I recently received a shock from my ICD at a mainline station in London and spent 2 nights in hospital. My device went off as I was in tachycardia which was 240-260 beats. My condition had been well controlled, following treatment about 8 years ago. I’ve always been an active person doing weights, cycling and running and have excercised within the bounds of advice for the last 8 years. I also have quite a busy job and family life.
Since my shock I’ve been absolutely hit for 6. I’m adjusting to new meds, have felt slow and am scared to go out. On the one hand I understand it’s natural but on the other it really feels like I’m letting people down and at times I feel like a bit of a fraud. I’m also thinking a lot about the future and whether I need to slow down and take a different job and whether I’ll be able to train again. I know I just need to focus on building back up over the next few weeks but I’d quite like to be clear as I’m worried that my lifestyle has caused my heart to deteriorate and I don’t just want to slide back in to normal life and find myself here again in eight year in a worse position.
I’d be interested in hearing from anyone who has a similar story and is further down the line as well as any advice generally.
Thank you in advance 😀
Written by
ShaneDullerhit
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Sorry to hear about your experience, but if you're still adjusting to new meds and suffering such anxiety... Is it really the time to be thinking about all those things? Nice people always feel they are letting others down. You will soon get back on your feet, your thinking process will begin to work better, and your anxiety will calm. It sounds like you were just keeping fit and healthy, with a positive attitude. These things can happen to anyone at any time.
HI I had a shock a year after my ICD was fitted. Walked into the hairdressers sat in the chair and it shocked me. Wow great that it worked but I just didn’t see that for a long time. I just went into anxiety about everything. I basically fell apart.
What I did learn though was. it just takes time. Time is incredible. I did have lots of therapy. I had never had anxiety around my health before. I have been diagnosed with cardiomyopathy for 35 years. I used to fear another shock. It wasn’t the actual shock I feared it was the fear I feared. Then I realised I just had to accept and realise that what ever is going to happen, I will deal with it then. And there will nearly always be somebody there to take care of me. Just like there was for you when you had your shock.
Thank you so much. That bought a tear to my eye. It’s confusing as to why it is such an emotional experience and I really relate to the feelings you express below
One more week on I’m feeling a lot better m, I’m going for short walks, the anxiety is lower and I’m thinking about gradually returning to going out more and work as time goes on
I'm sorry to hear your ICD has shocked you, even though you know it's doing its job & that's why you have it, it really messes with your mental health. My husband had his ICD 10 years before it shocked him.
Is cardiac rehab open to you? That helped my husband a lot in building up his confidence, he was also lucky to get support from the local hospice. The hospices are not just for end of life, they are fantastic in talking you through your concerns, how to address any worries re your job, money, exercise, breathing exercises, etc it's really worth contacting your local hospice to talk it through with them.
Whether or not you'll be able to do weights again will be down to your medical team to say, but I doubt your lifestyle caused your ICD to shock you especially after 8 years and your ICD is programmed to differentiate between a fast HR due to exercise and an irregular HR, you definitely haven't let anyone down.
If you do Facebook at all I highly recommend a group called
Fantastic group of people who've been where you are today & will share their experiences with you & how they've overcome/come to terms with what has happened.
I thought I’d write an update. Recovering from my ICD shock has been the last 6 weeks or so of my life and I hope the info might be helpful to someone in a similar position or just some of the experience will help.
So, after initially struggling to get out for walks, I slowly built up confidence doing these alone. The BHF Cardiac Nurse had told me the dose of beta blocker I was on was likely to prevent anything from happening and it was just a matter of time until I was out with the dog every day for an hour and built the pace just relying on my body to tell me what felt right or wrong.
I planned my first commute and non WFH day around 2 weeks ago, attending a conference in c London and it was here things went wrong. I got to the mid afternoon coffee break (water for me) and I thought I felt a pain in my chest. I excused myself (quite abruptly) from two people and went to the side of the room expecting VT and bracing myself for a shock. Nothing came but I didn’t feel right so I left and hopped in a cab to the station. It was there, later on and where I’d received my shock 4 weeks earlier, I had a panic attack, something I’ve never had before and subsequently realised that at the conference I’d had an anxiety attack. I’ve known people that have experienced both and tried to understand and help but what I’ve never understood is the physicality of these things. I subsequently found out that around 20% of ICD shocks result in some sort of PTSD for the patient. The last two weeks have been spent understanding and trying to test myself. In short this involves breathing, meditation and really being aware and living the experience (no distraction). I took it easy for a few days and then started exposing g myself to the fears. Mainly the station. The first big test was going to my village stations, grabbing a coffee and watching the train come and go. I chatted to others waiting for the train who probably thought it was odd when I didn’t bored but I’m past the point of caring. I’m pleased to say that now, with the support of my partner, I’ve managed two trips back in to London. The first on a non work mission and today to go to work and they were both okay. I feel some of the anxiety and panic but I ride with and explore it and breath before and after I enter the situation. I’ve had a few bouts of anxiety, none as serious as the first and on my trips to the train stations, levels are extremely high. I’ve also had it in conversations with people but I’ve been able to deal with it. I know that at some point I’ll get another bout that’s debilitating but I’ve started saying it out loud when it’s bad and telling those around me what’s going on or just saying ‘I feel a bit odd’ or ‘I need a minute’ and it’s cool. As I say, I’m past the point of caring and I’m happy to share the problem! I’m now cautious about the future but optimistic that I can get back to sort sort of normal.
As far as my heart goes, I’ve been told that I just had a sensitive period for my heart which should return to normal at some point if it’s not already. I need a few more weeks off exercise and then to go back to doing something less strenuous. The good news is that my heart doesn’t seem to have changed permanently but the bad news is this could happen again. I could get another bad bout, VT and shock and there are no obvious warning signs. I’m getting to grips with this. On the one hand I do feel more cautious, but on the other I feel more normal every day. I also think as nasty as it may be, I’d be more ready for a shock and its aftermath this time. In a funny way, having the anxiety has helped me face up to what I’m afraid of and think about dealing with this long-term and getting my attitude right.
That’s me for now. I’d love to hear from others with similar experiences, receive any advice or communicate with anyone going through a similar thing.
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