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Gary J Find out more about Gary J
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  • My story

    My name is Gary. I am new to this message board and only recently became aware of this web site.

    Unfortunately, my HCM condition became worse and I needed assistance and found this web site. Now I write my first post, but I am a bit overwhelmed at this point with the amount of information on this web site.

    I am age 41 and I am single.

    I was diagnosed with having an enlarged heart at the age of 23 in 1985. At that time I had been experiencing, first heaviness in the chest, them exertional shortness of breath and then severe palpitations. I went to a doctor, who sent me to a cardiologist, who did some tests, including an echo. He said I had an enlarged heart and prescribed me to 80mg of Inderal. I didn;t think much about it and I didn't think or know that I actually had heart disease. It was downplayed in a sense that I was given the impression that it was minor and that I would be on medication for a while (maybe not permanently). I thought it was something that with medication might go away and that I would be cured and then I wouldn't need the medication.

    From that point and until the beginning of 2003 I did fairly well with the medicine and felt that my disease (as I was now aware tht it was a disease) was and would continue to be stable. Although in retrospect, perhaps over the past couple of years I probably would get tired easier or sooner and would have more difficulty handling alcohol.

    In late 2002 I had a cold. With the cold I had the usual heaviness and achiness and discomfort in the chest. The cold became a bit more severe as I didn't tend to it aggressively enough. So it lingered into 2003. In early January I noticed that I was getting some severe palpitations again and feeling dizzy from them. I wasn't too concerned yet. I was also feeling very achy in the chest when I drank some alcohol. And finally I woke up one day with shortness of breath. I went to the cardiologist (a new one) and he didn't think it was my heart. He did a BNP test nonetheless. My number was 458 and he prescribed a diuretic for a week. I got nervous by all this. Then I was put on an event monitor and I recorded palpitations. The results on the last day showed non sustained ventricular tachycardia. The dr. said I might need an AICD. Now I got real nervous. I then went to see a top HCM expert out of town. The expert said that I was ok and that my condition hadn't changed. But he did recommend I get an AICD. So i scheduled an appointment to get the implant for April 3. The expert reassured me. And he said that my symptoms were from anxiety and not from my heart.

    The implant was a success (or at least to this point). I was very relieved and hoped that I could soon return to my normal life. A little over a week ago I began exercising again. First the stationary bike, then a jog and then yesterday I did very light weight training (which is all I will ever do from hereon).

    The expert says I do not experience symptoms from HCM. He did say that some people with HCM do have symptoms.

    However, I still experience shortness of breath or sort of like a subtle choking feeling. It seems that the symptoms began several days after I began exercising (and the day I started to jog) and wonder if the exercising is a partial cause of this or if it is related to my surgery.

    Although I am grateful for the experts reassurance, I have my reservations about the accuracy of what he is saying. I do feel symptoms and don't believe it is in my head. I am wating for him to respond to some questions I have. And after looking at my echos over the past 10 years it appears to me that the thickness has grown over the years. The expert says it is 25-28 mm. That is, I think my condition has gotten worse over the years and disagree with the expert.

    I know I need to hear his explanation first, but I question if he was careful and thorough with his analysis. And I fear that my symptoms are real and not psychological.

    If it isn't my heart then I would like to know what the cause of the shorness of breath is. It doesn't matter how much reassurance I get. Nothing holds more weight than how I feel.

    After beign stable and relatively healthy for many years I now have concerns and am depressed. I can't be myself when I am not feeling good. It seems to have gotten worse over night and out of nowhere, which makes it so difficult.

    I want an explanation from the expert, but am having a difficult time getting through to him.

    I pray that I can overcome this. And I pray for all the other people out there coping with this, as I know that there are people in greater distress than myself.

    I don't necessarily know which activities make the disease worse, which risk sudden death and which just cause symptoms. For example my understanding is that competitve sports risk sudden death. And that alcohol or caffeine could cause symptoms but not make the disease worse (or can it?). And that weight lifting in excess of light weights can make the thickness worse. Does anyone know of other lifestyle things and their impact on the disease.

    Over the past couple of years I used a laser comb on my scalp for hair growth. While it was good for my hair, it seemed that I experienced palpitations and lightheadedness from the device and that my condition got worse ever since I began using it. I no longer use it. The doctors don't think it did anything, but I wonder.

    Thank you and I look forward to hearing from others.

    Gary J

  • #2
    Re: My story

    Hi Gary. You are in a very good place for information. First I would ask you to read through the site, not just the message board. There is a lot of information on this site that will help you understand what's going on with your heart. Next I would read through some of the messages. You are among others who have felt exactly like you are feeling. Seems many with HCM do not realize that there are others like them until we meet online.

    I don't want a name on this board about which "expert" you saw, but I think that perhaps he may not be an HCM expert. There aren't many of them out there. If he's inferring that your symptoms are in your head and not in your heart, *by the way, a very familiar thing to hear from non-experts* then he may not be the right doc for you. You are welcome to call Lisa Salberg, 973-983-7429, and she will be happy to talk to you about doctors, your condition, and who is an expert that would be a great match for you. And Lisa knows a lot about HCM first hand. She also has it.

    I just want to welcome you to the HCMA and I'm confident you will find at least some of your answers here.

    Reenie
    Reenie

    ****************
    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.

    Comment


    • #3
      Re: My story

      Hi Gary, welcome to the group. You will find much support from others and many will identify with your story. It seems you are still waiting for the final report and recommendation from the expert who has seen you, so write down your list of questions and concerns. Otherwise, you just won't be able to remember everything you want to ask. If the doctor doesn't have time for all your questions at that time, schedule another time. When you are ready, call Lisa and talk with her (HCMA office). It will be helpful if you have all your information from this first doctor at that time. She will be able to answer many questions for you and give you info specific to your situation. Then you can decide if you want to see another HCM specialist and who that might be. Unfortunately, it is too common to assume that symptoms are all in someone's head. Of course, depression can make you feel bad and make symptoms seem worse, but feeling bad and having bad symptoms can cause anyone to be depressed! I hope that you are able to get all this sorted out quickly and begin feeling progress quickly. Best wishes, Linda

      Comment


      • #4
        Re: My story

        Hi Gary,

        Can't write more right now --I'm out of town, however, I just quickly wanted to point out that an ICD (AICD) is not going to make your symptoms go away. It is simply an insurance policy against vtach and vfib. If they have you a dual unit with a pacemaker, that sometimes makes people feel a little bit better, but no guarantees.

        Please call Lisa and get the names of some HCM specialists that we recommend and then you can get your symptoms sorted out.

        take care,

        S

        Comment


        • #5
          Re: My story

          Gary, I don't think your symptoms are all in your head at all. I have all of your symptoms and my doctors have said they are caused from the hocm. I have the obstructive form and I don't know if this makes a difference or not. But it really bothers me that the so-called expert you went to tells you they are not symptoms of hcm and that it is in your head and because your are anxious. I don't think so! As to whether the symptoms are dangerous or not, I don't know. I just know of many hcm people that have those same symptoms. I hope when you go back to the doctor that you get more info but maybe you might want to find a good hcm expert from Lisa. She has several names across the country. Many doctors know about hcm but there are only a few that know all the ins and outs. Keep reading thru all the old messages on this board (including the archives) and you will get alot of information that way also. Welcome aboard! Kathy

          Comment


          • #6
            Re: My story

            Hi Gary, I also don't think your symptoms are in your head, they are very consistent with what a lot of HCMers have.
            v-tach or a-fib do not come from your head.
            If alcohol sets off palpitation, you should not drink it. In some cases it starts a-fib and in some cases that can become permament.
            You should also cut back on your exercise if you end up with a heavy chest or SOB. Try just the cycling which is a easier on the heart than jogging.
            Your specialist seems a little matter of fact and the fact that your on Inderal would indicate he may not be up on HCM.
            Inderal is an older beta-blocker that they do not use as much any more, there are newer ones that seems to work better.
            Give Lisa a call, see if she is familiar with your specialist and she could probably suggest another if you want another opinion.
            Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
            So if you are capable of thought then you are capable of great things
            Good luck and stay well.
            Glen

            Comment


            • #7
              Re: My story

              Gary,
              Thank you for sharing your story... what is intersting to me is that I could replace your name and age and it is the same story I hear all the time. If you are feeling alone...PLEASE know your not!
              I am not sure what specialist you went, but I find it odd that you have not gotten a call back from the doc yet?
              If you want additional information or names of other docs let me know.

              Some of the questions you have asked in your posting have been addresses here on previous threads. You may wish to use the search feature located above to get straight to the topics you want.
              If you still have questions that have not been addressed please let us know.

              Best wishes,
              Lisa Salberg
              Knowledge is power ... Stay informed!
              YOU can make a difference - all you have to do is try!

              Dx age 12 current age 46 and counting!
              lost: 5 family members to HCM (SCD, Stroke, CHF)
              Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
              Therapy - ICD (implanted 97, 01, 04 and 11, medication
              Currently not obstructed
              Complications - unnecessary pacemaker and stroke (unrelated to each other)

              Comment


              • #8
                Re: My story

                Hi Gary

                Sorry for all the conflicting information you are having to sift through. I've had HCM symptoms from age 40. I'm now 59 and still suffer some of the same sympthoms you speak about. To me, the best treatment was finding a true specialist with a history of treating HCM patients. HCMA has been a life saver for me. The HCMA has good resources for HCM specialists. Also, after learning and getting treatment I suffered depression. Treatment is very important for depression and anxiety. If you do, indeed, discover you have HCM it is very important that your family understands your condition very well. Sometimes, an HCM patient looks well, but things are sometimes very different inside.

                Hope I've been of some assistance.

                Sincerely

                Wayne

                Comment


                • #9
                  Re: My story

                  Thank you for all the responses.

                  A couple of things I want to point out.

                  Currently I take 100mg of Toprol, so I am not currently on Inderal. Although my experience with Inderal was very positive. I never had any problems with it.

                  The expert or HCM specialist I saw is one that works at a top facility and is nationally renowned for his expertise on HCM. So it is hard for me to say he is not qualified. Although, he may or may not be the right doctor for me.

                  I'm not very knowledgeable about the disease, but my understanding is that every case is unique even if there are some things in common amongst many individuals. So I can't say the expert prescribed the wrong treatment for me. Although these new symptoms are clearly not in my head. I am still in denial and want to be back to the way I was prior to the past four months when my symptoms got worse following a bad cold.

                  I fear that my septal thickness has increased and thus the reason for more severe symptoms. Does increased thickness increase the frequency of palpitations, as I have had more these past 4 months than ever before? Or is it unrelated? If my septal thickness has increased, I wish I knew why as I thought it typically remained stable.

                  Another challenge (as I discussed with Lisa) is that people look at me and think I am fine and don't understand that I have these difficulties. But that s/b my biggest problem.

                  I will continue to pursue a response from the expert and keep you posted.

                  I must admit on the one hand I liked all the reassurance I received from the expert. It makes me believe I can live a close to normal life. But on the otherhand, if I know I have been short of breath at times and having more palpitations, and the doctor dismisses it, it raises some questions. And like I said he is considered nationally as an expert.

                  The thing about exercise is that I actually feel good when I exercise (although I have not engaged in competitive tennis since all this began and I don't know how I would fare if I did that. I was playing competitively as recently as October). In fact I think I feel better exercising then at rest. But the exercise may be impacting how I feel at rest later on. I don't know. Although, I admit, jogging may be a little much right now, since I just had my ICD impanted less than three weeks ago.

                  Thanks again and I hope I can make a contribution to this organization.

                  Gary

                  Comment


                  • #10
                    Re: My story

                    Dear Gary,

                    Yes, HCM is very individual. It is also hard to accept (for some of us) that there are just going to be symptoms no matter what. No medication is going to make you feel 100% like before. There is a level of sob, chest pain, and palpitations that is just par for the course --it is hard to find where that level is between tolerable and intolerable, especially when you want to be 100%. I have struggled with this quite a bit in the early days and now (20 years after diagnosis) probably ignore more than I ought to.

                    Also, this is a very stress-inducing and anxiety-producing disorder, which can certainly make you feel worse, too. Those symptoms are real, but not necessarily purely HCM-caused, albeit indirectly HCM's fault. We have all struggled with this, too.

                    I suspect that your doctor is perhaps thinking of it this way, and may not "get" where you are in terms of what is tolerable for you. This doesn't diminish what you are feeling in any way; I'm merely trying to shed light on a difficult subject.

                    Doctors are people too and some of us relate better to different types. There are other experts if you find that after further discussions with this one, you want to see someone else. However, you should give him the opportunity to address your concerns before you make any decisions.

                    I hope you feel better. It can take several tries to get on a suitable medication regime.

                    As for your septum-- During adulthood, the septum doesn't grow. But symptoms can get worse and get better without any apparent cause. However, b/c of the HCM, your cold make have "gone to your heart" and caused some minor infection in the pericardium, which will make you feel like you can't breath, lots of chest pain, etc. This just happened to someone I know, and he is feeling better, but it has taken several months for that to happen.

                    Once your ICD has healed up (in another month or so), you should exercise as much as you and your doctor are comfortable with.

                    You are still recovering from surgery, so try not to worry about the sob and palps, just take it easy, heal up and then go from there. Things will probably sort themselves out.

                    keep us posted,

                    S

                    Comment


                    • #11
                      Re: My story

                      Hi Gary
                      I think you brought up an interesting topic about anxiety and depression. I suffer alot from anxiety myself which of course confuses me quite a bit because it's hard to tell the difference between an anxiety attack and heart palpatations. At least for me it is.. Anyways, I'm wondering how many others with HMC have anxiety/depression/mental illness....Just a thought..... This message board is the greatest Gary. Don't be afraid to ask what ever questions you have. Someone will surely answer you. God Bless.
                      Tammy

                      Comment


                      • #12
                        Re: My story

                        Thank you for responding Sara.

                        I too was diagnosed with the disease 20 years ago and have managed it. Things noticably changed during and after the cold/infection. I intuitively wondered if there was some sort of infection related to the heart. It felt like it. Otherwise I didn't have any explanation for the sudden changes. Especially since you point out that the septum doesn't grow in adulthood. Maybe in the next month or so the effects of the cold that has lingered on and the surgery will dissipate.

                        Your advice is well taken. I will definitely avoid over tiring myself.

                        About the septum. I did notice an increase in the IVSD number on the echo over the years. Is that related to my septum and is there an explanation for that? Its about 10 mm higher. I realize technology changes.

                        Thanks again for your support and comments. Much appreciated.

                        Comment


                        • #13
                          Re: My story

                          Dear Gary,

                          IVSD is your septum (intraventricular septal width at dystole).

                          What kind of time frame are we talking about for your increase? Also realize that there will be slight (2-3mms) differences between echos taken by different people sometimes.

                          S

                          Comment


                          • #14
                            Re: My story

                            Gary, I too was a competitive tennis player and I also felt better when I was exercising but as you said my symptoms would then get worse - sometimes for a day or two and sometimes longer. I see two cardiologists and they both could not understand how my symptoms would get better with exercise. I could only report to them what symptoms I had and from there I felt they could take it or leave it. I have since learned to manage my exercise, eating, hydration and meds so that my symptoms are minimized. Also, it seems that the longer I can go without initiating symptoms the better I feel over time and this seems to build until I cross the line and have to start over again. At this point I am walking 1 - 2 miles and lifting light weights and able to do moderate house chores and have a tennis wall I hit against for 10 min several times a week - no running. I also take protein supplements(lost 25 lbs of muscle due to lower activity level) and co Q 10 100 mg The depression thing for me I felt was a cop out by my docs to try to explain away why I felt so bad. The meds were so bad for me initially(sotalol) - now amiodarone and coreg) that I split them up to twice a day. I was miserable and told the docs that I new it was the meds because at the end of a 12 hour cycle I started to feel considerably better only to start the cycle over again with the next dose. They wanted to put me on anti depressents and I refused because I already was mentally affected by the drugs and did not want to add another. Inderal worked great for me for 40 years but could not keep me out of sustained tachycardia. It took me about a year to find the right combo of drugs and another 6 months to settle in to a healthy routine. I know you will be back on a tennis court but most likely not competitively, I have been hitting with an 80 year old USTA teaching pro and we match up pretty well ...He doesn't run and neither do I. Welcome to this site - its the best place for HCMers - I learned more from this site in a month than all the doctors I had seen over the past 40 years!! Keep in touch
                            Chuck B

                            An inch is a cinch, a yard is hard

                            Comment


                            • #15
                              Re: My story

                              Originally posted by Gary J
                              Thank you for all the responses.

                              A couple of things I want to point out.

                              Currently I take 100mg of Toprol, so I am not currently on Inderal. Although my experience with Inderal was very positive. I never had any problems with it.

                              The expert or HCM specialist I saw is one that works at a top facility and is nationally renowned for his expertise on HCM. So it is hard for me to say he is not qualified. Although, he may or may not be the right doctor for me.

                              I'm not very knowledgeable about the disease, but my understanding is that every case is unique even if there are some things in common amongst many individuals. So I can't say the expert prescribed the wrong treatment for me. Although these new symptoms are clearly not in my head. I am still in denial and want to be back to the way I was prior to the past four months when my symptoms got worse following a bad cold.

                              I fear that my septal thickness has increased and thus the reason for more severe symptoms. Does increased thickness increase the frequency of palpitations, as I have had more these past 4 months than ever before? Or is it unrelated? If my septal thickness has increased, I wish I knew why as I thought it typically remained stable.

                              Another challenge (as I discussed with Lisa) is that people look at me and think I am fine and don't understand that I have these difficulties. But that s/b my biggest problem.

                              I will continue to pursue a response from the expert and keep you posted.

                              I must admit on the one hand I liked all the reassurance I received from the expert. It makes me believe I can live a close to normal life. But on the otherhand, if I know I have been short of breath at times and having more palpitations, and the doctor dismisses it, it raises some questions. And like I said he is considered nationally as an expert.

                              The thing about exercise is that I actually feel good when I exercise (although I have not engaged in competitive tennis since all this began and I don't know how I would fare if I did that. I was playing competitively as recently as October). In fact I think I feel better exercising then at rest. But the exercise may be impacting how I feel at rest later on. I don't know. Although, I admit, jogging may be a little much right now, since I just had my ICD impanted less than three weeks ago.

                              Thanks again and I hope I can make a contribution to this organization.

                              Gary
                              Gary, Who is the specialist?????????
                              Chuck B

                              An inch is a cinch, a yard is hard

                              Comment

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