New Here - Need Your Advice, Please

Hi,

I’m new to this forum and could use some experienced advice. Here’s my story:

I was diagnosed with advanced prostate cancer 5-years ago (stage 4). The cancer had spread to one area outside the prostate – the T8 vertebra.  Went through chemo, radiation and surgery as well as 5-years of hormone therapy (Lupron). I’m in remission now and not taking any cancer medications. ;)

The doctors believe that radiation treatment to my T8 vertebra may have caused an electrical problem with my heart. (Or perhaps it was the chemotherapy.)

I was diagnosed with chronotropic incompetence / sick sinus syndrome. My heart rate would not go above 109 before my pacemaker implant. I was experiencing shortness of breath and impeded ability to exercise. This condition seemed to be getting worse over time.  I first noticed it about 4-years ago and my maximum heart rate, with rigorous exercise, was about 128 bpm.  Before my cancer treatment I had no issues. I also have “mild to moderate” mitral valve regurgitation and “mild to moderate” aortic valve regurgitation. They did not recommend any treatment for these conditions. I had a nuclear lexiscan stress test a few weeks ago and they did not advise me of any issues.

I had a Boston Scientific Accolade L331 MRI dual chamber pacemaker implanted at the Cleveland Clinic in October of 2019. I am 59 years old, in good physical health, and I do not take any medications except Myrbetriq, which is for urinary frequency.

At first, the pacemaker worked very well. Shortness of breath went away. Was able to exercise well. I’m in good shape. Walked 6 miles the other day. And can ride a bike 10-15 miles. 

I’ve had numerous issues with my pacemaker since it was implanted, including:

  1. Heart racing without any exertion (e.g. sitting) - 100-110bpm
  2. Chest pain when heart rate elevated to 120 bpm+
  3. Heart rate would max out too quickly (set at 155 bpm), particularly when using my arms to do things like simply sweeping a broom. 
  4. When wearing a halter, I got a call from the monitoring company to ask me if I was OK.  They said I had a “ventricular tachycardia event”.  My electro cardiologist later determined this was caused by my pacemaker (which I understand is a rare event).
  5. During the month I wore the halter, they confirmed over 100 events that matched the symptoms I reported.

I’ve had the pacemaker adjusted about 8 times since it was installed. Also, I have met with the Boston Scientific manufacturer’s rep twice and he is helping the doctor make programming adjustments. 

Most recently they turned off the lead to the lower heart chamber – they tell me that lead was causing my chest pain. And they turned off the motion sensor part of the pacemaker, too. This helped a lot. 

But I’m still having the following issues:

  1. A couple of times this week my heart rate went up to 180 bpm (beyond the pacemaker’s 155 max setting), according to my Apple watch (which seems to track very accurately). In one case, all I was doing was using a garden hose to water some roses. This caused some chest pain and I had to just stop what I was doing and put my hands on my knees until I felt better. It only took a minute or two to feel better. 
  2. My heart rate is going up fast again with little exertion. For example, when I get out of the shower and "towel off", my heart rate goes to the 120s. 
  3. When we recalibrated the pacemaker a couple of weeks ago, we tested it walking up stairs. I could walk up 2 flights of stairs and my heart rate was about 95. Now it’s going to 100 - 110 with just one flight of stairs; 115 – 125 with two flights.

Questions:

  1. Any thoughts on what is causing my heart rate to elevate very high with moderate exertion, particularly when I’m using my arms? I think all I have left to adjust on my pacemaker is the sensitivity to respiration ... but I’m not breathing particularly hard when my heart rate accelerates. 
  2. Is this level of required adjustments “normal” for a new pacemaker recipient? (My cardiologist told me they usually don’t have someone my age – 59 – in my good physical condition, so it sometimes takes a while to find the “sweet spot” for settings.)
  3. Any thoughts on what you suggest I ask the doctor? I transferred my oversight back to my local cardio team. I could go back to Cleveland Clinic, if necessary. The head of the pacing department, Dr. Bruce Wilkoff, installed my pacemaker. I may schedule a tele-med call with Dr. Wilkoff to discuss, but wanted to get this forum’s input before I schedule.  

Any help is appreciated. And best wishes to everyone here!

JamesAtlanta

4 Comments

Myrbetriq for urinary frequency

by Gemita - 2020-09-07 14:59:41

Hello James,

I am so sorry to hear of your experience with your pacemaker and to learn about your past medical history.  I have had a pacemaker for two years and no it is definitely not normal to experience the difficulties you have encountered.

My initial thought is have you tried stopping Myrbetriq for a short while to see if your sudden rapid heart rate settles ?  These meds may cause heart rhythm disturbances.  I have taken them in the past for overactive bladder and my doctor had to stop them because they caused worsening palpitations.  Maybe you could ask your doctors for alternative treatment options for your frequency for a short while to see if your symptoms improve off the med?  If not, keep well hydrated while on this med.  I would also recommend you talk to your general doctor to get some bloods done to check your electrolytes, thyroid and look for other conditions causing tachycardia, like infection or anemia.  I had a full work up looking at my coronary arteries and heart in general.  An echocardiogram was done to check my ejection fraction.  

I presume you are confident that you have a good EP who is able to care for you with such a complex history?  If not, I would look for the very best to help you overcome your present difficulties.  I can see you have had numerous pacemaker adjustments and have had your ventricular lead switched off.  It seems to me this is not a long term acceptable solution.  I would definitely go back to the experts at Cleveland or seek a new opinion.

Hopefully others can help you with possible setting adjustments for your make of pacemaker, although I note there isnt much more to change!  In the meantime I would ask for more monitoring (maybe even long term Reveal Linq implant) to see whether you are still getting ventricular tachycardia episodes or other arrhythmias since these can play havoc with our ability to exert ourselves.  In any event you sound as though you need good care to stay well after your experience.  You could ask your doctors for your latest pacemaker data downloads to learn about your settings and what has been detected so far. Episodes of ventricular tachycardia should be recorded by your pacemaker.  Mine certainly are.  

I got a worsening of my tachycardia immediately after pacemaker implantation which continued for several months.  I thought it was due to the pacemaker too but slowly as I healed, my disturbances lessened, although I did need to stop some meds and reduce dosage of others to achieve this improvement.  I do hope for the very best for you but would strongly recommend you go back to the best EP in the Cleveland Clinic

There's a lot to unpack here

by AgentX86 - 2020-09-07 15:06:34

59 isn't "young" for to have a pacemaker, even among those in good shape.  It's certainly not old but your doctors are blowing smoke if they're using that as an excuse for the difficulty they're having dialing your pacemaker settings in.  Active people of all ages can have difficulty finding settings that work well in all circumstances.  Sometimes it's a tradeoff that isn't great for any but good enough for all.  That's a difficult balancing act, particularly since they can't be with you 24/7.

The fact that they turned off your ventricular lead after a tachycardia event suggest a PMT (pacemaker mediated tachycardia) type where the AV node has retrograde conduction.  The ventrical lead paces the ventrical, then the AV node conducts that pacing signal back to the atrium, causeing a contraction of the atrium, which the atrial lead picks up and starts another V-pace.  And around and around we go.  To break this cycle, they don't allow V-pacing.

Now that that's discnnected, you have another tachycardia arrhythmia that's pushing your heart rate up.  That could be about anything but it could be that that was the original problem and it wasn't PMT, or at least not the reentrant loop sort. 

They disconnected your accelerometer-based rate response input so all you have left is the respiratory sensor, which isn't all that reliable.  Since you have cronotropic incompetence, you need something to raise the rate during exertion.  Your doctors know more but it would seem to me that the breating based sensor, alone, would be very difficult to get right in all cases.  It's great (wish I had it) as an adjunct to the motion based sensor but alone?

Adjustments normal?  For a couch potato, no.  For an athletic type, it's not that unusual but you do have something else going on.

I'm in Atlanta (just outside) and have a very good EP and cardiology team.  I don't see any reason to go elsewhere.  A consult wouldn't hurt but there's no reason to go elsewhere, particularly for these sorts of problems.  There are very good people here and seemingly fifty hospitals in a dozen different  hospital systems.

My opinion

by doublehorn48 - 2020-09-11 19:41:56

I'm happy to hear you're in remission for prostate cancer.  I had RALPH in 2014 so I can sympathize with a person with a common foe.  Very happy to know that you're in remission.

I've had lead replacement done by Dr. Wilkoff and I would get in touch with him to get his thoughts on your problem.

Best wisches.

m. scott

Thanks for the encouragement

by JamesAtlanta - 2020-09-16 17:12:38

I will reach out to Dr. Wilkoff as you suggest!  And thanks to everyone who replied.  All of your input is very helpful!

Best regards,

James

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