If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

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

Collapse

About the Author

Collapse

Darren1 My real name is Darren, I have HCM and am a VERY active person that loves to exercise.
Darren1
Ventricle
Find out more about Darren1
X
 
  • Filter
  • Time
  • Show
Clear All
new posts
    gfox42
    Forum Administrator

  • gfox42
    replied
    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!

    Leave a comment:

  • JillC
    Member of 1000 Post Club!

  • JillC
    replied
    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.

    Leave a comment:

  • mhochkins
    Newbie

  • mhochkins
    replied
    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!

    Leave a comment:

  • gfox42
    Forum Administrator

  • gfox42
    replied
    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.

    Leave a comment:

  • mhochkins
    Newbie

  • mhochkins
    replied
    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.

    Leave a comment:

  • JillC
    Member of 1000 Post Club!

  • JillC
    replied
    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.
    JillC
    Member of 1000 Post Club!
    Last edited by JillC; 04-06-2016, 12:47 PM.

    Leave a comment:

  • mhochkins
    Newbie

  • mhochkins
    replied
    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!

    Leave a comment:

  • Lisa Salberg
    HCMA CEO and Founder

  • Lisa Salberg
    replied
    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

    Leave a comment:

  • mhochkins
    Newbie

  • mhochkins
    replied
    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.

    Leave a comment:

  • TammyC
    Contributor

  • TammyC
    replied
    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?

    Leave a comment:

  • Deb Baxter
    Pinkie

  • Deb Baxter
    replied
    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!

    Leave a comment:

  • Reenie
    Super Moderator

  • Reenie
    replied
    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

    Leave a comment:

  • Glen Beamish
    Super Contributor

  • Glen Beamish
    replied
    Re: HCM, Anxiety and Panic.... Is there a correlation?

    Hi Lisa, all too familiar thoughts and feelling, just remember you are not alone, hang in there you'll be just fine.

    Leave a comment:

  • LHopkins
    Contributor-in-Training

  • LHopkins
    replied
    Re: HCM, Anxiety and Panic.... Is there a correlation?

    Hello, this is Lisa H and I'm new. I was diagnosed with HCM 10 years ago at age 32. I can't say I've ever had panic attacks during my life, except during the last couple of years when I start getting short of breath and feel an episode of AFib coming on. My last one was in June 2003 and I wrote the following, which I have not shared with my family or friends, but I think maybe some of you will understand it...

    No..no, no...hold on, here it comes...
    Breathe, slow it down, breathe deep...
    Let it roll over you and be gone...
    Don't go down...don't let the fear get to you...
    Go or not?...think...make a decision...
    The rush, the roar...is that me?
    My heart is racing...to fast...to hard...
    Get a grip...faith is there...hold on...

    Leave a comment:

  • MartinKennedy
    Junior Contributor

  • MartinKennedy
    replied
    Re: HCM, Anxiety and Panic.... Is there a correlation?

    Being sober has enabled me to deal with the latest medical issue; not as a crisis but as a blessing. I believe that my Higher Power has more for me to do here and I need to be healthy to do it. I really think that nothing happens by accident. If you ever need to talk to another alcoholic, email me and I will give you my phone number. [email protected]. We are all in this together.

    Leave a comment:

Today's Birthdays

Collapse

Working...
X