Pacemaker Anxiety : Hi. I am a... - British Heart Fou...

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Pacemaker Anxiety

Oldsurfdog profile image
Oldsurfdog

Hi. I am a concerned husband who’s wife has had a pacemaker fitted and she is struggling coping emotionally. She had a pacemaker fitted 4 weeks ago after heart stopped for a few seconds followed by a number of blackouts with a head injury once. However she can’t get her head round it and suffers from anxiety and panic attacks because she doesn’t believe it is working properly. She can’t stop worrying her heart will stop and she is going to die. My reassurances and the doctors don’t seem to be doing the trick. She is not the best at talking to people about it but is scared she’s going to pass out in public despite me being by her side.

We have set small physical goals (and achieved some of them) and talked about it together but am worried unless she makes faster progress she will lose all confidence and independence. I am running out of ideas on how to help her.

Ian

20 Replies

Presumably she has been to the pacing clinic to have the settings checked and the pacing tech is happy all is working well ? If your wife feels things aren't right call the clinic and ask them for another check and they can reassure her that her heart won't stop again, the pacemaker won't let that happen. It's still very early days and she is still in recovery mode, I would say it was a good 8 weeks before I was feeling confident enough to go out and about as before although I'm on my own so did have to get on with things well before then !

Hopefully she will soon get used to the gizmo being there and like the majority of us forget it's even there or what it's job is. She just needs to take it easy and gradually move on.

Oldsurfdog profile image
Oldsurfdog in reply to bantam12

Thanks for that. Your right it a time and confidence thing but I think we expected too much too soon but we had both been scared for so long it’s hard to believe they have sorted the problem. ( it took 6 months of tests to diognosis the heart stopping / dropping and 4 major blackouts before pacemaker fitted ) thanks guys.

bantam12 profile image
bantam12 in reply to Oldsurfdog

She was lucky to be diagnosed so quickly, I had 6 years of being told it's anxiety, go away ! Once diagnosed I still wasn't offered a pacemaker, I asked for one. My late husband had total heart block and had a pacemaker for many years so I knew I needed one and what a difference it would make ! If your wife wants to chat anytime there are lots of us on here to offer help and encouragement.

Thanks guys your comments are appreciated. We originally got the impression after it was fitted that was it your fixed but as you have said your Bidy takes time to recover and adapt and your mind takes a bit longer. I’ve read your comment out to Janette hoping someone else’s opinion may help. Thanks. Ian.

Yes I have been keeping a record of her light headed episodes with dates and times so we can an give feedback at her cardio check in couple of weeks. She just can’t quite get over the physiological effect of her heart stopping. We are getting there but she’s still getting a bit upset. Your right though - small steps. 😊

It will not pause again and her heart rate will not go below its setting in my case 60 bpm

Hi Ian. Firstly, I can give you no practical help with pacemaker issues. But can fully empathise with the emotional side of it all. Four weeks is very early days, so don't feel anxious about being anxious. In fact if your wife showed no signs of anxiety, this would be more worrying! After my own ha and 2 stents in July 2019 I went into complete denial. Arguably, I am still there. This is not at all healthy. In these early days her focus should be on being kind to herself, taking meds as prescribed, eating well and gentle exercise. As others have said the medical profession are fantastic at fixing the broken bits, but the actual person can get left out of the equation. It may be she will need a little extra help psychologically, speak to her GP if the panic attacks continue or get worse. She is lucky to have such a supportive husband, my own husband was probably as important in my physical recovery as the cardiologist. I think psychologically I have to deal with that myself.

With very best wishes to you both x

Oldsurfdog profile image
Oldsurfdog in reply to Nettekin

That was nice of you. Thanks for the encouragement 👍

Hi Ian, I had a pacemaker fitted as an emergency and it did take quite a long time to get used to the idea. I needed a short course of counselling to talk through all the issues it raised for me with someone not emotionally involved. My partner was and is very supportive but I really felt the need to talk to someone else as well as quickly as possible and maybe your wife might too? It was incredibly helpful and I came to terms with it much better afterwards. Also, we too were told everything would be much better straight away after the procedure and when it wasn’t, we couldn’t get anyone to listen to us for a long time. They just kept saying it was working properly and asking if I was anxious. What I was anxious about was the fact that I wasn’t improving! I am very much better now though. Hopefully your wife will take on board that it is early days, settings can be adjusted and she will get used to the fact that the pacemaker is helping her live a more normal life. In time if the blackouts have stopped she can come to terms with it. I am paced 99% of the time but don’t often think about it now, only to be pleased that there was a solution to my condition. I hope all goes well and I am sure she will appreciate you finding help and support for her. Take care, Helen.

Thank you Helen we are beginning to realise that it’s not just us and that it does seem to take time to settle physically and emotionally. Yours and others feedback is nice to have. Janettes not good talking to others about it so not sure I can convince her to try counselling but I do think it’s worth a try. Your help is appreciated. 😊👍. I can’t even get her to talk on this site never mind a counselled. If anybody asks how she is she says she’s fine but in reality she is far from it but getting there. Thanks again. Ian

I have a pacemaker and I have strange flutterings in my chest and I can feel the pacemaker settings it’s self twice a day , my cardiologist told me everything I am feeling is totally normal.I have a Merlin Home Transmitter that monitors my heart through the night , the readings go through to my cardiology dept and if any changes crop up they contact me .

The monitor gives me a sense of security, maybe your wife might benefit from a monitor ..

Oldsurfdog profile image
Oldsurfdog in reply to 274-

Thanks. She had a REVEAL monitor fitted when we were trying to find out what was wrong which worked but I think the constant monitoring might not suit her. She has problems accepting the technology anyway but thank for your info.

She should speak to the pacemaker clinic. When I have had or felt I had any problems with mine they have always been quick to see me and check it out. They are better to speak to than a GP and can answer all her questions.

I would say paused not stopped. How long were her pauses ?

Yes ok paused. The consultants said her heart stopped for 5.5 seconds

Mine was only 3.5 seconds but my heart rate had always been low it went down to 42 bpm . Both when asleep

Thanks. We are hopefully seeing the clinic in a week so might know more then. Thank you 😊

Yes.......I was really surprised when I went for my pacemaker check.....I felt I was taking the pacemaker to the vet! The pacemaker technician didn’t even look at me....kept her back to me whilst twiddling with the computer!

Hi Ian,I can identify very strongly with your wife's story. I had been noticing missed heart beats and was feeling light-headed and breathless for several months before finally blacking out and making a mess of the back of my head. I was taken to hospital and had my pacemaker fitted the next day as a matter of emergency.

Before I left the ward, one of the nurses must have noticed that I was frightened and disorientated, and she took the time to sit with me and explain things. In a nutshell, she told me that it be about 3 months before I would start to feel normal, but I would have a new lease of life.

Thanks to a lot of support from my wife and my boss, I got through the first 4 weeks, even though I still felt light-headed and breathless (not to mention having a sore shoulder and head, both of which got better).

I hadn't discovered HealthUnlocked, but one way I found to come to terms with things was to chat on line with members of the Pacemaker Club (an on line forum similar to this one).

After those first few weeks, I started to feel better, and I can now live a normal lifestyle.

We all heal in our own time and I'm sure that your wife will soon start feeling a lot better and looking forward to a new lease of life. Best wishes to both of you.

Oldsurfdog profile image
Oldsurfdog in reply to EMBoy

Thanks for that. As others have also said I think we were expecting too much too quickly. The consultant basically said she was fixed and she would be fine so we thought something was still wrong as she still felt light headed and weak/breathless. It’s nice hear that the recovery is not supposed to be instant and can take weeks or even months for the Body and brain to adapt. I think if she can get her head round it we will get there. Thanks for everyone’s advice- we thought it was just us that struggled. We were starting to think the pacemaker had not solved the problem but I think we might just beginning to understand what is really involved in the recovery and that it was unrealistic to think it was an immediate and instant fix. I am reading Janette all these comments and I think it’s helping. Thanks everyone.

Ian

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