I was taking Apixaban for paroxysmal AF after a catheter ablation several years ago, which mostly cured me of the debilitating bouts of AF which I was suffering. The paroxysmal AF was hard for me to notice but detected by a monitor, and 'self terminating', so I declined Flecainide as I didn't fancy the side effects. I have now (6.12.2021) had an intracerebral brain haemorrhage (ICH) - otherwise known as a stroke. The Consultant stopped my anti-coagulant and started blood pressure medication Amlodipine. I came home from hospital after 2.5 weeks to the Early Stroke Discharge Programme which gave regular visit by physios and OTs until last week. I will be contacted by the Community Physios/OTs in due course but I have plenty of advice on exercise and rehabilitation to be going on with. However I am feeling abandoned and anxious, hence turning back to this forum which I have neglected for the last few years.
I have been noticing palpitations increasing these last few days which could well be due to stress. As you all know, AF feels like a panic attack. It's not as bad as before the ablation but I wonder whether to start the Flecainide? I will be talking to my GP later today and have an appointment with the Electro Cardiologist on 28th Feb.
Thanks for any advice. By the way I am 70, the stroke happened 3 days after my birthday and I had been celebrating with various groups of friends in the build up. I am not blaming Apixaban though the consultant seemed to think it was a factor.
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BossLass
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Anticoagulation is always a balance and yes it is true that there will always be a small percentage of people taking anticoaguants who may have a haemorhagic stroke against the many thousands who are protected from clots.
Since many people have silent AF and are unaware it is still important to take the advice of your consultant,
I do hope your recovery continues well and suggest that you also visit the Stroke forum of healthunlocked as well for more support.
Thank you for your reply. I have set up a profile on the Stroke Forum but haven't posted yet, still feeling my way. There are so many different experiences on there!
I wish there was a way to detect/confirm AF at home. I just took my blood pressure which is within the desired range and pulse reads 61bpm but somehow feels worse - like my heart is bouncing .... Yesterday it was 85bpm which is a bit high for me but in the bad old days I got much higher.
There is a home ECG device that works with a smartphone or tablet computer, (Android and Apple devices). It is approved by NICE. If you put Kardia in the search box there have been many discussions about it.
Good to know, thanks. I might invest in one but don't want to get too obsessive. The thing is, if I confirm AF, what do I do about it? My GP has just prescribed Flecainide which should regularise HR. At first he offered Bisoprolol but I took that once before and it slowed my heart to the point where I felt I'd ground to a halt. So I will start on the new pill tomorrow and see how that goes before seeing consultant on 28th. Then see what he advises about home monitoring. Thanks for letting me know it's possible.
Flecainide can work well but is usually taken in conjunction with a rate controller because it tends to increase the HR. Do check this with your cardiologist. I take mine with a calcium channel blockers which also controls my BP. Very sorry to read about the stroke. Our brains are clever and with the right rehabilitation you may recover really well. And get yourself the Kardiamobile- you don't have to obsess - I use mine twice a day and then check if I feel AF coming on. You need peace of mind to recover.
This is the cheaper version that I and my Consultant has, he says it is perfectly good. You can get the newer 6L if you can afford it.
AliveCor KardiaMobile ECG Monitor | FDA-Cleared | Wireless Personal ECG | Works with Smartphone | Detects AFib Bradycardia and Tachycardia in 30 Seconds smile.amazon.co.uk/dp/B01A4...
I tecebought a Apple Watch, version 6. The 2 top spec ones have fall facility depending on finances. I considered it for a while before getting one to replace my Fitbit and I’m quite pleased with it.
I was on a very gradually rising dose of Flecainide in its own for about 13 years, and it was very effective in controlling, almost totally preventing, AF for me. Latterly I added the lowest dose of bisiprolol because the alternative was more Flecainide, which was then at 200mg pd, which my cardio said was ok but best to avoid higher. I am v grateful for the invention of Flecainide, it never misbehaved for me, gave me a normal life, and in a v stressful job, for 15 years. Now I have come off Flecainide after cryoablation, fingers crossed, so far so good.
I’m so sorry to hear about your stroke. I’d always thought that Apixaban would protect you…My BP monitor is an old Boots one, but it is a Godsend because there’s a symbol which shows when I have AFib.
Did you have any side effects of the stroke? It can be quite common to have a visual impairment such as a reduction in part of your peripheral vision (I'm speaking from experience). It's common for us stroke survivors to grieve for the person that we were. Support for us tends to be patchy to non-existent. When the time is right, aerobic exercise will provide freshly oxygenated blood to your brain. If you have problems with reading text, that will probably clear. The great thing is that you are still here😊
Thanks, I think I got off pretty lightly compared to some on here. I was already mostly blind on the right side due to a detached and damaged retina but somehow it feels worse, probably due to numbness and tingling in my head (on and off). I get very tired and breathless after not much effort and suspect the AF is not helping but have started on Flecanaide and will see how that goes. Thanks for the sympathy and yes, grateful to be STILL HERE!
Kardia is the name of the home ECG. It is so easy to use and you can send the results by email to your cardiologist. Mark Spitz the former US Olympian swimmer (7 gold medals!) is the brand ambassador for Kardia. I really do recommend having the Kardia device.
Normally i am not a fan of self monitoring as I think it can increase stress and symptoms but In your case it might be worth getting a kardia monitor or even one of the new smart watches that whilst not Medical grade are probably good enough to prompt you to get checked when needed
I'm so sorry to hear this. Stroke is what we all fear. I hope you will be getting plenty of support. How has the stroke affected you? Was your blood pressure OK before all this, as far as you know ?
I note that you had been out celebrating your 70th.....had much alcohol been consumed, (daft question 😏)....wondering if that had an interaction with Apixaban. Whatever, it has happened and you obviously need some extra support now. I do hope that you will get a response from anyone on this forum who has been in this position . Bob has suggested the Stroke Forum of HU.
Hi there, the stroke was a brain bleed which kind of disabled my right side. After 2 months I am recovering but still experience weakness, numbness, tingling and sometimes pain (after overdoing things) plus breathlessness and fatigue. High blood pressure was diagnosed and I now take Amlodopine which has it under control but taking Apixaban is apparently now a greater risk than the thrombosis it was preventing. Don't be put off taking it, I'm sure my blood pressure and alcohol intake were bigger factors. I'm also a bit overweight at 76 kg and love my salt.
I used to monitor my alcohol and stick to 20 units a week when that was advised but when the guidance was reduced to 14 units a week I threw caution the winds as I felt that was impossible. I regret it now.
I am using the Stroke Association forum but will look for the HU one, thanks. Didn't realise there were two ...
Thanks Bob. I didnt know anticoagulant & alchohol together can cause bleeds. Thats seriously scary. I have never drunk much so for me cutting alchohol was easy but I'd been thinking it was because alchohol iritated the P-Afib. I do have the odd drink (maybe as much as 1 per month! 🤣) Given this new knowledge sounds dodgy to drink any at all.
The Stroke Association can be helpful, but don't have a policy on driving after a stroke. I've just finished a session as a participant in a Stroke Association Focus Group. You will find that Universities and clinicians look for stroke survivors to participate in stroke studies.
Don't blame yourself for the causes of a stroke. I was a very fit 70kg gym bunny with a history of various cardio exercise, non-smoker, 3 units of alcohol a week. A stroke hit me just before I was 70.
So sorry to hear this news Bosslass. How are you feeling now and did you get any warning signs that it was going to happen? Hope you don't mind me asking, but what effect did it have on you? I certainly hope you're feeling well now.
There's a member on this forum who may be able to empathise with you. I'll give her a nudge CDreamer . I feel sure she will reply here to you.
Hi, no warning at all. I was lying in bed, felt numbness and decided to get up thinking it was extreme pins and needles after lying next to John too long in same position and FELL DOWN, couldn't get up. Realised something wrong and called ambulance. Terrifying experience but no pain at that point.
Oh wow, I wonder if at that stage you hadn't got out of bed what would have happened. Are you fully recovered now and are you still taking an anticoagulant? Was your husband awake when you fell?
The consultant at the hospital stopped my anticoagulants and I am seeing the Electrocardiologist who did my ablation (6 years ago?) about how to proceed. Meantime I am about to start on Flecainide which should help with the AF. I have made progress with recovery, can walk short distances without a stick and have regained some use of arm and hand but nowhere near normal as yet. Onwards and upwards!
I had to get out to go to the loo. Didn't make it, of course, but that was the least of my worries! Yes, John at first wondered what on earth I was playing at but once he realised he got me sorted and ready for the ambulance. I am very lucky to have a fit partner, even though he's older than me.
Hi Bosslass, so sorry to hear about your stroke! Trust you get the help and support as you navigate this change in your life. Just a thought my hubby has AF and flutter and it shows on his BP and heart monitor with a little double heart symbol. He uses an Omicron M3 monitor. Bless you
Hi I was on Apixaban for a couple of years with PAF but in 2019 i developed terrible pains in my left arm and it went cold and white, my husband rang an ambulance as i was crying with the pain, rushed to hospital and i had a blood clot in my brachial artery which they had to remove. The consultant said i was very very lucky that it hadnt gone to my lungs or my brain! I said what about my heart? he said my heart had produced it, but he took me off Apixaban and put me on warfarin. I told him i didn't want the inconvenience of warfarin but he said did i want convenience or safety? I said safety well its warfarin then!!
I'm on warfarin and haematologist asked why I'm not on Apixaban or other DOAC. I said I was happy with it and have my own testing kit so limited hassle! You might like to look in to this , saves going to and fro to surgery for tests. It's called Coaguchek by Roche
Been on warfarin for 17 years with zero problems and frecentl;y got my own Coaguchek, thought only use it when instructed by clinic or if I have any strange diet for a while.
i will look into that i have been going to and from the hospital for two years now as the surgery at my gp only does the sample from your arm which is then sent off!!! Hosp do it there and then
You're right BossLass. It wouldn't be correct to blame Apixaban for your stroke. It's true that it isn't 100% effective at stopping all strokes, but for sure, in the majority of cases, it does prevent clot formation and thereby stroke. It's such a shame that you are one of a minority who did have a stroke despite having had good compliance with taking Apixaban, and I think it's a fear that many of us have. But it always needs gently stating that, (depending on your risk factor, assessed by CHADS2 score), without the Apixaban and with AF you're five times more likely to have a stroke than the average person with no AF.
Hi , I have been on eliquest and flecainide for about a year with occasional ectopic beats but most of the time it’s been a life changer. I do have to be careful with the eliquest as i’m 73 and a little unsteady at times. I also take a beta blocker and amilodipine…. Probably why i’m unsteady.😁wishing you the best in finding what works for you.
I’ve been AFib free since my Cardioversion 5 months ago but there are times when I’m flapping over something that I think it’s started up again! I’ve kept the Ap Fibricheck in my phone (can’t get my head around complicated watches etc)which I used to monitor my AF and show/email readings/graphs etc. to my doctor. It’s very easy to use. If I’m in a flap about something (eg I’ve just been on a course with exam) I feel as if I’m having palpitations but I open the Ap, hold my forefinger against camera lense and I see my heart readings etc in real time. I can store readings on Ap or forward on to GP. but seeing a normal readout is really reassuring.
Hi I’m 75 and have had AF for 15 years or more. Refused an ablation as I’d read of the hazards. Asked to take Fleccanide as it’s the best one from the choice. Would never take amiodorone, that’s a toxic drug.
Fleccanide was great at managing my AF and I had no side effects, but it’s not a cure and after 10 years on Fleccanide I had a pacemaker fitted for my slow beat which was happening intermittently with my AF, which by then had become permanent.
My pacemaker works well, I don’t need Fleccanide now as I’m beyond that, it wouldn’t help, I’m always in AF but my PM corrects the low beats, I take Bisoprolol 10mg to slow my PM if it wants to race and apixaban to stop blood cloths.
All is good. I wouldn’t want an ablation but would never come off apixaban as I had a stroke before I knew I had AF in my 50s.
If you had a brain bleed that was most likely your apixaban because you hadn’t been following the guidelines of what not to mix with it. The risk of haemorrhage is there if you drink alcohol etc. it is a powerful drug but much less dangerous than warfarin which can be affected by so many foods etc.
Talk to your cardiologist and take information from the many on here who have the same problem. Everyone is different and side effects come with all drugs but not to everyone.
I would recommend Fleccanide and Apixaban every time. Side effects are far less dangerous in most cases than a blood clot.
Thanks for the advice, I will certainly discuss it. However the catheter ablation in 2016 went very smoothly and stopped the worst of my AF. Even now it's manageable, though noticeable. Hard to know what is the result of the stroke and what is underlying. Time will tell now that I am on Flecainide,
So sad for you. I take Dabigatran with Flecainide and Nebivolol and I’m 78. I wear an Apple Watch which tells me if I’m having an AF episode. Perhaps one would set your mind at rest.
Hi Hylda,I have the Apple Watch. I used to get the afib notification, but now I’ve been in AF several times with no notification. When I do the ecg on the watch it will say AF. Do you still get the alert or only when you check it?
Do you do the updates to your watch when prompted? It's important that you do that. Also, if an app starts to not work as it should, reboot the watch. That rests everything.
Thanks. The Flecainide was prescribed by the EP years ago but I declined it as I felt the Apixaban was sufficient protection and the occasional flutter I experienced didn't trouble me, though the hospital monitor detected PAF. I hate to take pills and I though it was something I could have in reserve for if it got worse, like now. The GP seemed to agree with me at the time ...
Sorry to hear about your stroke. Blood pressure is inextricably linked with AF and so with strokes.I personally am on Flacainide -it just regulates your heart beat but not the speed- and thankfully have no side effects.I also am on Rivaroxaban and Losartan which is a blood pressure med.
I was on Amlodipine but found that one of the side effects was aswelling of the legs.
I think a combination of a blood anti coagulant drug together with AF and Blood pressure drugs are the way to go.
Of course speak with your cardiologist and good luck.
Thanks for the advice, I do experience a bit of leg swelling but attributed that to the stroke as it is only the right leg. I will bear that in mind, though.
Sorry to hear about your stroke because of bleeding. You would need a multi specialty team between a neurologist and an EP to take care of your special case. It appears you still have Afib, so the risks of strokes by blood clots are still there. The medic team might propose a watchman device closure of your left atrial appendage. The device still requires a regimen of anti platelets after the procedure until it gets covered by a layer of cells. So the dilemma is there since you cannot take anti platelets or anticoagulants. Go back to Apixaban side effects. It does not cause bleeding. It makes bleedings worse. Brain bleedings usually are caused by high blood pressure. So for folks who are taking anticoagulants please pay close attention to your BP. Salted diet and alcohol are the biggest culprits to cause BP to jump to 220 or more and it could cause a weak vessel in the brain to burst (aneurysm). If you need medication for your blood pressure please take it. High blood pressure is a silent killer. Out of 10 strokes, nine are caused by blood clots and one by brain bleedings. Blood clots can cause by fat plaques detached from the arteries walls and go to the brain too, so to emphasize on a life style changes in your diet. If you need to take statins for your cholesterol please see with your medic.
I’m sorry to hear all of this. I took flecanaide before I had my ablation. It was a life saver for me personally. I only took a blood thinner Apixaban for 3 months after my ablation and now take vitamin E to thin my blood. My procedure was nearly 3 years ago and I have been a fib free since then. My electro cardiologist believes my risk of stroke is nearly that of the main population. Fortunately since the ablation I have normal BP which was off the charts prior. Everyone is different. I personally do not like Blood Thinners. I see many issues with them mostly what you have experienced. I hope you are on the mend.
I think your post title is misleading as you had a brain bleed while on Apixaban. Yes, I know what the incident, was but you have to read a lot of posts before finding out. Good luck staying off the salt and alcohol. Do more exercise and eat healthily.
Hi Roy I'm not sure what you mean and I don't know if it's possible or advisable to change it. I have been overwhelmed by the response. I want to update all these well wishers in a couple of weeks as to how I'm progressing and what the consultant advises (28 Feb but with luck I will be away 1-4 March) but don't know whether I should add to here or start a fresh post. Advice welcome!
Your original post makes it sound like you had a clotting stroke, not a bleed. You do explain that more fully after about 10 posts I know, but it causes a lot of confusion before then. Contact Admin they may be able to help with the title.
Your post is not misleading at all. It says exactly what happened to you.
Sorry I didn’t respond earlier but I hope you are feeling better. You sound like you’re going through a really hard time health wise and trying to find a way through. I’m nowhere near as poorly as you as I responded well to Cardioversion and still AF free. Stress was def the driver for me so have to be careful not to get uptight. I was studying and struggling with it (I’m in my 70’s) I also stopped alcohol as it is a stimulant. Life after a bout of AF a lot more boring but I don’t want to relapse. Keep speaking to folks here is a good forum however often you use it. Good luck🤞
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AF and stroke 
Apixaban and risk of TIA
Off Apixaban
3 month post Ablation. EP say to stop taking apixaban.
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