Sorry to sound so blue. But I still don't understand a few things
1. I am on a pip because my Chad score is 0 yet i could still have a stroke if I have a attack what s the point of even having a Chad chart in the first place this is the case
2. I keep hearing that in time af gets worse and drugs stop working surely ablation should be offered a lot earlier before you get to that stage where you have no ither options
3. I have read quite a few articles written by some top cardiologists who believe the cure or at least prevention Lies in diet and supplements yet it never get much press why
4. Aniexty should be treated as part of the treatment in my view. I never heard of afib while I laid in my hospital bed terrified . Then back on the street with these powerful drugs I'm told to take or I could have a stroke??
5. And finally I would dearly like to know how you cope with af as after three years I still have very low days of feeling less than half the man I was. Just wish I could turn off the worry tap.once again sorry for the blues
Wishing you all a happy healthy afib free year
Dave
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Sorry you're feeling so down Dave. I can't really answer your queries but others here can I'm sure. But I agree that more attention should be paid to our anxiety issues. it was a big problem for me in the beginning, and is now for my son, who also started af a couple of years ago. He feels much the same as you do. but my own experience has been that it does get easier as time goes by. You get appropriate treatment, sooner or later, bit trial and error to start with, and it becomes more bearable. I ve had it for 20 years and it's ok. take heart (!) and keep sharing. JanR
I'm sorry to hear that you're feeling so down with AF. I've had AF for more than 8 years, and I'm still on pip. I think AF stretches along a continuum, with some people having heart problems causing AF, along to those who have PAF, and no actual heart problems, but an electrical irregularity.
I am very fortunate to experience AF irregularly and I'm much helped by addressing my AF by diet, and supplements, and this definitely helps me. Obviously, this won't work for everyone, but for me it appears to work, and my AF is no worse now than when it began 8 years ago.
Please try not to worry about it, as you will see that many people on the site have lived with AF for many years, and have found solutions which work for them, whether it be drugs, ablation, diet and supplements or a combination of some of the treatments.
At the moment I am like you and have just a few episodes a year. I take magnesium . Cod liver . And hawthorn . I love to cycle and hopefully get back to the gym but still a little nervous about overdoing it
I am very interested I how much hawthorn and what brand do you use? What do you think hawthorn does for you? I am a big believer in trying to use natural solutions whenever possible. Thank you for your opinion.
Dave, bite the bullet and get on with it babe. Today my friend travelled to arrange her funeral. She is riddled with cancer. I'm lucky in as much my husband and I have already arranged and paid for our funeral. Live for today because tomorrow isn't promised.
Because I don't pay life insurance. My husband has a policy, but, (hoping we have a good few years left) by the time the insurance is needed, and at the rate the costs of funerals are rising, the pay out may not cover the funeral. I've paid at today's prices, Everyone will know exactly what I want including music and where I want my ashes scattered. It takes so much pressure off the bereaved.
If you're in the UK, you can ask for - demand even - an anticoagulant, whatever your CHAD score is. CHADS has little credibility for me - I have AF and therefore at greater risk of stroke than my counterpart who doesn't have the condition. Subject of course to any over riding medical reasons why I can't have it, I need protection.
The only thing around for afibbers which resembles a cure is an ablation. Have you enquired about that?
diet and supplements won’t cure everything unfortunately, you can try and see if it works for you, to be honest the only thing that worked for me was having an ablation but it took me two and a half years to get one
I had to push get proactive and not sit there taking even more pills from my Doctor who was more than happy to dish them out, it’s the quick easy and cheaper option meanwhile my life became a miserable existence, anxiety and worry are personal issues...meaning its different for everyone yes I worried about going down with a stroke too, and had many days where I was severely depressed, I saw no way out
I believe that getting an ablation would depend on the severity, where you live, how long the waiting list is etc., unless you’ve got private medical cover
Having a chads score of zero is no bad thing, your risk when having an ablation is far less than someone with a higher score!
These are just my views based on personal experience, nothing more
You feel free to sound blue, we have all been there or slip back there, it's really common and who the heck can blame us, there we are happily living our lives when BOOM!!! someone tells us that our heart is not behaving "normally" we have a 5 times increased risk of stroke, and it's probably never going to be the same again. It's tough coming to term with that, really tough.
Let's try and address your questions.
1) The PIP is only for the AF, doesn't address the stroke risk, BUT if your score is zero then what that is saying is that the risk of taking anti-coags is at present probably outweighing the risk of stroke. It's a tough one always, my score is zero but I take an anti-coag, and then in 3 years with no other changes my score goes up one.... It does feel like a bit of a lottery.
2) It does seem that AF gets worse, BUT the one thing we know is that we are all different, and unless your lifestyle is seriously challenged by AF then doctors are reluctant to perform ablations. In fact the guidance in the UK for certain is that they must expect a lifestyle change from the ablation. Me as an almost symptomless persistent would find it hard to persuade any doctor to give me an ablation, so I have to wait for it to get worse.
3) I doubt you'll find any "top doctor" who says the cure will be found in diet and supplements, they may or may not help the jury is certainly still out on most of them, what they will say however is that a cure may be found in a lifestyle change, that's not merely diet and probably not supplements, but the whole change that is necessary, and you should read any of the posts by SRMgrandma to find out about this. What's pretty certain is popping a few supplements or vitamins is not going to give you any kind of cure, they may help, but no cure.
4 Complete agree about anxiety, one begets the other and the two so often go hand in hand. I wish I had a magic pill for you, but all I can say is it does get better, I promise, and knowledge is power the more you know about AF the more in control you feel. It helps I promise
5 How do you cope?, well bluntly what's the alternative?, sit in bed all day and vegetate, Naaahh I'm bigger than my AF, it's not going to bring me down (again) I won't let it. But it is a constant fight, constant.
Dave, if you are struggling with anxiety talk to your GP. CBT may help you or other stress reducing activities such as yoga. If you are seriously depressed it is impossible to see your way through and you may need help with this before you can come to terms with AF.
All above very good advice AND living with AF is also about state of mind & thinking. Get that right and life will start to look better - as Peddling says - CBT will help you there.
What IS the alternative? As soon as you stop living you do start dying. I had AF for about 10 years all told - but I don't now - after 2 ablations. Only trouble is I have now got a chronic and incurable autoimmune disease which is far more debilitating than AF ever was and I just do what I can, when I can.
Staying positive is not easy but essential if you want to enjoy your life therefore focusing on what you CAN do rather than what you cannot or worrying about what might happen rather than focusing on what is, really is the first step to recovery, mentally and emotionally. No-one can give you a PIP for that - you have to do it for yourself - and you will find many, many helpers and supporters here on this web-site who will help lift you when the going gets really tough.
Dave, there are days when I could have written your post word for word. I call them my demons and the doubts are always worse when one feels less than 100 per cent anyway. Dealing with them is the thing . . . Ian and the other posters have given excellent advice.
Like you, I sometime catch myself worrying about the progressive tendencies of AF, so I asked my EP to be blunt about it. He said progression of AF depends on so many factors, including an individual's condition, symptoms, pre-disposition and ageing rate. So, I decided to concentrate on the fact that it might progress so slowly that the drugs can cope with it in the longer term.
Sorry to hear you're feeling so down - at least everyone on here understands where you're coming from. I have found this forum very comforting because whatever weird symptom I have or how I'm feeling, there are always people here who have had it and understand.
I think anxiety is underrated as part and parcel of AF. Last time I had AF it lasted much longer than usual, and I was feeling more than usually anxious. It normally goes when I am asleep or stop thinking about it. To me, that's significant. Occasionally I think doctors could do worse than prescribe a little 'calming down' 'pill in pocket' for those who get AF occasionally.
I think many GPs run scared of the condition to be honest. They don't know a whole lot about it and their automatic reaction is to give you one or two favourite drugs and if that doesn't work, to increase the dose. It's far from ideal.
Myself, I try not to let it rule my life. If you're lucky enough for it to be occasional you can probably make believe you're absolutely normal in between. If your score is zero that's good, it means your risks are much reduced. That has to be good.
Is your AF being treating solely by medication? I was prescribed beta blockers by my cardiologist (who had a 'let's try this' attitude) that just didn't agree with me - they made me feel really down, almost suicidal, without sounding too dramatic, I hope. A house move a few months later gave me the opportunity to go to see a different specialist – an EP. He suggested I had an ablation as soon as possible and to drop all my drugs, apart from Apixaban. I see others have raised this.
Maybe you could get some counselling for your depression through your doctor? If you feel down all the time, that's not really 'normal'.
Worrying about some things is useful, but worrying all the time eats away at you. I find if I go out, just walk around the town or the park, I always feel better. And try to get involved with things - friends, family, organizations that need your help – you may find your mood lifts.
I hope this doesn't sound preachy or patronising – I'm just telling you what worked for me.
On point 2, it's a new field and there simply aren't enough EPs or sets of ablation equipment available to do everybody that early. Maybe in a decade or two they will have caught up with the demand but I suspect not.
Guess you are right. the nhs is certainly overwhelmed .just keep doing the lottery and hope for the best
Hello Dave,
I agree with you about the anxiety, but also it's the frustration, especially in the early days after diagnosis.
I've had 3 ablations after being diagnosed with AF in 2010. Each time, you think it's cured then after a couple of weeks up it pops again....makes you want to bash your head against the wall.....that where the frustration kicks in.
To start with it was a trial and error with the drugs and advice was that if an episode lasted more than 2 hours to go to A&E.....I think it was the 8 trips to A&E that prompted an offer of an ablation.
I am now left with Atrial flutter, a pacemaker and a cocktail of drugs...oh and a spray.
I too have a low CHADS score which is positive and am left regular flutters which sometimes hurt my chest upon exertion. It is a constant presence which is just invisible to all around you so you just have to live with it so I keep telling myself....but in a strange way it becomes part of you, a friend almost. I have no anxiety about a stroke....those that don't know they have AF/Flutter run the risk of a stroke without knowing about it....at least our condition is known, we are taking stuff that reduces risk and therefore have some control. The worry is still there of course there's no denying that, it's a human condition, but we know it's there and are doing something about it....and hopefully there's plenty of gaps in between where we are "normal" happy people.
A CHADS score of 0 means that that your risk of stroke is the same as the general population who do not have AF. That is not the same as having no risk. I would view that as a positive rather than a negative. I also have a CHADS score of 0 - I am in no hurry to be on anti-coagulants.
I can only suggest that you try and live as normal a life as possible and do not let AF get you down although I understand that may not be esay from your current viewpoint.
Have you considered that your anxiety may be related to other factors?
My GP mentioned that AF can you a feeling of anxiety - something to do with the action of the sympathetic or parasympathetic nervous systems. When I get AF (thankfully rarely now due to the meds) I get a feeing of unease which I now put down to the AF rather than any generalised cause of anxiety. Perhaps this may also be an issue for you.
I agree. I am not an anxious person ordinarily, but when in AF episode, get irritable, jumpy, and definitely anxious. The cause and effect goes both ways, though, as illustrated recently during Christmas issues with a grown daughter. I was sailing along enjoying what should have been the most joyous day of the year until unexpectedly lit into by daughter via text message. Immediate afib episode, overriding flecainide and all efforts to remain calm (and happy). The connection couldn't have been more clear! All back to normal when communication ended and the rest if the day took over.
Hoping this becomes the happiest year of your life (so far).
Firstly I would just like to say how overwhelmed I am with so many replies in such a short time . And thank you all for your helpful words and understanding a lot to think about. Once again I wish you all well you guys are the biz!
These answers are all so helpful! Just two things to add: Supplements, diet and other life-style factors may decrease the severity of the AF, which may mean you feel better, and can also decrease your dependence on drugs. Many of the drugs have side-effects, often leaving one feeling down, lethargic, unable to function happily, and with a very low quality of life. So if supplements etc reduce the need for them, that can only help.
Meanwhile, consider if a change of drugs is possible. You may find some on which you feel much better. Then you can start to enjoy life when AF is not active - and start feeling much more hopeful and positive. Also, if it turns out that you have tried several drugs and none of them suit you, you may get that ablation offered sooner - if that is the road you want to go down. If your doctor won't consider changes in the drugs - consult an EP (see advice elsewhere on this forum)
I think its the no knowing `when` with AF. I usually have a 3 day AF period every 2 or 3 months with smaller ones in between. So I try to plan my weekends away and any family events around this. Sometimes its a fast heart rate AF, (A and E) sometimes I can cope just pottering about the house when its slower. Taking beta blockers doesnt seem to make any difference to the fast or slow times, but I take them anyway. Seeing Cardio man on 21st, see what words of wisdom he has to say. GP not much help, just smiles and says well, see how you get on. But its in my mind a lot of the time, especially when I have a palpitation moment. Hey ho!!
hope after you written your post you felt better for airing your thoughts.
one thing I've learned is everyone goes through the mill and have extra bad days. -
Cant really add anything to what has already been written in reply. As others always say the AFib wont kill you . It maight make things tough some days . I guess we all have to find own level to cope iso we can bash on with things and bash on we must.
Hope reading posts helps you (helps me lots) and you manage to cope with that crazy rhythm .
Thank you big leg I have already started down that road and am finding some interesting answers I know that the big pharmaceutical companies have no interests in this area as there would be no profit for them.
Sorry to hear you are feeling so low, I think most people here have felt the same due to AF, it's a nasty condition that we have to deal with.
It stays with you every day, could this happen could that happen?, it's a constant struggle but as people here have said at least you know you have it and that's a much better position to be in than those who have no idea!!
I suffer myself with Anxiety and Depression, I try not to dwell on it but on positive things, this helps a little. I have started to use Mindfulness which once I have got into it I'm hoping it'll help me.
Anyway I wish you all the very best and i hope you have a good year with only small AF episodes and find a way through your Depression.
I have read all of your replies relating to anxiety and AFib an I am so grateful to have recently found this forum. You are all such caring people with bighearts! The AFib is definitely an issue for all of us but it won't own us. My wish for everyone is to enjoy each beautiful day without anxiety .
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