ace inhibitor or dilated cardiomyopathy

[Kswinster]

hi there. I’m 39 and was diagnosed with dilated cardiomyopathy at 14. I was not symptomatic when diagnosed but detected because my father had genetic DCM and was in heart failure.i am currently moderate and have a EJ of 41%. He was terribly ill for about ten to fifteen years and then received a heart transplant. That was 27 years ago. I used to take ramipril 10mg at night. I stopped when my daughter was in hospital for a few months due to needing to be awake and I couldn’t cope with the side effects ( I work pt and am a full time carer as she has a life limiting neuro condition). I tried to restart ramipril and the side effects were awful. Even at 2.5mg. So I stopped completely. That was four years ago. Now I’m worried I’m not on anything. Has anyone else has a similar experience and could share what they do? Or any advice. Thank you. Katy

[jayjay10000]

Hi there. I like to thankyou for posting your experience and thoughts on here. You are not alone. I had the same experience as you taking Ramipril even on the lowest dose of 1.25mg, I had even tryed to take this medication at night but it still had the same effects. I have stop taking this medication now for 12weeks now and my blood pressure is increasing slightly on every afternoon,I do my bp checks twice aweek at the same time, 10am and 5pm, before I do my tests I sit still and just try and relax for 5mins, my results in the morning are in good range around 117/73 but in the afternoon around 138/87, i have spoken to my doctor I useuly see about this and he seem not to care even though i said I was worried. I have an Aortic Root dilation and ascending so iam worried about my blood pressure having a effect on the dilation. Ask at your local doctor surgery if you could have a blood pressure review once a week at the same time to see how your blood pressure is doing, keep me in the loop please about your out come. Take good care

[Kswinster in reply to jayjay10000]

Thank you for replying JayJay. I'll ask them today, thank you. I also ordered a BP machine last night. I spoke to my GP who has recommended another medication, lisinopril 2.5mg for two weeks. I'm hoping this may be better. I'll let you know how i get on. Have you tried any others?

[jayjay10000 in reply to Kswinster]

Hi there. Thanks for your reply. I have tryed Bisoprolol but it had the same effects as ramipril but this time my heart rate was going low at rest around 48bpm, I was on it for 4weeks. Iam still having problems with Heart rate at rest 55bpm to 48bpm. Iam not on any blood pressure medication at the moment and this is what iam worried about my health iam not getting much sleep lately, iam experience anxiety symptoms when sleeping waking up gasping for breath shouting out for help. Iam on the waiting list for talking therapist but the waiting times are long. Finding things hard dealing with Anxiety disorder and panic attacks. Take care