Running with the wrong ICD settings.

For the better part of a couple years now, I have been baffled by inappropriately high heart rates that seem to bring with them, inappropriate fatigue, somewhat mirroring symptoms of running/training to hard. (over training syndrome). Initially when I started to notice these symptoms, my first reaction was to back off on the amount of running I was doing. But just simply cutting back the miles, and even slowing the pace seemed to produce no effect.  So after going right down the list of possibilities, I started seriously thinking about the things in my lifestyle that could potentially bring about a higher than normal heart rate, accompanied with higher than normal fatigue levels. I completely re-evaluated my diet habits and failed to see how it could be the cause. A big fear of mine, and with good reason, was the simple fact that advancing heart failure could produce the same identical symptoms, if in fact heart disease were to ever rear its ugly head again. Not a lot of comfort in that thought, but a fact I must always consider and take seriously, given my cardiac history. Gave me lots to think about for sure…

As excellent as I think my aerobic conditioning should be after 6 years of regular and consistent exercise that has included plenty of seasonal periodization/recovery so as to not over do it, my heart rate has not  followed suit aerobically speaking, but instead, has taken the high road, always hanging on the high side of what works out to be my aerobic threshold, even when running a very slow pace. Based on the lower intensity exercise I have been doing the last couple of years, having a lower aerobic heart rate, or lack of I should say, shouldn’t be an issue. But from what I have been seeing with the limited heart rate data, I believe my heart has been running 20-30 beats higher than it should be, and this seems to happen almost immediately anytime I exercise. And this increased heart rate doesn’t just gradually ramp up either. Instead, it ramps up really fast, and equally as strange, upon ceasing the activity, the high heart rate will drop, almost every bit as fast as it ramped up, but not before it feels as if its ramping up even higher for about 30 seconds after the activity stops, and then just like that, the heart rate will drop back down somewhere around 110-120, where it should have been all along.  Weirdest feeling…

 For the past two years I have done very little anaerobic exercise, instead staying focused on increasing the fitness level in my lower aerobic zone by running much slower speeds. I thought my previous neglect/training in this lower aerobic zone, might be partially to blame for the higher heart rates I kept seeing. But, moving on, after two years of only working to condition in that lower zone, my heart rate still erratically races off, going higher than it should, any time I break into a run. The heart rate ramps up and down as if something is controlling the heart rate with an on/off switch…

I can drag/pull a light truck tire behind me while walking a 15 minute pace  for miles and my heart rate isn’t going to break 100-110.  But, drop the tire, and break into even the easiest/slowest of runs/jogs, and immediately my heart rate appears jacked through the roof. Same thing comparing the data from biking to running. The biking data always reads much lower/stable and shows a consistently lower heart rate then running or xc skiing.  

After coming to the realization this was happening, my immediate thoughts were to question the settings on my ICD.  But to further compound the mystery and create confusion, as well as raising my anxiety level one call at time, each time I called the pacemaker clinic and asked if my device was somehow causing this,  I was always told the settings currently programed into the ICD would not allow it to pace my heart in this range. They also told me, that according to the history/data stored on the device, no pacing had taken place. I really had no choice but to take their word(s) for it, since they are the only ones who can actually see the data short of me filling out a bunch of requests and pissing off everyone in the process, just so I can personally view the data printed out on paper. Printing all the data out on paper was actually the norm for my first ICD, as this was prior to remote monitoring such as currently the norm.

On the last call I made to the pacemaker clinic less then a month ago, I asked the tech to recheck the device settings since I still believed I was being paced. As was the norm, the person on the phone at the pacemaker clinic repeated the same mantra to me, of how there was a zero percent the device was the cause of any problems. The tech went on to tell me instead, how the problem(s) I was encountering, were most likely on my end, such as with the personal HRM I was trying to use possibly being faulty, or, one of the more frustrating responses, “maybe I shouldn’t be running…?”  I was being treated like the problem was all in my head, caused by running, or both. At least that’s how I felt by the time I would get off the phone each time I made that call. Instead of the pacemaker clinic people genuinely listening and  hearing what I was saying/explaining, and then  helping me to find a solution by actively seeking/searching through the available data that is recorded on my ICD/device, (data only available to them, even though its stored within my body… weird hu…?),  they would instead leave me with the impression they seemed to think it unreasonable,  bordering criminal, that I would continually question the settings/setup, and  history on the device, after all, isn’t that the doctors job…? And the doctor would never make a mistake right…?

On one occasion, I almost went ahead and made the required appointment necessary for a face to face with the electrophysiologist so I could ask him about these problems.  But on past occasions he made it perfectly clear that he believed in no way, shape or form, that my healthy lifestyle was too credit for my success at achieving such remarkable health/recovery from heart failure. He not only made this clear to me on several occasions, but while I was in the recovery room after having this ICD installed, he stopped by the lobby to try persuading my wife, telling her she should talk some sense into me, because anyone with my history needs to be taking an assortment of medication since lifestyle modifications alone do not work for people given my cardiac history…

None of his advice was solicited, nor did any of it consider my excellent metabolic markers/health, lack of symptoms, and instead was an obvious knee jerk reaction to the fact my medical chart contained no medications… His advice was given purely based on his very limited knowledge, that I have a cardiac “history”. He knows very little of the history.

This is also the same doctor who when asked how I could facilitate the remote monitoring of my ICD in the event my wife and I spent a couple years sailing the Caribbean, rudely responded by telling my wife that sailing off the grid would be the same as signing a death warrant for someone with an ICD, and that she better bring a magnet. What he meant about bringing a magnet, was of course so she would be able to turn my dead corpse “off”, that way she wouldn’t have to sit for days at sea watching my dead body twitch as my ICD continued trying to restart the heart. At that point, I didn’t know if I should get angry, punch him in the face a few times, laugh really hard, or cry over the sickened state of this current “for profit only” medical industrial complex everyone keeps referring to as health care. This is not health care… Sick care at best…

So after thinking about my previous experience with this board certified quack, I decided to not risk wasting the expense and hours required traveling and checking in for what is almost always a lengthy wait in the waiting room, followed by  a 5 minute face to face with a doctor that would only end with some arrogantly made recommendation to stop running and take some medication. (I know… need to fire this quack and get another, or better yet, someone who isn’t a quack, unfortunately, few choices here in the Northland since our health care system was taken over and corporatized/nationalized).

In the two years leading up to this point, I had slowed down the pace of my running, biking and skiing efforts to a crawl, staying focused instead on slower/easier/longer efforts with lower heart rates, while keeping faster efforts/higher heart rates limited to strides, or HIIT (high intensity interval training) and limited to once a week at best. All of this, was in fact, just a personal experiment to see if I could increase my overall aerobic base, and the rate at which I can metabolize fat, (beta oxidation), to augment the keto lifestyle/diet I have been following for almost the same amount of time. This experiment took place over the course of a couple years and no doubt, I was becoming more curious/excited to see how my body would respond if I reintroduced some faster efforts after sticking with this slow approach for so long.

Since I do in fact feel a bit safer tracking the rate of my wounded heart with a HRM when pushing the limits,  I ordered up a new optical heart rate watch/monitor, and a HRM strap, hoping to capture some heart rate data so I could see how my heart would respond to the higher/faster paces. Unfortunately, after using new HRM/strap only a few times, I became discouraged and disgusted by the lack of accuracy in the data I was seeing. The data appeared very erratic as if my pacemaker was producing interference with the HRM.  

Every time I tried tracking my heart rate, the same thing would happen. My immediate thought, and rightfully so, was the possibility that the settings programed on my pacemaker were wrong, and it was causing the ICD to pace my heart, creating interference on the HRM. On several of the occasions this happened, I followed up with phone calls to the pacemaker clinic. On each occasion, the pacemaker clinic told me my pacemaker was not, and could not, be the cause of the inaccurate data I had been seeing on the HRM. After being told this repeatedly by the people who should in fact know, I became discouraged over the whole ordeal, and just stopped wearing the HRM out of frustration, instead, electing to run in the dark so to speak, as I was totally clueless what my actual  heart rate was.

Then last week, my running coach was helping me get me ready for Wild Duluth 100K and said he needed to see some heart rate data from the training he had me doing, prompting another deep dive into this issue once and for all. So I went to work on the problem, reading everything google could come up with on the subject, before getting busy with some experimenting. Believe me when I say I tried every way known to man, that a heart rate monitor can be wore on a human body, such as on your back, your torso, etc… I tried different types/brands of monitors. I took readings while using different modalities such as tire drags, bike rides, before, during and after breaking into an easy jog/run. Many times along the way I stopped and took my pulse the old-fashioned way, comparing the real time data against the HRM data.

No matter the pace, the warmup, etc…, every time I would start running, the heart rate data would immediately jump to a very high anaerobic rate before quickly becoming scrambled/indiscernible. Weirdest part of it all, I could pull a heavy tire up and down the road for a couple miles at a walk and my heart rate would barely hit 100-110 despite the same exertion level an easy run should produce.   But disconnect from that tire and start running, or better yet, let’s use the term jogging to describe what I was doing, (hate that word haha), and even at the very slowest/easiest of paces “jogging”, my heart rate would immediately ramp up into the 140’s-150’s… Weirder yet, doing a threshold run/walk, I could feel my heart rate elevate, and stay elevated, for about 30 seconds after I would slow to the walk portion of the exercise. This felt really strange…  so strange in fact, that I had been searching/reading/looking for an explanation behind this. Anyhow, it was at this point I figured out that motion, not effort, was to blame for the high heart rates and scrambled data. At this point, I knew my ICD was the cause, no matter the repeated assurance from the pacemaker clinic to the contrary, I believed what I thought should be just plain common sense.  

So this time around, instead of calling the pacemaker clinic like my previous attempts to solve this mystery, I instead called a friend, who called a friend, who put me in touch with someone, who put me in touch with someone over at Medtronic who knows a thing or two about that ICD embedded in my chest that’s connected to my heart. After less than a 10 second explanation of the problem, this person knew of a potential cause, telling me my ICD has what is known as an “activity tracker” that when turned on, would indeed induce pacing, not based on heart rate, but  simply based off movement, as measured by the accelerometer built into the device. After thanking the guy from Medtronic for the info and hanging up the phone, I immediately called the pacemaker clinic back, and once again asked they check the settings, specifically checking to see if the activity tracker was turned on, or off… I was put on hold for a short time while they checked to see what the settings were and after a brief time of listening to really horrid/crappy elevator music, the tech came back on the line and told me the activity tracker was in fact turned on.

Many thoughts started racing through my mind that point. I was happy to have the cause of this problem  known so as to be able to have these settings corrected to put this problem behind me, but also I was immediately concerned for both the device and my heart, knowing the device had now been wasting its battery power needlessly pacing my otherwise completely healthy natural intrinsic heart rate and in the process, potentially over working/punishing many of metabolic processes required to support the increased heart rate.  Most disturbing to me, the metabolic possibility(s), potential(s), but these would take a much longer blog to touch on so will save all that for another time. All these facts just further undermine my already diminished confidence in this medical industrial complex.

 Some doctors will quickly argue that it’s completely harmless to pace the heart, stimulating it with electrical impulses that elevate it above the body’s naturally selected intrinsic rate. I did in fact read a few studies showing some metabolic advantage(s) of motion/sensor/based pacing, but these studies were only done on people who had a very low, already compromised intrinsic heart rate. The subjects in these studies who were shown to benefit from pacing would not otherwise be able to get their heart rate above 100bpm without pacing…

The studies I mentioned above clearly did not take into consideration, or apply to anyone with an otherwise perfectly healthy intrinsic heart rate who is running marathons with ease, and is already able to hit a max heart rate heart rate of 187bpm, far above what is even considered to be an average/normal heart rate for a soon to be 53-year-old male. These same studies that where showing benefits of pacing people with low heart rates, showed no advantage to pacing anyone with a natural heart rate above 120bpm.   

The studies showing what happens when you run marathon distance and longer while your ICD continually shocks your heart because of improperly programmed settings, forcing the heart to beat faster as the ICD overrides the body’s natural intrinsic rate while determining the rate-response based off nothing more than an accelerometer built into the ICD, an algorithm built using  data from compromised people unable to get their heart rates above 120, along with a few other corresponding settings, all programed by an electrophysiologist who never ran further then his refrigerator for more of the crap food he so obviously eats as highly evident by his hormonally skewed pudge factor, (spare tire syndrome) …?  haha… These study’s do not exist. I am the guinea pig…

I had this current ICD installed after my first ICD suffered premature battery failure after less than 8 years of use. The reason for the premature battery failure was because unknown to me at the time, the device was pacing me at night due to improper settings. Like this current problem, it took a long time to figure all this out, and even longer to have the ICD settings corrected. Those incorrect settings not only screwed up a lot of my sleep, they also caused me to go under the knife for the replacement 2-3 years earlier then I would have otherwise needed… Wrong on so many levels…

So, when I was about to get this new ICD installed, I was very specific about what device, and what settings I wanted.  I put all of this in writing and had the discussion upfront with the electrophysiologist/surgeon.  My gut feelings at the time told me he was going to screw up the settings somehow just based on his know it all attitude. He already knows so much, that he must figure he doesn’t need to listen to anyone. Wish I would have listened to my guts instead of his arrogant double talk. It was clear from day one that I was obviously the first patient of his ever who was running marathons with my ICD, and asking for the specific settings needed to accommodate this lifestyle. He seemed to take great offense to me asking for specific settings, telling me more then once that I need not worry about any of the settings on my device, and even going as far at one point as to tell me I should stay off Google, as if I was an idiot, parroting what I read there…  

 I hope my heart forgives me for overstimulating it with electrical impulses over the course of running so many miles. The tech who corrected the settings and turned the “activity tracker” off was quick to try minimizing everything like it was just another groovy day at the pacemaker clinic. She was quick in pointing out that I had been paced less than 3% of the time and therefore didn’t think this was in fact a big deal.  

Pacing the heart 3% of the time might sound trivial to someone used to working with people who are paced more often. But consider that what constitutes that 3% of time I was being paced , is the same 3-4% of my time spent running the almost 3000 miles that I ran during the same time period. In other words, the 3% of time I was being paced, accounts for about 99% of the time I was running.

 I do my best to maintain the healthiest of balance between running and maintaining my once weakened heart. I started running late in life, only 4 years after my heart gave out, and at that point and time when I got started, my sole reason for running was only to see if could help improve my low heart function.  Back then I hated/despised running and thought everyone who ran must be an idiot.  But somewhere over the course of those 7,000-8,000 miles ran since, the reasons behind why I run have all changed.

Today I run because I love to run… Nothing more, nothing less. I love the way it makes me feel. The way it clears my head out, giving me the clarity needed to remain sanely focused when viewing/engaging this modern world and all its pitfalls (like this current pacemaker pitfall)… A nice run seems to just melt away all that stress and tension this world sometimes creates. I no longer run because I think running will somehow magically create a healthier heart (I believe there is great potential for the opposite effect if overreaching). Instead, I run because I love the way it makes me feel.  I will run as long as this body remains able.

If in fact I could not run without being paced by my ICD though, I would seriously reconsider any amount of running altogether.  After very little time researching/reading about “known effects of pacing”, such as pacemaker syndrome, I came across enough published science on the subject to draw a very clear understanding of the fact that pacing the heart with electrical stimulation can potentially lead to many other types of heart problems, such as arrhythmia, lazy heart syndrome, disturbed sleep patterns, ejection fraction, etc.…  And aside from all the effects on the heart, think of the metabolic hell being placed on the rest of the body in order to support the metabolic requirements of those higher heart rates being artificially forced by electrical stimulation to the myocardium. Consider also the fact I have heart failure. WTF were these pacemaker doctors and technicians thinking…?  Obviously, they weren’t.

To successfully and safely navigate this “corporatized/nationalized medical industrial complex”, aka as the “sick care system”, known to the uninformed masses only as the “health care system”, you dare not leave anything to chance by turning a blind eye to even your doctor. You must learn to be your own best advocate because no one else will. Iatrogenic death remains the 4th leading cause of death in this country. Not surprising to anyone paying attention…

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