HCM-ers: Introduce yourself or just say hi

Hello everyone, I'm Rosaria, I'm 65 and was diagnosed with HCM about 6 years ago. I really didn't realize how serious it could be for the longest time, my own fault, I should have done some research. I was diagnosed with AFIB shortly after, although I think I had had it for a while, starting in my early fifties I would often end up in the emergency room, with what I thought were panic attacks, but in retrospect I think it was AFIB episodes, if that makes any sense, I've been on meds for the past 2 years, and I've had only 2 episodes of AFIB since, but they were pretty bad, so I will probably have to start thinking about the next step. Sorry if this was rambling, I'm just so happy I found a group were people understand what I'm going through. Blessings!

Still Rosaria here, I forgot to ask, can anyone make an appointment at Mayo? I have so much respect for them since I watched a Ken Burns documentary on Mayo clinic. Thanks!

My doctor referred me to Mayo's for HOCM, but I thought on the Mayo Clinic site I did see a place asking if you would like to make an appointment. You said that you went to the ER for what you thought were panic attacks but ended up being A fib? I was diagnosed in March with Afib. What were you feeling before you went to ther ED?

Hi angie, thanks for your reply! I would feel the blood rush to my head, my heart beating fast,and just a horrible feeling like I was going to drop dead on the spot, one time someone took my pulse, and it was 160, usually by the time I would get to the ER the earth would have stopped beating so fast though, so they couldn't catch it on the EKG, these days when I do have an episode, only 2 in the last 2 years thankfully, they last for hours, even while they're pumping meds in my IV, the last one I thought I would die for sure. I understand that AFIB is different for each person though, and not everyone has bad/painful episodes.

You can make your own appointment with Mayo

Thank you so much rrowner!

The reason I asked about how you were feeling was because when you called them episodes it really caught my eye. I was first diagnosed in January this year with hypertension that I didn't know I even had. They did an EKG, an echocardigram, and found I had a heart murmur, left sided walls of my heart thickened but could not give me a reason for my "episodes". I described them as like an adrenaline rush that rushed from my hips, moved up my chest, then to my head. My blood pressure would go up, and also my heart rate, my legs get wobbly and weak, and I feel dizzy, sometimes it takes my breath away temporarily. They thought I was having anxiety attacks. I denied they were from anxiety. I can be just laying in bed watching TV or having a good time with my grandchildren. No exertion at all, nothing making me anxious. In Feb, diagnosed with HOCM, and in March A -fib. Im still having the episodes even though I'm now on medications for all of the above. I further pushed for more tests. They found a tumor on one of my ovaries and thought perhaps the tumor was secreting hormones into my blood stream and causing the adrenaline rushes. I had the tumor removed 18 days ago. Im still having the rushes. I was never told they could be from Afib. I know some symptoms are from HOCM, similar to those on this site but doctors think my heart is stable at this point. They sometimes last for an hour or so, sometimes 5 or 6 hours. After 4.5 months I'm exhausted from having them daily and just trying to find answers. So when you wrote, "episodes" my antennas went up and wanted to hear more and wondering what they felt like for you. Enough rambling for me. Thanks for listening. Hoping you are doing well.

Angie, you gave me chills, you described the episodes so much better than I did! That is exactly how they felt for me, the doctors never said they could be from AFIB, that is just what I think in retrospective. I can understand you being exhausted, I cannot imagine having them daily, mine were more like every couple of months, and that was miserable enough. It is so frustrating when you know something is wrong, and they can't tell you why. What meds did they give you for AFIB?

Hi, I have HCM and I am going to have surgery in July. I am wondering about the recovery so I can prepare myself mentally and physically.

Hi there is not much to do physically. Mentally set your life in order leave nothing left unsaid to the ones that you love. Get ready to hurt don't be afraid to get max pain meds to start easier to get up with it. I myself have been opened up 3 times for HOCM, SAM, Two valve replacement. Don't worry you go to sleep then you wake up. I will pray for you. RMc.