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HCM, Anxiety and Panic.... Is there a correlation?

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Darren1 My real name is Darren, I have HCM and am a VERY active person that loves to exercise. Find out more about Darren1
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  • #31
    Re: HCM, Anxiety and Panic.... Is there a correlation?

    Lisa, thanks for sharing something so private. I'm sure there are lots of people here who can totally relate to your words. Welcome to the HCMA.

    Reenie
    Reenie

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

    Comment


    • #32
      Re: HCM, Anxiety and Panic.... Is there a correlation?

      Thank you so much for starting this thread of discussion. I have spent the last 4 days thinking about this because of a near fainting spell I had at work last week. I have been trying to figure out if there is any relationship to my HCM. Since I have been under a lot of stress at work, my doctor and I for now have written it off to stress and lack of sleep, not eating properly , etc.
      But now that I am reading about other people's situations, I am wondering if it is related to HCM. With me anyway, since I have not had anything like this happen before, I am wondering if it is possible that it starts out as a normal stress situation, but then the adrenaline that pumps because of the event, kicks off an increased heart rate etc and spirals from there. I know that I may not ever know, but it certainly is helpful to hear your stories and compare to my own situation, so thank you for sharing!
      Deb

      Comment


      • #33
        Re: HCM, Anxiety and Panic.... Is there a correlation?

        Has anyone had an alcolhol ablation or open heart done and found that afterwards their panic/anxiety attacks lessoned?
        Tammy

        Comment


        • #34
          Originally posted by Deb Baxter View Post
          Re: HCM, Anxiety and Panic.... Is there a correlation?

          Thank you so much for starting this thread of discussion. I have spent the last 4 days thinking about this because of a near fainting spell I had at work last week. I have been trying to figure out if there is any relationship to my HCM. Since I have been under a lot of stress at work, my doctor and I for now have written it off to stress and lack of sleep, not eating properly , etc.
          But now that I am reading about other people's situations, I am wondering if it is related to HCM. With me anyway, since I have not had anything like this happen before, I am wondering if it is possible that it starts out as a normal stress situation, but then the adrenaline that pumps because of the event, kicks off an increased heart rate etc and spirals from there. I know that I may not ever know, but it certainly is helpful to hear your stories and compare to my own situation, so thank you for sharing!

          I submitted to a DNA test for gene mutation which came back negative. This did not surprise me because I do not believe my HCM is genetic.

          The symptoms for HCM in my case did not present until about one week after being in a serious head on automobile accident. During recovery, I developed a DVT and PE as a result from surgery (I was not prescribed blood thinners). Afterwards I experienced chronic episodes of A-Fib. It was then that I was officially diagnosed with HCM.

          I have done some research about the effects of nor-epinephrine and epinephrine on the heart muscle tissue. It appears that there are some underlying effects of the adrenalin on the myofiber. However, there has not been a lot of study in this area. It stands to reason in my way of thought, that it would be a cause for HCM. After all, beta blockers are used to control the amount of adrenalin so as not to cause arythmias. I am surprised that there has not been more research into this area of molecular study for causes of HCM.

          Comment


          • #35
            Negative dose not mean you do not have genetic HCM.. we have only identified 50% of the genes that cause HCM.. a negative test means you dont have one of the KNOWN mutations. This may change in time. There has been a great deal of study as to root cause for HCM - and it is rather clear that there are genes responsible for nearly all cases of "TRUE" HCM. We would be happy to discuss this in more detail. please call the office 973-983-7429
            Lisa
            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


            • #36
              Hi Lisa,

              I was informed that a negative results does not mean that there is not a gene mutation, that it may still be a gene mutation that is unknown at this time. I am clear on that.

              I am going on what I do know which is that HCM did not present in my case until after a very traumatic experience which caused extremely high levels of adrenalin and DVT and PE. From that time I have experienced chronic A-Fib which has to be controlled with beta blockers. Previous to the trauma I did not have any episodes of A-Fib. Strenuous exercise and stress levels seemed to bring on A-Fib. I now have an ICD dual lead for pacing and SCD protection. I am suggesting that environmental factors may be responsible for HCM to present whether it is caused by gene mutation or not. I may never know for sure if there is a gene mutation in my case, however the trauma certainly seems plausible and I can not rule it out with only %50 of HCM cases attributable to gene mutations.

              I am glad to call your office some time and discuss this.

              By the way, I very much appreciate all that you have done with HCMA and am thankful for your efforts. You have been a tremendous inspiration to me! THANK YOU!

              Comment


              • #37
                I understand your trying to make sense of the "origin" of HCM. The truth is most HCM patients do not necessarily experience any symptoms until some point in an adulthood....I did not start having symptoms until my 50s. I would think the adrenalin surge might do something temporarily to your heart but not cause a permanent situation. My thoughts would be that the discovery of your HCM was coincident with the auto accident and that your journey into afib,, without any previous cardiac history, lead the doctors to look for the cause of the afib.
                I myself went through what was called Takotsubo cardiomyopathy....Complete (temporary) heart failure caused by a surge of catecholamines after being on Asthma meds for 2 weeks......it was totally unrelated to my HCM....However, my HCM symptoms did get very much worse after that episode. So, I guess what I'm saying is that the adrenalin issues could have acted as a trigger to HCM symptoms also.
                Last edited by JillC; 04-06-2016, 12:47 PM.
                After years of symptoms:
                Officially Diagnosed HOCM 2006
                Myectomy 3/11/13 at non-COE
                Extended Myectomy 7/23/14
                At Mayo with Dr. Joseph Dearani

                Comment


                • #38
                  Originally posted by JillC View Post
                  I ...I myself went through what was called Takotsubo cardiomyopathy....Complete (temporary) heart failure caused by a surge of catecholamines after being on Asthma meds for 2 weeks......it was totally unrelated to my HCM....However, my HCM symptoms did get very much worse after that episode. So, I guess what I'm saying is that the adrenalin issues could have acted as a trigger to HCM symptoms also.
                  JillC, I concur with you and that is what I was getting at when I stated: " ...I am suggesting that environmental factors may be responsible for HCM to present (trigger) whether it is caused by gene mutation or not. I may never know for sure if there is a gene mutation in my case, however the trauma certainly seems plausible (trigger) and I can not rule it out with only %50 of HCM cases attributable to gene mutations."

                  Takotsubo cardiomyopathy, as I understand it, is another way of saying "Stress related Cardiomyopathy". So, we have similar expressions (triggers) for our HCM whether it is rooted in gene mutations or not. Do you agree?

                  My point is, I may have led a full and normal life without ever having symptoms of HCM if it were not for the stress/adrenalin/catecholamines (whatever?) which seems to be the trigger for my HCM to express/present.

                  Comment


                  • #39
                    Few people can say when their clinical HCM started. Most of us know when we were diagnosed, but few of us know when symptoms really started (as opposed to when we realized they were present). In general, we can't say that we didn't have clinical disease before some date - I'm not sure how we could know that!

                    For instance, I was diagnosed at age 47, at which time I denied that I had any symptoms, and could have said that I didn't have any disease before then. Years of reflection since then have allowed me to realize that I had symptoms going back at least to age 19. I'm not saying you *had* HCM much earlier than you think - just that it's pretty common for HCM patients to not realize they had symptoms until much later.
                    Myectomy on Feb. 5, 2007.

                    Comment


                    • #40
                      For the record I have not stated that I know when I first acquired HCM. However, I do know as a matter of fact when the symptoms for HCM presented in my case! Prior to the trauma I had a noisy heart valve however, echo-cardiogram did not indicate HCM. There was no concern for HCM.

                      Having been an athlete for most of my life, was considered to be in fantastic health prior to the trauma. Never experienced SOB from climbing a flight of stairs followed by an episode of A-Fib. This all occurred at a specific point in time for me and had my health practitioners perplexed.

                      Been to six separate Cardiologists with a wide range of experience and expertise. All agree that it is HCM.

                      Had two exercise stress echo tests one of which was at a COE (Center of Excellence as recommended by the HCMA).
                      Had an MRI of my heart.
                      Had to change beta blockers because one was ineffective to control the A-Fib which required a hospital stay for three days.
                      Had to take Amiodarone on several occasions.
                      Had gene testing for mutation - negative.

                      This has all been within the last three years. I am 57 years old. Prior to this, no problems. These are the facts that I do know. This forum topic is about "HCM, Anxiety and Panic.... Is there a correlation?" I felt my experience was pertinent and wanted to share my story.

                      My purpose is not to argue. I respect all of the knowledge and wisdom here at the HCMA. I just want to understand. However, it seems to me that somehow there is an agenda to use genetic mutation as the primary and only cause for HCM. I am finding much resistance to any idea or notion that there are other causes (in my case, triggers) for HCM to present/express. I thought there may be some excitement about the possibility to know a root cause.
                      With only %50 of HCM known to be caused by gene mutation, there is a lot of pressure to believe that the other %50 is from gene mutations yet undiscovered. I am not ready to buy into that thought process yet...I will move on and drop it here but it is interesting how my posts have generated a lot of interest for a topic that has been dormant for 13 years!

                      Comment


                      • #41
                        Just to clear up my personal experience....I had symptoms for years before I was diagnosed....starting in my 20s...But was told they were benign and not to worry about them....by the time I reached 55 They were interfering with my life on a daily basis and I started looking for answers. I got a proper work up and diagnosis at the age of 57 and started medication ....I responded well to increasing doses of meds until at age 62 I had the episode of takotsubo cardiomyopathy......After 3 mos recovering from that, my symptoms got increasingly worse and unmanageable with medications of various kinds... Leading to surgery to relieve the obstructive portion of my HCM.
                        So, even though I am gene negative...I had HCM from the get go. It just did not cause me any really big difficulty until my 50s and then got worse in my 60s and is hopefully stabilized post op at age 67.
                        Many can go there entire lives with HCM and not be symptomatic at all! Can an event trigger a WORSENING of SYMPTOMS? I believe so, I have heard it many times. I think what is trying to be said is that the trigger doesn't "cause" HCM, that HCM is a cardiac muscle anomaly that expresses itself in many different ways.....The wide range of its expression in severity, age, type of symptoms etc. make it a very difficult disease to both describe, treat and research.
                        After years of symptoms:
                        Officially Diagnosed HOCM 2006
                        Myectomy 3/11/13 at non-COE
                        Extended Myectomy 7/23/14
                        At Mayo with Dr. Joseph Dearani

                        Comment


                        • #42
                          Sorry you perceive this as a bias. You say that "environmental factors may be responsible for HCM to present whether it is caused by gene mutation or not." If I read this correctly, you're suggesting that sometimes, a mutation may not have the effect of causing disease, unless some precipitating factors occur. Am I reading this reasonably? I want to be sure we're talking about the same thing!
                          Myectomy on Feb. 5, 2007.

                          Comment


                          • #43
                            I suppose that is correct. I may carry a gene mutation, but that does not necessarily mean that the conditions which the gene mutation may create, will manifest itself in my lifetime. Something like the Shingle virus, if you had chicken pox as a child, you carry the Shingle virus but that does not necessarily mean that the virus will present itself in your life time. It may, or it may not...

                            I may be mistaken but that is my understanding of the HCM gene mutations as well. Many people live their whole life without ever having symptoms of HCM even though they carry the mutated gene. Is this correct? (It is what I have been led to believe by my cardiologists and also what I have read from research I have done through different cardiology web sites)

                            Like I stated previously, everything was going good for me before the trauma. After the trauma I started showing signs of HCM.
                            Also like stated previously, I have been an athlete for all of my life (I still play ice hockey and waterski). As I understand it, "Athlete's Heart" is similar to HCM. I suspect that I could have a combination of things going on in me which could have caused the HCM in my case. The trauma from the accident caused a tremendous amount of adrenalin! I was "pumped" for a few weeks. There have been some studies which indicate that adrenalin may also contribute to HCM in mice studies. I realize this is speculation on my part, but it is what makes logical sense to me considering my experience.

                            As for the gene mutation? Maybe they will find one for me but I do not have any that are currently known.

                            Thank you for sharing your experience JillC.

                            I apologize if I come across bull headed but my experience is evidently outside the normal and I get frustrated. I KNOW from my personal life experience and the sequence of events which led up to the effects of HCM. I emphasize that to the doctors but they seem to ignore what I am telling them and refer back to gene mutations... blah blah blah

                            Thank you for your patience with me and reading my posts! :>)

                            Comment


                            • #44
                              OK, good, I thought that was what you meant. That might be exactly what happened to you -- I don't know, but it's plausible in general. That doesn't mean that HCM isn't a genetic disease. All genes have their effects only given particular environmental circumstances. If you change the environment (and by environment, I include all the rest of someone's body), then particular genes can have markedly different effects. In other words, a disease having genetic causes doesn't necessarily mean that having a particular gene means that you will always have that disease -- it may depend on the environment as well.

                              Why haven't we found the basis for the disease in more people? First, I should say that the fact that half or more of the cases have known genetic causes is remarkable: there aren't many human genetic diseases with numbers that high! Second, there's the obvious point that we haven't found all the contributing genes. But I suspect that there are quite a few cases whose causes involve the interactions of genes with one another, or genes with the environment, or both. In other words, it's not just that mutations haven't been found yet; it's that some of them can only be understood by understanding how they interact with other genes or the environment. That also means that we may never be able to explain every case.

                              I'm a biologist. This sort of thing is actually pretty basic to biologists, but we've done a terrible job of educating people about genetics, by convincing them that it's all simple and direct, the way we were all taught (incorrectly, it turns out) eye color works. The fact is that genetic diseases - or any condition resulting at least partly from genetic effects - always occur in a context. We'd say that

                              So, might your HCM have been started the way you suggest? I don't know. I know that there's currently no evidence for processes like that causing HCM, but in principle there's no reason they couldn't occur. I'd still be happy, in common conversation, calling HCM a genetic disease.

                              But in biology we (I'm a biologist) would use more subtle terms. We'd say, for instance, that HCM has a large "genetic component," because we know that not everyone with certain mutations eventually develops disease. Some mutations may be more certain than others to lead to HCM; I never say that a person has a gene that causes HCM, but rather that the person has a mutation that contributes to HCM. That contribution may be large or small, but there aren't many that always, invariably, cause HCM.

                              I'll resist the temptation to go on and on. I hope this helps.

                              Gordon
                              Myectomy on Feb. 5, 2007.

                              Comment


                              • #45
                                Gordon,
                                I appreciate your time and patience with me. The explanation helps tremendously! And, it confirms my understanding however I was not aware that %50 is a high number for diseases attributable to genetic causes.
                                I do not mean to discredit the genetic causes for HCM in any way, I am just saying that from the research I have been doing, it seems like most of the effort has been directed towards gene study.
                                In the past, there were many studies towards adrenergic stress and myocardial disarray which seems to have stopped about 10 years ago. I have attached a brief summary of one of the studies. I have many more concerning myocardial cell damage if you are interested.

                                Since the discovery of my HCM I have been fascinated with biology and DNA. The Internet has been a very useful tool for visiting web sites and getting information. Dr. Euan Ashley of Stanford Health Care has some pretty good videos of the molecular structure of myocardium.
                                When I discovered that there have been previous studies about norepinephrine and adrenergic stress and how it can cause the changes to the myocardial cells, I felt illuminated as it makes perfect sense in my case. For me it was like a revelation, I now know the "truth". It's like a newly converted Christian who wants to share this knowledge and can not understand why others don't share their enthusiasm. At any rate, I am appreciative of your willingness to share your knowledge with me Gordon. I realize that there is way more that I don't know. I have a lot to learn. Thank you!

                                My attachment would not work so I have copied and pasted below. I provide it as information only. If you know about it, please let me know if it has any merit:

                                1. Int J Cardiol. 2005 Mar 18;99(2):277-82.

                                Myocardial disarray: an architectural disorganization linked with adrenergic
                                stress?

                                Fineschi V(1), Silver MD, Karch SB, Parolini M, Turillazzi E, Pomara C, Baroldi
                                G.

                                Author information:
                                (1)Department of Medico-Legal Sciences, University of Foggia, Ospedali Riuniti,
                                Via L. Pinto, 1, 71100 Foggia, Italy. [email protected]

                                BACKGROUND: Myocardial disarray is a structural abnormality found in specific
                                zones of the normal heart. In some conditions, such as hypertrophic
                                cardiomyopathy (HCM), its occurrence represents a pathological process leading to
                                myocardial asynergy. The incidence of "pathological" myocardial disarray in
                                humans is still not known. It has been suggested that a link exists between
                                adrenergic overactivity and myocardial disarray. The aim of the present study is
                                to compare heart findings in conditions with and without chronic sympathetic
                                overtone for evidence of possible linkage in humans.

                                MATERIALS AND METHODS: A total of 340 hearts were studied. They were divided into
                                seven groups: sudden/unexpected coronary death; sudden/unexpected death in silent
                                Chagas' disease; brain haemorrhage following berry aneurysm rupture; transplanted
                                hearts; congestive heart failure, AIDS and cocaine abuse. Findings in these
                                hearts were compared with anatomic changes in 92 control hearts, where the
                                decedent had died from head trauma, electrocution, or carbon monoxide
                                intoxication. The frequency and presence of myocardial disarray were recorded and
                                correlated to heart weight, extent of myocardial fibrosis, and contraction band
                                necrosis (CBN).

                                RESULTS: Hearts from patients with conditions that increased sympathetic tone
                                showed an association of myocardial disarray and contraction band necrosis
                                without any relationship to heart weight.

                                CONCLUSIONS: Myocardial disarray was observed in cardiac areas where it is not
                                found normally. It was associated with adrenergic myocardial stress
                                morphologically expressed by a higher number of foci (p<0.01) and myocells
                                (p<0.001) with CBN versus findings in normal subjects. The condition deserves
                                further study as a possible myocardial asynergic and arrhythmogenic factor
                                especially in sudden/unexpected death.

                                PMID: 15749187 [PubMed - indexed for MEDLINE]

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