Diaphragmatic spasms and uncontrollable stomach breathing = afib symptom?

[Efka]

Does anyone have diaphragm issues or involvement from their afib?

My husband has ad-hoc cramps (right by the solar plexus, you can see the contractions). After these attacks which also have uncontrollable stomach breathing he’s exhausted and says it’s like he’s done 100 sit-ups. It impacts his appetite etc.

We after kind help here and a private cardio consult assumed it was a phrenic nerve injury post his ICD operation causing a “diaphragmatic twitch”. It has definitely lessened in severity after 7 months but is still there daily so thought I’d ask again if the diaphragm tends to be effected by afib?

Background is husband had a dual lead ICD implanted February this year and afterwards have had a whole host of random, and debilitating, symptoms and we are still trying to sort out what is afib related and what is not.

I apologies in advance as I will separate out the weird symptoms and post each on it’s own.

Many thanks for any help and experiences

Eva

[BobD Volunteer]

Sounds more ICD related than anythng else.

[Efka in reply to BobD]

Thanks Bob you’re a powerhouse of knowledge so I appreciate your opinion!

Good to hear it’s unlikely to be afib related.

Me too has from the start been thinking nerve issues (vagus and/or phrenic) from the ICD leads/op.

I will keep asking questions of the doctors. Finally got an EP appointment for September so will see where we get too.

Thanks again!

[CDreamer]

I don’t know about ICD diaphragmatic issues but I had similar with 3 lead PM implant in 2018. It’s much easier for the 3rd LV lead to be either misplaced (which what happened in my case) or detach as it is on the outside, not the inside of the heart.

Only way I can describe it is very violent hic-ups causing breathing difficulties, they call it diaphragmatic twitch - feels nothing like a twitch! I rang my pacing clinic who had me in within a few days and tested, switched off that lead and then had to wait for a replacement - for which I eventually went privately.

May I suggest you look at the info on the AFA site and the BHF forum and if you haven’t already look at their info on ICD’s - here is the link

bhf.org.uk/informationsuppo...

heartrhythmalliance.org/afa...

Maybe then give them a ring? You can also email the AFA staff and ask for recommendation in your area for a private consultant.

Hope you get help as I empathise with the diaphragmatic ‘twitches’ I couldn’t live with them for more than a few days!

[Efka in reply to CDreamer]

Thanks CDreamer and I am very sorry you went through that. And that you had to go private to get it resolved.

So again I am reassured it’s unlikely to be afib related and I need to stay on the ICD.

Yes I totally agree with you on the name “twitches” blimey as you say early on he could barely breathe when it kicked off. It has abated thankfully in severity but I’d say it’s still his main complaint.

I’ve read a lot of research articles and as you say seems more “common” for the third lead to cause issues. The pacing team have done a challenge test (after us hassling for months!) which was negative and almost all pacing has been turned off apart from the bottom bpm (40) and of course the intended shock for any cardiac arrest activity.

I still feel the leads are irritating nerves and causing his weird symptoms I’m just struggling to get anyone to engage. Basically as they say it’s not the heart causing the issues they shrug us off. Finally got a first EP appointment beginning September so I will wheel out my long background document and research articles and see what happens. I’m beyond worrying about offending anyone by now. My husbands life has been decimated after what was sold as “just a belt and braces device” and an easy day op with no side effects.

I will read your links thank you, the more information the better.

Hugs, Eva

[Ppiman]

I don't know if this is similar, but I do sometimes get left-sided stitch-like discomfort during arrhythmia (AF or ectopics) episodes so the phrenic nerve might well somehow be involved in that. It can last several hours and I have tended to blame my small hiatus hernia on it but have no idea.

I have read that damage to the phrenic nerve can rarely occur during any cardiac catheter procedure and that it can be very troublesome and take a long time to clear up. It's good to read that your husband is slowly improving from this. Poor chap - it sounds very uncomfortable.

Steve

[Efka in reply to Ppiman]

Thank you for your kind words!

Interesting you are getting stitch like discomfort… I appreciate you sharing, so possible afib involvement.

I am very tempted to get a holter monitor for a few days then we can note any symptoms and see if they correlate to afib/flutter/anything.

Sure is a jungle trying to discern what causes what and I know ultimately it doesn’t hugely matter as long as things can get a bit more under control and stable.

Another kind chap on here when I asked months ago said his wife suffered phrenic nerve damage during a cardiac op and all of a sudden after 7 months she woke up and more or less said it’s gone - so yes we have hope. Just need a bit more patience

Thanks again, Eva

[108cat]

I don't have anything to add really but just so sorry to hear the horrible time your husband is having it's very stressful for you, I wish you all the best ..

[Efka in reply to 108cat]

Wow thank you that is very kind of you to reach out! All helps me staying sane and knowing we are not alone.

[iris1205]

Hello Eva,

Sorry to hear they are so violent. I get a diaphragmatic spasm on my left side as well. It is remarkable to watch it literally suck in the skin below the rib. Mine is not so violent or lengthy in duration. I can reduce the spasm fairly quickly if I gently stretch backwards (into extension) and rotate slightly to the left (because my spasm is on the left). The sooner I do this the better, if the spasm takes hold it takes longer to reduce the spasm. I also gently massage the area with my fingers or knuckles.

I recognize your question as well, is this relative for the Afib? I can't say it is. I am a maniac researcher, I always looked for triggers that might be relative to AF episodes but honestly I never saw an immediate causation. Perhaps cumulative with other issues? I also have a small hiatal hernia.

You might encourage deep breathing practices so the diaphragm can stretch out more often, Be sure to encourage a longer exhale so there is no hyperventilation.

Best wishes -

[Efka in reply to iris1205]

Thank you and interesting you too have a left sided spasm like Steve above.

Afib sure does look like it can be a bit of a chameleon symptom wise…

We’re too working on relaxing/stretching the diaphragm. Got two brilliant therapists (osteopath so helps with the nervous system also and a lady specialising in fascia). And also breathing exercises as you say with longer exhales, so fingers crossed we can improve over time.

Thank you again for your help, Eva

[iris1205 in reply to Efka]

Great choices!

🙏