Cardiomyopathy/ICD/VFIB

Hi All,

Its been nearly 10 years since i posted and if i'm being honest, i never actually thought i would have to post again. I am/was a fit and active 44 year old male but was diagnosed with Cardiomyopathy back in 2011 and given an ICD as a preventative measure, with very few issues over the ;ast 10 years with the exception of 3 shocks (Inappropriate) but all in all, feeling great. I have been super active throughout this time with cycling/running/weights etc, feeling very fit! It all changed a few weeks ago, the 3/9/24 whereby i was just finishing my usual cycling session and actually on a cool down lap from a standard morning ride (I have been training for the last 10 years, same kind of routine, consistent!) and all of a sudden felt an like my world slowed down, everything went in slow motion and had a very strange sensation and then all of a sudden my world went black.... i woke up on the floor surrounded by friends wondering what an earth had happened. Thankfully, tis was all witnessed and an ambulance was called and arrived pretty much straight away. Once inside the ambulance i was hooked up to ECG macine and my heart was racing in the 170s... upon arriving at the hospital, i was assesed and ICD interogated and it shown my HR was actually 135 when VFIB kicked in, sending my HR to 340 and the rest is as i wrote earlier.Once in the hospital, i stayed in for 5 days and was closely monitored however I didnt have any sign of any other episodes and let her. A week later, i had another collapse on the friday but this time it turned out to be Atriel Tcahycardia, let hoe the next day and then another collapse again on the sunday, this time much faster at 170bpm.... These types of events/Episodes have been happening much more frequently and often at complete random times. Has anyone had experience of a VFIB event where issues post recovery have started to arise? I know my intense exercise regime is over and will over time hope to get back to some level of exercison but its all been a but much to compress and deal with. The docs are saying if the meds dont work (beta blocker 2.5mg) I will have to have an ablation as a next stop so any info/insight/thoughts would be super helpful Thanks for reading, Best wishes, Darren

5 Comments

Allow healing to take place

by Gemita - 2024-10-14 09:58:12

Darren, My first thought is that you have had 10 good years, so that is wonderful.  Now let us try to get you back to health quickly.

I don’t have significant ventricular arrhythmias, so no defibrillator here, but I do have a number of atrial tachy arrhythmias that have triggered syncope in the past, so I know how frightening this can all feel, but of course I do not have to live with a defibrillator and the fear of when the next shock will come.

All I can say is thank goodness you had the defibrillator firmly in place to shock you when VFib occurred sending your heart rate to 340 bpm.  You wouldn’t be here to tell the tale otherwise.

I would imagine after a shock, your heart is very sensitive and is triggering many unwanted rhythm disturbances from both the upper and lower chambers.  Additionally no doubt your heart’s function has now been checked and your ejection fraction has been assessed.  I note you have cardiomyopathy, so I wonder if things have deteriorated and are causing your sudden increase in arrhythmias?  Depending on the cause, I am sure your doctors will act appropriately to calm your rhythm disturbances, to prevent unnecessary shocks.  How can they do this?  By offering either medication or other treatments, depending on the results of your investigations. 

It will take time to settle down, so please try to stay calm.  As you have a defibrillator to protect you, your doctors can give you higher doses of your medication without causing dangerous drops in heart rate.  If an ablation is needed, tackle that when it happens.  For the moment, allow time to heal and to get over this shock.  Bisoprolol is a good rate control med to calm your heart, arrhythmias and your fears.  It worked well for me.

I am unclear how many members here have experienced VFib and lived to tell the tale?

Bisoprolol

by piglet22 - 2024-10-14 12:36:56

I'm assuming 2.5-mg beta blocker is Bisoprolol.

That;s quite a low starting dose which is what they normally do.

You can safely go up to 10-mg daily, which they did to me, so there is still some way to go.

After it settled my ectopics, I'm now reducing it, went to 7.5-mg for a few weeks, now at 5-mg and will probably leave it at that.

Curious..

by USMC-Pacer - 2024-10-14 13:40:35

Do they know the cause of the VF? You mentioned cardiomyopathy, has it worsened? Is your EF stable? Just curious questions I'd be asking as you were doing great for all those years, then bang! Maybe something else is going on where it is so sudden.. Sorry, not helpful, but those are questions I would have. 

I also have cardiomyopathy caused by my last device. My EF has been stable @ 45-50 and hope it stays that way. I've read that worsening heart function can cause arrhithmias of all sorts. 

Wishing you prayers and luck.

Oblation

by Seabreeze - 2024-10-16 21:17:28

Hi. I used beta blockers also.  I had 3 oblations and then an AVNode Oblation. I have my PM and feel great. 
 

I know it's hard but be patient to yourself. 

Thanks

by gulliver80 - 2024-10-17 07:58:35

Thanks All. The replies ave been super helpful and i appreciate the time taken to reply. I have an appointment next week to undertand if the meds will be increased and another interogation so it will give some indication as to what they do next. Thank you.

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