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HCM-ers: Introduce yourself or just say hi

Hypertrophic Cardiomyopathy (HCM) | Last Active: Aug 26 9:56am | Replies (870)
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@apdaye

New to the group! I was diagnosed with HCM 2 years ago. I had an episode that woke me up during sleep. I had ICD placed. I am on metoprolol 25mg BID and amiodarone 100mg QD . I had a sleep study( mild apnea). I do not sleep more than 2 hrs at a time! I have been fighting to be heard that my runs of Vtach ( unsustained) 30 sec or less occur mostly at night. I finally have an electrophysiologist who agrees(after second holter monitor). 23 episodes in 14 days, mostly at night. I am 65 and fighting to remain active. I walk 3 miles , 3-5 times a week. I have had meds adjusted at least 4 times. Ablation was mentioned but may not be successful due to polymorphic arrhythmia. I have had near-syncope events, last one was February of this year. I guess I’m not sure when I need an intervention.

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Replies to "New to the group! I was diagnosed with HCM 2 years ago. I had an episode..."
Debra, Volunteer Mentor | @karukgirl | Jul 12 10:24am

Welcome to Mayo Connect @apdaye, I'm glad you found this support group. Have you had a chance to poke around on here? There is a lot of information that has been shared by people with your same issues. I'd like to introduce you to @irishpeaks. He has a lot of experience with HCM and an ICD, so I hope you will read some of his posts.
I feel your frustration when it seems like you are not being heard and lack information about your condition. Thankfully, it sounds like you are doing the best thing you can which is staying active and learning as much as you can about your condition. You need to be your own best advocate, as sometimes we can fall through the cracks in the healthcare system.
Is your cardiologist familiar with treating HCM? Have you considered a second opinion to be sure you have all the information?

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