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British Heart Foundation
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Living with an ICD, cardiomyopathy feeling scared, anxious and completely helpless

A year after contracting the disease and having an ICD fitted I thought all was well until collapsed last week as i went into VT and the ICD saved my life. 2 nights out of hospital i had a restless night and was shocked again. They have increased my drug dosage which i was told would have side effects but I'm now constantly anxious and living in fear or every missed beat, jolt and strange side effect. I cant sleep and when i do drop off i jolt awake within about half an hour; I'm so tired and so scared and feel completely helpless

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Hi I've got a icd fitted wi cadiomypathy had it 16 months n living the dream so far touch wood lol

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Hi MarkSteven.

You are naturally anxious, and that is to be expected after the shocks you have experienced. Everyone who has an ICD lives in some fear that one day they will experience a shock - after all that is why many have the ICD implanted. The ICD is a life saver and you are living proof of that. Having a VTach episode is scary, but with an ICD in place you can sleep easy as it will detect the rhythm and deliver its treatment.

My partner had to have an S-ICD implanted in January following two cardiac arrests. Like you he has had some sleepless nights worrying that it could happen again, but here we are 3 months on and so far no more cardiac arrests so no shocks. We both feel reassured that he has his own paramedic in his chest so if he were to have a problem again then the ICD will do its job.

As time passes you will gradually return to a normal routine and sleep will happen. Tell your GP how you feel they may offer you some help. My partner was offered a short term sleeping table and followed up by some counselling. Not too sure the counselling was the turning point or my partners determination to get on with living.

The old saying 'worry about the things you can do something about - not the ones you can't control'. Isn't much help I know as you can't do much about your anxiety but trust me it will get better given time.

This forum is here to help too so anytime you want to chat about how things are just drop a line here and you will get someone to reply.

Take care.

Ron.

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Hi Mark, sorry to hear how you are feeling, do you have a heart nurse you can talk to for advice? Or maybe ask your GP for counselling? Xx

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Hi

I am in the exact same position, I too was diagnosed with DCM last October. 2 weeks ago I suffered a VT storm and was shocked 15 times in 25 minutes... I was awake for all of them ... it was the worst moment of my life.

I too have had my medications altered and am now on Amiodarone.

I have spoken to my heart nurse at the hospital and will be having some counselling to help me with the emotional stress, perhaps this is an option you may look into.

I too do not sleep at present and too wake up with a jolt... it is pure anxiety... this is the main aspect I am hoping the counselling will help with.

Paul

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Hi Mark I know how you feel I had a situation last July with the ICD firing a total of 27 times in about 3 hours but hey I'm still here and emailing you. I also had the initial feeling of fear(it was going to fire again) Sleepless nights anxiety depression and various side effects because of changed medications. But cardiac nurses have been brilliant as with my ICD unit who are always available if you have concerns. I will say that as time goes on my fears have considerably reduced and almost back to normal now. Obviously once you have received a shock it always in the back of your mind that its going to happen again but if it does its probably going to save your life. I will be 65 shortly but have no intention of retiring and I still play golf regularly. Brisk walking can be a bit of an issue but generally all ok. Counselling can help you overcome some of your fears but the old cliché of "time heals" seems to be working in my case.

Take care Glen

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Thanks Glen its good to hear things have improved, Regards Mark

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Hi! Oh how we relate to this!!! My husband had a heart attack at the age of 37 twenty five years ago and was fitted with an ICD three years ago. He has always been a 'fit and healthy' heart patient working and carrying on with life. However, last week it shocked him and our lives have been turned upside down. He is now unable to work, drive for six months or claim benefits. Although money is nothing in the scheme of things being unable to drive or work at the moment just adds to his stress and he is miserable and I am tearful. He is constantly aware of every movement in his chest and I am a nervous wreck. Sleep is a thing of the past. We are so grateful he is alive and well but just want to feel 'normal.' We are taking all the positives from all the replies and thinking of you and your family now. I am sure all will be well in the end for all of us. Chris. X

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