HCM-ers: Introduce yourself or just say hi

I'm 59 and was diagnosed with HCM with LVOT obstruction in September when a heart murmur was detected during an appointment for a laceration. I had assumed my lightheadedness was all related to chronic sinusitis and allergies. I had some upper back (between my shoulder blades) and chest soreness which I attributed to posture/lack of upper body strength. I did notice that yard work made me much more tired this summer than the summer before. I exercised quite a bit prior to my diagnosis and I have an appointment with the Sports Cardiology Clinic and Cardiophysiologist coming up to go over my stress Echo with me and provide me with guidance on exercise going forward. I started Cardizem which has improved my BP tremendously. I was on Lisinopril prior to the diagnosis, but it wasn't working. A few weeks after the Cardizem start my chest soreness/tightness and pain between shoulder blades is mostly absent. I still get lightheaded from time to time. I'm not in quite as much of a panic now regarding the diagnosis as I was initially. Still a little nerve wracking as my symptoms were so gradual I just thought that's what it felt like to be me. I was really surprised by the diagnosis. Going through genetic testing now.

Thank you for the invitation to this group. I first learned I had HCM 7 years ago. It has been treated with drugs but a recent increase in medication drove my blood pressure so low, I spent 5 days in the hospital. The good news is new tests have given more information, and I will be seeing an HCM specialist next month.

@bigheart12345
Are you taking camzyos?

@debrasheila my first symptoms were palpitations that lasted 3 days but looking back prior to diagnosis there was a light bulb moment. Now I know why I cannot drink any caffeinated drinks after 11 am otherwise I will not sleep at all, I cannot sleep on my left hand side because the strength of my heart beat keeps me awake. Any amount of alcohol makes me feel dreadful the next day. Some foods will trigger palpitations like excessive potassium and artificial sugars are a real no because they trigger palpitations. I also can feel each and every heart beat which I now realise is not normal for many. So in reality, I actually had a fair number of indicators that something wasn't normal.

I just joined this group and would like to say "hi" to all the members. No side effects so far but am quite anxious about the possibility. For those who have experienced them, when do they usually start?

@bigheart12345 , welcome to Mayo Clinic Connect, and thanks for sharing your story.
It sounds like you have been living with HCM for quite some time, and know yourself very well. And how crazy to be told you had a heart attack and didn't know!!

You ask if others get discomfort/pain near or directly over their hearts. I can only answer for me, and I had chest pain in the center, that radiated up into my neck and around to in between my shoulder blades. It was random, and not always associated with exertion. I no longer have this after open heart surgery.

I'd like to ask you if you feel confident in your current treatment, or have you considered a second opinion? I know you just saw him recently and felt reassured, but it sounds like you still have some lingering feelings in the back of you mind.
You have reasons to be concerned and I would want to be assured all is well. This could be non-related to HCM or it could be from it, but knowing is best.
My pro-BNP was very elevated before my surgery because my heart was failing. It was not normal to be that high in a patient with no history of heart failure.
When will you see the results of all tests and the final diagnosis?

Hi, I'm Julie and live in the UK. Here's my story. Exactly 20 years ago at the age of 42, I went to my GP with palpitations. I had had the odd one before but these were all day long for 3 days. The nurse did an ECG and she told me that it showed that I had had a heart attack and asked if I had had any chest pain. I said none at all and she said it must have been a silent one then. She called the Doctor in, he took one look at the results and said the nurse must have had the leads on incorrectly so re-run, she did and it was the same. I was immediately referred to a cardiologist and I was very lucky to be introduced to someone who understood the condition and had written several articles on the topic. That's how it all started. He put me on bisoprolol and I have tolerated it really well for 20 years with hardly any palpitations. Any I do get or normally dietary related, like too much potassium or a supplement that interferes with the bisoprolol. I have severe hypertrophy of the septum and left ventricular wall and am so lucky for it to be non obstructive. For 20 years, the results of all my echos etc. have remained consistent except for my left atrium dia which has grown from 3.2 to 3.8. (Previous consultations never recorded volume for some reason). I have very good blood pressure and normal diastolic function due to the beta blocker. I hold on to my cardiologist once saying that I had wonderful arteries because there never seems to be any positive news with this condition. I remember asking him at early stage diagnosis whether there were any positives with the condition, he thought very pensively and after a few seconds said no. Still makes me smile. I should also say that I got my Mum screened too and my Sister, Mum has a milder version and is still here at the wonderful age of 92 but she is very breathless if she walks she has never had any treatment for the condition. Sister is negative. So unfortunately my wonderful cardiologist left for Singapore, I got a new one and he doesn't give me any of the detail I used to get on my results. In fact one appointment I asked for an echo and all he did was a bedside one and he scared the life out of me by telling me my left atrium was much larger and just said I could take water tablets if it was a problem. So I took myself off to a very knowledgeable structural heart specialist who really understands these conditions. I met him last week and had a full calibration and some tests I have never had before. The echo was much more involved with the pushing stomach technique can't remember the name, plus new blood tests Troponin and BNP which were significantly elevated (38 and 950 respectively but unfortunately no historic data to know whether this had changed in 20 years). Overall he was very positive. give me more advice and tips. We talked about my left atrium which has a volume of 55 (why does everything have to be so abnormal). and of course the risk of Afib which really worries me. I await his full notes but overall I came away reassured. It's all about symptoms of course and here I have been really lucky to-date. There is something I wanted to check with others. I do often get some discomfort in the chest, usually top left or directly over the heart, I can't call it pain but I have always thought it was trapped gas as it goes when gas moves. Do others get this? I really wonder sometimes whether it is angina but it's never painful. I also feel every heart beat, always have, I know when I have an extra beat/missed beat so I am really worried about Afib. My OH has it, I have felt his pulse and I can believe he can't he can't feel it, I wouldn't be able to cope with it so don't think about it. I have no SoB, no restrictions but know this may change so just take it as it comes. Well that's me sorry such a long story but might help those just diagnosed, I remember I was terrified particularly after being told I had had a heart attack.

I just joined this group and would like to say "hi" to all the members. No side effects so far but am quite anxious about the possibility. For those who have experienced them, when do they usually start?