Frank.

You have had enough diagnostics to sink a small ship. A chest X-Ray can/should easily confirm/rule out Frank's hypothesis. You have not mentioned having one of those. A new one, compared to an old one should tell if the leads have moved.

When analysing a problem, ALL possible alternatives must be considered. The one I did not read in your nice, long, comprehensive post is PSYCHOSOMATIC. People don't like to include that one, even cardios - it implies that their patients are nutso!

Yet, psycho problems abound for cardiac patients - especially those who have had significant interventions - like CABG's, valve replacements, etc. They ALSO occur for all the good folks who have only had "MINOR" procedures - like PM implants. They start w/ ANXIETY, Stress & work their way into the big D - Depression.

The anxiety issue can mimic very nicely the physical symptoms of heart problems. Very badly, too, I will assure you.

A clue for me that you should consider this one is the statement:

"The most common place to occur is actually when I am driving and have been sitting in the car for 10-15 minutes."

ZOWIE!! What can be more stress/anxiety producing than driving? Especially in heavy traffic. Often the trigger for an anxiety based symptom can totally disassociated from the normal things we would expect - like a heart attack, etc for a cardiac patient.

Consider it - after all the other physical issues are dealt with, this is left over. To paraphrase Sherlock Holmes "When the impossible is ruled out, whatever is left, no matter how improbable, must be the cause."

Oh, BTW: I write about this because I've BTDT.

Good luck on this one.

Don

Anxiety issues & cardiac symptoms

by donr - 2012-05-30 01:05:21

Nic: Just consider them as a possibility, lest, as Frank says very eloquently, you may be diagnosed w/ terminal CHF!

The mind can do weird things w/o us knowing it. And - they can be triggered by all sorts of things. Things that we do not even realize are happening. The sub-conscious runs its own game at its own pace & on its own schedule.

The worst part is that when you have heart electrical problems as we all do, they can mimic the heart symptoms. At the same time, you can have authentic heart symptoms & the cardio passes you off as a weirdo of some kind, always complaining! In the FWIW Dept, years before I had my firstv symptom leading up to my PM, I had a couple episodes of PAT (Paroxymal Atrial Tachycardia) was the diagnosis. Trust me, they were very REAL! Brought on by a very stressful job I had at the time. It took quite a while to even begin to sort out what was the stressors bringing on the anxiety issues. And - in the end, it turned into a sort of "None of the above" of the many guesses as to the triggers.

The anxiety symptoms are very real, just different, & just as debilitating & do not show up on any test.

Some are so subtle that they are hard to recognize unless you see a lot of them over time & start recognizing a pattern.

Good luck.

Don

Real or not

by ElectricFrank - 2012-05-30 01:05:30

Grant,
One thing to keep in mind is that anxiety and other such things produce very real symptoms and test data. There is a closed loop that develops.

A common example is the PVC syndrome. Something sets off a few PVC's, which scares the unsuspecting person. Fear releases adrenaline which stimulates the vagus nerve system and promotes increased PVC's. Around it goes. The frightened person tightens the diaphragm which is a natural response to fear and experiences shortness of breath.

Now the question is whether the whole thing "all in my head" or "is it real". This is the way most doctors will look at it. In reality it is the wrong question. Most if not all control loops in the body include the brain.
Even in the "very real" situation of an active heart attack in progress there are brain mediated feelings and effects.

By the way on the driving situation, sitting in the normal position upright with hands on the wheel especially after a meal can cause pressure on the the diaphragm and trigger a round of symptoms.

I guess the bottom line is that our bodies are complex devices that don't conveniently limit problems to one organ or area.

Good luck,

frank

How about this one

by ElectricFrank - 2012-05-31 01:05:24

My grandfather on mothers side was expected by docs and family to be lucky to get past his 50's. He was diagnosed with advanced angina and was using nitroglycerin, had severe ulcers that at one time had him in the hospital bleeding so bad they were transfusing blood into both ankles.

Then it happened. I got the call one morning from him that he had found his wife in the living room dead. We all thought that was it for him, and it would just be a matter of months before he followed her. A few months later he announced that he was moving from Calif to Florida to live with one of his children. About a year later we received a picture of him with his "girl friend" he was shacking up with. That was the beginning of a long and healthy life for him. He died at 92. Amazing where all the angina and ulcers went.

I've since found old family pictures of his early days and he was quite a character. I guess when he married my grandmother he "settled down". Talk about "all in your mind".

frank

Follow up

by nicbridge - 2012-05-31 06:05:22

This has been weird but we might slowly be getting somewhere.

The very strong sensations have dropped away to something that is unpleasant but not frightening! It occurs mostly when driving but rough or curvy, hilly roads where I tend to use lots of acceleration. On straighter smoother roads it occurs less. It can also occur (but not as often) with a sudden change in activity level followed quickly by inactivity - e.g. get up from chair run up 3 steps, stand around. The event is characterised by high pulse (110-130 whilst inactive) and left side chest discomfort. Funnily enough a mild "run" was just triggered sitting at the PC - but I was drinking a glass of wine at the time!

The sequence of events I've been through resulted in the Rate Response of adaptive pacing algorithms being turned on in my PM about 10 days ago.

Reading here and elsewhere it seems the adaptive/RR pacer takes readings from an onboard a a acceleration sensor, body temp and other factors and uses an algorithm to adjust pacing.

It seems its possible that the sudden movement of rapid acceleration in a car and cornering (uphill hills road for example) could be mistaken by the PM for my activity?! There are various parameters that deal with sensitivity and responsiveness so the techs are going to look at that Monday. My PM seems to havel its default settings adjusted for 90 year old invalids and not people who actually are active (my first problem was the upper rate limit being set far too low back in Sept last year!)

It probably hasn't helped that I've been putting a new and very zippy car (well its not a sports car but its a lot zipper than my old one) through its paces and I live in a hilly windy road area!

And Frank, your tale above is something I have met before with people I know and even my self - Visiting British Columbia has exactly the same effect on me!

Grant

oh, and PS

by nicbridge - 2012-05-31 06:05:24

I also got a copy of my echocardiogram from last week - the leads are still in the original place!

Great

by ElectricFrank - 2012-06-01 02:06:48

We're getting somewhere on the whole thing. I'm beginning to think you have a combination of an overly sensitive RR setting together with a tendency to become anxious about the sensations. You may want to look into having it adjusted. Medtronic has a program that analyses your hearts response to a tread mill run and designs the optimum setting for the RR. I don't know if the other manufacturers have the same.

You might try my weird approach to my early response to weird thumps and bumps. I just reminded my heart that if it decided to quit it was going to die along with the rest of me. Then I went about my business. Instead of being protective I sometimes went the other way. I remember one evening when I was really having some heavy arrhythmia, I jumped on the exercise bike and pushed my HR up to around 130. Strangely everything settled down.

Doesn't work with everyone, but I'm wierd.

frank

Another Visit

by nicbridge - 2012-06-04 07:06:58

Ok, another tune-up. Apparently my PM was using a Biotronik feature called CLS pacing which is claimed to be better (by Biotronik) than conventional accelerometer based rate response. Its apparently more about measuring your physiological responses than simply using an accelerometer to determine what you are doing.

As a note about anxiety - its meant to be more responsive to adrenaline in the body etc and could respond to anxiety which may explain the initial problems with severe pain which calmed down as I got used to it. It also explains my driving issue as I've been trying out a new and zippier car than my old one on the curvy hilly roads around home - adrenaline rush! (lol)

They have decreased the sensitivity and adjusted a couple of the response parameters and we will see. I have a lousy head cold at the moment so checking out SOB and my feelings is not going to be that clear for a few days!

Interestingly enough whilst historically I have only been pacing 1-2% of the time I am now pacing much more now probably around 50% of the time.

You know you're wired when...

You get your device tuned-up for hot dates.

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I'm 35 and got my pacemaker a little over a year ago. It definitely is not a burden to me. In fact, I have more energy (which my husband enjoys), can do more things with my kids and have weight because of having the energy.