Going through my email IN box, I came across a link to a post where we all talked quite openly about the effect that AF has had on us and the views/reactions of friends and family. I became absorbed with reading it all again and am putting the link to it here for others to read or re-read should they so wish.
So many posts in the link below from members who spoke so deeply and honestly regarding AF. We don't seem to have such in depth chats like this now.
healthunlocked.com/afassoci...
Jean
No Jean, you are right, we don’t have those in depth chats now. That is a shame. I have only quickly scrolled through and will read fully later. It was nice seeing some old familiar names and made me wonder what had happened to them. I hope they are well and Afib free.
Thanks for posting and will be good to read. x
Hi Frances
Yes, I quickly read some of them and thought how lovely it was that people had been so honest and open in their replies. A few that replied that didn't have their names were from Hoski, do you remember her? Yes, it was lovely to see all the old names there.
Jean
Hi Jean, I remember Hoski, she was lovely & I always wondered why she left the forum.
I always wondered that too, she was such a popular person on here and I can only guess that she suddenly died.
😔
What a great thread - thanks for sharing Jean. It takes courage to open up such a discussion and you did so with great tact and honesty. It’s obvious from the responses that exploring the emotional and psychological impact of AF together can be hugely helpful .
Yes, BobD said in a post said how he'd always been aware of mental health and it's effect on people with AF. Then lo and behold I happened across this old post.
Jean
Hi again
I read some of the commentary and I dont think much has changed when reading the anxiety, stress , depression on this forum about AF. What is true is organized cardiology / EP are in my humble opinion not receptive to new ideas outside their specialty. I will refrain from explaining why I make that statement butvanyone interested can read my BIO.
‘Hug your heart and someone who needs a hug’
Hugheart
I love your phrase, 'Hug your heart and someone who needs a hug'. We had a lady on this forum many years ago who would put her hand gently over her heart when in AF and talk to it, saying everything was ok. She claimed it calmed her heart down.
Jean
Thank u for commenting about my phrase. It is meant to be kind to your heart by trying one’s best to eliminate unhealthy lifestyles and becoming more proactive seeking help and not allowing negative emotions become overwhelming. My BIO explains the latter.
Hugheart
you are so about the cardiology although I will tell you there are new doctors younger doctors out there that are embracing quality of life and thinking outside the box. I was lucky enough to find one. In fact I have found two and will be meeting with the new one in a few more weeks, thank heavens.
the doctor that changed my life for the better unfortunately has moved away because of an incredible position given to him so I am happy for him. He is barely. 40 I believe. he was not always a favorite at the hospital because he wouldn’t just use the old that I known to be money maker not really for the patient because we know there’s no cure and they are just other Band-Aids. If mine went by their way of thinking, I would not be here now because there wasn’t even an old way for me. Here I am because of a doctor that wouldn’t give up. He told I wasn’t going anywhere so far he has done well. I liked my other doctor in Florida, but I have a feeling for the most used the same of things. Ablations and cardioversions seem to be popular. I did like that. He started with meds. He less invasive to start off and take steps. If he had been the one to run into what my in I don’t exactly know what he would’ve done but as much as I like him, I don’t think it would’ve been all that incredible compared to what was done for
He is in Florida now and I just saw some pictures, etc. of one of the things he is working on with students. Besides being the director of the he also is still which is wonderful. I just saw a picture of a pacemaker. They are working on there about the size of a triple AAA battery without wires. I know they have been wireless, etc. but this is very different from what we have seen I think. Quality of life seems to be the motto with these doctors. If we are going to be forced to barely have a life it would be hard to fight and keep going on. My procedures with him made me forget I even had a fib most of the time. I also have atypical flutter and heart failure. What they have managed to do for me I feel normal most of the time.
My inheritance for my kids (I hope!) will be to be wary of consulting regular medics. Yes, they are great in emergencies but for more holistic long term good health you need to look further.
I used to be called ‘black crow’ on here and I looked for my comments- I am called ‘hidden’ on that thread JJ!
I was quite candid back then…. I spose as the years roll on, you kinda get fed up talking about AF.
I still think of it as ‘Stupid AF’ 😃
True at times you do get a bit fed up talking about AF, but my heart still goes out to those who have frightening attacks. I think it's more worrying for people who live on their own too.
The forum still helps immeasurably for new diagnoses… loads of people on here helped me. Still do when I have a flip!
Why did you get fed up talking about Afib? Thanks.
I just like to forget I have it really.
High Butterfly. So sorry you feel like this all the time. I too am anxious and have been a lot worse since my ohs which was fifteen years ago. Have you thought about councelling? I have this on a weekly basis and if you could find a counsellor you feel comfortable with I think it would be a great help to you. But remember it takes time and is not a quick fix. You can feel better .I know it’s hard but we dont want to spend the rest of our lives like this. I don’t have friends who I feel I can confide in. I now live in France and made the decision to move because my husband wanted to live here and I can’t believe I made the move. It’s hard for me, being so anxious. That’s why I have councelling. Do you anything to help, yoga. Meditation etc and have you family and friends you can confide in? Please don’t hesitate to contact me if you want to talk. Just to have a rant or a cry. I totally understand how you feel. Please take care of yourself. X
I know how you feel Butterfly, my mum died aged 60 of cancer she lasted 5 months after being diagnosed. I couldn't help but wonder if I'd live past that age. I'm now 74 and have minor ailments. After many years of scary fast AF attacks, I'm now in constant but with a bearable fluctuating rate of between 60-90bpm. It still makes me a little tired but I'd rather be this way .
When I feel a little down because of my ailments, I think of other people with far worse conditions. For instance those with cancer, Parkinson's, people who have had a stroke and can't move or eat, those who have lost limbs, their sight or hearing. How lucky are we to have a condition that is not apparent to anyone else.
Once when a teenager I was working in a pharmacy when a man came in and he had almost half of his head and face missing. I went dizzy with shock, not since that day have I ever seen anything so dreadful.
You are not a failure, you didn't bring any of the conditions you have onto yourself. As we get older, we can decline in health, nature appears to want to slow us down.
You are so lucky to have a companion in life who cares about you. A lot of forum members here live on their own. Why not sit and make a list of all your blessings and concentrate on them.
Sending you a big healing hug.
Jean
I do think the mental health aspect of a diagnosis is perhaps the worst part, difficult to make plans because you never know when it may strike, too expensive to get travel insurance so foreign holidays are out and that makes me feel guilty because my husband would love to travel more. Waited our whole lives to be work and child free and now can't even have a nice holiday or visit our son who lives abroad. For me , the fear of hospitals is strong too and dread the trip to A and E if I don't self convert. No doctor covers that aspect, they are only interested in physical symptoms.
That's so true what you say Lupaal. This 'prescribe you a pill to try' and then send you off not to be seen by a heart specialist again for many months is not the answer. Surely they should want feedback on how your heart is behaving after a week or two.
I too had envisaged a nice retirement going out with walking groups and growing my own veg. It wasn't possible though and waiting in A&E is enough to keep your AF going.
Jean
Yes, mine was first diagnosed after a bout of covid, at the time you weren't allowed anyone with you. I had no idea when the ambulance cared me off if I'd get home again as thought I was having a heart attack, husband wasn't allowed to come with me etc. I am still very nervous of going anywhere alone, every twinge you wonder what's wrong this time. Also have hypothyroidism and a few minor complaints. Life is scary and exhausting at times. All the family just think you're back to normal with all the pills but it doesn't work like that and I've never seen a cardiologist in person because it was all phone calls and letters when I was diagnosed.
thanks for sharing that thread! As one of the newer members on this forum, I’ve been so impressed by the honesty and care offered, which have really helped me get my head around the diagnosis as well as suggesting strategies to help cope. It’s reassuring just to know you are all there!
Yes, we're always here to help if we can. These days I find some of the posters are so technical when giving their heart results I have no idea what they are talking about. How times have changed.
Jean
This was before I found out about this site, so will be interesting to read all the 159 replies when I have time. PAFib caused me a lot of anxiety. Being on here helped me and also the advice given to me re ablation, helped me to go ahead with it. So glad this site exists. Helpful people and advice and you realise you are not on your own.
It's a great site isn't it and I've learnt so much from it too. Also it's comforting to hear that other people have experienced the same heart complications as we have.
Jean
It is good to know you’re not on your own with this. My neighbour has just had her first episode of AFib. She is an avid cyclist and goes out for 50 mile rides, regularly and developed this after her last cycle ride. She’s hoping it’s a one off., but we all know on here, it probably won’t be. I told her to talk to me if she needs to, if it comes back. I shall tell her about this site, if she gets another episode. I hope not, I wouldn't wish AFib on my worst enemy.!!
Personally I have tried and failed to understand the root cause of the condition all this time, this frustrates me. There are so many factors at play, not least the hearts own recovery systems, that make it almost impossible to work it out. Certainly, having been relatively free of the symptoms since my ablation 6 years ago has given me a different perspective. We tend to think the condition is far more serious than it is when we suffering the symptoms and understandably so as the symptoms are horrendous and will effect your mind and that of your family. Also the condition can deteriorate to a serious condition if left unchecked so getting the right treatment, or effective treatment is essential and different for all of us. Finding that after a traumatic blanking priod that I am now able to live a normal (nearly) life was a great weight lifted and as I have said in earlier posts far better than winning a Euromillions Jackpot. I will never forget how scary and dibilitating the condition is. Good news for those joining this forum is that there are an awful lot of people on this site that have had the condition for a long time and are still here in their 80s and 90s so take "heart" (no pun) in the fact that your condition can be fixed or at least improved sufficiently to live a near normal life, but it can take time.
Wise words from you, thank you.
No give me the Euro millions and I'll fly out to Japan and get cured like Saulgar who's a member of this forum. I've had 3 RF ablations and been told that I wont be offered any more. Was it an RF ablation that cured you?
Jean
Yes but not totally cured, I still have MAT, which raises its head occasionally but very manageable and never lasts long and not really debilitating like before. I think the success is more to do with the EP hitting the spot rather than anything else, unless they have something new in Japan! The skill of the EP can make all the difference.
Thank you for sharing Jeanjeannie50, it is so true how having AF can impact our entire lives, so it is important to seek the help and support we desire.
We are hosting an online coffee morning on Monday 18 May 'Living with an Arrhythmia with Advice on Managing Mental Health', so please feel free to register and join us. To register online, please visit: heartrhythmalliance.org/afa... or contact the Patient Services Team via our dedicated Patient Helpline: +44 (0)1789 867502
Kind regards
TracyAdmin
Hi JeanThis is my first response on this forum of which I find so helpful in helping me cope with my heart conditions.
The post you have just shared has made great deal of sense to me.
The fact that our heart condition can have a massive impact on our mental health sometimes can go under the radar so to speak.
What great post ,I've been reading it thoroughly and found so many similarities with how I'm suffering physically & mentally.
Thank you
Hi Penneyforthem
I love it when we have our deep talks on this forum. We can sometimes think when seeing a post someone has put on that also relates to us, thank goodness I'm not the only one who thinks/or gets that. It can re-assure us that we are not alone with what AF deals out when it strikes.
Jean
Wow - Jean thank you and all the others on here who have been involved with this for so long and have helped so many- me included. I do believe that this needs to be talked about openly and the way this affects mental health which for me was probably quite mild but I’m very conscious I backed away from life at various points almost subconsciously as I have a great ability to adapt but that gift holds a downside and results in you not fully realising how bad you have become over a period of time- Many thanks from me to you and many others here - you’re openness and good sense is truly priceless 👍
Thank you for your kind words MWIC.
All that I know has been learnt mostly from others on this forum and my own experiences with AF. I came onto this site just before my second ablation in 2013.
I did go on to the previous Yahoo AF site but a post on there at that time made me think that it wasn't for me. It wouldn't be appropriate to talk about it on here now either.
I do like it when we have our deep conversations on this forum, it helps us understand what others are going through re this hateful AF. I hope that through our talks we will one day hit on the cause as to why some get it and others don't.
Jean
Excellent post Jean.
Thank you Meadfoot
It's nice when we dig a little deeper and find that other peoples posts, on this forum re AF, make us realise that we are not alone in what we are experiencing mentally and physically.
I remember only too well the nights my heart felt like a large flip flopping fish in my chest. I honestly used to think that I'd be found dead next morning. Here I am though 20 years on from my first attack and still very much alive. I did all that worrying for nothing. My constant AF is now between 60-90bpm which is fine, but I will never forget the fear I felt when having bad attacks.
Hope all is well with you now.
Jean
I do remember 15 years or so ago Jean when I had my first awful experiences with AF and found this site how comforting and reassuring it was to hear yours and other people were feeling the same as I did. I still read the posts and keep in touch and help where I can and if I hadn't had all the good help I have had I wouldn't be AF free now.
Like so many others, I received no counseling concerning afib's threat to my health and life.
The first 3 times it hit, I went to the ER, assuming it was good to be there if my heart stopped. On one occasion, the over-worked ER doctor got irritated because I couldn't decide whether I should have cardioversion. (My doctorate is in music, not cardiology!)
Another time an ER doctor came in and said rudely, "Why are you here?"
I finally figured it out when they sent a very nice doctor in the 3rd time who sat by my bed and talked for a good 20 minutes! She had nothing to say about afib, but was very interested in my life in general. How nice! I realized later that she was a psychologist there to diagnose "factitious disorder". I quit going to the hospital with my afib! All I needed was the reassurance that, barring symptoms such as chest pain, dizziness and breathing difficulty, I was better off at home.
Clarifying, supportive counseling would be nice to mitigate some of the fear and anxiety we get when first dealing with afib. Maybe they will figure that out, soon. In the meantime, Jeanjeannie, you should put together the "New Patient's Guide to Afib", posted regularly on the forum. This is a great start!
Oh dear, sounds like you came close to being locked up!
Experts who haven't experienced AF have no idea whatsoever what it's like to have that condition. I think for anyone to do counselling on any subject they should have experienced it themselves.
Jean
...like going to unmarried clergy for marriage counseling!
Thank you for sharing this!
Yes it does get to me sometimes.The frustration of not knowing if you will feel up to doing something if you promise to, that you and others think that you are being lazy. The feeling that things will only get worse. We read that you don't die of Afib, but my brother's death certificate lists it as a contributing factor. That although my continuous Afib doesn't seem to be as bad as it is for people when it comes and goes, it seems that it will only lead to heart failure and or cognitive problems mild or serious strokes (my brother had his stroke while driving). Yes sometimes it all gets me down. I can try and be positive about it, and sometimes that works, but sometimes that just seems all a bit Polly Anna ish. Yes, I've got to change my attitude to life and my expectations, but the unreliability of the ups and downs I think is the most difficult to take. How do I explain that to people around me who have problems and lives of their own to get on with?
Cheers CM
I don’t mean to sound like a miserable old soul, but I don’t really have anywhere to share my thoughts on my cardiac issues because they’re so complex. I’m an avid researcher and active on various forums, including Facebook, but I’ve never come across anyone with the same condition. AF is probably the least of my concerns—I rarely have it—but I still appreciate this forum for what I learn about atrial function in general.
My husband is incredibly supportive and caring, though he doesn’t fully understand it either. But when I’m feeling down, I know I can always turn to him, and for that, I’m grateful. My periods of being down are not very frequent thankfully. I can’t imagine what it must be like to be anxious and have no one to chat to. My cardiologist is wonderful and I wouldn’t swap him for the world. I travel more than 270km in a round trip, multiple times a year (twice already this year) just to see him.
This forum holds great value to many people. I wish the BHF one was as well run and filled with knowledgeable, caring and interesting people like this one. It’s a wasted resource sadly for many of us. Keep up the great discussions, keep the supportive shoulders open and every one of you should acknowledge you create a safe space for people to learn, talk and sometimes even have a laugh.
Having had the fear of PAF hanging over me for well over 30 years.
Throughout that time my dear Wife has been there for me at every twist and turn bless her.
I know that my suffering has really affected her really badly as so often watching on helplessly is so very stressful.
My journey would have been so much harder had she not been there for me.
As far as other family members are concerned I would say they really do not fully understand.
Thanks for the repost jeanjeannie50
Pete
How lucky you are you Pete to have such an understanding and caring wife. I find my family no longer want to hear about my AF. My youngest daughter suggested that I come off this forum and do my best to forget about my heart.
Lovely to hear from you.
Jean
Whatever you do please do not leave the forum.
Our community are here for each other.
I don’t think anyone can understand what we go through or have gone through.
Pete
Thanks for sharing that thread! Since diagnosis last Nov. and being in persistent fast afib despite 10mg bisoprolol and digoxin until an electrical cardioversion mid Feb. that lasted 5 days (and in bradycardia all that time), and then after a week converted by taking flecainide but again in bradycardia despite only taking 1.25mg bisoprolol, I seem to live in fear. Fear that AF will come back (and what do I then do), and fear that my heart is beating too slow… I had a folllow up ecg this week and the cardio nurse told me I cannot live in a glassbox, which is true but hard to dare to try to live normally, scared exercise will set it off, but know how important it is…. Fear, fear, fear and not good for mental health.
Hi Purplekatt
You are in the initial stages of AF when it does all appear to you as very worrying. Though quite often when AF first starts the attacks are usually widely spaced. Are yours like that or are your attacks coming more often?
I've had AF for about 20 years and have learnt so much in that time. Back at the start I would wake in the night and have the most awful attacks of AF, it would feel like I had a big floppy fish in my chest. I was convinced I would be found dead next morning.
So what have I learnt over those 20 years.
The first thing is that anxiety almost feeds AF, so the more you worry the worse the attack will be. There is also nothing to worry about as AF is most unlikely to kill you. How I wish someone had told me that.
Changing your diet to one that avoids artificial sweeteners and additives can really help . Alcohol is best avoided as that too can trigger AF. Be sure to drink water as dehydration can kick an attack off.
When an attack starts do all that you can to take your mind off of it. Watch tv, read a book, practise deep breathing with your eyes closed, or ask a friend to come and visit.
Supplementing with Magnesium can help reduce the severity of AF in some people. I take Magnesium Glycinate.
My symptoms are minor now and although in constant AF my heart rate stays between 60-90bpm. At that rate I can lead a fairly normal life.
What I think helped me the most was to stop worrying about AF. Not easy to do when you first start having attacks but hopefully you will eventually come the point where you think you can't be bothered to give it any attention.
If you don't have something that you can record your heart rate with then I would suggest that you consider buying a BP (blood pressure) machine that also records if you have AF.
This forum has helped me so much over the years, so I would recommend that you keep coming on here and gradually learn all about AF as I have.
Feel free to ask any questions you may have. We always say that there is no such thing as a daft one.
Stop worrying about having another attack, come to this forum and tell us if you do and we will do our best to see you through it and advise on what you should do.
Jean
Bless you, no I'm sure you don't feel lucky with your heart failure. Retaining water sounds horrible. I wonder how many other members here have that too. I have to admit I thought retaining water was cured by taking a diuretic pill. It may be a good idea to write a post on the forum and make other members aware of what AF caused heart failure can lead to. Yes, it's a subject everyone needs to be made aware of.
Jean
Hi
That was before my time on the forum.
Reading a little through the first few I wonder why you wish it to be a topic again.
As I feel those who wish to openly feel that they want to talk about how AF makes them feel within their mental health, I feel well express themselves.
I scrim over these posts as I still feel 'lucky' that the AF due to undiagnosed Thyroid Cancer was highlighted by an Embollic Stroke - mostly 'out of the blue'.
My first 1 year struggling with 'no stroke follow up' and dealing with Metopolol which I expressed NO to having it prescribed in hospital.
AF was immediately diagnosed as Rapid and Persistent.
Eventually I demanded a heart specialist who changed the beta blocker to Bisoprolol. She said a better beta blocker for AFers.
But the 186 avg heart rate of 186 was still uncontrolled at 156.
Left there I was advised to see a reknown excellent Cardiologist who immediately added a CCB Calcium Channel Blocker.
The above shows that instant med to control heart rate with AF is so important. The Endocrinologist - the doctor on the stroke ward of us, 4 stroke patients should be more astute given that both a BB and a CCB should have been trialled.
At ! year 4 months the 24hr Heart Monitor showed 186avg day H/Rate and 2 second pauses at night.
Now with Bisoprolol completely stopped, H/Rate Day avg is 80s. Well controlled.
Throughout 3 x 24hr H/Monitors my Night H/Rate is low at 47bpm without pauses. Being Persistent I do not have the irregular start and stop and apart from heart damage which saps my energy level, I have to be glad to still be alive.
I would sympathize with all side effects of AF. As I have structural heart damage I cannot have the cardio procedures but Diltiazem 120mg CD is ideal for me. Bisoprolol I dropped as my BP dropped low.
Strive to take the least dose of your med and carefully consider with informed infrmation the best way forward for you. Remember we are all different.
Don't despair. Your diagnosis of AF helps you to move forward.
Take care - all things in moderation reminder.
cheri JOY. 76. (NZ)
Why did I wish to open that topic again? Perhaps you have never had a really bad AF attack where you think you may die as your heart is jumping in your chest and you feel so dreadful, particularly in the middle of the night. Many like me live on their own and we don't have your nursing experience.
The reason I referenced my old post was so that members of this forum could see that others feel fear as bad as they do when having a particularly nasty AF attack.
Jean
Hi
I see that I don't fit your profile.
But I did have 24 hours of pain at beginnings of all period pain until a specialist put me on a prescribed course of a particular which I needed to get into my blood ststem before it arrived.
I believe because my AF is persistent the starting and turning off of AF for me is not an issue.
I can imagine the state of turning on and off very terrifying unless a solution is found for each one of you, Jeannie.
cheri jOY
AF and Dementia linked ? ( dr Sanjay report) 
Invitation to Surrey ASG Zoom meeting Wednesday 5th May 6.30pm
Link between AT and adrenaline
Gut Health, antibiotics and herbicides
