Apologies for long probably boring post!I was diagnosed with AF last September at the age of 60, l have had 2 more episodes since then and loads of skipped heart beats.I can’t take blood thinners because in the past l had 2 very big stomach bleeds taking aspirin. I take Flecanide as a pill in the pocket and propranolol. My anxiety is through the roof and l seem to have had loads of other medical problems since then and l fear the GP is getting fed up with me. I also have a thing called right bundle branch block.l am having a cardiac MRI on the 10th July as l have been breathless a lot recently, l seem to be falling to bits and as well as all that am also waiting to have my hip replaced. Does anyone else feel like they have suddenly lost their health?Or has anyone else been told that they can’t take blood thinners? I think it’s that that’s really bothering me-when everyone else seems to have protection against strokes. The doctors just tell me to worry about it when l’m 65?? My chad score is 1 Thank you!
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Dramaqueen1
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So sorry to hear that you are having a difficult time and can understand your concerns about the risk of stroke. Fortunately your CHADs score is low and for the moment, “youth” is on your side. There is a procedure known as the Watchmans Device (LAAO) which is sometimes available for people unable to take anticoagulants and it is described in more detail on the webpage, link below.
There are a few forum members who have had the procedure but the majority have been carried out in the States, but it might be worth discussing with your Cardiologist.......
Hi Flapjack, thanks for the very interesting link - it seems such a " simple" solution but could really help people who can't take blood thinners or anti coagulants. However it seems aspirin still needs to be taken after.
I do understand your concern but as Flapjack has mentioned your stroke risk is quite low. Aspirin is actually much more dangerous regarding internal bleeding than anticoagulants (they don't thin blood) as we often warn and if your bleeding has been stopped then in time you may find that the advice changes. Life is all about balancing risks regardless.
I have the same problem and constantly worry about stroke risk.Most people see m to be able to take an anti coagulant with no problems but I'm not one of them.People writing about the dire consequences of not taking them should spare a thought for those of us not as fortunate as they are.I have spent many months suffering from the severe side effects of the various anti coagulants and the added worry of increased risk of stopping after starting to take them.I am 86 years old and can only hope that if I have a stroke it will be severe enough to kill me! I sympathize with you and completely understand your concern
I completely understand and it’s horribly anxiety provoking.
The warnings are so dire and you feel completely helpless.
I do hope you manage to stay well as it’s not a good time to be ill at present, such a nasty disease-l still haven’t got used to it and l can’t understand how people can say they just try to get on with their day when an attack strikes!
My attacks make me fear l’m going to die they’re so unpleasant. I’m not sure l will ever lose that fear but l realise that l must somehow try!
I remember when I was given the full dose of apixaban, I developed bruises all over my arms so decided to stop. The cardiologist said that as I had a 2.2% chance of having a stroke, I should continue but I replied that I therefore had a 97.8% chance of not having one!- I think the chance of having one now has gone up to 3.2% as I am female and over 75- they work these things out on averages and as we know, we are all different. I now take the half dose of edoxaban as I am only a little over the cut off weight and approaching the cut off age of 80 and it doesn't seem to be too bad.
Try not to worry as that makes things worse- meditation and breathing techniques are good - do give them a try and hope you get to enjoy many more bonus years! Sometimes taking the stuff can be a lot more dangerous anyway- a friend who had been put on the full dose (though she is over 80 and weighs under 60kg) ended up in hospital with severe internal bleeding, requiring blood transfusions that also went wrong so you are certainly better off without side effects like that!
I have had it for a long time now and get several episodes a month.I remember how frightened I used to feel but now the AF concerns me less than worrying about stroke risk each time I have an episode.
I take flecainide 100mg as a PIP and episodes rarely last more than a couple of hours. I'm taking it regularly again now and after a tricky start I am hoping I'll get fewer epsides. I sometimes take the lowest dose bisoprolol too when having an episode but otherwise cannot take it as it brings my heart rate down too low. We are all different and hope you discover what works for you.
Hi, I am also unable to take anticoagulants due to leaky blood vessels and was fitted with a LAAO device 2yrs ago on the NHS. They were going to fit the Walkman device but due to sizing used the Amplatzer Amulet instead which does the same job and has been around a bit longer. It certainly put my mind at rest re strokes occurring from clots in that area although others could form elsewhere it's less likely and certainly better than no protection at all.
Thank you Angie I will try to talk to my doctor about this procedure. I have read about it but thought it was only offered in the US
I think things are different throughout the UK with treatments and waiting times and probably expertise! Whereabouts in England are you? I am in the South East and oddly enough medical appointments/treatments seemed faster in London-no one has suggested any solutions to my problem living where l am so l may need to travel. Thank you though.
I'm in Berkshire and saw a consultant at the Royal Berks who arranged for for me to have the procedure done at St Barts in London. They specialise in heart procedures and have many knowledgable EPs there so I felt in safe hands.
Hi Dramaqueen1 I don’t take any medication for my a fib I have it every few days but I take 1000 iu of vitamin E and Nattokinase to break up blood clots, I do not know if I am doing the right thing but I have been told these are good for thinning blood. My father in law had drugs for Afib which he took for fifteen years he then got fluid in his legs which the doctors told him was due to his kidneys being damaged through the drugs he had been taking, he died so I just keep my fingers crossed I am doing the right thing I have had Afib for 7years good luck as it is a very horrible illness
hi I was also on E/Natookinase instead of anti coagulants (also added fish oil/garlic). Due to having many episodes at that time I agreed to go on Eliquis. Frankly I wish I had stayed on them as it actually worries me more being on Elqiuis I know everyone will tell me that is wrong, just giving my personal opinion. Also a plant based diet high in fruits/veggies is helpful and keeping my BMI at correct level and walking at least 5 days a week for at least 30mins briskly.
Hello, it is tough in the early days but be assured, from the majority here that have been there, it does get better.
The anxiety should decrease over the next couple of years as you work through the necessary learning curve and don't worry about your GP, just go, be persistent in addressing your 'problems' one by one and if necessary pay for a private cardiologist/other medic consultation as you need to stay in control.
You are not in the 'stroke zone' yet, so you have time to sort everything else out and work on lifestyle changes (all discussed here). It seems that you have no option re anti-coags so don't worry about that; thank goodness you had the experience with aspirin as without that plus anti-coags you could have been in real trouble!
I am 66 and have postponed taking anti-coags preferring to focus on improving my general health. Through exercise and unprocessed organic food cooked from scratch my BMI (body mass index) is back to 22 (when I was 17!) and I take a number of supplements, some specifically for this issue i.e. garlic & Krill oil nb. not a substitute for ACs but should help a bit. Hope something there helps.
I have had a rough few months and my GP puts everything down to anxiety which l hate.
I am trying to get a bit fitter with regard to my general health but until l get my hip fixed l can’t usually manage too much exercise without being in agony but l walk as much as l can and hopefully l can do more after the hip surgery.
Yes although the bleeds were terrifying and l needed blood transfusions perhaps they were blessings in disguise?
I do other exercise but the key I believe is the going back to the simple exercise of Nordic walking one mile twice a day religiously (before breakfast & tea) whatever the weather to improve your metabolic rate. Couple that with minimal processed food, sugar & gluten and it seems to work. As with all lifestyle changes, it takes time but the plusses are nothing but beneficial side effects and no hardship.
What's the problem with gluten? I have a good healthy diet but I've made my own organic bread for years and have the odd portion of organic wholemeal spaghetti but not sure what else it might be in-
Brisk walking if you can manage it (try using proper carbon fibre Nordic poles to ease the pressure on your hip) is probably better than other more energetic stuff I used to indulge in. I now do 1 mile before breakfast and 1 mile before tea and regard it as an essential tool to avoid clotting come rain or shine.
I was first diagnosed with AF at 65....I'm now 72. Until I was 68 I refused to take anticoagulants as I didn't like the idea of a possible internal bleed.However, as my dad died from a massive stroke at 69 in 1981 and I was approaching that age, I decided that mayb I should start taking them as he could have had undiagnosed Afib. During the 3 years that I didn't take them I used to take several things which were 'natural ' blood thinners. I took turmeric capsules, I had a glass of milk every night with cinnamon stirred in and I used to take Nattovena tablets which I had to send away for. Now I know that there has been no conclusive research as to the efficacy of this but it did make me feel more secure and during the three years I felt fine....apart from the pesky AF episodes of course. This is only a suggestion to help ease your mind but do do some research into natural blood thinners if you feel that it will help.Of course it is also important to make sure that any natural remedies will not cause another stomach bleed.
Thank you very much-they seem like very sensible suggestions. I will do some research and strangely enough l’ve just got some turmeric capsules so l will try them.
Sometimes with these things-for me anyway-the anxiety of ‘what might happen’ is worse than the illness itself!
As well as the Watchman device there is the Amplatzer amulet that is better as it has a wider range of sizes. I had an Amplatzer fitted privately four years ago as I did not like Warfarin and the newer drugs were contraindicated with my tissue valve. At that time my surgeon had fitted over a hundred of them.
If you find exercise difficult you will have to be very careful with your diet. For women the estimated daily calorie intake is 1500, which is not a lot. Any exercise will help as it will give you an enhanced calorie burn so that you can eat a little bit more.
With joint problems any weight you can take off helps a lot. if you are 8 llb overweight it is like having a lump hammer banging away on your joints.. Every llb you can lose will help. If your lack of mobility is causing you major difficulty, a good option would be to lose the sugar.
No cakes, no biscuits, no jam, no sweet soft drinks. Amazingly hard to do as you have to try and work out what is hunger, what is thirst and what is a craving another dose of sugar. This stuff is amazingly addictive. Try keeping an honest food diary for a while and write down everything you eat. Then have a look through at the end of the week and work out how many extra calories you have added in.
You are only 60 and could have 20 good years ahead with places to go and people to see. The first week is the hardest. Good luck.
My downfall is chocolate!! I used to be very slim but now l’ve put on some weight and l hate it, but my saving grace is that l’m very tall which tends not to show it so much.
I used to have a very active job working with children in London and never gained weight.
Otherwise my diet isn’t too bad but because l’m not moving as much as l used to-the extra pounds go on.
I actually have been told l need two new hips but goodness knows when that will be so l am very crocked at the moment but try not to moan too much!
I will let you know how l get on with cutting down the chocolate!
I am in a similar situation. Aged 60 and diagnosed with AF. CAD score of 1. No need for anti coagulates yet. However Episodes of AF have gone from once every two to three weeks to every two to three days. Medication is helping to reduce heart rate but my resting rate is only 50 and has always been low.
I have an under the skin loop monitor and Guys Hospital are keeping an eye on me. I am trying to lose weight as BMI is around 33 at the mo. I watched my Mum go through numerous procedures for the same thing so trying to avoid surgery for as long as I can.
I am currently trying to avoid artificial sweeteners as I noticed my AF seemed to increase when on a diet. They are in diet drinks and yogurts so hopeful this might help.
Not much advice but just to say you are definitely not alone.
I need to lose a bit of weight too-but with severe osteoarthritis in both hips it’s difficult to say the least!
I will be 61 next month so l’m trying to look after myself but l think my anxiety has got in the way and everything seems a bit negative so l need to get out of that mindset but it’s hard!
You are at a very good hospital-my care here in Hampshire has been a bit hit and miss.
I used to live in London and l think the care was better but perhaps l’m a bit biased! Anyway nice to hear from you and take care.
Secondtry 's idea of using two walking poles (nordic walking) is a good one. If you can find a level path to go along it will help a lot. Bear in mind that exercise releases synovial fluid to lubricate your joints. The catch is it takes a while for your body to realise that you are exercising and it is usually about 20 minutes before it kicks in and helps your joints to move.
If you get a fitbit / apple watch or similar you can see how active you are and how many calories you are burning. On some days it can be a bit of a shock.
Hi Dramaqueen. I’m with you all the way. My health took a massive downhill turn in 2018 when aged 66 I was diagnosed with frontal lobe brain tumour. Had multiple problems since then both physical, emotional and financial including total thyroidechtomy. My blood thinners resulted in daily nosebleeds despite trying 3 different ones, although I was told to take them I now shave a little bit off it and have not had nosebleed for months but multiple other problems including physical, emotional and financial.
I think it’s like an avalanche sometimes-one awful thing happens and then everything else follows.
I hope you have some good support-although l find that some friends can be a bit ‘fair weather’ and l have very little family around so sometimes it’s just down to you-and l also think that healthy people can become weary of listening to all our problems!
If you’d like to keep in touch then l’d be very happy to chat anytime at all xx
Thanks for that. Yes I do have some good support both family and friends but do think they must get fed up with my problems so I tend to keep my worries to myself mostly. X
My brother has AF and when he was 63, 2 years ago, he had the watchman device inserted (Charing Cross hospital, Hammersmith) as his body can't tolerate anti coagulants. He still takes bisopropol daily, but he is in good health apart from gout
How strange-l used to live literally round the corner from Charing Cross hospital-l moved to Hampshire 3 years ago and l have had no suggestions from any of the doctors here about the Watchman-l will definitely bring that up with them.
Glad to hear your brother is doing well that’s so reassuring to hear-thank you
Never heard of watchmans device. Will google it. Was going to be transferred to Charing X from Royal London for thyroidechtomy but never happened ...
My wife had a stroke in February but her medication (Ramipril and Clopidogrel) caused severe side effects, so she had to come off them. She has since been told that she cannot have antiplatelet medication or aspirin because she also has secondary breast cancer and a lesion on her chest has started to spontaneously bleed. It seems to be a horrible choice between risking a blood clot or a catastrophic bleed. Sadly, sometimes there are no simple answers.
I’ve have three ablations and two cardioversions in the last three years. I no longer have a fib, but do get nearly constant pvc’s if I don’t take 3 flecainide pills a day (150 ml. total). I feel good, have energy now, but because of my age (68)) and sex (woman) am instructed to take a blood thinner, which I do take (Eliquis). I don’t like taking them because I fear a brain bleed, but I figure you’re damned if you do, damned if you don’t. All we can do is live as healthy a life as possible and just go on and don’t dwell on it. I also don’t talk to my GP about my heart. I only deal with a cardiologist that I trust. They can tell you exactly what’s going on with your heart and you’ll have more confidence in the advice they give. Hope this helps. It’s very depressing and stressful when you’re weak and breathless and that needs to be addressed.
Lots of great advice here and I do sympathise with your predicament. My brother has AF and cannot take anticoagulants due to being a benign alcoholic. He's still with us after 7 years and recently gone into permanent AF. It does sound like the fear if stroke is what's bugging you the most. I've had PAF diagnosed since December last year and I went through a similar fear of stroke when I found out my BP is high - when for most of my life it's been low. So my CHADVAS-2 is higher than yours. My thoughts are to get help with the anxiety. The more anxious you get the more your body releases cortisol and you move interested a viscous cycle. You can learn to tune into your body and reduce the anxiety without drugs. It takes practice but it's worth it so that your baseline peace of mind is better. If you check my posts you'll see back in early April (my last episode) I did a post asking others what strategies they had to distract themselves during an AF episode. You'll find some great tips there as well as a few laughs. It really helped me.
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