Hi Everyone , I hope you are all keeping well & safe in these strange times we are living in...
From the heading, I think my question is clear & I would like to hear how others feel and think.. but to expand a little..
I was diagnosed eight years ago & have been on medication since, reluctantly at first but then I was so very frightened with the worst case scenario’s I was given, & well to be honest I have pretty much stayed in that mind set.
I so wish it was otherwise of course, and I do try, anyway this morning I was chatting with my husband and he (and I don’t know how we got onto the subject) , said pretty much after the first few months he could sense a change in me, mainly being I almost always appear to be moody, up and down, not having an interest in things like I used, not wanting to go anywhere, do anything etc... which I realise is true.
So, is it just me or is anyone else having these issues, and if so, how do you cope?
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sugaredalmonds
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I think a diaganosis of AF makes us all scared and unless you find the right strategies it is all too easy to become introvert, almost agraphobic and focus entirely on the condition. For many years I have been urging the medical profession to understand and treat the phsycological impact that AF has on many people but it is rare to find a doctor who understands.
This is nothing to do with medication although it can't be denied that many drugs can have an almost worse affect on some people than what they are trying to treat. We all have different levels of acceptance and ability to cope and even after 16 years there are " black dog days" when I suffer. The first thing to do is to accept that life has changed, just as it has for us all since COVID arrived and adjust our expectations. Do things you need to do on the days you feel great and don't beat yourself up when you need a down time day.
Above whilst AF may be in your life don't let it be all of your life.
I can truly understand where you are coming from and how this condition makes you feel. When I am having an episode. I feel an overwhelming desire to get home. Somehow I feel better equipped to handle it from the comfort of my own home. I am coping, just as all of us are. Bob D in my opinion is spot on with his advice and probably the most knowledgeable on this subject and it's complexities. When I see a question that interest me. I always seek out his response. That said, sometimes it's enough to simply validate your feelings. I certainly understand how you feel because I have gone through the same thought process as you explained. AF while you are having a episode can be a powerful thing and unless you have it. I don't think anyone can really understand. That is why this forum is such a nice place to be. We all understand!!!
I think you are one of many who really do not know or understand how they are going to cope with the current situation and unfortunately there are NO easy answers. No matter how hard we may try, it seems inevitable that we will all be faced with challenges until the current situation improves (which it will).
Dealing with AF on its own can be bad enough for some, but add everything else that going on currently and the effects that is having on our ability to get the health care we often need at the time we need it and it’s hardly surprising that anxiety can hit us big time. What I try to do to keep things in perspective is to play the numbers game. We have followed the advice given on hygiene and social distancing and do everything we can to keep ourselves safe. We are lucky in that being retired and having no immediate family, we are not faced with the same dilemmas as those who work and have families. So far, apart from one Doctor, I don’t think we know anyone who has had Coronavirus but we are very much aware that can change.
That said, my wife has said she had seen changes in me, and not necessarily for the better so I guess what they say is true, we are all in this together and together we will see better times.......sorry for rambling!
Thank you too, again most appreciated, we personally don’t know anyone either that has been unfortunate enough to catch the virus, but without doubt the fear of it has definitely made my fears & frustrations with PAF much more of a struggle..
I had COVID - I have had PAF for 15 years and a far more serious autoimmune condition for which I take immune suppressants so I was told if I caught the virus I would be unlikely to survive. I came through, not without a few scars or a few AF episodes but since the infection I have been a LOT more outgoing. I realise now that the fear of catching the virus limited me far more than I realised.
What’s more I’m feeling better than I have been for some years - my neurologist is mystified and jokingly - suggested I catch COVID again - who knows I might be cured?! We laughed at that but there was a certain amount of truth in it as once you come face to face with something the monster really does diminish.
Please know that the fear of something happening is far more toxic than the condition or the treatments. Come to grips with that and you will cope and start to enjoy life again.
AF brings uncertainty, that makes us go to ‘what ifs?’ What if questions raise our anxiety - so we play it safe - stay in - hole up - go inside ourselves. That’s another type of dis-ease and one which we need to manage and you can but often need guidance and strategies and learn what works for you. Some people are much more comfortable with uncertainty than others - I guess I’m one of those people. If you feel secure in yourself and your ability to cope in any circumstance you will cope and get on with living. If you have never had to face adversity and unknowns and don’t feel secure within yourself - you may struggle.
Life is uncertain - but quite exhilarating! There are 2 sides to everything, including anxiety = exhilaration.
Don't want to be negative on this answer but i can only speak from my Personal Experience, for me AF has totally changed my life and not for the better. I have had it a lot less than most people on this great forum, but my wife noted major mood swings with my AF, i mean its must be one of the most frustrating conditions to have, you can have a great few months than out of no where bang, that's what i can't get my head round, but since my ablation 10 months ago QOL has improved which i'am grateful for but just trying to overcome these latest hurdles are very challenging.
I do my breathing every morning, use essential oils, eat clean, drink loads of water try to get enough exercise, try to get 8 plus hours sleep every night, even doing all these things when i get a bad run of skipped beats/ectopics my Anxiety gets bad
100% Agree with you, i was having a good run for 3 months than last week got the worst run of ectopics for a whole week they were dreadful, this week they have calmed down a bit, i just don't know where they come from how they happen does Anxiety make them worse? why have the gone a bit better this week? so many questions, how bad are your ectopics? i'm getting a 7 day holter monitor put on tomorrow this should have happened months ago but COVID-19 kicked in
I share your feelings, the sudden runs of ectopics post ablation are a new experience for me as before the procedure I'd never had them. As Bob commented the medical profession seem either oblivious or ignorant regarding the after effects of having an ablation and my GP just smiles politely and refers me to my cardiologist. The feelings of anxiety are difficult to ignore during an episode but in my case knowing it will pass is a big help and so I try to mentally block it out by reading or watching something absorbing on the TV. I don't have any idea of the long term path for me and face a possible second ablation but I'll try my hardest to remain positive and enjoy the days and weeks where I'm feeing normal. Good luck on your personal journey 😊
Hard to say as its random but I've been having an AF episode probably once a fortnight for the last 2 months and the ectopics were something I'd never experienced before so assumed it was AF coming on. I'd say maybe runs of a few minutes to a few hours once a week which are generally bearable but uncomfortable. From what I've read on here I'm relatively lucky as many people suffer much worse than I but it's still a mentally draining experience and something I've still not totally learned to live with
Have you tried a magnesium supplement? I have very few ectopics and they nearly always precede an afib attack but I did used to suffer from attacks of anxiety ( even before afib reared it's ugly head) . Since I have been taking 100mg magnesium taurate 3 times a day they have gone.
In truth probably not that many especially compared to other people in the forum telling of thousands. They just get on my nerves when it goes on for a few hours because I hate the anxiety that goes with them. They wake me up at night sometimes & in the past I could have a panic attack but now I can ignore them more.
I was told by a cardiologist to treat them as an itch that I couldn't reach...just a nuisance. Easier said than done!
I think over maybe 5 years before diagnosis I possibly had a couple of small episodes lasting 20 - 30 mins that just stopped by themselves. In A&E I had been lying flat & they sent me for a chest xray the nurse sat me up quite abruptly & I went back into nsr
I don't know which medication you are taking for your AF, but beta blockers suppress dopamine (among other things). And that's one of our our "feel good" neurotransmitters. I only take medication if I am having and AF episode. I don't take it daily. I take metoprolol when needed. A beta blocker. I become profoundly and swiftly depressed, feel like I could burst into tears. It's not fear of AF or anything. I know myself quite well and I don't respond that way to health issues. It is the metoprolol rapidly inducing depression by suppressing dopamine. I have not had to use it often. And am actively looking at other approaches to controlling/preventing the AF (diet, supplements, stress reduction, position changes), so I don't have to use the drugs at all hopefully. Just my 2 cents.
You have a choice. Nobody can force you to take the meds. As is often said here Afib treatments are for quality of life and if the drugs make you feel crap they need to be reassessed. Beta blockers are not for everybody and certainly not at any sort of one size fits all dosing.
You absolutely have a choice. Your body, your choice. I'm not doing what I have been instructed to do by cardiologist, because I don't believe it's in my best interest. So I am developing my own plan. You may need to talk to your cardiologist more. Or if your doctor is not receptive to having a proper conversation with a patient (and this is unfortunately the case with my cardiologist), then you may need to get a second opinion - hopefully from a cardiologist who will investigate more thoroughly.
I burst into tears when I was told I had to take medication in 2012. I felt so well but if I had to take drugs I felt I had somehow joined the ranks of the unwell which didn't make sense. I felt uncomfortable going on trips ( what if I have a bad episode, checking to see where the nearest hospital is etc). But years later I have settled into a sort of laid- back acceptance and a healthier lifestyle. Afib is an electrical fault which is not life- threatening and at least I have a heart check up every six months - while there maybe hundreds of people sitting on a potentially heart related crisis that they don't know about having never seen a cardiologist. It's a nuisance and very tiring sometimes but there are far far worse things that people have to live with so I consider myself lucky. On the other hand ectopics can make your life a blooming misery! I had a 1000 a day at least til I changed medication (for reasons ot related to ectopics).
This site is fantastic I have learnt so much and the support and friendliness so comforting. It has helped put things in perspective. I didn't quite understand your post - is it the Paroxysmal Afib that makes you anxious or the ( harmless) ectopics?
Take care and " always look on the bright side of life" X
I'm with you, Lilypocket - laid back acceptance and healthier lifestyle. Not everyone can be so positive, but I'm a believer in working on the things you can control and don't stress over those that you can do nothing about. We are the fortunate ones..
Sorry to hear that, but your attitude is great. Ultimately we are responsible for ourselves. This forum is brilliant, both informative and supportive, and has provided so much sensible advice. I read the posts every day, and respond where I have something to contribute. Look after yourself.
I was told I had heart failure three years ago after a bout of untreated pneumonia. My heart ejection fraction was measured at 9% at first and I was virtually read the last rites by a British Heart Foundation volunteer. After 16 days in ICU and Cardiac Ward I was back up to 22% (normal is 50 to 70). I was advised that I'd need a pacemaker as anything below 35% requires this. As I felt I was getting stronger after an intensive period of medication, exercise and diet, I persuaded them to leave it for a few more months, and crept over 36% on the next test! Have since been measured at 44 so pretty much off the radar for the cardiologist. But I do have permanent AF, though mostly asymptomatic so take bisoprolol (supposed to be 10mg but 5 is enough) and riveroxaban. I march around the golf course two or three times a week and am still getting stronger. Keep an eye on BP, heart rhythm weight and bloods, and generally get on with life. I know that I've been lucky and assume a lifetime of regular sport and a hectic job has given me some reserves of resilience etc.
Well done! Yes 9 per cent sounds scary. So you are not retired obviously. I suppose permanent Afib after a while is less stressful - as some on here have stated - as you are not waiting for the next episode to hit so to speak which creates anxiety in itself. Keep golfing! Was it Oscar Wilde who said " Golf ruins a good walk" 😂. I think I Would knock someone clean out If I tried it!
When I was first diagnosed with PAF,about 4 years ago, it did frighten me, plus having to go on anti- coags.
You get used to it though and it doesn't worry me at all now. If I get an episode I just take a beta- blocker, and up until now always settles it. Also, I can recognise when I'm going to have an episode and can sometimes nip it in the bud, before a full blown episode.
I just get on with my life now as before and it doesn't worry me at all, I drink alcohol, most weekends, I have a passion for coffee and drink 3- 4 cups a day of caffeineated. The worst trigger for me is sweet stuff for some reason, if I eat too much chocolate or sugary sweets it sends me into AF, but I still do it!
Like my GP said to me in the beginning, it's not nice but it wont kill you.
Yes. I had arrhythmia for 20 years but my GP said it wasn’t serious and I was fit. Only when I started working for an American company and in a medical emergency they picked up AFib , that everything changed. They put me on beta blockers even though my blood pressure was always around 110/90 and scared me into thinking I needed them permanently plus blood thinners which i never used to take before the cardioversion.
So the fear messes with your head and now I “feel” I have AFib whereas 4 years ago I could only feel it if I over exerted myself. And I’m definitely less in the mood for most things...
I was diagnosed with AF 2018 when my heart rate was 170bpm. I was fed up as, like many, I felt fit and to be told I had to take medication for life was shocking. Sine then I have been on Apixaban and Verapamil, which is a calcium channel blocker. I have had a few episodes but I wait them out, resting and drinking cold water. Typically they last a few hours. Usually I can identify a trigger - forgot a pill, drank some alcohol (which I now avoid completely) and twice because I bent over suddenly! I have had absolutely no adverse reactions to the medication (shouldn’t have said that as it is tempting fate) and feel completely normal. What I have never really understood is why some people are given beta blockers, and others CCB. Can anyone explain? From all I have read about the depressive action of beta blockers, I am grateful I didn’t have to go there. I would add that I do not have a blood pressure problem, is that the reason?
I do hope you can find a way to feel better. I read lots of good advice on here and once I realised that I probably would not die from it I felt better. The main inconvenience is remembering to take my midday dose of verapamil.
This is an anxious time for all and it is not easy to stop worrying. I think the suggestion that the medication is causing a lot of what you feel is probably right. Perhaps talking to your doctor and asking if it is possible to change might help.
I don't have blood pressure problems but take a beta blocker as a rate control medication in tandem with a rhythm control medication. The rhythm control med ( Flecainide)helps keep the heart beating correctly but can sometimes make it beat very fast hence the rate control med ( in my case Bisoprolol) in case that happens.
I too wonder why some of us are given beta blockers and some calcium channel blockers.
I am on Bisoprolol- a very low dose, daily for my Afib and I never had blood pressure problems, in fact it has made it very low ( so I’m trying to taper down to a very low dose to help). Verapimil, also is given to aid high blood pressure too though, both BBs and CCBs lower blood pressure. I think Doctors presume that all those that have Afib have high blood pressure, which isn’t always the case. Unfortunately most of the heart drugs they give is, lower blood pressure whether we like it or not, it seems.
Teresa
P.s oops! I have just realised your post is 2 years ago! I am sorry, I wish they wouldn’t pop up in my feed like this!
I think we have all been anxious especially through COVID 19. I think it’s normal to be anxious about A/F as well. But anxiety really doesn’t help as it can bring on an episode. I have found that If I take my pills and just “do things in my time” then that seems to work for me. Mind you I sleep for very few hourS (5max) which is not ideal. I feel much better if I get a good nights sleep. I have learned to deal with an episode now rather than panic as I did in the beginning. I know all this is easier said than done but I feel we don’t have any choice or life’s miserable. Keep hydrated, try not to stress too much about anything we can’t do anything about and try to eat healthily and get a walk everyday if poss. I hope this helps
I am usually a very positive optimistic, sorter outer kind of person. In my life and career I was always the one getting stuck into projects and issues,as well as a busy social life. I enjoyed being with so many different people from all walks of life .
Despite my best efforts I had to leave work ,early retirement as I just could not keep up the fast pace.
Coupled with losing my mum to an AF stroke shortly before,I struggled for a long time and often relapse into low mood even now 7 years on.
I think it's because I'm aware this will never be 'cured' so feel there will be no closure and just have to live with it.As a problem solving person I find this hard to accept!
It does help to recognise that there are worse things to happen to you and that we can help ourselves a lot with good nutrition and lifestyle ,ad well as mental health exercises and approaches such as meditation, music therapy etc and taking appropriate medications .
I know drs often say AF won't kill you...but then we are also told that AF increases risk of stroke 5 fold! Ok we take anticoagulants to reduce but even so it is a sobering thought which I for one find preys on my mind...
I had on and off palpitations for around 10 years and only had them once every year or even two years to begin with. I used to think they were palpitations and as they were so infrequent, I used to forget about them. If only I could be like that now. Last year, I had a bout of anxiety, which bought them on monthly. After a bad attack I went to A&E and they diagnosed Afib. Ever since then, I’ve been on a roller coaster of emotions and am certainly not the person I was before last year. I have been very, dry down. I lost interest in all my hobbies ( I draw and craft), but slowly it has come back for me.
Have you not gone back to your interests after 8 years?
I am however a bit scared to go anywhere….I am weary of going anywhere else for dinner and restaurants, due to food bringing on an attack. I don’t enjoy life like I used to. I don’t have an answer for that though, sadly. I do wonder if I’ll ever go on holiday again, or feel ‘safe’ to.
It has certainly affected family life and the atmosphere in our home. I don’t have an answer for that either. No doctors, cardiologists or EPs understand. It is very much ‘pull yourself together’ and get on with it attitude.
Have you considered asking for cognitive behavioural therapy? I am seeing a therapist via the NHS and she calls me weekly. It does help and may be what is helping me get back into my interests. I applied on line - it’s called ‘therapy4you’ via the NHS and you don’t need a doctor referral. I had to wait 6 months, but it was worth it.she does seem to be helping.
Teresa
X
P.s oops, just realised your post is 2 years old….why do they pop up like this? Aaargh! I hope you feel better these days?
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