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.

Scary symptoms. Icd didn't fire therefore not an issue?

Collapse

About the Author

Collapse

Strange is life Find out more about Strange is life
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Scary symptoms. Icd didn't fire therefore not an issue?

    Hi,

    I just wanted to ask what I should do because last night has me pretty worried.

    So I was diagnosed with HCM nearly two years ago. While undergoing testing, it was revealed my Septal thickness was 32mm and I had a poor BP response to exercise where my BP plummeted while my HR went up. I was fitted with an S-ICD as a prophylactic messure and was essentially living with out any problems.

    Last night I was on the verge of falling asleep when I felt my heart race so incredibly fast. I felt really short of breath and as though someone had dropped a boulder on my chest there was that much pressure. I am not sure how long this lasted - surely not any more than a minute or maybe two. I can recal this happening twice before while studying at uni but it only lasted a few seconds then - barely long enough for me to register it and it was before I was diagnosed. All I could think of while it was happening was if that was going to be it. My ICD was going to fire and of all things, it was going to do so while I was awake. It scared me.

    I only just saw my cardiologist and I am not currently on any medication. I just don't really know if I should ignore it and if it happens again then, make an appointment to see him Or just to make an appointment with the GP. The problem is, it is at least a 3hr drive to see the cardiologist and I work full time.


    Any feedback would be greatly appreciated.

  • #2
    Phone the cardiologist's office and ask them whether they can interrogate the ICD. For some models, that can be done remotely; others require an office visit. But it does seem that you (and your doctors) need to know what this event was - and your ICD should have a record of it.

    By the way, there are arrhythmias (like atrial fibrillation or atrial flutter) that shouldn't trigger your ICD to fire (in reality, sometimes they do, but shouldn't) but can involve very fast HR. Not all tachycardia will cause the ICD to discharge. But if you're having one of those kinds of arrhythmia, you do want to know about it and have it treated.

    Gordon
    Myectomy on Feb. 5, 2007.

    Comment


    • #3
      Dear Strange is Life, I totally agree with Gordon. I do have another question.....I see you live in Australia and you said that your cardiologist is hours away. I am kind of surprised that you are not on any medications....Does your cardiologist see many HCM patients? You may want to get a work up by an HCM specialist at some point to make sure all your bases are being covered....you are only 21 years old and HCM does not go away. Dr. Christopher Semsarian at University of Sydney is a world renowned HCM specialist.
      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


      • #4
        Hey,
        Thanks for the feedback! At the end of the day, I decided just to leave it and not worry about it. They can't interogate the device remotely. It hasn't happened again. I made a note and will bring it up with my cardiologist next time I see him. My cardiologist is a hcm specialist and I did see another HCM specialist at a different hospital (when looking at genetic testing) who agreed on the course of treatment. I guess, because I have never really had problems as such, I don't need to take medication. I mean my S-ICD is a safety net right? So I shouldn't be worried..

        Comment


        • #5
          Hello Strange....
          in my opinion, worry is definitely not of any help in an situation .... worry can interrupt your enjoyment of life, keeps you focused on the negative and in general triggers unhealthy bio-chemicals to circulate in your body which can increase symptoms.
          The anti-dote for worry is knowledge, educated choice and a healthy understanding of your own body. You have HCM:, this is a fact. A 3.2 cm thick septum is a very significant enlargement about 4 times normal thickness....and with your thickness and exercise BP drop, having an ICD was absolutely the right choice for your risk factors.
          However, managing the risk of cardiac arrest is only one aspect of good HCM management. The other aspect is knowing your body and managing symptoms when they arise. If you have symptoms ....chest pain, shortness of breath, exercise intolerance, fatigue ....keeping track of those symptoms and working with your HCM specialist to consider medical or surgical intervention. Yearly echocardiogram and check ups are essential.
          Right now, at 21 maybe you don't have any of these symptoms and that's great. But consider purchasing and reading the book for sale on this website .... authors Lisa Salberg and Barry Maron.... which explains HCM and gives you a good foundation for working knowledgeably with your doctors.
          Last edited by JillC; 07-20-2018, 01:15 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

          Today's Birthdays

          Collapse

          Working...
          X