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


No announcement yet.

How to Deal


About the Author


daccs Find out more about daccs
  • Filter
  • Time
  • Show
Clear All
new posts

  • How to Deal

    I was curious if anyone could help me...

    My husband is suffering severe PTSD after his defibrillator fired inappropiately, an exuberant number of times one day. He says that none of us understand how he feels and I am afraid that he is sinking into a downward spiral.

    I know that the fear of death is very real in a situation such as his, but I don't understand how to help him. I want to do everything I can for him, but it just seems as if my best isn't enough. He constantly is bitter and grouchy and I will put up with it for so long, but once I feel I have exhausted all efforts and then he snaps at me again, I snap back and we end up arguing for days.

    I want to be sympathetic to his situation and not be part of the problem, but I can't handle him taking this out on me and our son any longer.

    PLEASE HELP! THANKS! [/color]

  • #2
    Re: How to Deal

    Living with a chronic disease is tough, then he has the added burden of fearing the ICD firing again. I think he needs professional help to sort through these feelings. Of course you don't know how it feels. Would he want you to? He isn't thinking clearly at the moment and hopefully someone who specializes in PTS will be able to help him.


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


    • #3
      Re: How to Deal

      Is your doctor in the loop? Your husband has been thru a lot, as have you and your son. There are so many feelings, fears, thoughts to deal with. It's hard to trust a piece of equipment that has failed you in such a way. I hope you can get the professional help you need to get you all through this whole thing. It won't be easy and probably won't be quick, but actively seek out the professional help to get you all on the right track. We're here to lend a shoulder, be a sounding board, and hopefully be able to offer a few helpful suggestions. Please keep us posted as to how things are going, we care. Best wishes. Linda


      • #4
        Re: How to Deal

        He is seeing a professional and he is on several different medications, but that is the weird part. He seems to have gotten worse since taking the anti-depressants. He walks around almost in a zombie like stage. This is NOT the man I married.

        I appreciate all the kind words and the encouragement. I know we will get through it, I just don't know how yet...


        • #5
          Re: How to Deal

          Anti-depressants don't work the same in everyone. It may take a different med to give him what he needs. If things are worse than before the med, call the doc back and make sure he knows - make sure he listens! Sometimes, you may have to take control for your husband until he is able to again. I'm sure he doesn't want to be this way. Take care of yourself also, a nice, quiet walk or whatever when it gets too much, thinking of you, Linda


          • #6
            Re: How to Deal

            Is he on anti-anxiety medication - different from anti-depressants? If not, ask the doctor about those or a combination of those with anti-depressants.

            Just a thought, but I am writing more in a pm.


            • #7
              Re: How to Deal

              I agree, sometimes people react differently to meds than they should. A different med may make all the difference. Good luck!!


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


              • #8
                Re: How to Deal

                He is seeing a professional and he is on several different medications, but that is the weird part. He seems to have gotten worse since taking the anti-depressants. He walks around almost in a zombie like stage. This is NOT the man I married.
                Okay, here is my experience. I have anxiety (for lots of reasons, mostly my heart, but still it is a long story), and I went to a General Practice doctor and he prescribed Zoloft and I took it. Oh my God, I was much worse on that drug. I felt worse on that medication than not taking anyting. I cannot take SSRI medications.

                Now that said, they work great for some people. SSRI medication works by regulating the Seretonin in the brain. Seretonin is am extremely important chemical in the brain.

                However, my problem is not Seretonin related, it is Central Nervous System related. So most anit-depressants do not work for me, in fact, they make me feel sooooooo much worse than without them.

                I take Xanax -- I take a lose dose and it works for me. I only take it at night when I do not have to drive anywhere. I never drive while taking Xanax. I take it mostly for sleep. Now, I do not recommend Xanax for life long management because it is very physically addicting. My body is physically dependent on it. But, I do not abuse this drug. I only take what is needed and I am able to function and do daily activities. Xanax is an anti-anxiety drug.

                Please research this some more. Sometimes doctors will prescribe a benzodiazepine (which is the class of drugs that Xanax is in, and Valium is too) along with the anti-depressant to help with the side effects of the anti-depressant until the brain gets adjusted to the anti-depressant.

                There are some doctors will not prescribe a benzodiazephine like Xanax because it is so addicting. However, sometimes it is necessary for short term help. And in my opinion, with the extent of my heart disease, I need some help.

                I hope everything works out for you and your husband. Please keep us posted.

                Hugs -- Eileen
                49 yrs. old
                Diagnosed at 31.
                Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                My brother passed away suddenly at 34 yrs old from HCM.
                2 teenage children, ages 17 and 15.


                • #9
                  Re: How to Deal

                  I can say that I can somewhat understand. when felix went thru his myectomy he was a changed person (and not for the better!). it sounds like your husband is on the first step, i.e. getting help. HE probably needs to switch his anti-depressant.

                  For your end, I would recommend that you also get some help as well.
                  its hard, day in and day out to deal with anger that is not really meant for you, but rather to this condition that your husband has. I know what it is like wanting back the man you married. I only had about 6 weeks of this, but that was enough for me. add having to take care of a family and
                  the stress can be really bad.




                  • #10
                    Re: How to Deal

                    Having had a device fail on me I can surely understand some of what he is feeling. In my case I did not get shocked - my device simply stopped working without my knowledge - only to be found upon my regular ICD check when there was nothing happening in the device.
                    Over time I was able to relax about it and I did learn to trust my device again.

                    There is likely more going on then the ICD misfires that are causing his current state of mind and I completley agree that professional help is important. However, like with ALL doctors you need to find the RIGHT person to help him - you may need to speak to several therapists to find the right one for HIM.

                    The information above regarding medications is good advise - there is not a 'one size fits all' way of dealing with these problems. Stick with it and it will work out over time - it may not be easy but it will be worth it in the end.

                    Take care and Happy Thanksgiving.
                    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)


                    • #11
                      Re: How to Deal

                      Has your husband found www.zaplife.org? This website is for those of us with ICDs; a number of those who are active have had inappropriate zaps. When he gets to the site, he should look for Zapper BBS--the bulletin board.

                      I think your husband would find comfort in being able to communicate with others have gone through the same thing he did. They definitely DO understand the trauma. The usual treatment recommended is an anti-anxiety medication for a period of time. I think talking about it on the board with other sufferers is also helpful.

                      There is nothing more reassuring than a well-programmed ICD. I hope he is (intellectually if not emotionally) comfortable that what was wrong has been fixed and the inappropriate zaps won't happen again.

                      A happy and lucky wearer of a well-programmed ICD.



                      • #12
                        Re: How to Deal

                        I think I can straighten out the whole question “How to Deal” in a minute. That is, - you always deal to the left.

                        Having the defib fire inappropriately is much, much better then not having it fire when it should. He’s still alive, and likely to remain so. It’s like the trapeze artist that falls into the safety net and breaks a finger. Sooo much better then what would have happened without the net.

                        Think it through, get all the help you need, and live a wonderful life. Tomorrow IS another day.


                        • #13

                          I hope your husband did find the zzaper site, where my husband found a lot of info.
                          I also feel he is different.
                          My son had his AICD first and I thought , since we had already one case in the family...that he was prepared, but he needed someone to talk and needed to deal with his fears.
                          so he had the chance to read and learn from others. I was with him and we read the info. together Having a third 'factor' was a big help. We read it slowly every detail...
                          I remember the first time he was in front of the mirror. It was like seeing himself for the first time.
                          I hope he will find a way to see his AICD as a life saver soon!
                          Wishes for healh, peace and love!

                          Daniela E-H, Mother to Matan-Ben (13 years old) who had his AICD implantation (29/03/04) and Myectomy (14/12/08) and Noga (4 years old) not affected
                          Haifa - Israel.


                          • #14
                            Although my ICD never fired, I still fear the moment it will happen. I've seen medical shows on tv, asked doctors, nurses, other people that has had it fire "what does it feel like"? My imagination is expecting the worse. I sit on pins and needles wondering "when".

                            Your husband has experienced the "zap". He is probably fearing the next time even though he knows this device is there to save his life. It is the "fear factor".

                            It is true that medications work differently on everyone. Sometimes the dose needs to be increased or other medications need to be tried. I would suggest you talk to whomever prescribed your husband's prescriptions. The meds (if not adequate for him) could stray him in a direction of self destruction. I know, I've been there.

                            I know it is very stressful for you and your son. Please seek help from other professionals...whomever prescribed the meds, a counselor and your pastor, priest, etc

                            Please keep in touch and let us know how everyone is doing.