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Hi, I am new

jb25
  • By jb25
  • Posted December 21, 2008 at 12:45 pm · 26 replies
  • Shared with the public
0 Recommendations

Hi all,

I am 29yrs old & I am from UK and have had an ICD for about 6yrs. Does anyone else suffer from anxiety because of their ICD?

If so would love to hear from you.

JB25. xxx

Explore topics in this journal entry and replies:

Heart transplant Surgery Sudden cardiac arrest Aspirin Meditation Lexapro Beta blockers Anxiety Pain Coreg Pacemaker

26 replies

Mary1

Hi JB25. Welcome! I have had my ICD for 2 1/2 years now. I tend to suffer from anxiety/depression in general, but this doesn't help. I had a sudden cardiac arrest in July 2006, which is why I have the ICD.
I'm curious why you have the ICD? Maybe hearing a little more detail will help people help you! This is a great site, though, so you WILL find support.
Mary :-)

Maridee

Hi JB25,

Welcome to this website where you will find all the support, love and concern from those who share the same feelings of apprehension and anxiety as you. We have either gone through it ourselves, or have a loved one who has an ICD or know or care for someone with one. My husband has an ICD after having a sudden cardiac arrest almost 2 years ago. He does not say he is anxious or depressed but doctors believe him to be. I also have a niece around your age who was diagnosed with long QT and an ICD was implanted in August 2008. She is very anxious about it. So many share the same conerns as you and are here to help. Please keep posting as you will meet many new friends in the same predicament as you. Good luck.
Maridee

jb25

I was born with a heart condition & had to have it implanted when I was 23yrs old. It has never fired & I get very anxious about it doing so & how it would feel.

Johnie

JB25:
Well, if your anxiety is about whether your ICD would do the job, your regular check ups where they test it should help you feel confident. Don't worry about that -- they work!

As far as how it feels -- mine has fired once (before I had my third ablation) and it is powerful but not painful. It did wake me up from a sound sleep (so you don't need to worry that you won't wake up). Even though I had never felt it before I knew right away what it was (so don't worry you won't recognize it).

It did not hurt. It's hard to describe, but it felt to me more like you would imagine a sound wave hitting you would feel. No pain, just an "impact" or quick pressure feeling. I believe there was a sound, too, but I may be confusing that with some of the times that I had to be shocked in the hospital (prior to the ICD).

You've had it since you were 23? How old are you now?

Hope these impressions help your anxiety somewhat.
Merry Christmas,
Johnie

jb25

Hi thanks for replying Johnie. I am 29 now. I had my check up today & all is going well. I feel like a big weight has been lifted when I have my check ups & I know all is ok! Thanks for explaining how it feels. I know its going to do it's job, but I do worry! Silly I know. Thanks again & Merry Christmas to you too. :)

scopeland75

Hello! I want to thank you for describing how it would feel if you ICD was to go off. I have had the same anxiety as others as to what it would feel like. I appreciate you sharing this information. I am 33 years old and had SCA in March, 2008. I collapsed in front of my students at school. I am thankful to be alive today! It is great to have this site to share thoughts, concerns with everyone. I have signed up a few months ago, but have not checked in for a while, so I consider myself "a new" person here. Hope everyone has a happy New Year!

Johnie

Hi Scopeland75,
You're welcome. Of course, I'm sure it feels somewhat different for everyone, but hopefully my impressions will relieve some anxieties -- just knowing it doesn't hurt or knock you down or anything! I was just so scared when it happened because I knew it would mean I'd have to be back in ICU. My story is a little strange, I guess. Like you (?), I had never had any trouble with my heart before (or any other health issues). At 47, I just dropped down to the kitchen floor one night while cleaning up after dinner. My 16-year-old son did CPR until the medics arrived (about 9 minutes because it was a very icy January night). I still can't quite get my mind around that scene and all that he must have gone through! I seemed to make a quick recovery -- even tried to sit up in the medic unit and ripped my airway out, proceeding to tell the medics how I didn't need to be there!
After a week in our local hospital they were going to send me home. Then my heart stopped again and continued to stop every few minutes. They had to keep shocking me -- hundreds of times -- to get me back. I was aware of some of that, could sometimes feel myself going into the bad cycle, knew it was going to happen, and a few times felt pain from the shocks. That DOES hurt, but I don't think you are aware of it happening or remember it unless you have hundreds of times, like I did. In desperation they decided to send me to the University of Washington Medical Center in Seattle (we live nearby) to be put on the heart transplant list. Yikes! At the UW, however, they said I wouldn't be able to get a transplant because my heart was "perfectly healthy." They weren't going to remove a healthy heart. Makes sense. They just could not figure out what was going on, what had sent my heart into this terrible cycle. Well, long story (5 more weeks in ICU) short -- they tried two ablation procedures and hoped they worked. For the first one I was too sedated for it to work. The second one took 9 hours (you are awake for this, while they put tiny "scars" on your heart to try to reroute the electrical charges that are going the wrong way).
So -- all of this to say -- that after I went home I was very sad and scared to have the ICD fire and send me back to the hospital for another ablation. But, it did not hurt. I remember only the "sound wave impact feeling" within my chest and a noise. It woke me up and I knew what it was right away. I was very anxious as I dressed to go to the ER, because I thought it might start going off every few minutes!
The third ablation worked, thanks to the extremely talented, persistent, and dedicated electrocardiologist I have at the UW. And I have been fine. It has been almost two years since my initial SAC. I am now off all medication (steroids, amniodorone, coreg, etc. etc. etc. -- given to me only because they didn't know what was causing the problem) and back to my previous activities, including working with elementary age special needs kids. They never discovered the reason for the initial SCA, nor why the cycle continued so dramatically to keep stopping my heart over and over. Miraculously, I suffered no brain deficits, no heart damage, no lasting effects of any kind, other than having choppy memories of my hospital stay (from the drugs they had to give me to keep me stable). This is probably more than you needed to know, but it might give you some idea of my perspective on the ICD. To me the ICD is a blessing that assures me I can go to sleep at night without worry. My husband can let me to out into the world and not worry. My son and daughter can relax (although they still call out "Mom?" if they hear a crash in the kitchen). It has all been a very strange, scary, amazing, miracle-filled journey.
Happy New Year to you and your family!
Johnie

nettesgoal331

hi jb25
you fears are very much common. i am a medical professional in the field, and i often hear the concerns of pts ith icds. i even have had to get older pts that where war vets get phychological help because after a shock they had wakeups @ night with fears. or phantom shocks..please discuss any concerns with the physcian following up ith your cardiac conditon. that ay they are in tuned to all your needs both physical and emotional. most pts are simply too afraid to talk about this ith their mds but they need to know. reaching out for advice is just a good start.
net

Bus

jb25 I have fear of ICD shocks after my 6th shock in 32 months and I do experience anxiety just as I am falling off into a deep sleep. That is when most of the shocks have happened. I am thankful for the ICD extending my life 2 1/2 years but have had about 32 Phantom Shocks that feel like 1/4 shocks that do not show up on the ICD recorder. My Dr. says the shocks are in my mind. (My Psychologist & my wife think I can feel the ICD doing something - it is an imbedded computer) Our mind is powerful and I figure it puts out a quarter of the electricity of the ICD. (Enough to light a 15 watt for 1/2 sec.)

Now when I am trying to rest and my mind starts fearful thoughts I re-direct it positively to awaken hybernating heart muscle damaged from 10 prior heart attacks. I now do a creative visualization & meditation to re-grow my body, like I could when I was in my mother's womb -I feel as if I did it once before. Does it work? I don't know yet. I will have to live a couple more years to prove it to myself.

The PLACEBO effect of the above meditation does help me sleep better with fewer Phantom shocks and less fear of shock/death. Doctors say placebo effects are 30-40% effective.

Bus Awakening Heart

bingo

Hi,
I'm a 57 year old female. I have had an ICD for the
last 4 years. Sometimes I get anxious about it. I
have actually been terrified. I take Lexapro for my
nerves. If I didn't I would be crazy by now.
Please try to get your mind on other things. Try not
to worry about it. It saves your life. It keeps you
from dying of sudden cardic arrest. I have been
shocked from mine several times.
Good luck and I hope you don't get shocked at all.
Maybe we can be friends.
Bingo

blake76

Hi JB25,

I've just signed up too. I'm 32 and I had a cardiac arrest on the 17th Dec 08 and an ICD fitted on the 23rd Dec 08 so it is all a bit new at the moment.
I am keen to know what it is like living with the ICD and how it affects your day to day living?

jb25

Hi Blake

To be honest it doesn't really affect my everyday life. I carry on as I always have done. I can't feel the ICD inside me. The only times it bothers me is when I feel a few extra heartbeats & it sends me into a state of panic that it's going to fire & what it would feel like but apart from that. It did take some getting used to. When I first had it done I was in a lot of pain but then I soon forgot about it and it doesn't bother me. If you have anymore questions or worries, please feel free to send me a message.

JB. :)

Mary1

Blake,
I agree with JB. Having an ICD doesn't really change much in your every day life. I did notice, however, that yours was put in very recently. It took me at least 3 months to get used to mine. I felt it with every movement, although it didn't hurt. Now I just mostly notice it at night if I turn a certain way.
I hope you are well. I can't believe your cardiac arrest was only a month ago. I hope you find comfort in this forum.
Mary

jb25

Hi, yes Mary, I have that too on a night if I turn a certain way I can feel it although it doesn't hurt. I can't sleep on my left side anymore as it digs into my armpit!

Mary1

I can't either. It was my "preferred" sleeping position, but I got over it! :-)

blake76

Thank you JB&Mary

Yes finding this forum has been a comfort to find others of a similar age with an ICD.

I'm sure i will get used to it. I enjoy scuba diving and kayaking which I have been told I cannot do (is that right??) but i'm sure i will find something else, and snorkelling will just have to do!

JB, re your anxiety, I know i'm new to the icd but I guess i was "lucky" that a few hours after the icd was fitted, I passed-out or something. Anyway once they brought me around they tested the icd and kicked it into action a couple of times at different rates. It felt just like very small electric shocks and that was all i noticed.

Thanks again

scorpio2321

I'am 28 years old with an ICD and pacemaker. I'am very lucky to be alive. I've been living with it for a year now with no events. I'am not afraid of it shocking me.I remember dying twice .I felt I was in a safe place.

Mary1

Hi Blake,
Yes, it does make sense that you were told not to scuba dive or kayak anymore. They don't want you to do anything that might jerk the wires out. (Although it would be very difficult to do.) I was told not to ride rollercoasters anymore. :-(
Mary

ttinmass

Hi,
I have had my ICD for about 1 year and half now.
At first I was not happy about his thing being inside me. But now it's just like my left arm. All of my freinds with they had one as funny as that sounds. I am feal lucky to have such a life saving device and even better knowing that this will save me. Think of it as having 911 in your chest and your need 24-7 I hope this helps. I am 33 years old.. hope the best for you buddy!

Lucylocket

HI Johnie.

I have just been reading about your experience regarding your heart and what the feeling is when the ICD goes off.

I have posted should I have an ICD fitted as I do not know if I should have one for peace of mind as I have had various episodes of VT over the past four months starting in October where similar to you just passed out after feeling dizzy and was shocked at the hospital spending 2 weeks before my ablation at Papworth Hospital in England. 2 weeks later the same again rushed to hospital and shocked then back over to papworth where I was placed on a higher amount of beta blockers and had to wait to go in for a 5 hour ablation. This has taken place 2 weeks ago where whis

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