Pacemaker Dependent

Cardiomyopathy

by Julros - 2022-04-16 12:13:52

This must be stunning news for you and I hope your provider or a health educatior can help with some answers. Cardiomyopathy is usually, but not always caused by ischemic heart disease, that is, damage to the heart muscle due to a lack of blood flow. I am not sure from your description if that describes your condition. Hopefully your heart arteries have been checked for any blockages, and your cholesterol is being controlled. 

Other reasons for cardiomyopathy include genetic (that's me), connective tissue disorders like sarcoid, or damage from cancer treatments. These are a little trickier to treat. ACE inhibitors, which ramipril is one kind, are customary treatment. Often, beta blockers are used, plus "water pills" to reduce any edema. 

Unfortuanely, a reduced ejection fraction can be caused by a pacemaker, because instead of the 2 sides of the heart beating at the same time, the right side squeezes before the left, causing a disynchrony. The amount of blood squeezed out or ejected is reduced. Sometimes this is corrected by upgrading the pacer and adding a third wire, so that the 2 ventricles squeeze at the same time. Perhaps others can add some links about pacermaker induced cardiomyopathy and cardiac resynchronization therapy. the Amercian Heart Assocication website has some good info on this. 

Best wishes, 

Julie

Thank you

by datslt - 2022-04-17 10:57:43

Thanks so much Julie for the information! I have been told there are no blockages -- my probs are all electric issues! My cardiologist report said he felt the event I had in March that landed me in hospital was caused by my blood pressure going too low caused by POTS (Postural orthostatic tachycardia syndrome) a condition relating to the blood flow that caused me to blackout. This is the condition I was diagnosed with along with NCS (neurocardiogenic syncope) 30 years ago that started this journey with my PM!  He still does not know why my heart has deteriorated so quickly since December, but changing my BP meds (RAMIPRIL) hopefully will help both issues. If not, they will switch me again until they find one or a combination that will stop the progression whilst controlling the blood flow. Thanks again for the great info. Trying to understand all this after thinking my PM was going to "fix" things where as it might have caused something else.

Cheers,

Sherry

I wish you well

by Gemita - 2022-04-17 20:15:17

Dear Sherry, I am so sorry to hear about your cardiomyopathy and your lowered ejection fraction.  I see you have been an arrhythmia/LBBB sufferer for many years and needed a pacemaker following a cardiac arrest.  I see also your pacemaker has recently been pacing at 100% due to 3rd degree heart block.

There are many members here with different forms of cardiomyopathy (search cardiomyopathy, top right under "Q") as a result of heart damage from different causes like a cardiac arrest, high blood pressure, tachy arrhythmias, acute illness either infectious or inflammatory, thyroid conditions, diabetes, genetic disease, cancer treatments, to poor lifestyle choices.  Looking at your history of tachy arrhythmias, LBBB and cardiac arrest and then your need for pacing, you certainly have several risk factors for cardiomyopathy.  Did your doctors give you any indication of the likely single cause, the type of cardiomyopathy seen and all your treatment options?   Hopefully they can prevent further progression with lifestyle improvements and medication alone.  Failing this, they might offer cardiac resynchronization therapy to synchronize your two ventricles to try to help improve your EF.  

I attach two links which might be helpful but please do not assume that you have pacing induced cardiomyopathy (PICM) (!) or that you will need a CRT upgrade.  You may succeed with medication alone. The majority of patients who are 100% paced in their right ventricle may never experience pacemaker induced heart failure.  

As an arrhythmia sufferer, getting an arrhythmia under control and any high heart rates/blood pressure, as well as other health conditions, will certainly help your heart to function better.  It sounds to me as though your tachy arrhythmias over the years have taken their toll on your heart.

Why has the deterioration happened so fast you ask?  Perhaps it has been happening over a few years rather than suddenly?  Yes, I am afraid the pacemaker is not the answer for all our difficulties.  It cannot cure our arrhythmias, or control high blood pressure, or high heart rates, which still need rate lowering meds.  A pacemaker will however prevent falls in heart rate (but not blood pressure), thereby allowing arrhythmia meds to be safely taken in higher doses to help control the arrhythmia and any high heart rates.  This in turn will hopefully improve heart function. 

First link is about pacing induced cardiomyopathy, second link about Cardiac Resynchronization therapy

https://academic.oup.com/eurheartj/article/40/44/3649/5585814

https://www.bhf.org.uk/informationsupport/heart-matters-magazine/medical/ask-the-experts/crt-pacemakers-and-heart-failure

Take care and please let us know how you progress xx

Thank you

by datslt - 2022-04-18 02:52:47

Thank you so much for those links! Even though I have been a sufferer of this for many years, I feel new to this diagnosis. What has helped me the most are people like you that tell me I'm not alone and that coping with this will be part of the journey. It sounds like great progress has been made since my PM was implanted 5 yrs ago and hopefully the progress will continue. My next cardiologist appt is in 3 weeks to check if the new meds are working and my EF has NOT decreased anymore. Thanks again for your post!

Cheers, Sherry

Update

by datslt - 2022-09-26 02:46:42

I think I might be on the home stretch now. After further testing, my EF decreased again significantly and now is around 30. With that, my cardiologist switched my max dose of RAMIPRIL to the max dose of Enestro along with 2 blood thinners and a diuretic. In a couple more weeks, I will undergo an angiogram to check for clots or blockages -- if they find any, they will fix right then and there. If nothing is found, the next step is to switch my PM to a CRT which is what I have been saying since May! The biggest problem with a condition like this, is the amount of tests and the time it takes before a possible solution is arrived at. The meds keep my BP low which is keeping me very tired and unsteady on my feet. 6 mos is a long time to wait for answers (cardiologist, EP, and neurologist along with the blood tests) and the stress is not helping. Thanks again for everyone's comments and support. It really does mean a lot to know we are not the only ones suffering thru this!
 

cheers, Sherry