HCM-ers: Introduce yourself or just say hi

That is wonderful to hear! I hope you stay healthy, HOCM is not much fun, but thankfully there are different ways to deal with it. Camzyos is one way! Stay healthy!

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.

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?

I have not asked him how many patients he treats for this specific condition. I feel like he uses a “blanket” approach as he sees so many people in this area. I was referred to cardiac electrophysiologist as he felt like he had done all he could( his words). At least this doctor is listening to me. I have intermittent shortness of breath without exertion. Intermittent left lower leg swelling. Fatigue and poor sleep. The runs of vtach are not sustained so my defibrillator has not fired since placed in 2022.

Yes, I've read some of the stories and feel right at home.
I have a couple of things going on besides the HCM at this point...

I was taking beta blockers when first diagnosed with HCM and received my ICD, and have slowly weaned off of them over the years. Now I don't take any meds for my heart and am doing ok so far. No shocks. I see my cardiologist this afternoon for a checkup so we'll see what he says.

I am very active. I belong to a gym and usually attend 2 exercise classes a day and work with a personal trainer once a week. For both my physical and mental health.

Happy to be here to learn more and share experiences.

My name is Wendy. Diagnosed September 2023 and am having lots of questions and concerns. Also have anxiety and depression. My biggest concern is bloating and weight gain.

Hi Wendy @wendykramer, and welcome to Mayo Clinic Connect. Have you had a chance to look around here on Connect? There is a lot of information on here from others who share your same diagnosis.
Since we are all so different it is hard to if HCM is the cause...some on here lose weight, some gain weight because they can't exercise.
I have posted a Mayo Clinic link to HCM, and if you have not read it before, you may find it interesting.
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
Although bloating and weight gain can have so many culprits...diet for one, I don't see it listed, but that does not mean it is not because of HCM.
Have you mentioned your concerns to your doctor?
Are you healthy and active otherwise?
What are some of your questions and concerns?

@metta, I add my welcome. I agree that being physically active is as good for one's mental health as for physical health.

How did your appointment go with the cardiologist last week?

Hello @colleenyoung, thanks for asking about my cardiology appointment. It went well, except based on my recent symptoms, my doctor wants me to have an MRI to determine whether I have obstructive HCM, but I have a Boston Scientific defibrillator and determined I can't undergo an MRI. we've scheduled a stress-echo for next month to see if that can shed any light on the issue. Additionally, I hope to learn more about the diastolic function of my left ventricle as my last echo was indeterminate on that reading. I've been doing some research on the ApicalHCM and options for treatment and have been learning a lot. This venue is full of interesting and useful information. I'm so happy to have found you.

I have been diagnosed with HCM. I have to start taking Camzyos. What can you tell me about this medicine? What are the Stats on this? My cardiologist has never prescribed this before. I am very nerves about this do you know of anyone who has taken this pill before