ICD - Supporting medication

[JackRusselllsrule]

Almost two months with ICD/Defib but still struggling to come to terms with it. Constantly worry that I may set it off if my if heart rate goes up unexpectedly again. Wonder if this anxiety side-effect of Bisopropol medication - 10mg every morning - or just me obsessing on what is there to save my life and I should just accept as part of life/body? Any advice, thoughts gratefully accepted please.

[Lezzers]

Hi

Try to think of your ICD as your very own paramedic looking after you 24/7.

My husband has had an ICD since 2012, this has recently upgraded to a CRT-d.

I recently had a conversation with his nurse about fast heart rates and she explained that your ICD will not kick in because of a fast heart rate (HR) it will only kick in if that fast/slow HR is an abnormal HR (arrythimia). Even if you do have an abnormal HR your ICD will try to pace you out of it & will only shock you if it's unable to do this. You would expect your HR to increase when being active, ie: going up stairs, going to the gym, having sex etc, your device will recognise this is a normal activity. I would think your beta blocker has been prescribed to help keep your heart from going into arrythimias. Looking at your previous posts you seen to be worried about taking bisoprolol, my understanding is that often this is prescribed to help anxiety rather than causing it.

It's early days for you with an ICD, you will eventually get used to it & hopefully even forget it's there, working in the background & looking after you. Meanwhile do you have a cardiac nurse you could talk to or maybe speak to your pacing team.

I also highly recommend joining a Facebook ICD support group, the link is below. It's a very friendly knowledgeable group with lots of advice about ICD's & heart devices in general.

I hope this helps, good luck

facebook.com/groups/7879967...

[JackRusselllsrule in reply to Lezzers]

Thank you for advice and re-assurance, much appreciated.

[Bigheart58 in reply to Lezzers]

I totally agree. It does take time to get used to the device and also the medication. I have had my CRT-D for nearly five years now (I’m 66).

After a while, your body adjusts and everything settles down. You just have to be patient and remember that we are very fortunate to have our own personal in-built paramedic in our chest!

[JackRusselllsrule in reply to Bigheart58]

Thanks for your advice/experiencs👍

[PadThaiNoodles]

Both my daughters are on propranolol (a non-cardiac-specific beta blocker) for anxiety. Neither of them has any heart issues. You might talk to your GP and/or cardiologist about whether a non-cardiac-specific beta blocker might kill two birds with one stone for you....

Alternatively, I took CBT for anxiety and found it very helpful. That was before I had heart surgery and ended up on bisoprolol. I was also already on an SSRI (escitalopram) for depression/anxiety. I was in fairly dire straights at the time and needed all the help I could get.

[Pouchielou1972]

I felt exactly the same aa yourself when my ICD was implanted 2 years ago. I worried about having a fast heart rate setting it off, as I have an arrhythmia and was struggling with the side effects of Bisoprolol, also 10 mg. I'm pleased to say that the anxiety soon passed and I got used to the idea of my ICD being there as my own personal paramedic silently waiting just in case it was needed.As Lezzers said, the ICD is so clever, in that it will firstly try to pace you out of a fast heart rate, only shocking you if the fast heart rate is abnormal and sustained for 1 minute or more. It takes into account rhythms that relate to exercise etc whi h would be normal. I have had 2 fast heart rates over 200bpm since my ICD, but thankfully my heart corrected itself after a few seconds, so no ICD intervention was needed.

After a while you really will get to a point where you'll forget you have it day to day. I didn't think I would, but I really do.

[JackRusselllsrule in reply to Pouchielou1972]

Thank you, that’s reassuring to know.

[Driver11]

It takes a little while to get used to having one but after the soreness has gone it's something you just live with Good luck

[JackRusselllsrule in reply to Driver11]

Thank you.

[MRSDJW]

hi.

I’ve had mine for nearly 2 years now. The first year I was very down about everything that happened to me. Now I forget I’ve even got the implant. Time will heal ☺️

[JackRusselllsrule in reply to MRSDJW]

Thank you, here’s hoping 👍

[DKLeeds]

Hello, regarding your bisoprolol, do you not split your prescription? I take 12.5mg daily but was told to take half in the morning and the balance 12 hours later. Check with your doctor or heart nurse first.

[JackRusselllsrule in reply to DKLeeds]

Great idea, I’ll suggest that my GP. Thanks.

[Bigheart58 in reply to JackRusselllsrule]

I take 5mg twice a day. I’ve not had any problems. Good luck!

[JackRusselllsrule in reply to Bigheart58]

Thanks

[MrHocum]

My S-ICD was installed in May and I barely notice it now to be honest, after initially thinking I would never be able to get used to it.

The times when I do think about it are when I can feel my heart beating irregularly and then I find it re-assuring rather than concerning - I was far more worried when this was happening and I didn't have it.

It's not surprising to worry about it going off. I certainly did when it was first put in. But I guess you have to balance that with the worry of not having it when you actually need it to go off. I know which one would worry me more.

The longer you go with it not firing, I think the less worried you will become. Two months is really not that much time, so give yourself a break - this is perfectly normal.

[JackRusselllsrule in reply to MrHocum]

Thank you, that’s very reassuring.

[Deejay62]

Hi I have a CRT-D which as a defibrillator. I’ve had mine for 6 years. At first I thought the same as you. But I have ventricular tachycardias and all sorts and mine as never gone off. The device seem to deal with them, that’s what they told me at the device clinic. After a few years I forgot I even have a defibrillator.

I agree totally with Lezzers, she has a better way of putting things across than me. Try not to worry about it, easier said. Hopefully like me you will forget you even have it there.

All the best

[JackRusselllsrule in reply to Deejay62]

Thank you, appreciate your advice.

[Lurganspur]

hi Jack

I totally understand your anxiety,I’ve had my ICD from 2020 & at the start felt the same as you then after time I learned to live with it but….i had a device check up on Monday & they told me my ICD “thought” my heart was racing (it wasn’t) & tried to slow it down then a few mins later it “thought” it was still racing & tried to slow it down again 🤷‍♂️ they just told me it shouldn’t have read that & they’d have to see Rep…Ive posted on here looking to see if anyone else had this & haven’t had any response yet But my confidence is now shot to pieces & I spend every waking minute thinking about it ☹️

[Lezzers in reply to Lurganspur]

Hi Lurganspur

I'm sorry that you've not had a reply to your own post. I find this group is helpful for general problems/questions, however you'll probably find more advice/support from a specialist group.

If you do Facebook at all I highly recommend joining the ICD support UK, link below. As the name suggests it's solely for people that have, are having or are caring for someone who has a heart device. It's a very friendly helpful group which is very well moderated and I'd be very surprised if there wasn't someone there who's had the same issue as you & can advise.

Good luck 🤞

facebook.com/groups/7879967...

[Lurganspur in reply to Lezzers]

Thank you so much Lezzers I had seen that link to that facebook site & would love to engage with them but I don’t have or ever had a FB account do you know if they’re on X or Insta ? Or if you know of any other way I can contact them please? Thank you again

[Lezzers in reply to Lurganspur]

I'll find out & get back to you. Bear with me

[Lezzers in reply to Lurganspur]

Hi

I'm just going to private message you.

[JackRusselllsrule in reply to Lurganspur]

Hope problem gets resolved, must have been worrying,

[MikeThePike in reply to Lurganspur]

Why is your confidence "shot to pieces"? No electronic device is perfect and any device can malfunction. Fortunately it is quite rare with these devices. Medical grade devices are generally manufactured to high standards. I'm sure it can be recalibrated, repaired or just replaced with a better model. By all means be disappointed but your situation is far from hopeless. You make it sound like it's the end of your world.

[Lurganspur in reply to MikeThePike]

Thank you for your support 👍 what a great piece of encouragement you’ve brought to me today cheers …..when you’ve walked in my shoes 🤔😉

[Gfin]

Had one fitted 7 years ago, never gone off!

[Rustyoldperson]

hi I had an ICD FITED 3 yrs ago I can assure you you will be fine if you are anxious about it speak to your cardio nurse or your consultant , as regards bisopro l was on that originally then they took me off it apart from being out of breathi am ok you have to know your limitations .

[JackRusselllsrule in reply to Rustyoldperson]

Thank you. Got first appointment with consultant soon so will ask him then.

[BlueJRW]

Hi, my CRT-D was implanted in Feb 2020, just as lockdown was kicking in. I too am on Bisoprolol 10mg a day plus a few others to look like a hand full of smarties.Like yourself after the implant I worried about triggering a charge from the device but I found no matter what I got upto the device just monitored my heart hadn't given up, even in AF the device hasn't fired.

You'll get used to if being there and reporting to your heart care team if there is something they need to know.

Good luck getting the most out of life.

[JackRusselllsrule in reply to BlueJRW]

Thank you, encouragement much appreciated.

[Oatybiscuits]

my husband was given 2 days notice that he would receive a dual ICD/ pacemaker after surviving 2 cardiac arrests post heart surgery

Initially he was very anxious about it - he is extremely underweight so we can see the shape of it and see it move a wee but when he moves his body

As time went on he felt lucky he had it - his own insurance if his heart raced too high or went to low

4 yrs on , we never think about it , only think about it at his yearly review

As others have said , you will adjust and will forget about it , if it activates then it’s done it’s job

Good luck

[JackRusselllsrule in reply to Oatybiscuits]

Thanks for message, much appreciated.