Stroke fear

Is anybody else on this forum not on anticoagulants but fearful of stroke? I have a low chadsvasc score but my fear of stroke is becoming debilitating sometimes as I cannot stop worrying about it. My heart feels so turbulent and fast and chaotic every day that it is a constant reminder of what is wrong with it and also makes me wonder if the worse your heart feels, the more damage is being done?? Any advice would be greatly appreciated. My EP and every doctor i have spoken to have categorically said no to anticoagulants because i am deemed such a low risk. But the fact that the risk is still there and so frequent is ruining my life with the worry of it all. I am so so scared of stroke. My father died of a stroke at the age of 49. It was not AF related but maybe this is why I have such a fear.

44 Replies

  • I'm rather the opposite to you as I didn't feel I needed anticoagulation when I probably did, but the anguish of being made to do something you feel is wrong is something that I think doctors should add into the equation as it has such an impact on wellbeing. Perhaps express your fears to your GP and see what reaction you get.

  • Thanks for the reply. Are you on an anticoagulant now? Did you have other risk factors aside from AF when you weren't on anticoagulation? I have told my GP and EP and other cardiologists when i have been in hospital how scared I am and i have been very upset when talking about this issue as it petrifies me but they have all said I am too low risk. They are following NICE guidelines which i understand and i understand their rationale but I am not just a statistic and do wish my individual case could be considered as this fear is having such a detrimental effect on my mental health with the constant worry. Part of me worries that because i think about it so much is it an instinct that i will have a stroke but i accept that may sound irrational and have been told by my eternally patient husband that it is is irrational!! Thank you for your feedback and another stance on it:)

  • Yes, I take Rivaroxaban now and I am very happy with it.

    I know my worries about Warfarin were irrational but it still felt as if I was doing the wrong thing. I found it difficult swimming against the tide of medical opinion and was really very down. And annoyed to be regarded as (at best) misguided.

    My heart has been slightly dodgy (palpitations mostly) for about 25 years - since my early 40's. When I turned 65 (I'm now not that far off 69) I'd had an ablation and was on flecainide. I had well controlled high blood pressure and I'm female with active AF but no other risk factors and my GP was not pushing warfarin. AF was no more than a slightly frequent event (a few hours every 6 weeks or so) but it doesn't have a huge impact and I've certainly regarded myself as slightly younger than I really am and my GP, I think, did the same. But the cardiologist didn't when a locum GP sent me to him and to my dismay anticoagulation was introduced into my life just over two years ago. Thus I lived happily for quite a while theoretically at risk and not anticoagulated. I took Warfarin for 22 unhappy months before changing to Rivaroxaban,

    The thing is, it's not that you suddenly have a risk when you turn 65 and you don't have one before, the balance of probability just tips at that point.

    I feel I've made points in an irrational order.

    I hope that your EP when you see him will perhaps be able to improve your heart and if it isn't so turbulent, you won't feel so worried. Or perhaps you will find a doctor who will be sympathetic to your worries and accept that it's unhelpful to brush aside a patient's fears.

  • If it helps, I was only on anti coagulants in the run up to and time after ablation(s). IT wasn't deemed to be needed during 5 episodes of AF and 5 cardiversions in as many months. I think I may have been on daily aspirin though.

    My score has always been low/zero

  • Thank you for the reply. Did your episodes last continuously for weeks/months?? Thankfully mine don't but I do have episodes every single day sometimes short bursts sometimes a few hours. Especially overnight. Sometimes i get so scared i will have a stroke in my sleep and not be able to get help in the morn and my 2 kids will have no one to look after them. I know i am letting my imagination run wild but this forum stresses me out hearing all the scary stories about stroke and AF:( feeling at my wits end now

  • They were 5 episodes, lasting 12-24 hours and I was particularly symptomatic with them..... blood pressure dropped and I could barely walk without feeling I was going to pass out.

    Only thing that got be back to normal was the cardioversion, but then I found within about 4 weeks I was back in AF.

    At no point was warfarin mentioned, until on the Waiting List for an ablation. It was only then that I started to take the stroke thing seriously...... but I think sometimes you can read too much into things.

  • im not on anticoagulation because my score is low I do know what you mean because everyday you think is this the day but reading everyones post that is on anticoagulations that can cause problems so we are in a no win situation but the longer I live with A/F the more I get use to it take care

  • Do you have AF frequently Jesse James? What are your symptoms like? Are they well controlled? Mine are not controlled at sllThanks for replying.

  • hi vony I can have AF often or go 6 months I take bisoporal every day and flecinide as pip which works well for me at the moment during the hot weather I keep getting a flutter which I cope with and i get light headed and feel like I will pass out I lucky that I have always had low b/p .for the first 2 years of AF I let it control me now I try to control it which I find very difficult sometimes but I still do everything that I did before Af but just more careful (working,gym,bikeing,walking,and grandchildren care) but AF can still be scary but life is to short to let it beat you x

  • I have persistent AF so a little bit different. I was told by my cardiologist that the current thinking is to put everyone on Anti coagulants even if they have reverted back to NSR. I think think this is also backed up by NICE guidelines too.

    I get worried about strokes and I'm on Warfarin.

    Might be worth demanding these drugs irrespective of your CHAD score. I too am zero

  • Thanks for replying. Do you mind if i ask your age? I am 37 and was told that current guidelines and thinking are no to anticoagulant if there are no other risk factors and I am below 65?? So many different standpoints. It really depressed me.

  • 48 but was 45 when first given Warfarin and have no other risks.

    I did ask about taking aspirin instead but was told that it was virtually useless for the sort of clots you can get through AF.

    I would certainly demand an anticoagulant

  • This is clearly causing you a lot of worry. If the medics are insistent that you don't need them then they are probably correct. In which case just dismissing you about it is not on. At the very least you should havre everything explained to you as to why they find it unnecessary. Your doctor should be helping you with stress and fear management via counselling. It is not acceptable to just leave you in such fear.

    Have another word with your gp and get some help you cant go on like this. Take care I understand your fears insist on support.


  • Thank you Dee. My EP has explained the chadsvasc risk assessment to me any time i have asked. He is a lovely doctor. He insists i do not need warfarin or a NOAC. Part of me realises that this is anxiety and probably disproportionate. I am engaging in Acceptance and commitment therapy but it has been much less frequent over the last last 2 months..once a month so maybe i need to increase this. I just feel so isolated as i do not meet people my age who have AF and anyone i do meet is on warfarin. I wonder how someone my age can have been well enough researched for stroke risk as AF is uncommon in my age group as far as i understand:( i don't mean to host a pity party for myself but am having a difficult few days. Today i am so exhausted from several sleepless nights being in AF and then working that I have been unable to entertain my kids. They are so good and undemanding. AF has caused me to be a totally different mother to what i imagined being. I don't have the energy at all and finding positivity a challenge lately:( thanks for the replies. I really appreciate the support on this forum.

  • Agree, you may need more frequent sessions of your Acceptance and Commitment therapy.

  • What ever is Acceptance and Commitment therapy?

  • It is a type of cognitive-behavioral therapy. Sounds like Vony has benefited from it in the past. Available from professionals, online or self-help books.

  • A number of years ago I read about a program like that called Beating the Blues from a company called Ultrasis. It was being used by the NHS and in America. Long story, I bought some Penny shares in the company. It was under funded and never made a profit and just as things were looking up with big new orders its fairy God Father who had been funding it was arrested for fraud and the company collapsed.

  • Perfect example of gallows humor, a company to help depressed people makes them more depressed by fraud and bankruptcy.

  • The product and another of theirs is still around but under new ownership and will eventually be profitable and is covered by NICE as a treatment.

  • It sounds like your AF is not being controlled. Are you on other medication and if so and its not working perhaps it needs adjusting. Have you considered ablation. A lot of EPs say the sooner it is done the more successful it is.

  • Thank you lallym. I have a few arrythmias and none are controlled though we have tried 3 anti arrhythmics and ablation. My EP had hoped i would go into permanent AF as it would then be easier to rate control but i have stayed like this for 2 years now. I am seeing him again at the end of Sept so will see what . Suggests.

  • Hi Vony...You really sound as if you are really stressed out and worried about taking a stroke,and we are all in the same boat when it comes to our imagination,when we feel our hearts going off on one,..The thing is Vony,you are only 37...most of the folks on this forum are at least 25 to 30 yrs older,..big difference!...obviously talk of stroke is more prevalent in that age group..but think about it...your system is roughly 30 yrs younger,your heart is the same,your blood is the same...apart fromAF your probably a fit young woman...don't let what might happen,but probably will never happen dominate your daily life, we say up here in Scotland "you have still a lot of damage to do yet"...Big Cyber Hug...Terry..

  • Terry that is one of the loveliest messages I could have read today. Thank you so much. I am about to sit and watch a movie with my kids and say your mantra to myself about not letting what might not happen dominate my life. Xo

  • The other Scottish expression from The McFlannels books and long ago Radio Series was, You've never died a winter yet.

  • Anticoagulants are not a magic potion. The side effects include possible internal bleeding that can be just as dangerous as a stroke, so taking them is a calculated risk. They are relatively new drugs with unknown longterm side effects. In your case, because you are so young, your doctor has obviously decided that your age is in your favour.

    I suspect that most of us in this forum are decades older than you, as Bollox2AF pointed out. I started on rivaroxaban at 65, very reluctantly too, I might add!

  • I too have AF I'm 51 and no other risk factors I have had for 2 1/2 years and am not taking anything for stroke except an aspirin that we all know is not a lot of help. I too asked EP and Dr and like yours both said no no no I was really scared as like you my father had a stroke and also I care for people who have debilitating disabilities I too got up every day thinking will it be today I was unable to function then in 2013 new yrs eve I decided that's it I'm not going to let this ruin or rule me so I started back exercing and have worked hard to not think about it and I feel much better for it I hope you feel better soon and can find away for you to stop the stress and worry that it is causing you .

  • ฯThe feelings you describe are very like how i feel. It is good to hear someone else had similar fears but has conquered them. I will keep trying to do the same. :) thank you.

  • Vony you really need to sort out your worry and frankly as a great advocate of anticoagulation I have to say that I wouldn't take it in your case. For every 100 people on anticoags a number will be saved from strokes but a number will also HAVE strokes that they other wise wouldn't not have done. There are two types of stroke. Thrombotic (clots) and Haemorrhagic (bleeds) and there is really no way of telling who will do what. Intestinal bleeding is also a risk from Anticoagulants and also from aspirin which does almost nothing for stroke prevention as we know. Unless you have a family history of early stroke or a high risk factor you would be putting yourself at risk even more by taking antgicoagulation when not needed.

    Please stop worrying as this really won;t help either you or your children.


  • But i do have a family history of early stroke as my dad died at 49 of stroke. He was a heavy smoker though and my EP has told me family history does not come into the risk assessment. I can't understand how it doesn't though. Also, many people on this forum have emphasised that we have a 500% increase in stroke risk because of having AF. I have exactly the same thing going on in my heart as everyone else with AF..regardless of my age..and that places me at risk of my blood pooling and forming a clot which could break off. Seriously i am terrified after everything i have learned from this forum. Surely the amount of time i spend in AF deems me more at risk of a thrombolytic stroke than a bleed from warfarin. Thanks for your reply.

  • Please go to CAREAF website and read all the data on stroke risk. I used to think like you and yes we AFers have a five times increased stroke risk but five times what? Until NICE says AF at any age or health condition = anticoagulation we MUST accept the data and our doctor's judgment. You could start warfarin or similar and go straight to a bleed Read ALL the data and try not to obsess about one aspect of this condition.

  • Hi

    the coagulation issue does seem to be a matter of dealing with uncertainty , which isn't helped by different medical opinions . Interested to hear BobD s comments about different types of stroke risk. Perhaps there is a need for some base rate info on this , as other wise there is nothing but floating anxiety which seems Vony to have had an impact on you.. I am on warfarin wit low chadvasc score but medics never seem to have factored that into prescription regime so have sympathy with you on the lack of explanation/hard data

  • Hello Vony, so sorry you are so distressed about your condition. You do say that your father died of a stroke at 49, although not AF related, I feel this is what is causing you so much anxiety. I assume your EP and GP are aware of this? Bob gives good advice and you must try and stop worrying so much as this will make the problem worse. I understand how you feel but my advice is take one day at a time, Terry is right about our ages on here, I am 42 years older than you, and you at least have youth on your side.

    Take care and try and look on all the positive side of your life with your two lovely children.

    Angel blessings.


  • Thank you so much Di xx

  • Hi Vony

    My score is also low....My EP and GP both said no to anticoags since my ablation and taking me off all of my heart meds and the anticoag....I have re asked the question...and got a firm no you don't need me being me I have gone back on my baby aspirin daily even though I know its probably not the same as the anticoag for my peace of mind as it has been a continual worry for me too... so I understand your thinking... my mum had several strokes later in life but they said that's not a problem for me either....

    so I am taking my baby aspirin just to keep me a bit less able to form clots...blood thinner....not sure if I said this right...



  • Hi Jo. I did the same as you for a number of months with the aspirin and then my EP explained to me that 9 research papers have been published which showed aspirin is not effective in preventing AF related stroke. He said 7 of the studies showed this. One study showed some potential effect but that was at a dose of 325mg and one study showed aspirin to cause haemorragic stroke but that was in a different population study (Japan). It is an awful worry. I just don't know what to do anymore. I hope your ablation has helped you. And thanks for the reply. Just to hear i am not alone in this worry is some comfort. X

  • Vony

    I hope you are feeling brighter today; the sun is shining here and I'm off to Sunday lunch with the family (sister up from London) and I hope you have family plans with your kids. I have sooo many things to say to you and will PM you later.

    For what my opinion is worth; you have been given the correct clinical guidance; it would be remiss of your doctors to prescribe something that has the potential to do more harm than good.

    It is so distressing to here of your losses; your dad too young and the loss of carefree youth which I rather took for granted. Your feelings are completely understandable and if you can find the right support to refocus on living life well then that worth fighting for. Please do follow up on more professional support but in the meanwhile me and the rest here have your back.

    Take care and enjoy the day.



  • Jo, as always you are a total tonic. Thank you. I hope you are having a great day and yes today I am trying to focus on living life well as you say and trying to focus on today only which has been pretty good so far symptoms wise. Just a few short episodes on sitting. Am going to go for a walk with the boys and listen to some music in our local park which is on every Sunday. Look forward to your email:) xx

  • I sarted with PAF at the age of 45 ( when I had ) two school aged children. 22 yrs later I have just started on anticoagulants due to my having my first ablation

  • Thank you Liz for replying. Can i ask were your symptoms regular? And did you worry about stroke? My symptoms are daily and i worry daily. Hope your ablation has helped:)

  • Hello Vony

    I started off having two or three bouts of AF a year. For the first couple of years I went to hospital as my symptoms are quite marked. Nomal heart rate 48 when in AF racing at 170. When I was not in AF I had normal SR and did not think about it at all. My attacks came ninety percent of the time in the early hours 1-2am and woke me up with a shock. I went quite a few times to A&E and had IV flecainide to cardiovert me. It soon became too disruptive to shoot off in the middle of the night so I read about a lady in Hans Larssens book.'ATrial fibrillation - towards a cure' who took a dose of 250mgs flecainide as a pip so I started doing this at home. I never seemed to have much involvment with any doctors and just kept doing this. After 22 years of this I had a very bad attack with blacking out and heart rate up to 230 . This lead to my having an ablation and staring apixaban.

    I can understand completely your worries.

    Also you seem to have a lot more episodes than I do . I had 2-3 ayear then up to 5-6 a year.

    I am 15 weeks post first ablation . It has not been straight forward for me so maybe I am the wrong one to talk about this as a lot of people have no trouble.

    I am having a lot of ectpics which I am not used to. And although they are not dangerous are disturbing me. I had post op oasophageal troubles and pleuritis.

    I think if you are worried as you are you should have the chance to take ACs if you want and it would relieve your stress.

    For many years I took Nattokinese - i think if you Google it you will find interesting reading

    All the best to you

  • Thanks Liz. I shall look up the Nattokinese. I hope you feel well very soon. I had an ablation last Oct and was awful after it and in hospital twice. I also had so many ectopics and lots of bigeminy rhythm after mine but it did settle eventually as I'm sure yours will too. Thanks for the reply. I appreciate it xx

  • Vony, I'm not on anticoagulants either and also decided myself to take a baby aspirin. Like Liz I take Nattokinase. I also take a decent dose of magnesium and other supplements.

    I'm 55 now and have had a fully investigated >15 years of varying amounts of ectopics, unsustained SVTs and short runs of PACs and PVCs, my last AF was in 2012. This was when I was eventually diagnosed with PAF during a traumatic episode. I then became obsessed with researching it and began taking the supplements after finding the AFibbers site with Hans Larssens and many others taking Nattokinase and magnesium.

    I completely understand you worrying over the stroke connection with your Dad, as my Mum died aged 54 of a 'heart attack'/ pulmonary embolism. She had had uninvestigated 'dizzy spells' and 'funny turns' for years before her death which I now suspect were arrhythmias of some sort, possibly AF. Like your Dad my Mum was a smoker too and this alone can make you at least as likely to have a stroke as AF does. If your dad had high blood pressure as a smoker, that would have made his stroke risk much higher.

    Found this on a stroke site;

    'Smokers are up to three times more likely to have a stroke than non-smokers.

    Smoking is particularly dangerous for people who have high blood pressure. They are five times more likely to have a stroke than smokers with normal blood pressure, and 20 times more than non-smokers with normal blood pressure.'

    Every time I see my EP, who knows my family history, I ask about anticoagulants and am actually rather pleased he says I don't need them. The Nattokinase is just in case😉

    Start today enjoying your lovely family and living your life knowing you have many years ahead of you.


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