AFib and Mental Health Disorders - Atrial Fibrillati...

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AFib and Mental Health Disorders

Sharonica-Admin profile image
47 Replies

Hello Everyone!

The AF Association is seeking information regarding the connection between AFib and mental health disorders. We have been doing research on the connection between the two; however it will be beneficial to hear from patients on the forum who are dealing with this daily.

If you have information (i.e. unique tips or tools that help you cope) you will like to share please comment below.

If interested in sharing your personal story regarding AFib and mental health, please be sure to email them to us at info-us@heartrhythmalliance.org.

Thank You!

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Sharonica-Admin profile image
Sharonica-Admin
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47 Replies
10gingercats profile image
10gingercats

'mental disorders' is a very wide remit. can you be clearer please? Many experience anxiety.

Does that count?

Sharonica-Admin profile image
Sharonica-Admin in reply to10gingercats

Thank you for your response.

Yes, all mental disorders - anxiety included.

in reply toSharonica-Admin

Anxiety is *not* , per se, a mental disorder. If, for example, a dangerous lion which has escaped from a zoo is at the foot of Fred’s stairs, the anxiety which he may experience does not necessarily indicate that he has a mental health disorder. Anxiety is entirely normal and appropriate in some in other words. Anxiety, however, when is it excessive, may indicate that an individual has a mental health disorder.

BobD profile image
BobDVolunteer

AF creates anxiety . Always has. I started banging on about this many years ago but sadly few medics seem interested. Good luck.

Sharonica-Admin profile image
Sharonica-Admin in reply toBobD

Thanks for sharing BobD.

ec931657 profile image
ec931657 in reply toBobD

You're right about that. I had very strong anxiety after I was diagnosed many years ago. After I had my ablation, my anxiety spread into all areas of my life becoming more like agoraphobia. I struggled with this for two years. Now I am basically free from anxiety which I used to think was impossible. I even had three episodes of Afib slip through in the past year, but no longer have anxiety about it.

CDreamer profile image
CDreamer

My experience is that as BobD says AF causes anxiety- it triggers an ANS alert response which causes many physical responses = alarm = anxious thoughts = downward spiral = withdrawal from many everyday activities = depression.

It’s not enough to say there is a link - there is a process which = many forms of emotional & psychological distress - loss of health = loss of job = economic loss = added stressors. Loss of the life we had before AF for many people.

There is support out there but it is hard to find, hard to access and rarely provided for in by NHS so often beyond the means of many.

I could write reams but right now I’m away on holiday, the 1st in 3 years & I can feel the blood rising so I’ll stop here as I just have enough time to do a Mindfulness exercise to get the HR down again!

Sharonica-Admin profile image
Sharonica-Admin in reply toCDreamer

Thank you for sharing this information.

sotolol profile image
sotolol in reply toCDreamer

👍🏻 bang on. CDreamer

skipabeat profile image
skipabeat in reply toCDreamer

Enjoy yourself!!!

Paulbounce profile image
Paulbounce

For sure there's a link. A-fib causes anxiety.

My last attack was about 4 - 5 weeks ago when I was in Portugal. I've been pretty much free of it for yokes now so when it hit was 'bang' - it's back. Heart pounding and all that jazz.

The attack soon passed but for 7 or 8 days after I was right on edge in case it came back. I think it's pretty normal. It was anxiety for sure - however it soon passes (until the next time).

For me having a slow walk and being around people helped during the attack. Keeping in mind that it won't kill you also can help to calm you down.

I think it's also important to always carry your PIP with you. Flecainide is my pill to go and just having it at hand is a comforter. There's always one in my back pocket - just in case ;-)

Paul

Sharonica-Admin profile image
Sharonica-Admin in reply toPaulbounce

Thank you for sharing.

I will be sure to keep your coping mechanisms in mind when speaking with other patients.

sotolol profile image
sotolol

My first granddaughter was born and stopped breathing. The stress of all that followed started it. I was in hospital at the same time. Not able to visit my daughter. It was 2007. Then my son became ill and after three years died 2012. Constant grief caused constant Af. The grief of him dying shattered my family and my health. I could go on but it’s boring so yes mental health - anxiety - Af - go together. Just my opinion.

sotolol profile image
sotolol in reply tosotolol

Pill in pocket is a comfort but even that at times doesn’t work. Breathing tactics I have learnt since being on this forum really helps. This site has given me more confidence wish I found it years ago. There are many on here who are so knowledgeable.

irene75359 profile image
irene75359 in reply tosotolol

It's not boring in the least, you have had a terrible few years. Best wishes for you, in your health and in dealing with the never-ending process of grief.

sotolol profile image
sotolol in reply toirene75359

Bless you irene75359 very kind of you to understand.

Hi there Sharonica,

I have (highly controlled) AF but no mental disorder. My AF is controlled in part by medication and in part by calming my Vagus Nerve.

It needs to be said that increasing research has been undertaken in recent years on the role (if there is one) of a dysfunctional Vagus Nerve and mental health. More and more much of this ( wide ranging and independant) research is leading to the conclusion that there is this link.

More and more it is becoming clear that this nerve, an information superhighway in the body, is significantly more important to the way a range of health issues manifest themselves in each and every body on this planet and the way the medical profession view possible treatments.

When I have more time on Sunday I'll email you seperately and for those interest I'll put a post on here as to my resource references for those interested.

John

Mrsvemb profile image
Mrsvemb in reply to

Very interested as to how you calm the vagus nerve. Will look out for your post on Sunday.

Val

in reply toMrsvemb

Hi there Val, and others who expressed an interest,

My comments are below ..............

Calming the vagal nerve ........well I know this sounds trite but it all depends on what the issue is.

For me it was identifying food as the trigger for my AF. Others may find, sleeping on the left side, bending over performing a domestic chore, drinking an ice cold drink - be it a soft drink, an ice cold beer, then there is drinking a hot coffee or an ice chilled coffee, stress, anxiety, extreme sports/athletics, even gardening. There are probably a score of other triggers that many of you experience too.

So back in the day 10 years ago when I was first diagnosed with paroxysmal AF ( and also asymptomatic too) I joined the old AFA Forum which was on Yahoo in those days ( now defunct). I then had ( as you newbies do from time to time) a “virtual” meeting with BobD ( who you all know) and another guy who doesn’t materialise as often as Bob does - MarkS. These two triggered my imagination and thought processes and introduced me to the world of the Vagus Nerve.

I began to develop digestive issues .... ( forgive the detail) diahorrea first thing in the morning, massive, massive and painful bloating, very loud and antisocial intestinal gurgling and burping. Never had any of these features in my life before. Saw my GP who organised blood tests to examine IBS and Coeliac Disease - all clear.

I then began to link food and the VN. The bloating was the worst and would be the little ripper that would send me into AF. There were times when I could watch my gut inflate as if I was attached to a petrol station air line :-) I then consulted a Nutritionist, long story short, went into a food diet plan -free from gluten, wheat and oats and any product that contained even traces of said stuff. The food exclusions widened over time (click my user name and scroll through past posts). End result ..... now only one AF event since April 2015 ( which occurred sleeping on my left side) and that was in mid February 2018.

Of all the symptoms I described earlier I now get trouble by only one - bloating ! But only rarely and nowhere near the level I had years ago. The other bowel/gut/ digestive issues are gone except perhaps occasional burping. My VN is calmed !

The only other practice I adopt is diaphragm breathing and this is best illustrated by viewing short videos on YouTube. I have tried mindfulness and meditation with less success but I’m sure that’s about me rather than the processes. I wish I could wave a magic wand and help you all achieve the same success as I have had, I can’t, all I can do is bang on about the VN and to this end I’d refer you to the following link .............

ncbi.nlm.nih.gov/pmc/articl...

It is but one research project on the VN and if you can spare the time it is worth a read. Of course I am in no position to comment on its accuracy, and/or authenticity but for me it is an indicator that in many parts of the world researchers are starting to examine this information superhighway in a lot more detail. I like this paper because, once you have put aside the more technical medical jargon there seems to be a lot going on here.

So, the thing is this, what is emerging is that the VN, being part of a extraordinary body system needs to be considered along with the autonomic nervous system and its two divisions, the sympathetic and parasympathetic nervous system. (fight or flight) and it these two and what they control that may provide clues as to dealing with health issues. Hey ho .... the heart is the electro mechanical pump that keeps us alive ........... BUT, the MASTERMIND is the nervous system that I’ve just described.

Hope this helps, I know I haven’t given you the precise solutions you’ve been seeking BUT I hope what you read may give you the signpost for an appropriate direction of travel.

Do remember it has taken me some 9 to 10 years to get to the stage where I can say my AF is very, very controlled. I would never say CURED, no way !

John

Mrsvemb profile image
Mrsvemb in reply to

Hi John, thanks so much for your very detailed reply.

I reckon that I am virtually there in calming the Vagus nerve.

I follow a very strict gluten free diet due to an intolerance to gluten. My triggers are alcohol, caffeine, sugar (I can tolerate a small amount), most artificial sweeteners. I also have a question mark over almonds.

I don’t have a problem sleeping on my left side. Also I make sure that I keep my fluid intake to around 6 pints a day. This is a mixture of water, both still and sparkling, decaf tea and decaf coffee.

My glitch a couple of weeks ago, was due to not checking the ingredients of Gaviscon tablets. Where I have had them on occasion for years but probably never more than 2 a day. This time I had 7 in less than 24 hours so I believe that I dehydrated due to the salt in them, coupled with aspartame which they also contain.

My recent gastric problems have been caused by Rivaroxaban and before that Edoxaban. I am giving in and going to try warfarin, though with my track record of drug intolerances, I am not very hopeful.

Thanks for taking the time to give such a detailed response. I am now going to read the article in your link.

Val

in reply toMrsvemb

Hi Val,

Good luck with the Warfarin - if I may suggest, when you start it keep a short set of diary notes on how you react to it.

There is a last ditch device available now for people who cannot handle either Warfarin or the NOAC's ............ its called The Watchman device. Beyond that I know nothing of it at all. Suggest you 'google ' it I'm sure that these days there is a website that more than discusses it. Maybe something on YouTube.

I must say the process you describe does sound very much as if you are well into the diet thingy. For sure, if I am careless with my food and ignore the 'Gluten Free' rule .......... I WILL suffer for it :-(

Actually, now I'm into my dotage and have time I can trace digestive issues right back 40 years to my mid 30's - and following diets given to me by the Dietician at Sydney Hospital in Australia ....... just never connected things until encountering this vagus nerve bizzo. Back in the day who'd have heard of this rotten AF ??

Good luck,

John

in reply toMrsvemb

Hi Val,

I forgot to mention that ............ I know when I am normal because my abdomen, my chest, my gut ..... all feel light, as in light as a feather.

I know if I'm going down the AF slippery slope because all three become heavy, as in heavy as lead and my breathing very, very laboured.

Thankfully, that's not happened now for soooooooooooooo long. :-)

John

djmnet profile image
djmnet in reply to

Yes, please. Do share how you calm your vagus nerve! I've heard about humming and a couple of other "maneuvers" but without much success.

Bagrat profile image
Bagrat

Briefly, I developed anxiety and panic attacks about 5 years before I developed Paroxysmal AF.

I was surprised that PAF was less scary and made me feel less ill than the attacks of anxiety and panic. I have had counselling ( 3 sessions years ago) and use various techniques including box breathing, 7- 11 breathing, mindfulness, meditation and self hypnosis. I do not use any of them consistently I must confess but they all help

sotolol profile image
sotolol

Also to say I was on this site 5 years ago with a question.

10gingercats profile image
10gingercats

I had extreme anxiety before Afib was diagnosed.The not knowing and waiting for a diagnosis caused the anxiety .Now in perm. Afib. the anxiety return s with gross palpitations when I am affected by certain other things. Cause and effect?

Tudee profile image
Tudee

I have been in permanent persistent AF for 2 years, and feel at peace with my condition, and indeed feel happy and content with my life.

, I do not have to suffer the constant state of awareness usual with a PAF sufferer ,and ensuing panic and dread when in the throes of an attack.

I am well controlled now on just Bisoprolol and Apixaban, having tried all the usual meds during preceding years including Dronederone.

I was quite depressed whilst having PAF, and restricted my life with avoiding imagined triggers or anywhere any distance from home, my safe place.

I am now attending exercise classes, and walk at pace twice a day. Life is good. Dee

7164 profile image
7164 in reply toTudee

Dee

What a good reply

I completely relate to you

Afib has changed my life not for the better and as a paf symptomatic I live in anxiety

Tudee profile image
Tudee in reply to7164

I know it’s a rollercoaster, but in my worst moments and living alone, those fears were magnified, I found great comfort and advice on this forum, great support ,calming, reassuring keeping me “talking” whilst I calmed down. Irreplaceable.

Tomred profile image
Tomred

anxiety comes with af of course but recently ive read in some newspapers that af can lead to dementia this is a real serious mental disorder as you all know i get anxious just thinking about it my parents ended up with dementia and my mother had af maybe connected i dont know sometimes it makes you realise when you are well you are well and get on with life

Hilly22 profile image
Hilly22

When my heart first started going haywire I was lucky enough to be with someone who could reassure me on what was happening or I would’ve thought I was going to die. Then I found this forum which has generally done more for me than anything else to curb the natural anxiety that AF brings.

I have PAF, get anxious in certain situations, but don’t class myself as having a mental health problem. These are the dos and don’ts (more don’ts!) that I’ve discovered work for me personally ...

1. Don’t think about it too much, it’s easy to become obsessed which tends to increase the vicious cycle.

2. Don’t continually check your HR or BP ... this may not suit everyone but works for me as I’m very symptomatic so know when I’m having an episode. I don’t own an app or machine to check my heart rate, just a finger and a wrist, and only occasionally!

3. Get on with life as if you don’t have AF and cope as and when an episode happens, in whichever way works for you.

4. Avoid stressful situations ... or learn to cope with them by using calm techniques.

5. Give up looking for triggers, it might drive you crazy! Though I’m convinced that for me it’s sugar!

6. Improve your lifestyle, and decrease anxiety by eating healthy food, taking gentle/moderate exercise and by losing weight if you need to.

My very best wishes to you all 😊

CDreamer profile image
CDreamer in reply toHilly22

So good to read your post Hilly as I well remember your early posts.

Hilly22 profile image
Hilly22 in reply toCDreamer

Hi CD

Your advice has helped me enormously and I’m so grateful. It’s especially helped me through the rollercoaster of the last few months of my mother being very poorly, and particularly the last few days since all her medications were stopped and she was put on palliative medication. I’m off to see her now, taking over from my sister who drove up from Suffolk this morning.

Thank you xx

CDreamer profile image
CDreamer in reply toHilly22

I will hold you in mind during this difficult time of letting go. Remember to take care of yourself & have your needs met as well. X

Hilly22 profile image
Hilly22 in reply toCDreamer

Thank you for your kind words and thoughts CD. It’s all over now. My mother died last night. We spent part of the night with her, playing her beloved Mozart and telling her how very loved she was by her 5 children, 20 grandchildren and 16 great grandchildren. Such a mixture of emotions including relief.

Take care xx

irene75359 profile image
irene75359 in reply toHilly22

So sorry to hear of your loss but totally understand the relief part. Take good care of yourself.

Hilly22 profile image
Hilly22 in reply toirene75359

Thank you so much Irene, it’s like the end of an era for us x

TamlaMotown profile image
TamlaMotown in reply toHilly22

So very very sorry for your loss Hilly. You are in my thoughts 🕯

Hilly22 profile image
Hilly22 in reply toTamlaMotown

Thank you so much Tamla x

Bambi65 profile image
Bambi65 in reply toHilly22

Her passing with yall guiding her to a relax, peacefull and loved atmosphere was such a beautiful gift to you both. So sorry for your loss. May you and your family share in our heartfelt condolences.

Hilly22 profile image
Hilly22 in reply toBambi65

Thank you so much for your comforting words Bambi x

Bambi65 profile image
Bambi65

The first time I ever experience my heart pounding, beating fast, breathless and my chest hurting was 2006, when i lost both my daughter and my first grandchild,. (at that time, I was a single parent of 3 kids) I did not know what this pain was. I remember begging the doctor to make this pain just stop and go away. The counselors told me grief dosent have an ending but easing over time.

That first year was hell, I lived with these horrid symptoms, with very few moments of "normalcy". Eventually the grief did ease up and I began living again and finding joy. I got better and so did my heart rate. ( medical doctor would see me as this was "Not a medical issue") Later on, I found love and married in 2012, like I said I got better.

In 2015 I was to have surgery on my knee. Let me be clear, I hate doctors, hospitals, and surgeons most of all. All the time leading up to surgery date, I went and stayed in panic mode, which was nearly 6 months. This feeling felt familiar, some how. I noticed how bad my chest hurt, fast beating, short breath and was told this was all acute "white coat syndrome". Yeah it felt familiar, but more intense somehow. There is no way to explain how badly this affected me all those months. As the date got closer, I got much worse. Lost 30 pounds during the the last 2 months. Chest pains, HR pounding, Then The day after surgey , while loaded up on Morphine, I told my husband that my chest felt bad, like I had a baby moving inside it. They came in with carts, and wires and I couldnt quite figure out what all the commotion was about. Random sights and sounds followed: She is in AFIB! Who? Me? Like I said I was loaded with morphine. Well, I sure wasnt stressed or worried at all...The doctors said is was due to blood loss from the prolongs surgery (4 hrs instead of 2), so they gave me 2 units. Went home 3 days later. I recovered from both the surgery and the situational AFIB. All better, right?

The following year, another knee surgery (same knee),. The evening before The Day the chest pains doubled me over and unable to breath I was taken to the ER.. Turns out I was in AFIB. I was loaded up with all kinds of drugs trying to get my HR down, and they kept me in there overnight. They had to reschedule the surgery. They contributed it to "pre-sugical stress and anxiety"

Today and for the last 4 years since the last surgery, ive been in and out of AFIB about 2-3x a week. The moral of my story is the worst day of my life started my AFIB and over the years, it found its place in my heart so to speak. Today, I do my best to avoid hospitals, docs, and surgeons. I do like my EP and it took quite a while to believe and trust him. I take anti coagulants, and live out loud, Afib does not and will not slow me down, we travel all over the world, When home, I work and I work hard. I build fences for our yard, installed new wood floors, dug up trees and plants to move them. ride bicycle, When we travel, Afib goes with us, and Im prepared for this creature, that my body has created. I respect it and know that although it feels like its trying to kill me, It will NOT. We live together and try not to piss each other off too much.

Paulbounce profile image
Paulbounce in reply toBambi65

Bambi wrote

...Afib does not and will not slow me down - I respect it and know that although it feels like its trying to kill me, It will NOT...

Well said Bambi ;-)

Paul

Bambi65 profile image
Bambi65 in reply toPaulbounce

Thanks, just another day in paradise...

irene75359 profile image
irene75359 in reply toBambi65

I am amazed at your resilience in the face of your loss and subsequent problems - be well!

Bambi65 profile image
Bambi65 in reply toirene75359

Its life, and I'm gonna live it. Wish you a full life also.

Gilli54 profile image
Gilli54

I told my private consultant two years ago about my anxiety and he said they go hand in hand. Now, many years after my first bout of AFib, I don’t know which one comes first. It’s like a circle. Finding ways of coping with anxiety seems to be sensible. At least then you can feel calmer when you are not in AFib.

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