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
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Oldsurfdog
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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.
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.
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. 😊
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.
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 ..
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.
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.
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.
Hi, you don’t say what her diagnosis is and how she’s paced. I’m paced 100% after complete 3rd degree block. I blacked out for the second time sitting down thankfully. The first time a year ago I had some nasty facial injuries. The reason for my block is unknown and I had no other symptoms leading up to it. I survived because my heart maintained escape rhythm for more than 6 hours to the surprise of the consultant. Abpm.140. Vbpm 28. Emergency dual pacer was implanted not quite 3 weeks ago. The first night out of hospital I became anxious, it IS a big thing to get your head round. I had a few minor dizzy spells the next morning. I phoned the pacer unit at the hospital. The reassurance was great, very helpful. Something on the lines of , first of all if it wasn’t working I wouldn’t be able to make the call. If it had momentarily stopped i would have passed out. So no worries there. You’re are almost certainly feeling anxious. Its OK, everybody with 100% pacing feels anxious to start and it ok to anxious about feeling anxious. There is a good facebook group Pacemaker UK. ( you will find me there with very recent inputs under the a name of Jim) Ive found it helpful to read about other peoples experiences and talk about my own. I went back for some pacer tweaking and now I am in good shape. I don’t think about it constantly now. The implant site is still a little uncomfortable, I can’t raise my arm and I’m still not driving . These are the times when I think about it but otherwise its slipping blissfully into the background. This is how I am, still at the everyday is a bonus and be thankful stage. It will get better.
Hi I am writing this as I can relate to her I’m 28 av had mine in 2 years and am still suffer from the same problem now some days a think have a pulled a wire or what if it stops working will I die then other days I’m totally fine tell her to talk to her doc and consultant or introduce her to her because i find it much easier that if am worried I can just have a rant about my feelings and all these lovely people understand and may have been through the same thing it’s nice to no I’m not alone as when people in my community find out I have a pace maker they ask question like y ur too young ee a carnt belive that some times I feel like I’m getting judged but on her I can let all my worries out
Thanks for that. This site and you guys are great. She’s getting there. I suppose you have to just try and get used to it and trust comes with time. Just been diagnosed with angina aon top of the electrical problem but tablets might sort the breathlessness. So she is doubling up on the anxiety now if only she could get rid of the headaches. Perhaps I’m one of her headaches 🙂😂She’s hanging in there though.
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