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Hi everyone! My name is Mike, and I'm new to the forum. I'm 23 years old and have known that I have had HCM for 10 years now. I haven't gotten to talk to anyone else with this disease and so your info is invaluable. Please offer any answers that you can to questions that I pose. Thanks!
I didn't think I had any symptoms until I was 18. In retrospect, I'm sure that I was having at least one. I trained very hard on my conditioning for basketball between the ages of 15-17, but despite my effort, I was only in "decent" shape compared to the rest of the team. When I was told that I had this disease at 13 years old, I didnt' want to believe it. So I didn't. I continued my active lifestyle paying no heed to the doctors warning that I might drop dead and that "by the age of 20 you will either be in a wheel chair or need a heart transplant". I thought I was fine until that age of 18, when after a long night of drinking and smoking pot I experienced the first of many terrifying epsidoes of tachycardia. While trying to sleep that night I felt my chest get all warm and my heart started racing about 160 bpm. My arms got all tingly and I was pretty scared, but at the time I was working in Yellowstone National Park and so there wasn't really anywhere that I could go. I eventually fell asleep. I didn't even consider that the episode might have been from my heart. Instead I blamed it on "weed that was laced with something" and continued on. I didn't have any problems for about another 8 months when after a night of drinking and a day full of stress (My father had just had a heart attack) I got my first REAL scare. On the drive home from visiting my father my chest started to feel uncomfortable. I lit a cigarette and tried to ignore it. It started feeling worse. I can't say how, exactly, that it felt bad, it just did. I pulled over and let my friend drive. Then it hit me. All of the sudden it felt like a bag of hot water popped in my chest and warmth spread throughout my chest and into my neck. My heart sped up rapidly, almost like it went from resting to sprinting. It got up over 200 bpm and I felt pretty sure that I was dying, lol. My hands wern't only tingling this time, but they gnarled up so that I couldn't move them well. At the emergency room they diagnosed me with panic attacks and dismissed me. Lol, I didn't complain, I liked that diagnosis a lot better than what deep down I really knew it was. I didn't have another attack for a while, but the next time I did they were there to stay. At twenty years old I started getting attacks about once every 2 weeks or so. They started really looking into at that point and found that, lo and behold, it was SVT's. I found a good doctor who immediately put me on Toprol and Co Enzyme Q 10 to improve my diastolic function. The Toprol worked and in the last 3 years I've had only 2 or 3 attacks or so. The doctor said that I had symmetrical HCM and that the wall thickness wasn't all that bad really, only 1 mm above high normal. My Diastolic function wasn't great, but he said he could improve that. After 6 months or so we got my diastolic function looking good and I felt ok and so he said I could do whatever I wanted again, anything. I went right back to exercising, but over the next year I noticed that my capacity for exercise was more limited than it used to be. I asked him about it, and he said that the symptoms can get worse without the disease getting worse. He examined me to find that nothing had changed and told me to work through it. So I did. He advised me also to get a cardiologist closer to my area to follow up with rather than traveling 1700 miles to see him every 6 months. If anything big came up he told me to go see him, but other than that, just follow up close to home with a local cardiologist. On my 22nd bday I went to my first appoinment with the new doctor and he ordered an echo, as I'm sure you're all familiar with. He said he'd read it later and get back to me. He called later that night long after business hours were done. I didn't like it already. He asked me what I was doing, and I told him I was going out to have some beers. He told me to lay down and don't do anything. Just walking for now, nothing else. No smoking, drinking, etc. Try to avoid stairs. I asked him why and he told me that he measured a resting gradient of 120 mm. I took a cardiac cath soon after at his request to further investigate it. After the proceedure he said that he had good news. The gradient could only be provoked to be 60 mm, they must have mismeasured. He said no more alcohol, no more sports, but I can walk and take it easy with the exercise. I went to see my main cardiologist and he gave me an echo and found that everytyhing was the same still, no gradient, same wall thickness. He told me to do whatever I wanted. The symptoms worsened over the next year and finally when I was 23, they were now so bad that going up stairs winded me and made my heart race. I can't drink alcohol anymore at all, and if I do, the next day I'm in bed all day. I don' t think a day goes by that I feel decent. In fact, I can't hold a job and I almost never leave the house now. I'm thinking of applying for disability. I called my doctor and asked him to make my bi-annual appointment sooner because I was feeling especially bad lately. He gave me an echo, same old routine, and this time found tha tI had a 120 mm gradient, just like the other doctor had found. He said it was systolic anterior motion and sent me to a heart surgeon, told me that the surgeon would deem what was necessary to correct it. The surgeon wanted his own measurements and sent me for an echo to find, surprise again, that this time I had no gradient. He said my thickening was severe though, and that was causing my symptoms. I went back to my doc who after more testing, concluded that diastolic dysfunction (mainly to the papillary muscle) was causing the SAM and thus the intermittent gradient. Therefore he concluded that if we treated my diastolic function, I should be fine. He also said that my wall measurements were still the same and only mild to moderate at most. Well, we treated my diastolic function and it's almost normal (not quite) but I still feel worse than I have ever felt. Whenever I eat my heart goes fast. It's gotten so bad that I make myself vomit if I overeat so that my heart will slow down. Living like this isn't living at all and I'm very frustrated. I made an appoinment with a doctor I saw on this website (Dr. Mark Sherrid) in hopes that maybe he will be able to shed some light on the subject. My doctor says that I'm able to work and do alot of things, just listen to my body and I'll know what I can and can't do. I told him if I listened to my body I would hardly ever sit up even. HAS ANYONE EXPERIENCED THESE SYMPTOMS? HAS ANYONE HAD A HUGE GRADIENT AT TIMES AND AT OTHER TIMES NONE WHATSOEVER? HAS ANYONE HAD THEIR SYMPTOMS WORSEN QUICKLY? At the rate things are going I wouldn't be surprised if I was in a wheelchair by this time next year. By nature I am an athlete and a traveler. I REFUSE TO LIVE LIKE THIS AS THIS IS NOT LIFE, IT ISN'T EVEN A CHEAP IMITATION THEREOF!. Someone please answer this. I know it's a long entry and I ramble, so I appreciate anyone who took the time to read it. Thank you everyone.
Mike
I didn't think I had any symptoms until I was 18. In retrospect, I'm sure that I was having at least one. I trained very hard on my conditioning for basketball between the ages of 15-17, but despite my effort, I was only in "decent" shape compared to the rest of the team. When I was told that I had this disease at 13 years old, I didnt' want to believe it. So I didn't. I continued my active lifestyle paying no heed to the doctors warning that I might drop dead and that "by the age of 20 you will either be in a wheel chair or need a heart transplant". I thought I was fine until that age of 18, when after a long night of drinking and smoking pot I experienced the first of many terrifying epsidoes of tachycardia. While trying to sleep that night I felt my chest get all warm and my heart started racing about 160 bpm. My arms got all tingly and I was pretty scared, but at the time I was working in Yellowstone National Park and so there wasn't really anywhere that I could go. I eventually fell asleep. I didn't even consider that the episode might have been from my heart. Instead I blamed it on "weed that was laced with something" and continued on. I didn't have any problems for about another 8 months when after a night of drinking and a day full of stress (My father had just had a heart attack) I got my first REAL scare. On the drive home from visiting my father my chest started to feel uncomfortable. I lit a cigarette and tried to ignore it. It started feeling worse. I can't say how, exactly, that it felt bad, it just did. I pulled over and let my friend drive. Then it hit me. All of the sudden it felt like a bag of hot water popped in my chest and warmth spread throughout my chest and into my neck. My heart sped up rapidly, almost like it went from resting to sprinting. It got up over 200 bpm and I felt pretty sure that I was dying, lol. My hands wern't only tingling this time, but they gnarled up so that I couldn't move them well. At the emergency room they diagnosed me with panic attacks and dismissed me. Lol, I didn't complain, I liked that diagnosis a lot better than what deep down I really knew it was. I didn't have another attack for a while, but the next time I did they were there to stay. At twenty years old I started getting attacks about once every 2 weeks or so. They started really looking into at that point and found that, lo and behold, it was SVT's. I found a good doctor who immediately put me on Toprol and Co Enzyme Q 10 to improve my diastolic function. The Toprol worked and in the last 3 years I've had only 2 or 3 attacks or so. The doctor said that I had symmetrical HCM and that the wall thickness wasn't all that bad really, only 1 mm above high normal. My Diastolic function wasn't great, but he said he could improve that. After 6 months or so we got my diastolic function looking good and I felt ok and so he said I could do whatever I wanted again, anything. I went right back to exercising, but over the next year I noticed that my capacity for exercise was more limited than it used to be. I asked him about it, and he said that the symptoms can get worse without the disease getting worse. He examined me to find that nothing had changed and told me to work through it. So I did. He advised me also to get a cardiologist closer to my area to follow up with rather than traveling 1700 miles to see him every 6 months. If anything big came up he told me to go see him, but other than that, just follow up close to home with a local cardiologist. On my 22nd bday I went to my first appoinment with the new doctor and he ordered an echo, as I'm sure you're all familiar with. He said he'd read it later and get back to me. He called later that night long after business hours were done. I didn't like it already. He asked me what I was doing, and I told him I was going out to have some beers. He told me to lay down and don't do anything. Just walking for now, nothing else. No smoking, drinking, etc. Try to avoid stairs. I asked him why and he told me that he measured a resting gradient of 120 mm. I took a cardiac cath soon after at his request to further investigate it. After the proceedure he said that he had good news. The gradient could only be provoked to be 60 mm, they must have mismeasured. He said no more alcohol, no more sports, but I can walk and take it easy with the exercise. I went to see my main cardiologist and he gave me an echo and found that everytyhing was the same still, no gradient, same wall thickness. He told me to do whatever I wanted. The symptoms worsened over the next year and finally when I was 23, they were now so bad that going up stairs winded me and made my heart race. I can't drink alcohol anymore at all, and if I do, the next day I'm in bed all day. I don' t think a day goes by that I feel decent. In fact, I can't hold a job and I almost never leave the house now. I'm thinking of applying for disability. I called my doctor and asked him to make my bi-annual appointment sooner because I was feeling especially bad lately. He gave me an echo, same old routine, and this time found tha tI had a 120 mm gradient, just like the other doctor had found. He said it was systolic anterior motion and sent me to a heart surgeon, told me that the surgeon would deem what was necessary to correct it. The surgeon wanted his own measurements and sent me for an echo to find, surprise again, that this time I had no gradient. He said my thickening was severe though, and that was causing my symptoms. I went back to my doc who after more testing, concluded that diastolic dysfunction (mainly to the papillary muscle) was causing the SAM and thus the intermittent gradient. Therefore he concluded that if we treated my diastolic function, I should be fine. He also said that my wall measurements were still the same and only mild to moderate at most. Well, we treated my diastolic function and it's almost normal (not quite) but I still feel worse than I have ever felt. Whenever I eat my heart goes fast. It's gotten so bad that I make myself vomit if I overeat so that my heart will slow down. Living like this isn't living at all and I'm very frustrated. I made an appoinment with a doctor I saw on this website (Dr. Mark Sherrid) in hopes that maybe he will be able to shed some light on the subject. My doctor says that I'm able to work and do alot of things, just listen to my body and I'll know what I can and can't do. I told him if I listened to my body I would hardly ever sit up even. HAS ANYONE EXPERIENCED THESE SYMPTOMS? HAS ANYONE HAD A HUGE GRADIENT AT TIMES AND AT OTHER TIMES NONE WHATSOEVER? HAS ANYONE HAD THEIR SYMPTOMS WORSEN QUICKLY? At the rate things are going I wouldn't be surprised if I was in a wheelchair by this time next year. By nature I am an athlete and a traveler. I REFUSE TO LIVE LIKE THIS AS THIS IS NOT LIFE, IT ISN'T EVEN A CHEAP IMITATION THEREOF!. Someone please answer this. I know it's a long entry and I ramble, so I appreciate anyone who took the time to read it. Thank you everyone.
Mike
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