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HCM/IHSS with an ICD

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  • HCM/IHSS with an ICD

    [HCM/IHSS with an ICD]

    Author: Susan Tyrrell (208.35.56.---)

    Date: 07-19-02 10:44

    Hello. I am new this this website and would like some feedback from anyone who has experienced what I have or has some input. I was told I had IHSS when I was 22 yrs old. Had a septal myectomy at the age of 26. Did really well for several years after that taking only low dosage of meds. Then about the mid 90's started having problems again. Since have been through several different meds, then in Sept. 2001 found out I was having Ventricular Tach. So Oct 2001 had an ICD put in. Dec 2001 the ICD went off and gave me treatment 7 times in a row. Then I found out that I didn't even need the treatment. My heart was racing because I was upset and the ICD delivered thearpy. Every since then I have not been able to get through more than 2-3 days at a time without panic attacks. Meds are not helping that either. Then 3 days ago I found out that the septem in my heart has grown quite large again and have to go discuss with the Doc what my options are. I am hoping someone out there can help me with this. My family and friends are trying to me supportive, but somehow it seems that don't quite understand. I feel like I am going insane at times. Thank you for your time.

    Sincerely, Susan

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    [Re: HCM/IHSS with an ICD]

    Author: Board Moderator (Sarah Beckley (---.tnt90.chi5.da.uu.net)

    Date: 07-19-02 12:12

    Dear Susan

    I'm assuming that since you are new to the web site that you may or may not be seeing an HCM specialist. It sounds like you are in a place where you would benefit from seeing someone more advanced than your current care.

    Please call the office at 973-983-7429 to talk to them about finding a doctor.

    It is very hard for family to understand what this is all about. Please read some of the older threads and you will get a good sense of the great company here.

    I'm assuming that they have fixed your ICD settings to that it shouldn't misfire again --right? Misfires are pretty rare anyway, as I understand it, so you should be ok but I understand how freaked out you would be. Have you tried meditation to help you through the tough spots? There are guided meditation cds at most bookstores nowadays so you don't have to learn anything, just listen and follow along. Helps me a lot.

    big hug and keep us posted

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: HCM/IHSS with an ICD]

    Author: Board Moderator (Sarah Beckley (---.tnt37.chi5.da.uu.net)

    Date: 07-19-02 12:16

    Dear Susan

    I'm assuming that since you are new to the web site that you may or may not be seeing an HCM specialist. It sounds like you are in a place where you would benefit from seeing someone more advanced than your current care.

    Please call the office at 973-983-7429 to talk to them about finding a doctor.

    It is very hard for family to understand what this is all about. Please read some of the older threads and you will get a good sense of the great company here.

    I'm assuming that they have fixed your ICD settings to that it shouldn't misfire again --right? Misfires are pretty rare anyway, as I understand it, so you should be ok but I understand how freaked out you would be. Have you tried meditation to help you through the tough spots? There are guided meditation cds at most bookstores nowadays so you don't have to learn anything, just listen and follow along. Helps me a lot.

    big hug and keep us posted

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: HCM/IHSS with an ICD]

    Author: Board Moderator (Sarah Beckley (---.tnt37.chi5.da.uu.net)

    Date: 07-19-02 12:18

    Dear Susan

    I'm assuming that since you are new to the web site that you may or may not be seeing an HCM specialist. It sounds like you are in a place where you would benefit from seeing someone more advanced than your current care.

    Please call the office at 973-983-7429 to talk to them about finding a doctor.

    It is very hard for family to understand what this is all about. Please read some of the older threads and you will get a good sense of the great company here.

    I'm assuming that they have fixed your ICD settings to that it shouldn't misfire again --right? Misfires are pretty rare anyway, as I understand it, so you should be ok but I understand how freaked out you would be. Have you tried meditation to help you through the tough spots? There are guided meditation cds at most bookstores nowadays so you don't have to learn anything, just listen and follow along. Helps me a lot.

    big hug and keep us posted

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: HCM/IHSS with an ICD]

    Author: Board Moderator (Sarah Beckley (---.tnt37.chi5.da.uu.net)

    Date: 07-19-02 12:20

    Sorry for the triple posting ---my internet connection failed in the middle of posting and this is what it did!! Sorry

    S

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: HCM/IHSS with an ICD]

    Author: Chuck (---.WLDF.splitrock.net)

    Date: 07-19-02 12:32

    Susan, I had an ICD put in in May of 2000 due to sustained Ventricular Tach. It took 9 hours before I came out of this rhythm. Afterwards, I had an electrophysiology study and they were able to reproduce the V.T. easily and took several shocks to get me out of the induced rhythm even while under sedation - so I know it was not due to panic etc. At this point, the ICD was installed and three weeks later went off 9 times ( set to go off at 200 b p m). After another 9 hours and my V.T. staying below 200 BPM I again came out of the rhythm. At this point I was put on Antiarrythmics-Sotolol- which I could not tolerate- Tried Flecanide, Tikosyn and finally came to Amiodarone which has controlled V. T. the best. During this time they also tried radio frequency ablation which was unsuccessful due to the V.T coming from multiple sites. During the 1st 6 months with all this happening I was terrified to do anything that might cause the ICD to go off. Most Dr.s don't have a clue how much the ICD firing can hurt certain people - it literally knocked me off my feet on the first firing and the next 8 were very painful. My cardiologists were not very understanding and even people close to me had a hard time understanding the anxiety/fear associated with this experience. I was more afraid of the ICD going off than going into sustained V.T.( which I tolerated pretty well). I was so worried that I contacted Metronic and they said I could disable the device by holding a magnet up to it. The theory was if you hold it there and then you passout, your hand then drops the magnet and then it fires. I know this sounds extreme but knowing this was some relief to me. I have since had some reassurance with follow up studies with the ICD and Amiodarone - when V.T. is electrially induced, my ICD fires and immediately takes me out of V.T. and under normal circumstances they could not induce V.T. Time will reduce your anxiety, especially if you get on the right combo of drugs and you see, with future ICD studies, that the device is working. They tried to put me on antianxiety meds but did not like the zombie feeling but I did use valium on occasion to get me over the rough spots. Feel free to email me - there are many of us out here that have had multiple shocks and have suffered psychological and physical effects because of this.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: HCM/IHSS with an ICD]

    Author: Lisa Salberg (208.47.172.---)

    Date: 07-19-02 15:26

    Hi

    It sounds like you have had a difficult time and it is never nice to have your device go off in an inappropriate manner. Here are a few ideas to help you get your life back -

    1. make sure you are being seen by someone who not only understands HCM, but someone who can program your ICD in the manner you need. There are only a few people in the country that are good at both, I can recommend a few.

    2.RELAX - you know that if the ICD goes off it hurts and it scares you...BUT you will be OK (I say this because your OK now arent you?)

    3. TALK about your concerns with those who understand (like here) and local ICD support groups.

    RE: the regrowth or suspected regrowth of the septum. I suggest a few things

    1. get a copy of your echo report post myectomy and compare the #'s to your most recent. Then have someone who is a GOOD echocardiographer/cardiologist review BOTH echos (on tape and in report). Lets make sure we are comparing apples to apples.

    It is rare to have a great deal of regrowth after myectomy ( I have seen less than 3 cases in 7 years with any significant regrowth, after a GOOD myectomy). Regrowth is far more common in very young people (under 20).

    2. Evaluate if the regrowth is creating any obstruction.

    Feel free to email or call the HCMA for more information.

    Best wishes,

    Lisa Salberg

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: HCM/IHSS with an ICD]

    Author: Susan Tyrrell (---.users.brazoria.net)

    Date: 07-20-02 10:25

    Thanks Sarah for your input. I am seeing some specialist at Baylor Cardiolgy Clinic in Houston Texas. Suppose to be the "BEST". Matter of fact Dr. William Spencer was one of the Doc's at this place. I was one of the first of the five canidates for the alcohol ablation when it first came out. Sadly it did not work for me. And yes that have put me on many meds for my "HEAD". Adavan, Xanax and Paxil. Been telling them for months that the symptoms I have been experiencing are not due to anxiety or panic attacks. I have been dealing with my disease for over 17 years and have learned when to listen to my body. Now I will admit when my ICD misfired, it did mess my head up for awhile, and at times it still haunts me but I am dealing with it best I can. And I guess I must be one of the rare people that septal myectomy did not take, or at least did not last, but hey I got 12 years out of it.

    I am very glad I found this website. It has been a great help for me and also to know I am not alone out there.

    Thanks a bunch,,,Susan

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: HCM/IHSS with an ICD]

    Author: Board Moderator (Sarah Beckley (---.tnt37.chi5.da.uu.net)

    Date: 07-20-02 19:47

    Susan

    You are very, very welcome. Paxil: yucky. I'm glad you are hanging in there.

    Sarah
    NOTE: This is a post from the previous forum message board.

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