ICD/PM and fast rates

You need that upgrade as soon as possible in my opinion

by Gemita - 2021-07-17 05:04:08

Dear Islandgirl,

For me what stands out is your potentially fractured lead, your EP’s unhappiness with the dysynchrony and the fact that you still have potentially 11 months or longer of this to endure.  Dysynchrony will not be helping either your sudden rapid heart rates or your ejection fraction.  I wonder whether it would be worth discussing that third lead sooner rather than later?

I have chosen for the moment not to have multiple ablations for sites generating my multi focal atrial tachy arrhythmias, but I see you have more serious ventricular tachy arrhythmias for which you have an ICD.  I found with my arrhythmias, the more meds I threw at them the worse they got in terms of frequency and higher heart rate, particularly with anti arrhythmic meds which can unfortunately become pro arrhythmic.  You have an ICD in place to protect you, so you could perhaps discuss with your doctors whether you could try a more gentle approach.  It seems to me as though your main cause for adverse symptoms is your sudden increase in heart rate, so rate control meds alone might help.  Sotalol is dual action:  both an anti arrhythmic and rate control med.  Have you ever tried a calcium channel blocker like Diltiazem, good for rate control and I believe can help manage arrhythmias, either taken alone or together with a simple cardio selective beta blocker like Metoprolol or Bisoprolol (and perhaps drop the Sotalol)?   I was warned Sotalol like all anti arrhythmics, could become "pro arrhythmic" with difficult consequences.  A rate control med alone may be a safer choice I was advised.

Before my pacemaker, my atrial tachy arrhythmias with a rapid ventricular response rate were truly awful.  I also had worsening PVCs coming of course from the ventricles.  The more I threw at my arrhythmias, the worse they got.  I frequently felt close to passing out and was so unstable, needing to lie down to prevent a faint.  Even with the pacemaker, my doctors could not adjust my settings to help during the first few months following implant.  Slowly I could see a pattern emerging as soon as I took my anti arrhythmic meds.  I got worsening symptoms, higher heart rates.  My doctors could see the pro arrhythmic effect of my meds Flecainide and Digoxin.  I was weaned off both and kept on Bisoprolol alone (my decision).  My pacemaker appears to be able to do a better job without anti arrhythmic meds and my symptomatic atrial tachy arrhythmias have been slashed by half in frequency and duration according to pacemaker checks, so I am going in the right direction.  It sounds as though we are both prone to arrhythmias but perhaps we can live with them if we can find the right balance of control.

Of course I realize that your condition is different, your medical history more serious.  You have had several ablations too, whereas I chose not to go down this route for the moment at least and it has been the right decision for me.  

What also stands out is that you say you do not have high blood pressure.  A low blood pressure or heart rate can often trigger an increase in ectopics and ectopics can lead to worsening arrhythmias very quickly for me.  Perhaps it is the same for you?  Are your meds perhaps part of the problem Islandgirl?  The ablations haven’t stopped your tachy arrhythmias and I believe you have had several?  I know you have confidence and respect for your team, so I would have further discussions with them to find a better solution.  Maybe less intervention now, especially medication wise might be better than more.  Your ventricular dysynchrony though needs urgent treatment in my opinion and will surely help with your symptoms and arrhythmias?  

Islandgirl, I really hope for the best for you.  There has to be a better way to deal with your difficulties

Persistent ventricular tachyarrhythmias.

by Selwyn - 2021-07-17 07:21:59

As an idea, have you enquired about bilateral  cervicothoracic sympathectomy and bilateral renal denervation ?

I see you have a cardiomyopathy (join the crowd!) and have had multiple ablations. You are on a stack of medication for heart failure and arrhythmias. ( Ramipril is used to treat your heart failure, rather than your blood pressure).

I think I would at least have such a conversation with my specialist in your difficult position. 

( See  http://europepmc.org/article/PMC/3551540).

I would be interested in their reply to the above. Can you please let me /us  know their response. Thanks. 

All our thoughts and best wishes are with you. 

Thank you Selwyn and Gemita

by islandgirl - 2021-07-17 20:14:14

Any comments help expand my thought process and knowledge. I have been out of state twice for consult and ablations. I have travelled a couple of hundred miles from my house and have had ablations 3 times -- the most recent last October as an emergency with my EF AT 15%. My EP has approached experts nationwide at Heart Rhythm Society conferences.  I've had 2nd opinions and consults locally as well and I travel almost 2 hours to see my EP. He was the 3rd EP I saw in 1999 when this started.  My diastolic pressure is very high if I'm not on the drug cocktail. The sotalol has seemed to have reduced my vt episodes. I have been on numerous drug therapies. I was accepted into a study out of Germany and had biopsies but COVID disrupted the follow up. My biopsies showed thickening and stiffening and further follow up was needed. It is suspected I had contracted something that had affected my heart.  One of the top cardiologists in the world was involved in that study. 
I'll keep you updated on what I find out.