Anticoagulants and activity and mental health... Oh my!

Hi all, thanks again for responding to my last post!

I have a couple more questions, surrounding how you deal with being on anticoagulants. As I mentioned, I'm a reasonably young woman (41), and up until my troubles, fairly active. My GP was the one to tell me about my Afib, And she assesed my CHADs-VASC score as 1 ( for gender). I have My first appointment with a cardiologist next week. My GP has put me on daily low dose aspirin until then. I will be bringing up the possibility of anticoagulants with the cardiologist, as the science seems to indicate that aspirin for Afib is useless.

I'm not going to lie, I am very afraid of both stroke, but also of bleeding, especially since I have some bleeding issues ( not limited to having a very heavy menses - sorry probably tmi). I was wondering, bleeding wise, how others have faired? How careful do you have to be with yourself? I would really like to start biking again, as my husband bought me a bike for x-mas...

Also, a change of topic here, but do any of you suffer from anxiety or depression in relation to your diagnosis? I just feel like I was socked in the gut by reality, and it's been really hard to function.

Again, thanks all.

Most sincerely

Jib

50 Replies

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  • I can't really comment on most of your post, being a 37 yr old guy who currently isn't on anticoagulants (although yes, aspirin isn't currently understood to help protect against fib-related stroke), but to answer your last point, anxiety wise it comes and goes (along with the breathlessness), but it's hard not to take a diagnosis as a ticking bomb or contract out on your head. I don't know if it's depression as such, but I certainly spend a lot of time thinking about AF, and the possible future effects on my life and family. Hopefully when it's more under control and becomes part of the daily routine of life, AF, anxiety and depression will recede into the background. In the meantime, just look after yourself and try, hard as it may be, to not let it affect your life too much.

  • Thanks Pikaia

    I'm certainly trying to take it all in stride, but you are right, it is daunting to contemplate the future.

    Best of luck to you as well, hopefully we will find our way :)

  • Yes I get anxious. I think only because I've had this for 4 years and it's now progressing. However I never fear a stroke as I'm well controlled with warfarin and test myself at home. Peace of mind there. However recently my af and ectopics have become more troublesome so I'm back to cardiology. It's worrying but I'm also going for CBT.

    I have excellent support from family and doctors. I live in hope I can find a beta blocker that doesn't knock me sideways or I get a procedure to 'fix' 'me.

  • Thanks,

    I'm glad you have good support, it makes a big difference!

  • Im 11 years on Sintrom (blood thinner) im 45 years old.Im takingblood thinner bc of mitral mechanic valve..I check and dosage my dosage by myself..It not eassy being of warfarine but you get to adjust yourself.My Inr should stay 2.5 till 3.5 and in the afib the INR should be 2 till 3, which iseasier to maintain that numbers..Last June i was in ER bc of a.fib..they couldnt control with medications so on 22 August i had the catheter ablation..Since then I have ectopic heart beats which are more if Im stressed but I never had afib again..

    I stop checking my heart rate and try to have a normal life..

  • Hi,

    Anti coagulation is a matter of weighing up the risks - which is most likely heavy bleeding or a stroke. The score helps with this. For me my score is 0 and I have an active life been 41 so for me the balance goes to no anti coagulation. As well as considering that heavy bleeding can be stopped (pressure / elevation) and some of the medicines have reversal agents. Regards biking balance the risks - do you often fall off? How tricky is the terrain? Do you wear a helmet?

    As for anxiety that is a definite yes! It improves with time. Things that help are reading up and gaining a good understanding of AF - it is not life threatening. As you already know stroke is the main risk. Breathing exercises can help and don't get into the habit of constant checking your pulse. The other thing is what you're doing - talk and ask questions. CBT and mindfulness can help too.

  • Good advice :). Yes, I think part of my problem is over-checking, I do need to stop that.

    As for the biking, I haven't done it In a while, so I may spend more time on the pavement than on the bike!

  • I'm 47 and diagnosed last year and am on Bisoprolol and Apixaban (I was due to come off Apixaban this month). For me its a constant worry and has affected me emotionally - the person prior to 13th May 2016 is gone. Now trying to be the new healthier me (not that I was particularly unhealthy before) and live for the moment.

  • I can understand where you are coming from. It's nearly impossible not to think about it, and not have it affect you. A terrifying reminder of mortality. I'm glad you are finding a new healthy lifestyle to embrace.

  • Jib really sorry to hear all of this for you. But take heart, many of us on this forum have felt exactly the same way until you get used to the diagnosis of AF and realise it is not as scary or threatening as it first seems. If you have a Chads2vasc score of 1 and that is only because you are female, then current evidence and research would say your score is really zero (because your score of 1 is based on gender alone). I am in the same position as you. Score of 1 due to gender. I am 38 and have AF every day at some stage of the day. I am on anticoagulants now because of an episode of hand weakness following a road traffic accident last year. I was treated with anticoagulation as a precaution in case it had been a TIA. Because of all my anxiety about stroke and that episode (which turned out to be damage from the car accident) I was kept on it. But now.. I worry about bleeds. Especially if I have a few glasses of wine. What I would say to you though is do not worry for now. You are extremely low risk and you can have this discussion with a cardiologist or EP. Your doc was wrong to put you on aspirin for just AF. It is of no use unless in very high doses possibly. Use this forum for the anxiety. Many of us understand and you are amongst friends:) live your life and enjoy times of being in normal sinus rhythm. Best wishes xx

  • Thank you for your thoughtful response Vony :)

    I really love this forum, everyone is so kind and responsive. You have all been a big help.

  • Hi jib, I have been taking apixaban for over two years now and dabigatran prior to that. I have had no bleed issues during that time and have suffered the usual knocks and scrapes throughout. For me the stroke risk far outweighs the fear of a bleed. The Noacs have a short life, i.e. a 12 hour cycle for most, plus a couple of them have antidotes, so whilst I have a concern about most of the drugs I am taking, apixaban is definitely the one I depend upon the most.

    As to the anxiety and depression, yes, when first diagnosed I felt grief stricken and in a very dark place. But the people on this website helped me to see that in fact my life hadn't ended. Many have developed much healthier lifestyles, exercise routines and an enhanced understanding of what really matters. However it does take time and a sock in the gut is a great way to describe the initial shock.

    There are many keen cyclists on this site and I hope some of them will chip in. Meantime, oil that chain and plan your routes, there is no reason not to ride the BMX.

  • Thanks for your kind response. I very much appreciate it :)

  • Hi Jfib, a lot of what was said to mcknightded earlier would seem to apply here too……as far as cycling is concerned, I guess you are worried about the consequences of falling off!! If it’s any help, I have taken Warfarin in the past and am now use Apixaban and normal bangs, scraps and cuts have not been a problem….maybe it takes a little longer to stop the bleeding, but the difference, for me anyway, has been negligible. I guess it would be sensible to avoid bare flesh where possible, but avoiding falling off would be so much better!!

    As far as anxiety and depression is concerned, they do tend to go hand in hand with AF, particularly if folk have enjoyed good general health prior to diagnosis. Generally, we are all scared to find out that the only heart we have isn’t functioning correctly and then the mind goes into overdrive. It’s often compounded by the effects of medication and the fear of stroke and internal bleeds and all the associated bits of bad news that comes with the territory. Unfortunately, there is no magic wand, but the good news is that most people come to terms with it and tend to lead relatively normal lives. It is commonly accepted that people do not die with AF……also, over 1 million folks have AF in the UK and more have it and don’t know it. There are only 7000 people on this forum and only a relatively small proportion of them are active, so maybe there is some truth that people do tend to cope reasonably well with AF….hope this helps…….John

  • Thanks John, the support really does help. It's always good to hear that others are doing well, it gives. Hope!

  • Anxiety and AF are common bed fellows I'm afraid and many people struggle to come to terms with it. For my own part I have also had cancer and trust me when I say I worry more about AF coming back than cancer. Stupid Boy PIke!

    As far as activity is concerned although retired I still work when I feel like it building race car engines which involves machining metal components and working with often quite sharp metal objects as well as assembling and testing these gems. I do occasionally knock bits off myself but in the last eleven years have yet to need hospital attention for any of my injuries. The amount of steel swarf embedded in my hands would build a small car! My point is that for me at any rate warfarin has not changed my life or what I do one iota. The one area where I do take care is head injuries although even there I have to confess that when riding my bike at race meetings to get around I never wear a helmet. Naughty boy I know.

    We are all different but my philosophy is to live life to the full and not let AF or anything else get in the way.

  • I was on warfarin for years, and lately Apixaban. I'm a livestock farmer handling cattle, sheep, sharp objects and machinery all day every day. Cuts and bruises were almost a daily occurrence (I say were, because I'm now retired....yippeee 😃).

    Anyhow, can't say I noticed that much difference in either cuts or bruises, all seemed to heal up OK if a little slower. I found any bleeding to be simply normal, but a little slower to stop. So a plaster might have to stay on a day or two longer, that sort of thing.

    Koll

  • Thanks! This is good information to know. I was worried I might have to live in a bubble and never get a bruise I'm embarrass to say, lol.

  • I have been taking Apixaban for over 3 years as my score is 2 - female and over 65. I notice no bruising or unprovoked bleeding but cuts take about twice as long to stop and it's just a matter of getting used to that. I'm now more safety-conscious when I use a kitchen knife, so that's a plus.

    Anxiety after diagnosis is a demon we all share. To go from being 'normal' to having 'a heart problem' in an instant was a terrible shock and I was certain I was either going to die or never have any life again. What helped me - apart from obviously not seeming to expire on the spot - was a very competent EP who set a treatment plan in motion and gave me hope.

    Sharing ideas, treatment and thoughts with fellow AF people is also a great help as it is good to know that others can cope with the same - and often much worse - symptoms. There are actually times when I forget for days that I have 'a heart problem' and that alone makes me feel good!!

    Best wishes

  • Hi Finvola

    "in an instant was a terrible shock and I was certain I was either going to die or never have any life again"

    This is exactly what I am feeling, I couldn't have said it better. I'm so glad things got better for you. I hope they will for me too.

    Thanks for responding, you are all wonderful :)

  • Anticoagulation is a double edged sword. It decreases your risk of stroke and increases your risk of bleeding and when it was suggested to me I was not in favour of it although, as I was 66 and scored 3, it was entirely appropriate. It took over my life, felt like taking poison and made me feel moribund. I was very cross, scared of going anywhere or doing anything and quite convinced I would have a fatal haemorrhage and had no more than days left to live. I didn't feel normal any more and hated having a little card to carry round and a medical bracelet. My enjoyment of life had gone and all I had on my calendar was hospital or surgery appointments. But nothing happened and I found this forum and I have been informed and enlightened.

    Three years on, I've moved forwards in various directions. Injuries haven't been serious and there have been no disasters so I'm not just much more at ease, I'm back to being myself again. I also feel very lucky to be where I am right now.

  • Hi Rellim296

    So glad to hear things have improved for you! I am hoping I will get there too one day.

    Thanks!

  • I'm sure you will. The start of the AF journey is the hardest bit and it takes time to absorb, adjust and start to move forward. The forum is a great source of understanding, knowledge, support - and a range of opinions.

  • As others have said AF and anxiety seem to go hand in hand. I have had the condition for over 20 years and have not altered my lifestyle very much. I have just turned 65 and all the best advice says take an anti coag so I reluctantly am. I will however continue to live as normal as poss including cycling which I love. As my cardio told me, the chances of a big bleed are way way smaller than suffering a stroke.

    Live your life, we have AF it could be worse.

  • Good advice! Thanks John :)

  • I think it's only natural to be anxious when someone tells you your heart has gone wrong... But you do get to the stage where you think 'okay, I've not died from it yet so I'm going to live with it...' I am a lot more grateful for every day than I used to be, which I don't think is a bad thing.

    As for anticoagulants, I'm 60 this year, score of 1, and have been on warfarin for a couple of years. My choice - I have a cousin who also has AF and had several TIAs at around 57-58, so I felt in my case the risk outweighed the dangers of bleeding (there is also a HAS-BLED scorer, like CHADSVASC, where you can score your risk of bleeding, if you Google that you'll find it).

    I just carry on as normal, have had AF since age 54, and I haven't yet (touch wood) injured or cut myself seriously enough to cause an issue. I have had the usual scrapes and little cuts and while they have taken a bit longer to stop bleeding, it's not been anything drastic. I have got to the stage where I just live my life. I plan to make the most of what I have - after all, I could get run over by a bus tomorrow and then I'd be really embarrassed that I'd wasted all this time worrying about AF! :) Sorry, probably a weird way to look at things, but it helps me...

  • Lol, no not a weird way to look at things, you are wise, thanks!!

  • Well, back in 2012 I was touring Europe when I had a TIA. I promise you, the lasting damage that caused is life changing. It wasn't even a full blown stroke but I failed to seek medical attention immediately, my fault entirely. By the time I got home, the clot in my brain stem from the AF (undiagnosed at that time), had done its worst.

    Anticoagulants every time. I never think about a bleed.

  • I'm so sorry about what happened to you. Thanks for the advice.

  • Can't add anything to the posts above but I can't resist quoting my Grandma 'A creaking door lasts the longest'.

  • Never heard that gem before, now that I am a grandparent I will have to pinch it!

  • Hi Jfib; for most of my 70 years I have been a bleed risk from haemangioma on my tongue and that is why an EP in 2014 said that I shouldn't take an anticoagulant for PAF. I had a stroke in 2014 and they had to delay thrombolysis until a second CT scan had determined if haemangioma were in my brain, as if they were, thrombolysis would probably have caused a major bleed and death. Since the stroke I take the NOAC Pradaxa (Dabigatran) that has a reversing agent Praxbind that can be administered in hospital if there is a severe bleed. I was in hospital recently and the inevitable canula in my arm didn't cause a bleed on the way in or on the way out. My activities include clearing scrub in a nature reserve where I use a razor sharp billhook and a bow saw with rip teeth; I do wear Kevlar sleeves and gloves as protection. Later this year I will be using a professional motorised hedge cutter and brushcutter. I'm probably stupid but life is out there. I've just heard that I can apply to have my rescinded licence (I'm blind on one side after the stroke) reviewed in the summer.

    Good luck with the cycling.

    John

  • You're right, life is out there. You're blind on one side, I'm deaf/tinnitus and facial nerve damage and balance issues from TIA on one side. Sent to try us, but life is good.

  • My tinnitus was probably caused by dancing too close to the house PA "when I were ut' lad". In 2014 I was told that I had been close to death after a reaction to dronedarone and amiodarone and, that the prognosis was not good. However I'm here, I'm in good shape despite the stroke and I'm loved. It doesn't get much better than that, so let's get out there and enjoy it. My ex-yoga teacher tells me that we have more than this life and she's not referring to Prof. Brian Cox's view on quantum physics. Either way, let's not blow it by being down and saying why me. After all, I won't be saying why me if the Lottery comes up with a few millions!

  • Thanks for the information :)

    I'm glad that you are able to continue to do what you enjoy!

  • Hi Jfib,

    Aspirin has a higher risk of brain bleeding than well controlled warfarin. I'm a keen cyclist and have a Chads2vasc score of 2 so I'm on warfarin. But that hasn't stopped my going out on my bike. If I were 41 and no risk factors other than female I wouldn't go on anti-coags. In 15 years time then I would reconsider.

    If you do decide to go on warfarin then do get a Coaguchek to make sure your INR is always in the 2-3 range.

    Mark

  • Thanks Mark,

    Good information :)

  • Hello jfib,

    I do understand the anxiety, I am 72 and was very active when I was diagnosed 18 mths ago. I rode my bike and walked a lot. I too take Apixiban and Adizem and became very anxious about falling and having a bleed since unlike Warfarin their isn't an antidote. Having a stroke crossed my mind so I weighed up the balance and took some advice from this site. I realised it wasn't healthy to put my active life on hold through my fear, so I now have my bike on a trainer in my conservatory which I use most days, and I now walk as I used to. I was low and afraid at the beginning, but really, I believe you will grow in confidence as you get your head round your diagnosis. Keeping active is the key. If I have an attack whilst walking I walk through it, it works for me.

  • I hope I can get to that point where an attack won't give me a panic attack! They are terrifying!

    So glad to hear that you are doing well though.

  • My mother is 90 yrs old and has had afib for over 25 yrs. She is on 2.5 mg 2x a day because she has a risk for bleeding at her age. Maybe your doctor would agree to you taking that amount too?

  • Perhaps, I will be enquiring for sure!

  • I love you folks! Let's carry on living life.

  • I have much more anxiety since I have been diagnosed and depressed too. I have always been a worrier but find I am worse now. I am aware of my heart all the time. My first thought on a morning and last thing at night is my AF. I have tried not to think about it but cant help it. The support on this sight has been amazing. Don't know what I would do without it. Kate .

  • I feel the same, in all respects. Thank goodness for this site and all you wonderful people!

  • Hi Jfib

    i have just seen your post and wanted to reply as i can empathise with what you say.

    I am a fit and active 69 year old female - I did not retire until I was 67. Almost straight away I was diagnosed with PAF Chad score of 2.Looking back I know I had the condition for years before. I was put on Apixoban and felt totally miserable. Spent the first weeks thinking the end of my life was round the corner, constantly looking for a bleed and hated taking the pills each morning and evening.

    Moving on 9 months I hardly think about Afib. So far I am fortunate I only have occasional bouts. I know they say it is progressive with age but i shall worry about that when it happens. I can still drink red wine and decaf coffee without problems. I am a very busy person and keep fit walking at least 6 miles a day. Best of all I was still able to go on holiday to Northern India last November. It had been booked before diagnosis and I was sure i would not be able to go and if I did something terrible would happen!! It was a full on trip with three internal flights and we were on the go the whole time.So pleased I did not give in to horrible AF and now planning next trip.

    Re bleeding with Apixoban, I can be quite clumsy and have cut myself several times with no problems. Few more bruises perhaps but nothing that worries me.

    SO please try not to worry. This is a fabulous site. I don't post much but its very reassuring to dip into every now and then. Everyone one is so kind and helpful.

    Look after yourself x

  • Thanks Foxglove1 for your thoughtful reply. I really appreciate it :)

  • Hello Jfib. I'm a bit late responding, but have only just seen your post, (as I now get the weekly digest, rather than daily). I really want to emphasise what all the other kind and helpful people here have been saying. I think all of us felt shocked and depressed when first diagnosed. I had a Chadsvasc score of 4 and was told I had a v. high stroke risk, so was put on Warfarin, then a betablocker (Atenolol), lined up for a cardioversion and later a possible ablation. I was (literally) suicidal until I discovered this wonderful site. I felt as if my life was over, but the wise and supportive responses I received here helped me get through the first couple of months and encouraged me to become well-informed about the condition and the available treatments.

    6 months later, I feel amazingly well, cheerful and positive. You do get the odd twinges, flutters and thumps, but you learn to recognise them and stop panicking. The bleeding problem is scary at first, but as others have said, even if you do cut or bump yourself, you learn to manage it, and apart from extra bruises and longer healing times, you're just your old self. The various medications may cause side-effects, but again, after time your body seems to adjust - and if not, there are alternatives, so stay in close contact with your GP, and become an expert yourself on AF and its treatments. Never be afraid to ask for information or reassurance on this site - we are all here to help.

    Sending you my best wishes and a virtual hug.

    Pat.

  • Thank you Pat, for your kind response. I am so glad that things are going well for you now! I am constantly blown away by the kindness and generosity of this community and it's members. You certainly have all helped me!

  • Hi,

    I was 51 when diagnosed with AF.

    Put on warfarin and bisoporal - awaiting a cardio version.

    When I went in for that procedure my heart was beating normally at that point.

    So taken off warfarin and bisoporal reduced.

    6 weeks later has an ischaemic ( clot) stroke affected balance & co- ordination on right side.

    End result - not allowed back to work ( teaching) so took ill

    Let's retirement.

    As yet, and hopefully never, no problems with bleeding ( though a tooth extraction did take a while to stop bleeding - a stitch put that right).

    On warfarin for life or maybe a different anti-coagulant.

    No depression etc .

    I am sure biking would be ok - wear all safety gear & be aware.

    Because of dodgy knees - beginnings of arthritis I am very limited what I can take ( no anti-inflamatories etc)

    So on a ski- Ing holiday with my sister but I am the non-skiing skier ☹️ But so very tempted.

    Someone need to work on painkillers / preventers for us on anti- coagulants.

    However to buy or not to a beautiful ski jacket ?

    Best of luck with whatever you decide.

  • Oops forgot add - before my stroke my score was 0 - but had a stroke ..... I am sure many/some do not have a stroke - guess I was standing in the wrong place at the wrong time ( Tesco Xmas food shopping - seeking out full fat from age fraud for a dip I was going to make !!! )

    Avoid Tesco .... ?

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