The Mind-Atrial Fibrillation Connection

[CDreamer]

A frequent topic on this forum is the affect that PAF has on our mental health - anxiety, low mood etc.

bartsaf.com latest blog is on a recent study begins:- A lingering topic from 2024, was the association between mood and AFib. Low mood worsen symptoms, which leads one to ask…can improving mental state and wellbeing treat Atrial Fibrillation?

The article is a 5 min read in plain language and the take away is:-

There are undisputed benefits of CBT, especially in individuals with low mood or anxiety. There is a significant fear and anxiety component associated with AF, especially when there is poor education and understanding of the condition which can lead to fearful behaviours such as avoidance, inactivity and isolation. Understanding AF is a critical part of its management and can reduce symptom severity as demonstrated here in the AF-CBT study.

In an ideal scenario each patient would have unlimited access to healthcare professionals to present concerns, discuss their symptoms and develop an understanding of their condition. Whilst healthcare systems globally develop systems to holistically support patients in this way, the BartsAF blog can serve as an interim solution.

I don’t think any of us would argue with the statement in bold. I would add that the huge amount of information available on AFA website alongside access to doctors at Patient Day has been invaluable to me.

[jeanjeannie50]

So true CDreamer.

Many times while in AF something pleasant has taken my mind off an AF attack and it's completely disappeared. It usually involves other people taking my mind off of me 'sat in poor me mode' with cheerful chatter.

Jean

[secondtry in reply to jeanjeannie50]

Agreed!

[BobD Volunteer]

In 2006 when I was patient representative on the BHF committee which "invented and trialed" Arrhythmia Nurses , alongside Prof Richard Schilling who was lead consultant to the team the subect was one I raised at every meeting. I stressed the importance of helpng patients with the anxiety and stress which AF suddenly caused and the "revolving door " of worry/AF worry AF. Although there have been occasional attempts (one Patients Day many years ago we had a talk from a hypnotist about ways of self help) to deal with this matter there is still woefully little help . At least there now seems to be some "official" acknowledgement of the issue.

[CDreamer in reply to BobD]

And you know, I know and despite various attempts at arranging group socials, regular meetings for Q&A which we have both been involved with it seems we are no further forward - apart from the brilliant job that Trudie & co in the AFA which is the fall back position.

[Singwell in reply to BobD]

Bob I've long thought we need local support groups in NHS trusts that run a monthly meeting in surgeries. A meeting where patients share their experiences and perhaps there's a talk or guidance session from an arrhythmia nurse, or practitioner such as psychotherapist or other mind body healing modality.

[BobD Volunteer in reply to Singwell]

It has happened but seldom lasts long. CDreamer was patient lead in Exeter when the arrhythmia nurse there started a support group and I went down to represent AF Association. In the late 2000s I ran a series of informal monthly lunch meetings at various pubs from Taunton to south of Exeter over a five year period and Jean organised one at a hotel in Exeter near central station. All were well supported by patients and members of the forum but in my case the costs became a problem since each needed a prior test lunch to judge accomodation etc and the mileage I was doing each month was getting silly for an aging pensioner. The problem with hospital based groups is often the lead nurse moves on and the impetus is lost or management withdraw support. I have known two such fade away. It was fun whilst it lasted though and having faces for people like Benhall. Jalia, CD and Jean was great. There have been social lunch groups in London and Surrey too which sadly have also met the same fate.

[Cavalierrubie in reply to BobD]

Thank you Bob for all that you do and have done to hold us together. Just think you deserve a thank you with this post. I remember how much you helped me when l was first diagnosed. The thought of how l was then, as Singwell says ‘l would have sunk’.

[JaneFinn in reply to Cavalierrubie]

Agreed!

[Cavalierrubie]

Good post thank you. The anxiety caused by AF does need to be recognised. To me, personally, this has been a big portion of my AF symptoms.

“Avoidance, inactivity and isolation” is spot on in describing how AF can affect you. I have told most of my friends that l am unreliable and unpredictable in making any social arrangements, which is the part of AF that l find depressing and restricting. However, we battle on with achieving the best quality of life possible and try not to let it define who we are.

Understanding the condition is a must to alleviate the fear and without this forum, l personally would have been in a very different place. It has helped me to cope, especially with the changing symptoms of AF., and the treatments available. It has been a big reference book and priceless to my mental health.

It would be great if we had access to healthcare professionals to help with our mental attitude as part of the treatment, but with the continued deterioration of the nhs that seems impossible. We live in hope.

Chris.

[Singwell in reply to Cavalierrubie]

I'd have been sunk without this forum!

[JaneFinn in reply to Singwell]

Me too. Truly. I’m beyond grateful to this forum and all the faithful people who share their experience and wisdom 🙏🏻

[FraserB]

Great study, and I would add that simply feeling heard and informed by the people running the program would also help ease their symptom perception. From my own experience there is not enough of that.

[Singwell in reply to FraserB]

True.

[Afibflipper]

I agree with this, I just have one point that I’d like to add. My own thought re AF, with anxiety I felt (when I have been in fast hr af) when the rate is high I found that anxiety heightened but I feel the speed caused that. I’m presuming that the reaction to it, was, maybe an increase of adrenaline being rushed around the body. I felt I have whole body tremors, like running a race for a long time. 160 bpm, slightly low bp, light headed. These symptoms felt like I was hyperventilating (but I wasn’t! ). These are anxiety symptoms too but I wasn’t necessarily anxious at the time. Maybe coincidence.

[CDreamer in reply to Afibflipper]

Not coincidence - that is your internal ANS alarm system - Flight or Fight response because your body senses something wrong. The plus side of this is there IS a biological feedback loop which calms - which is Long Slow Relaxed breathing techniques. May not stop AF but it will go a long way to reducing your rate. The other side of that is Self Talk - which is the CBT element. Put the 2 together and it will help manage the horrible symptoms.

[Singwell]

Thank you for sharing. Without question I know that when my sympathetic nervous system is on alert for too long, I will get AF. I have other triggers to take care of such as a digestive fault, but it's always the nervous system that tips the balance. Didnt know about this organisation (although obviously know about Barts).

[Vonnegut]

As it seems I failed to reorder my Flecainide in time I am running low, so I didn’t take the 50mg I usually take in the morning yesterday and was AF free throughout the day without it. I took one at night as I didn’t want to have my sleep disturbed scarily but it was an encouraging experience. Do hope I remain AF free til my replacement Flecainide is available! I intend to “keep calm and carry on” taking things gently as usual.

[Cavalierrubie in reply to Vonnegut]

Vonnegut you have done this before. Easily done, l know, as l have done it myself. You need a reminder, so what about putting a large note, preferably in red, up on your kitchen door, or wall? Get the rest of your family to put it on their calendar for you. Go for it in a big way. 😂😂😂Keep calm, as you say, and hope AF keeps away. Take care.

[Vonnegut in reply to Cavalierrubie]

I took 50mg today during the “coffee morning” thing and around that time I received a text from Boots to let me know they have my new packs in already so my husband can collect them for me tomorrow as he’s away until the evening today and I shan’t run out after all! I have a lovely Cloud Appreciation calendar and I’ll take your advice and mark the reordering time on it in red in future. It was encouraging to find my heart was okay yesterday when I didn’t take the first dose of the day though.

[Cavalierrubie in reply to Vonnegut]

That’s good to hear. All is well that ends well. 🥰

[Singwell]

The blog is very well written too. Easy to read, explaining statistical and other measures in a user friendly way and pointing out take homes. Delighted to have landed on this resource CD!

[secondtry]

That is a great read, thank you CDreamer.

I think the 'solution' is to try everything and identify the one or more avenues that work best in your case.

Over 12 years, I have tried CBT, group socials & NHS group meetings but whilst not anti I think I achieve the most progress de-stressing by taking ideas from this excellent Forum (thank you Administartors & everybody!) and adapting to my situation independently by trial and error.

[DKBX]

Controlling anxiety is key. I use a combination of yoga, breathing techniques … and home-grown cannabis tea. Of course the latter is only advisable if it’s legal where you live.

It also lowers bp.