So often, we receive calls from people saying they had not been told much at first diagnosis and they either come to AF Association phone lines/emails or they find this amazing forum!
We want to create something that's a "one stop shop" for newly diagnosed AF patients. Can you think of one thing you wish you'd been told when you were first diagnosed?
I look forward to reading your replies!
Regards
Rachel - AF Association Patient Services Coordinator
Lifestyle changes !!
Magnesium!
A vague comment from a cardiologist that there was some kind of flutter in my heart....no explanation .About 5 years on i saw another cardiologist who 'thought'i might have Afib and suggested Amioderone! I had to tell him I was being investigated for a thyroid problem. I had done a bit of research by then.So.I would have liked a clearer explanation /diagnosis at the outset.
The impact of emotional, physical and psychological stress on your heart
That it is not curable
That HealthUnlocked AF group existed
That an Electrophysiologist is who I really should have seen in conjunction with a cardiologist.
The link between stomach issues and AF... the possible triggers.
As my Dad had AF... they just lumped me into genetic. Maybe is it, maybe it isn’t but I had to come here to find out about the vagus nerve!
That as a woman I would be less likely to be taken seriously and would have to be very persistent and not give up
The words fussing and exaggerating spring to mind, kelly. Menopausal too - and if you are over 60, old biddy. None of these words were ever uttered to me but often the overall impression implies some of them were lurking. Add to this mix the fact that PAF is so expert at hiding from everyone, except its victim and you can add self doubt to the list of difficulties.
I’m sure men can have problems in getting their point across but traditionally, our society is less trusting of a woman’s point of view - we are brought up to be complaint and helpful, even to our own detriment.
My husband noticed (he thought it was hilarious) that I am usually described as 'pleasant' in consultant's letters to my GP. We are convinced it is a code but not quite sure for what? Or maybe they feel they can't just describe you as 'a lady' without an adjective even if you were rude and uncooperative?
Total lack of initial information in my case. I happened to be in AF when at GP's for a ECG where a nurse told me the diagnosis from the remote hospital was AF. Then sent home, 'you will be alright,' wondering what on earth had I got and what was going to happen. Next day GP sent for me, referred to cardio who prescribed Biso and told me to come back if need be, no further treatment planned. Still no real helpful info. Down to myself to research and come here and discover the existence of EP's and treatments and ask for referral.
To be told I had something wrong with my heart and needed tests scared me silly, to the point that I paid privately for an echo-cardiogram rather than wait for one on the NHS. When first diagnosed, I asked the consultant in A&E about the condition she said I had (AF). I asked what the problems with it were and was told I could have a stroke or the heart could just give up and stop beating!!!
I needed to be told that AF is not generally life threatening and so common, lots of people have it and live to a good age.
I’m not suggesting it is a woman thing, I’m talking about my experience as a woman. I know for a fact that it had an influence on how I was treated and we were asked about what we wish we knew. This is what I wish I had known.
I made this point about five years ago kelly. Women should stop getting made up before going to doctors and actually look like they feel!
I’ve never worn make up in my life 🥴 Listening to what women say regardless of how they look would help.
Amen to that, Kelly!
It would help if the doctors were taught that the emotional component of treating AF patients is actually important, on many levels, starting with having a warm, caring compassionate connection with the doctor!
My husband keeps telling me to stop smiling when I’m talking to the doctor or when I’m in hospital. It doesn’t matter how ill I feel I keep smiling. It’s a good job my doctor has plenty of evidence that my health issues are real. He’s more convinced than I am. I still have times when I think it’s all a figment of my imagination 😀
Me too, my daughter recently warned me not to cry in front of the doctor because he wouldn’t listen to what I’m saying. It made me feel sad to think that even at 21 she has realised that showing emotion to a doctor when discussing health issues means that they won’t take you seriously or listen to what you are saying.
😂😂😂
Try not to be anxious, stay calm, you can learn to live wth P-AF .
I think in general it is widely recognised that women struggle to get a diagnosis especially when it comes to problems with the heart, the age old problem of hormones/hysteria tends to get in the way. That doesn’t mean that it doesn’t happen to men it just means it happens with women. I didn’t write that reply to offend any men or to generalise I was just talking about what I wish I had known. 😊
Hi Kelly.
I hope the HR you mentioned on another thread has sorted itself out. It really was to high. Keep on the ball Kelly if it happens again - seek medical attention asap IMO.
Best,
Paul
Thanks Paul, luckily since my ablation I haven’t had rates that high. Those were the rates I had over 30 years every time I had an episode of SVT.
Take care 😊
All of the above plus some degree of understanding of the sense of absolute panic such a diagnosis can have on someone who thought they were fairly healthy. We should be made aware that worry/anxiety are normal and that our ‘treatment plan’ will help to resolve these issues.
Something I actually was told was worse. You can be cured with something called Cardioversion! I wish! The doctor made it sound like The Golden Bullet, which it isn’t always. I had 3 which didn’t last more than 6 months. Since then I’ve been told it’s something you have to live with. Wish they’d said that could be the situation in the beginning 🤔
checkmypulse wrote
......Total lack of initial information in my case.......
100% agree.
10gingercats wrote
.......A vague comment from a cardiologist that there was some kind of flutter in my heart....no explanation .About 5 years on i saw another cardiologist who 'thought'i might have Afib.........
I`m there. The medical profession do a great job - don`t get me wrong. However the diagnoses seems to vary from one doctor to another. It certainly has with me.
jeanjeannie50 wrote
........When first diagnosed, I asked the consultant in A&E about the condition she said I had (AF). I asked what the problems with it were and was told I could have a stroke or the heart could just give up and stop beating!!!
I needed to be told that AF is not generally life threatening and so common, lots of people have it and live to a good age......
When I was first told I had a-fib I saw 2 different cardiologists. One of them told me I was 7 times more likely to have a heart attack than someone without a-fib. The risk of stroke is the major problem with the condition - not heart attack. I really worried. I think Jeans point 'AF is not generally life threatening' should be made clear to a-fibbers. When you are told you have a problem with your heart you worry - give people a real diagnosis of their condition. Don`t panic people when there`s no need in many cases.
I`ll add one more point of my own. In many ways, family members or friends, worry as much (if not more) than the person with the condition. Sometimes it might be good to 'reassure' the family members too. Just as much as it is to reassure the a-fibber who has the problem. This is likely to help all concerned and could have a knock on, and very positive effect, on the person with a-fib.
To sum up. A-fib causes anxiety for all concerned (it does for me). However my girlfriend worries about it more than I do. Her concern about it bothers her more than me - I always try and tell her it`s not a problem but she always worries. I think help / support for family members, as well as the person concerned, would benefit people.
I`m going to throw one more thing in to the pot. I`ve found I can learn more about a-fib online than I ever had from a doctor. It sounds daft but it`s true. Online forums are a good place to learn for 'newbie a-fibbers'. Not always Facebook but there is good info online.
Best,
Paul
Edit - sorry Rachel I was very long winded with my post. To answer your OP - it`s not going to kill you. Chances are you`ll be OK. Tell that to people when they are told about the condition right away 
Hidden wrote
......The link between stomach issues and AF... the possible triggers......
Just want to add. There is a connection there. An excellent point to make.
Best,
Paul
I wish when I was in PAF I had been told it was inevitable to progress to me being in perminant AF.
The link between the Brain, Vagal nerve and the stomach.
Yes, and that there are fairly simple lifestyle changes that can reduce episodes, such as sleeping on your right side, not eating late at night and not eating too much for dinner.
The truth! I had a hurried 5 mins with flapping bits of paper and mumblings I couldn't understand and confusion about why I was there when it was usually my husband in hospital. I remember the words " medication and may be mechanical means". For what. I got that it was heart failure but what was my heart doing? I wanted someone to sit down next to me and quietly explain what had happened so far and what the immediate plans were. Some weeks later I was seeing the Arrhythmia nurse and the pieces of the jigsaw started to fit but it should have started earlier. I shouldn't have been sent home to continue the care of my homebound husband after just 2 days in hospital. I was in no fit state.
The doom and gloom about AF and its prognoses. That it will always get worse I have a neighbour who is 92 and has had AF for thirty years and her AF is much the same as its always been. The belief that there will never be a cure when people are trying to find one.
It would be great for them to acknowledge the psychological impact of a fib in most ( not all) people. In an ideal world, a psychological resource person to meet with or a support group maybe. I had to figure it all out myself, mostly dealing with the anxiety. This group has helped me a lot but I didn’t know this group existed in the scary beginnings. ( I live in the US)
I'm with you on that, Hoski.
It's so strange to me that there are amazing support programs for only certain conditions, such as cancer. I sure don't begrudge them the programs, but given that AF is becoming more common, it sure would help to have more support built into the treatment. But then the docs would have to admit (?), agree (?) that a holistic approach is important!
That it is not a death sentence and with it under control you can lead a normal life.
I wish my GP had told me about this site. I have always found more help and reassurance from ‘real’ people who have the condition than from medical professionals.
Amongst other very helpful things, I have learned about the influence of the vagus nerve and anxiety through this forum.
The Mind is a big player - anxiety, heightened senses (in the early days) and the Vagus Nerve.
I wish the people in the anticoagulant clinic new more about the anticoagulant I was given apixaban I was told I mustn’t take any supplements like multi vitamins or omega 3 and when I asked what about co enzyme q10 they said what is that but since finding this group there are people that are taking omega3 b vitamins and coenzyme q10 with no problems so I think the staff at the clinic need to be better informed rather than say you mustn’t take anything else I since take magnesium which has helped my afib plus coenzyme q10 which I took for muscle pain due to taking statins, also by saying you can’t take anything else it makes afib even more nerve racking to the patient or maybe I was just unlucky with who I saw that day at the clinic
Hiya...can you please tell me how Magnesium has helped you?....
I seem to be getting less afib attacks and I also suffer with idiopathic peripheral neuropathy which is very painful and I’m hoping it will help that pain but I think you will need to take it for at least 1 month before you can judge for yourself I’ve been taking it for approx 2/3 months but don’t buy magnesium oxide it is useless and really only seems to work as a laxative
When newly diagnosed, I wish I had been given a leaflet directing me to this site. There is a multitude of other sites, some of which terrified me, often with conflicting information. I eventually found the AF site on HU and normality (well, a new normality!) came back to my life and has stayed.
Yes I agree 100%. The people on this site are amazingly helpful with sharing their knowledge, experience and empathy mixed with just the right twist of humor. Love this forum. I too was scared on other sites. Two were AF facebook groups. They were knowledgeable but seemed like every post was drama, bad scary panic ridden stories that got me all wound up. Finally decided I needed to remove myself. Here it is like old ( and young ) friends.
I learned more from this forum than from any of my docs. And I was inspired by a few here to take the bull by the horns in my own care!
That Hospital and GPs surgeries would have leaflets that could explain how to recognise AF and its complications I live in Wales and have yet to see any information in these places yet they have them for other illnesses and conditions. There needs to a lot more information and awareness out there If it had not been for this site I really don't know how I would have done
No BHF leaflets? That's really remiss.
I think AFib is so complicated in its varying types, varying symptoms and effects upon people that its pretty hard to think of a simple message to put across to new patients. I feel that Dr's or well trained medical staff actually need to sit down and explain to people what AFib is and let them know that it is a complicated and varying condition and let them know the basics re. meds, surgical procedures, lifestyle changes, use of magnesium supplements etc. plus possible side effects to treatments. They should also be given a clear treatment plan .
It would be nice if support groups were supported by health trusts as I have found that gaining useful information tends to come from fellow sufferers and YouTube channels as even helpful Dr's/specialist teams don't have the time to devote to giving individualised guidance.
Maybe a basic leaflet about AF and its many forms would be useful plus a leaflet directing people towards this and any other useful forums, useful books and maybe useful you tube channels such as York Cardiologist.
I still feel that AFib needs to be better understood by GP's and by a lot of non EP Cardiologists as I have found that with some cardiologists AFib is not taken seriously at all and the information they provide can be misleading or wrong.
I agree with everything you have said, particularly the last paragraph regarding cardiologists and GPs. I met a cardiologist very recently who said to me that because a holter monitor I had done a couple of years ago came back clear I in fact didn’t have AFib or SVT as there was no evidence of it at all. This is after 30 years of PAF and PSVT, 12 of which I have been medicated with flecainide to control my arrhythmias. 3 months later I was having an ablation for the non existent problem.
😩😩
Makes you wonder what knowledge such a cardiologist had of PAF - indeed if he had ever heard of it. Dreadful.
It is scary particularly in the current medical model where we are pretty powerless to argue on our own or others behalves effectively to receive the support and medical intervention we need in any meaningful way. This is not to damn all Dr's/medical staff as it just appears that the NHS is so overstretched these days that even the best intentioned specialists and GP's will be hampered in providing the service they would like or attaining the additional skills/knowledge they would desire. However, this does not let 'off the hook' the services that tick boxes and underplay medical conditions to meet performance targets that allows them to receive glowing assessments from regulators whilst offering awful services!!!!
I agree absolutely....it's a problem within a problem with very little information.....we on here have AF ..very few of us have exactly the same but we all have similar symptoms and fears....l agree there should be more written advice in the form of a booklet....
We are all so different if you try and do a 'one stop shop' it would have to cover a huge range of age groups and presentations. The doctors I have come in contact with don't seem to 'believe' much in triggers (except the known associations high BP, being overweight, sleep apnoea). It would be useful to include the common triggers mentioned on this site and what life style changes may help. Also the info on the association with NSAIDs.
I was given the BHF atrial fibrillation booklet and that was quite helpful.
If the AFA can up their profile with cardiologists and GPs and produce a fact sheet for newly diagnosed and contact info that would be good. I've mentioned this forum to my arrhythmia team and they don't appear to have heard about it.
I am thankful I found you.
thanks
Amanda
This is really interesting Amanda, I have said the very same thing to my husband regarding the AFA fostering better links with GPs and cardiologists. My EP mentioned he had connections with arrhythmia alliance but didn’t seem familiar with AFA or the forum. It took years for me to find my way here, my story might have been very different if I had been able to access support and advice in the early days.
True, and I agree with your issues over young women being dismissed as imagining it, I've seen the attitude from colleagues. I shall do my best to counter it when I go back to work
😉
That my asthma would have me fighting for my life every time I have asthma attack and ending up on the ventilator.
For basic info the BHF leaflet (which I got myself from the drs surgery) is hard to beat but it doesn't mention that AF affects everybody slightly differently so no one can 'understand' your symptoms, that it can have profound psychological effects which are partly at least caused physically by the AF as well as by the implications for your future. In a way I was fortunate because several members of my family had AF so it wasn't so much of an unknown but that didn't make the symptoms any less uncomfortable and scary. I also think that it should be viewed as (for most people) a chronic condition which has to be managed as simply as possible. As someone else said you should be told straight away it is incurable and I think discouraged from focusing all your attention on it, searching for triggers, taking numerous supplements etc.
This would be my ideal AF treatment experience.
I'd be greeted by an AF "coach" who would educate me about the condition and treatment options. I'd learn that the cardios & EPs are highly skilled and we definitely need them and that they view AF from a very specific and at times very narrow mindset and to keep this in mind.
There'd be a warm and welcoming in-person support group facilitated by a nurse or therapist who understands AF and treatment options well and who would provide education and support around the psychological and emotional challenges of dealing with AF.
I'd be directed to this forum for support, as well as to Dr. Gupta's videos.
If I wanted to, I'd be directed to a naturopath or functional medicine doc to look into underlying issues that could be triggering AF. This would include having a sleep study.
I'd be educated about the micronutrients that nourish the heart cells - magnesium, potassium, taurine, etc.
I'd be told that AF can feel incredibly random, yet if I pay attention to certain lifestyle choices and my diet, I can greatly reduce a lot of triggers.
Either in the support group or in separate short classes, suggestions for lifestyle changes would be given and we'd be able to support each other in making those changes. Cooking classes, yoga, meditation classes...wouldn't that be great?
Welcome to Disneyland! I don't mean that rudely at all, just that it is a delightful fantasy. I would love to have a doctor's view on AF (not an EP because they take it seriously). I suspect they regard lone AF as a fairly benign nuisance only slightly above IBS in the rating scale. Once they have dealt with stroke risk and high HR as best they can they would be more concerned health-wise about comorbidities if present eg high BP, alcohol abuse, obesity, valve disease etc. My cardiologist said 'You can come into A&E if you feel bad, we don't mind' suggesting he was pretty unconcerned. My GP's concern was that a prolonged high rate might lead to dementia, something not often mentioned. What I would really like is for GPs to be well informed about AF and the NHS protocol for management - yes, there is one but you wouldn't know it! I guess with the US system there can't be one?
The first part of your vision could and should be part of the 'medical/hospital' experience but I think there might be a place for a voluntary group covering the second part. However, I know four other people with AF and none of them have shown the slightest interest in discussing AF, so it may be that we on this forum are actually in the minority in wanting to explore the AF experience fully?
Anyway, I love the proposal Nella 👏!
Thanks, Buffafly. By the way, one of the things I get a kick out of at this forum is all the interesting names! 😂
All of the things I mentioned are things I've pieced together for myself, over time. What a lot of anguish and wasted time it would have saved me, not to mention AF episodes, if I'd been properly educated from the get go.
Here's one resource that's been a godsend. People have been generous in sharing here, so I like to share good stuff when I can.
When I was first diagnosed, a friend introduced me to Dr. Lynn Rogers. She's American, though lives in Mexico, and is a psychologist with a specialty in coaching people with chronic, or as she calls them, "life-altering" illnesses. I've spoken with her on the phone many times and have found her to be incredibly helpful.
She has led support groups for cancer patients in a hospital setting, along with seeing private clients for many years. She's great with the practical stuff, like communicating with docs, what questions to ask, etc., and she's very supportive and encouraging, with a great sense of humor.
It's great to have someone to talk to who really gets it. She offers a free initial consultation. I'm not selling anything or getting a commission, just sharing a helpful resource.
It would be marvellous - hope someone picks this up!!
Some of it's really not so far-fetched! 
It's really about blending/merging 2 approaches to reality - the highly specialized vs. the holistic. Some docs are doing that, though they're in the minority at this point.
I mentioned this cardiologist in another post a few weeks ago. I'm not here to sell anything, but I find his approach, blending the MD and Naturopathic approaches to be exciting. His son is the naturopath I see.
Here's Dr. Stephen Sinatra, an American cardiologist (nutritionist & therapist, too), talking about the MD/ND connection:
youtube.com/watch?v=VRI17Lp...
He does a lot of education with doctors about this approach. I'm curious to hear from other here what you think about it! I find it very exciting.
Maybe Dr. John Mandrola has been mentioned at the forum (?). He's an American EP whose approach I like, too.
Here's his "13 Things to Know about AF:"
Nella that sounds amazing and why shouldn't we get this wonderful treatment.....l read you mentioned Magnesium and Potassium and l wondered if it's beneficial for us with AF to take....
Thanks, Rambingross. I think that you can probably search for my posts; if so, you can find a few in which I've written a bunch about the research I discovered from afibbers.org, an American AF forum. There is a lot of info there on the micronutrients.
My experience on a couple of American AF forums is that there is a lot of fear and judgment rolling around that was quite off-putting for me. But one thing I have found quite useful at afibbers.org is the extensive research that has been compiled by members. Over the years, various members have done loads of research and have experimented and been successful in greatly reducing or eliminating episodes through the use of micronutrients. So I dug into their research. That's how I discovered Dr. Sinatra and his amazing book, Metabolic Cardiology. I wrote about it in a post a few weeks ago.
It's how I discovered his son, the naturopath who happens to be about 30 minutes away from me.
Here is the compilation of research from afibbers.org. You can read to your heart's content about Magnesium, Potassium, and the other micronutrients. 😍
They sure have helped me!
afibbers.org/resources/inde...
Thank you Nella...plenty to go at...
My pleasure! It's well worth it.
When I started taking the micronutrients, it was the first time that I was able to consistently think clearly, have energy in general, have less intense & frequent episodes, and not have the big emotional dips. They have made a big difference.
I’m sure Rachel won’t mind me saying this but we are hoping to put together another “patient driven” factsheet and your responses have been fantastic and very helpful. After Easter, BobD is going to post again and we hope that all you “Newbies” out there will add your comments. We know from previous experience that producing and publishing these factsheets takes time but this has been a great start to the process.....
I was diagnosed in 1992 while in A&E for double pneumonia. I had seen my GP about strange heartbeats I was getting 2 years previous. I was told "Do not worry about it" I was told then of the 2 hospitals I could go to for an Ablation but it had a 85% failure rate then! It was Warfarin that was my biggest Lifestyle shock due to a very physical job and my Karate which was Semi contact.
Overall I found my treatment was very well explained however I am not afraid to ask questions which I feel must be done to get a better picture of what is going on?
I am not just an AF sufferer and have complicated multiple medical conditions that have not helped my AF path. So not a benchmark?
That it won’t kill me. Thought it was a death sentence until I came on here!
What would you do?
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