HOCM, Alcoholism & Making Positive Changes

Hello @shampoou, welcome to Mayo Clinic Connect. You may notice, I edited your title slightly to reflect your post and making something positive out of a tough situation. Getting a new diagnosis is always tough, no matter what it is, but inspiring you to make positive changes is a win in the face of adversity.

This is a great conversation. I'd like to invite @karukgirl, @darryl, @nbs, @jenywilliams and @nanakpm to this discussion to share some of their experiences and if they have also made any positive changes since being diagnosed.

@shampoou, if you are comfortable sharing, overall how are you feeling? Quitting anything cold turkey can be difficult, how did you get through it?

Hi there Suzanne, I welcome you too, to this wonderful forum. I responded to you just a bit ago, and see your post here as well. I am very proud of your determination to put you and your life first over the things that control you. I was a dedicated smoker for over 42 years. I quit cold turkey five years ago. I know the difficulties of giving up my "friend" the cigarette. I thought I would never be able to enjoy life without them. That was a lie! I am SO happy I quit. I won't lie...I still crave one now and again...but the cravings slowly got further and further apart as I made it through one day, one week, one month, one year! I know that alcohol affects the HOCM heart by "irritating" it. It can make you feel like your heart is pounding like a drum, or working so hard like a turbo diesel, and doing 125 mph in the fast lane. I believe the further you get from your "quit day", the more you are going to realize how much better you feel. You have HOCM to deal with now, and although we do not dispense medical advice here on Connect, we share information with one another. That information is so valuable, because now you know you are not alone, you're not crazy, you really are experiencing weird symptoms, like head rushes, feeling terrible after a big meal, gasping for air with little exertion, fatigue, chest pain, neck pain, swelling feet...just to name a few.
12 weeks is a great start. It is a life-time commitment to you that you need to make, and you need to learn as much as you can about your condition. You need to be your own best advocate. A lot of cardiologists are not familiar with this condition and you may have to educate them! This group is here to support you, because we all know what it is like, and sharing our journeys may help someone else in theirs. I noticed the first week or two after quitting smoking, that I had more energy. What did you notice first about when you quit?

One of the best sayings I’ve heard in a long time is, “I didn’t suffer from alcoholism until I got sober”. This hit home with me, as I was guilty of over-indulging in my favorite libations on a more frequent basis than one should.
I drank right up until my heart issues arose, but not a single drop since. With all the changes my diagnosis presented me with, I can’t single out any one thing that it has improved as far as my physical health, but I can guarantee that it has improved my life physically/mentally exponentially. Without any hint of doubt in my mind, if I were to start drinking again, I’d be gone within a week or two.
Sure, I’ll get a craving for something once in awhile, but it will never outweigh the risks and consequences.
Find something that you enjoy to fill the time slot of your past drinking times, and it will help keep your mind off things. It’s not an easy battle, but with the support of family, friends, and good folks like those on here, you’ll be well on your way…

First time commenting. I was diagnosed with HOCM while I was in an alcohol treatment center. Sobriety didn’t stick right away, but the heart issues did. I’ve been sober just over 5 years now (I’m 58) and happier than I’ve been in decades. Just like sobriety, I have good heart days and bad heart days, but it is a condition I have to accept, just like my alcoholism.

That's awesome that you have 5 years of sobriety under your belt keep up the great work I am 57 years old

I like that saying about not suffering until you quit that is right on target yes I'm finding things to do that don't involve alcohol I find I like to shop that really helps I also like to go to the pool

@gusgundy, Welcome! I see you joined a few months ago and this is your first post...how awesome you shared your story with @shampoou and others who may be reading these posts. It is so true about HCM/HOCM. There were days I thought to myself, I think I'm getting better! Then a day later, I thought I may die. Gasping for air, crazy heart beats, fatigue...the whole HOCM thing. I was addicted to cigarettes for 42 years and quit cold turkey five years ago...I know it's not the same, but addiction to anything is so difficult, but like you said, you are happier than you have been in decades! What a gift to yourself! Living free. I know the cravings for me were so awful...but I learned to do something that kept my mind and hands busy. Like straighten up my sock drawer. Or organize the pantry or linen closet. Walk. Whatever it takes to let the cravings pass. You mention you have been diagnosed with HOCM, are you taking medication for your symptoms or are you on Camzyos?

@karukgirl , Thanks. I am currently taking metoprolol (not a candidate for Camzyos, yet) and have an ICD / pacemaker after one too many episodes of unexplained synchope.

Oh gosh...I know a lot of HOCM folks end up with a defibrillator. Dang. Sorry for you about that. Are you able to get out and about with the metoprolol on board? Is your doctor experienced with HOCM?

Some good days when I can walk my dogs, some bad days when I'm either to dizzy or to short of breath that I can't. I have been to the Mayo (Jacksonville... Dr. Yamadi(?)) in 2020. When Camzyos was approved, I switched cardiologists to one who participated in the study