HOCM & VFib amiodarone, sotalol,camzyos

Hello @meryl59, and welcome to Mayo Connect. I'm glad you found this group.
I absolutely cannot imagine experiencing a defibrillator firing off! Fellow member @irishpeaks can certainly identify with your fear. Have you had a chance to look around here on Mayo Connect?
I'm a little confused...have you started Camzyos or are you getting ready to start it?

Hello , thank you
It’s a bit complicated. No not on Camzyos yet. 2 nd appointment with that Dr this Friday 2/2.
First I have to get off the amiodarone and be switched to Sotalol which the drs feel a better antiarythmeia drug for me as I’m 64 and was told amiodarone is very toxic if on too long. This has to be done in hospital for 3 days observance . No date yet when this will happen. Cardiologist coordinating .
My other meds are carvedilol ,fenofibrate, rosuvastatin, low dose aspirin, furesimide, nifedipine & losartin.
Definitely getting weight gain and swelling in legs . My current symptoms are extreme shortness of breath, light headed , dizzy spells , anxiety,which all seem to be the same as Camzyos ? From what I read . I was very active dancing , swimming , enjoying . Now I push to walk around the block . Just not sure what to do . Appreciate any and all. Got a lot of living to do ya know?

Thank you in advance . Maybe a trip to Mayo is what I need ?

I have indeed been shocked on many occasions, and never once was it not mentally taxing afterwards. It affects your life in ways you didn’t imagine. My corrections came shortly after the implantation and before we got my meds adjusted. I was put on 1200mg of amiodarone for a certain period of time and gradually transitioned to Sotalol after getting off the Ami.
Things have been going pretty well since. Other than time, the best healer for me was just to remember the alternative.

Thank you for responding . I was at my daughter in NC had just flown in from ny that night. Brushing my teeth , got dizzy hit the floor. Spent 6 days in NC hospital so strange hospital strange drs . I read the push dose of amiodarone info and at first said no way but they spoke to my ny drs and said I should do it and they will get me off asap . I am down to 200 mg a day now and seem to be holding ok , some days better than others. How long till you drove again? Swam ? Moderate exercise ? I can barely make a walk around the block without stopping t
2-3 times! Eating less but gaining middle weight. RBP around 65 full pacing , am & pm BP 135 /80 ish which for me is very good.
Did you have many reactions to the solatol?

My recommendation for recovery from my experience would be to be patient and listen to your body. When I was right out of the hospital I could barely climb a flight of 6 stairs. In all honesty I didn’t want to climb them because it would make me feel uncomfortable and that would lead to a shock. In essence, I was fighting two battles.
Fast forward a year later and I’m putting in 23,000 steps on a fairly regular basis. No issues except a stray spike in heartbeat, but easily corrected.
I didn’t feel safe driving for a few weeks after my last shock, and still stay off the roads for everyone’s sake if I feel more susceptible to a shock.
When you exercise, however it may be, try a smartwatch (if you don’t have one) to monitor your health metrics. I constantly watch mine when exerting myself more than usual. I can adjust my routine accordingly.
Hopefully some of this will help ease your concerns, and I’m glad to help any way I can. Keep fighting the good fight!

As far as the Sotalol, I went and stayed in the hospital for a few days while the did the Sotalol loading. Low heart rate was the main concern for me, but everything was and has been mostly fine since. It’s a better than Amiodarone, so I did the transition ASAP when things settled down as far as shocks go.

And what month / year?
What state are you in ? JW

I want to dothis switch asap waiting on drs to coordinate , but def calling in am .

I might have missed this sorry
Are you also diagnosed with HOCM ?

Wow ty for all the fast responses . I can’t believe and o can only pray for the strength and energy you have back. I didn’t leave the house all day , clocked on only 3775 steps today and getting into a winter hibernation mode which I know is not good for me , but feel “ safe” than being out . I need to somehow get past this but the symptoms and possibilities of what could be are putting me in panic mode I guess.
This is not at all who I am and well I am so grateful for your reply’s .its very lonely friends and family don’t truly get it Ya know ?
Thanks for shining a light for me

I enjoy sharing my experiences, it’s even better if they can help others.
My recovery was aided by a stray cat who is now a close member of the family. To get my steps and fresh air, I would walk outside and take some food to see if I could coax her closer to pet her. Eventually, with a lot of persistence, we became friends. It didn’t come without pain and some scary moments as far as my heart was concerned, but it was worth it.
I read a great saying that I always remember, “Don’t pray for an easy life, pray for the strength to endure a hard one”…