1. < Hypertrophic Cardiomyopathy (HCM)
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Symptoms getting worse on Camzyos

Posted by cindy @cindyw9999, Mar 24 11:00am

Diagnosed with symptomatic OHCM early January. After trying Metoprolol and Verapamil with horrible side effects, I started Camzyos one month ago. Initially I felt the best I had in 2 months. Results of evho showed great improvement on my gradient. Last 7-10 days I have new symptoms and feel awful. On and off dizziness and heart palpitations thru out the day. When I eat a meal, within a few minutes, heart racing and dizzy and now my stomach is bloating. I’ve been starting to eat smaller meals and it’s the same. As a type 1 diabetic I eat a very low carb healthy diet

Anyone else have these symptoms?

Also don’t sleep well and am very depressed

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manuelpo | @manuelpo | Mar 24 11:38am

Please contact your Cardiologist who prescribed you CAMZYOS right now and do not waist your time in anything else. He will decide if a lower dosage or take you out of Camzyos is the best for you. I wish you the best and God bless you.

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christine270 | @christine270 | Mar 25 7:57am

Yes, same...Started 5 mg Camzyos in October and had already been on Metoprolol. Felt good for a few weeks then the room started to spin. Went for echo and doc appt, gradient was good so reduced to 2.5 mg and taking it at bedtime instead of morning. Dizziness subsided greatly. However, sleep interrupted by bizarre nightmares, heart beating in my head as I try to sleep, heart rate in the 90's (has always been upper 70's to 85). I am a type 2 diabetic. I know it's not the right thing to do but I skip breakfast and dinner often...Don't want to deal with stomach pain immediately after eating. Weight is dropping but belly protruding. Fatigue. I am pushing through it and hoping to get on the other side of it. Next echo and doc appt in early summer. I know it is discouraging...
I find that distracting myself is helpful...reading an enjoyable book, sitting a few minutes in the sun, a quiet visit to church, a nice herbal tea or steaming cup of coffee, lunch with a long-time friend, going through my phone looking at happy friend/family photos, a bouquet of flowers on the kitchen counter, sending cards to folks I know or don't know, preparing a big kettle of soothing soup, hugging an old childhood stuffed animal...
Blessings to you...one day at a time...Christina

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dinahj | @dinahj | Mar 27 9:09pm
In reply to @christine270 "Yes, same...Started 5 mg Camzyos in October and had already been on Metoprolol. Felt good for..." + (show)
Profile picture for christine270 @christine270

Yes, same...Started 5 mg Camzyos in October and had already been on Metoprolol. Felt good for a few weeks then the room started to spin. Went for echo and doc appt, gradient was good so reduced to 2.5 mg and taking it at bedtime instead of morning. Dizziness subsided greatly. However, sleep interrupted by bizarre nightmares, heart beating in my head as I try to sleep, heart rate in the 90's (has always been upper 70's to 85). I am a type 2 diabetic. I know it's not the right thing to do but I skip breakfast and dinner often...Don't want to deal with stomach pain immediately after eating. Weight is dropping but belly protruding. Fatigue. I am pushing through it and hoping to get on the other side of it. Next echo and doc appt in early summer. I know it is discouraging...
I find that distracting myself is helpful...reading an enjoyable book, sitting a few minutes in the sun, a quiet visit to church, a nice herbal tea or steaming cup of coffee, lunch with a long-time friend, going through my phone looking at happy friend/family photos, a bouquet of flowers on the kitchen counter, sending cards to folks I know or don't know, preparing a big kettle of soothing soup, hugging an old childhood stuffed animal...
Blessings to you...one day at a time...Christina

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@christine270 I just started 2 days ago on 5 mg. What you are going through sounds discouraging. I think you should get back to the heart doctor asap. Prayers for you.

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cindy | @cindyw9999 | Mar 28 7:34am

I am discouraged but trying to be patient. Finally heard from Dr who is keeping me on the 5 mg. I’ll give this 3-4 more months than may opt for surgery.

Best wishes and hope it works for you and that you don’t have bad symptoms

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pamela47 | @pamela47 | Mar 30 4:10pm

Hello Cindy
I'm sorry to hear that. Depressing, after a promising start on the drug.
I had become very debilitated by the time I was diagnosed with HOCM 3 months ago. During my first month on Camzyos I improved noticeably, then went downhill again. My bad days and weeks are very influenced by the weather, especially humidity. When the humidity is over about 60% my breathing alters. We've had weeks of high humidity here and every single symptom got worse again. (Heat doesn't help either)
Its worth working out if that is effecting you because if it is there are things you can do things to help.

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