HOCM & VFib amiodarone, sotalol,camzyos

Love that , cats do heal ,
You’re a true inspiration ty !
Love your last lines , great saying I agree . Will have to adopt it as well
Happy Tuesday
Cheers to your health ! ( and mine)

@merly59,
Had ICD/Pacemaker for 10 years with no episodes. Then one afternoon 5 shocks in 24 hours. Hospitalized like you with the amidarone as well. It did stop the episodes. I did asked to come off it and I did. It was done slowly.

What happened to me is I developed PTSD with anxiety panic disorder. With medications I got a lot better. The Pace Clinic at Mayo Clinic did a lot of programing then about a year ago after 6 years of no shocks got them again. But found out we had turned on exercise mode and started having episodes so had them turn it off and episodes stopped. No one wants to say it was the cause but for me it was clear it was.

If you are not on some kind of anxiety medication you should be. I take escipilotron (spell) and it really helped. I also took Xanac (anxiety) and trazodone (sleep) for several months but have come off.

Did your doctors tell you to stop exercising? Mine told me the opposite. They told me to get back to exercising. It will help with stress, and help you sleep. You need to reduce the stress in your life and also exercise to keep you cardiovascular system from getting weaker. But you said were short of breath walking around block. Are you feeling a lot of stress worrying when you do that as that cause you to not breath deeply.

Having said that your cardiologist should be advising on exercise but I would contact him/her and asked about it. They can advise on what to do and not to do.

Hi @meryl59 and welcome. There's a great support community here, as you have already discovered. I'm relieved to say that I have not had to endure the issues you, @irishpeaks and others have experienced with defib. I can only imagine how unpleasant that would be. Since you mentioned Camzyos, please check out the thread below. While it doesn't work for everyone, for me it has been life-changing (sorry for the hyperbole, but it's true). The current symptoms you list were with me for 17 years, getting progressively worse, and within 2 weeks of Camzyos they disappeared completely. Hopefully, if you end up on Camzyos, you will have the same kind of response I did. Best wishes as you negotiate this difficult time.
https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/

Wow best news I heard today!!. So happy to hear your doing well. So many of these comments are negative I started rethinking things which leaves me in a pretty bad way
Appreciate the uplift as I should be hearing from the camzyos people Monday . Gonna roll up my sleeves and take the plunge
Thank you so much

Hello @jc76
Omg 5 shocks in a day would give me ptsd as well. That my friend hard to conceive. Waiting to go into 3 day hospital stay to come off Ami and be placed on Sotalol. Are you on it as well? I do take xaanax and honestly never leave home without them. Friends and family don’t agree but they just don’t get it . Anxiety can like heart attacks and whatever it does works to get me off the ledge . I will also be starting new drug camzyos soon. I need to get back to my gym , swimming and driving . I clock in only 3-5000 steps a day , today never left the house Friend stopped by and it’s cold here in ny .
Are you driving and exercising ? Can I ask your age ?
Appreciate all the feedback
Keep on truckin

@meryl59
I got off AMI several years ago after reading the toxic affects of it. I worked with my EP and we did a slow reduction over time. It is a very toxic drug but works well. I am not on Sotalol.

I was okay for several years after my 5 shocks in 24 hours. And then year ago shocks started coming back. The only thing different was my pacemaker exercise mode was turned on. It was suppose to speed up my heart when motion is sense and they thought it would make me feel better. However the pacing and shocks started back just days after it was turned on. I sense it was the problem and had them turn it off and sure enough the shocks stopped. I think my pacemaker and heart thought the increase in heart beats was the start of VTAC.

I am on a heart rhythm drug called Mexiletine. It is suppose to help with heart rympthm and reduce PVCs. I have not noticed any reduction. It was this drug (less toxic affects of others) or ablation. EP wanted to wait on ablation. Xanac is a great drug to take the edge off and reduce anxiety.

I would asked your doctors about taking a anti anxiety drug also. I take esitiolpram (spell) and my PSY PA wants me to stay on it. She says is very well tolerated and helps a lot. They give to pregnant women so that is the level of toxicity. This was prescribed after the PTSD developed after the shocks.

Xanac I do take when to much stress. I also take a sleep medication called trazodone which really helps clear your mind so you can sleep. I only take both or one when I need it.

I have not heard of the camzyos but will asked my Mayo EP about it including Sotalol. I have been driving after the 30 days restriction when you get a shock so about a year since last shock. I think the standard recommendation is don't drive for 30 days after a shock. I have not had any shocks now for a year after exercise mode on my ICD/Pacemaker was turned off (knocking on wood as I write this).

I am 76. I was really hesitant on exercising back when shocks were occurring buy my apprehension goes down with time and I do exercise 6 days a week. I live in a 55+ community and do water aerobics 5 days a week. The classes are quite aerobic in nature and we use weights. You can do them low level of high level. I also bike 1-2 times a week, and swim (indoor lap pool) 1-2 times a week. Should walk but hate the hard concrete of sidewalks. I do walk the dog every night 1-2 miles. He walks me fast most of time or sometimes he does what I call sniff walks.

I found the exercise greatly reduces stress and relaxes body afterword. I just met with my psychiatric PA and we went over my medications and stress level. She advised me to take the Xanac and Trazodone when I needed it. At one time I was prescribed to take it every day.

My advise, find an exercise you like doing and try to do it as much as you can. Driving is important for self esteem. If you feel anxious about that try to do some deep breathing exercises before you drive and while you are driving to relax.

I live in Florida but it does get cold here. If I can't get out I walk around the house. I have a path that takes 2 minutes to do a loop and I try to do a minimum of 20 minutes. I think that exercise for some like me is a great stress reliever and is good for mental health as well as physical health.
I am glad to give you feedback on anything to help you.

Happy to tell you that after 2 months on Camzyos 5mg I am feeling a lot better - much less breathless and able to walk longer distances ( 2 miles or more a day) with none of the side effects that were initially mentioned. I am very pleased as is my doctor. For me this medication turned out to be a wonder drug. Just hoping it stays this way.

Great to hear , I’m so nervous about a little pill. Thank you for sharing & prey the good progress continues .

That’s great news; in all likelihood I will be going on it soon. Continued success.

For those of you on Medicare and currently taking Camzyos how are you managing the exorbitant price tag? Looks like there are options with steep upfront cost for a couple months but dropping off to well under $100/mo. I am applying for a grant and I think Bristol Meyers also provides a small free sample.