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[Caza]

Once again I need your help. My husband has AF. A year ago January he had an ablation. He was quite poorly afterwards & you guys were so helpful with information that the hospital hadn’t given me. So wind forward he’s been in & out of AF ever since. When he saw his cardiologist last July it was suggested that he have another ablation my husband declined. He’s been okish since then & accepted that some days he’s ok & some days he isn’t. But two weeks ago he had a seizure type episode in the night, it was dreadful to witness &I really thought he was dying. The paramedics were brilliant they didn’t want to take him into A&E because of the virus. Anyway the cardiologist rang today & he’s given my husband the option of having another ablation or & this is the bit where I need help with, my husband doesn’t remember what it was called but they put some sort of device under the skin to monitor the heart. Does anyone know what it’s called or anything about it please. We have to give them an answer by Tuesday. Hope someone can help point me in the right direction to get more information many Thanks.

[Hidden]

Click on the link below and see if it rings any bells.

heartrhythmalliance.org/aa/...

I have no personal experience but I’m sure others here on the forum will be able to help you ......good luck.

[Caza in reply to Hidden]

That’s very helpful thank you. Have you or anyone that you know of ever had a seizure type episode due to AF?

[Hidden in reply to Caza]

Not personally Caza but it might be worth typing it into the search box top right of this page.....

[Caza in reply to Hidden]

I did, nothing. So hard with this virus going on. Not sure how we’re to have an answer by Tuesday

[BobD Volunteer in reply to Caza]

I'm a bit late to this party Caza but never heard of anything remotely like a seizure connected with AF. Mini strokes or TIAs yes where people have not been properly anticoagulated and even a couple of our members who have had TIAs when they do take anticoagulants . Sudden faints maybe when going back into NSR but they are not seizures .

An implantable loop recorder sometimes called a "reveal" will monitor the heart and details can be downloaded for the cardiologist to study so will help diagnose what is going on.

[Caza in reply to BobD]

Thanks for your reply. The paramedics said that my husbands blood pressure had dropped suddenly which caused the episode which they linked to AF.

My husband had a phone appointment with a neurologist who thought it not to be a fit but a type of seizure linked to AF. I’ll look up the name tomorrow & post it. My husband looks to me to know what’s best for him & in all honesty I don’t know. I’m scared.

[Lizty in reply to Caza]

Caza.... seizure ....sounds like what my father had...linked to both low blood pressure and atrial fibrillation. One of the gaps between heart beats was just too long and he went into shock. As he had permanent AF they fitted him with a pacemaker which made a big difference. Sounds like your husband's af is not yet permanent, which is why the cardiologist is offering a second ablation. I don't know what the gadget is to which you are referring. However, when I had my ablation, I was rigged up to a computer which monitored my heart rate for 24 hours afterwards. I suggest that if this monitor is worrying him, you contact the AF nurse on Monday and discuss it with her. Re the seizure, yes... my Mum said it was very frightening to see. Good luck.

[Caza in reply to Lizty]

Thanks for replying. It was terrifying. I think that is exactly what happened. I’ve seen someone have an epileptic fit & in some it was similar but also very different. It’s so hard when decisions have to be made via the phone. We’re thinking the monitor for now.

Your reply was helpful

[Lizty in reply to Caza]

Glad to help. I misread the last part of your message... didn't see the 'or' misread the monitor as 'and'.!

Yes, agree with Bob. Sounds like an implant loop recorder......

[opal11uk]

When I had an ablation, my life became total misery, I kept having waves of heat going from top to toe accompanied by 'white outs' which apparently are precursor to black out and fainting. This was very very frightening and a worry because they would happen anywhere. I went back to hospital for tests but no one was saying exactly what the problem was but suffice to say that this situation couldn't continue and it was at that time the decision was made to fit a pacemaker and that in itself saved my sanity. As I had already had a stroke I couldn't be fitted with the type that sent back recordings as they happened, directly to the hospital, but that was discussed so I am thinking that this must be similar for what has been suggested for your husband. Ablation does not work for everyone and I certainly was not prepared to go back in for a second ablation or even more until they got it right. Since the Pacemaker life has improved 100% so I would suggest that on Tuesday you get back to them as expected and ask about it in more detail and then make your decision. Tell them that you need to understand exactly what is going on and what would be implanted and why. Good luck x

[Caza in reply to opal11uk]

I can’t say my husbands ablation was as bad as yours just after he’d recovered it hadn’t made much difference. I think we’ll go with the monitor for now. So difficult when we can’t see the consultant or the team. So hard with just a phone call.

Pleased you got a positive outcome with the pacemaker.

[CDreamer]

Caza - did you look at this information on the Arrythmia Website? Sorry I’m a bit late to the party but may give you information which may help you make up your mind.

heartrhythmalliance.org/sta...

Purely my personal opinion - in your husband’s position I think I wouldn’t want to agree to any treatment plan until I knew exactly what was causing these symptoms so the cardiac monitor sounds a good plan but obviously you need to be guided by the cardiologist.

Hope this information from the Arrythmia Alliance helps. It is not a well known condition and many doctors aren’t aware of it so do consider ringing the STARS help line if you want more detailed information. Knowing the right questions to ask is often the key to making these sorts of decisions.

Best wishes - CD

[Caza]

Thank you for your reply. I read what you sent, although some of the symptoms were similar a lot were not, so I can rule that out. The trouble is we’re not getting to see the cardiologist just the nurse on the phone. The nurse was absolutely lovely & helpful but my husband didn’t ask questions, doesn’t want to be a nuisance at a time like this 🤦‍♀️ I think we’ll go for the monitor until we can be sure of what’s going on. This seizure type episode has happened three times in four years but this was by far the worst.

[Buffafly]

Having read previous comments I agree it is probably a loop recorder. My daughter used to have what was diagnosed as epilepsy until she was an adult - very rare episodes but nasty - then a neurologist told her she didn’t! But no diagnosis. Then I saw a tv programme about a man who had what appeared to be seizures and he was eventually diagnosed with a heart arrhythmia. So as we all have some kind of arrhythmia in our family I think that was it. She seems to have ‘grown out of it’. I think there may be info on the STARS website. Hope that helps and the recorder reveals the problem 💜

[Marney]

I have had Afib for 17 yrs. many cardioversions. 3 ablation and pacemaker.

First 2 didn’t work very well. The 3rd did work although a few ectopics and occasional hr around 100, but I would do it again It has been worth it. Now I have a life. I am 77 and female. It hasn’t been a walk in the park but sometimes you just have to get on with it.

The other option I think just monitors heart but doesn’t correct the problem.

At lest that is what I have heard.

Marney