Atypical stroke after many years of AF

This week I had a stroke after many years of AF but I didn't present with typical stroke symptoms, nor was it during or after a hard gym session where I frequently sustain AF at or above 200 bpm. My CHADVASC had been scored at 1 by an EP and 1.5 by another EP. Dronedarone and amiodarone had placed me "close to death" two years ago and, I'm a bleed risk so I was only taking 5mg amlodipine. Lifting a small bag of compost I fell but didn't pass out, my face didn't drop and I didn't lose function or consciousnesss. My wife called 999 but it wasn't until my answers were confused that this became a blue light run to the brilliant stroke team at Southmead Hospital, Bristol led by the wonderful Dr. Martinovic. It's thanks to them that I've only lost the sight in my right eye. That's not a problem as our 40+ daughter was been unsighted in her right eye from birth and it's never stopped her from anything. The important point here is that if you have AF or know someone who does, don't think that a stroke is signified by paralysis and a droped face. Treat it as a potential stroke.

That's another forum to join then to help me to adjust to this somewhat unfamiliar, but familiar world. Apologies for any weird spelling!

30 Replies

  • So sorry to read about that John-Boy. For those who are not at significant bleed risk this is a salutary reminder of the importance of anticoagulation.

  • John

    Very sorry to hear this and particularly about your eye - but at least your prompt action did not make it worse.

    You make very salient points re the stroke symptoms in that all of the common ones advertised do NOT have to be present for someone having a stroke. I had to dial 999 at the beginning of may because I had absolutely blinding head and tingling / numbness in right hand. Again it was only when paramedics tested me that they found other things not 100% (though I was not confused). They and the A&E weren't sure whether it was a stroke or bleed or something(s) else. In the end no bleed and no stroke.

    Incidentally my dad was born blind in 1929 due to my grandmother taking anti- morning sickness medication. He had numerous operations as a baby and child and sight was restored in left eye. However it was weird because although almost no sight in right eye if just looking through that one however when right eye was covered up sight in left deteriorated. He was able to drive, etc.

    Good luck in your rehabilitation.

  • Thank you to Bob and Peter for their posts. It's another learning stage in life. I hope that my experience can help others so that if a stroke happens, they can get the right treatment within that critical three hour window. From time to time I've had the painless migraine with visual colours that I believe is due to restricted blood flow to the back of the head. So this is perhaps no surprise. I'm grateful for the wonderful team at Southmead.

  • Thank you for this post. I am sorry to hear about your stroke but it is helpful to know about your experience. Could you say what you were told about the visual disturbances? Are they accepted as a precursor of stroke or does migraine predispose you to stroke. Like several others on this forum I have had 2 episodes of "aura" no headache after ablation. TIA clinic said probably not TIA. GP suspects atypical migraine but has referred me to a neurologist. Unlike you I am on warfarin and INR in range. It would be interesting to hear your view. Once again thanks for the post and all good wishes for your rehabilitation.

  • Hi Janet;

    my optician advised that painless aura is due to reduced blood flow at the back of the brain, and that it should resolve in 30 minutes as this is a signal to the body to increase blood flow. I should add that over many years of aerobic exercise - l'm nearly 70 - my resting heart rate is in the range 48 - 54 bpm and, despite pulmonary toxicity my blood oxygen is now 98 - 100%. It's never been said to me that painless aura identifies a potential stroke risk, but my body has never followed conventional medical responses. It could be possible that painless aura is identifying a likely site for a future stroke. It would be interesting study.

  • Hi John. That's interesting. So it could be that drugs like beta blockers that slowheart rate could also slow blood flow to the brain in certain circumstances. Yes the auras did resolve in 30 minutes. It's so useful to hear this. I do hope you continue to improve. It sounds as if you have the care of a great team at South mead. Best wishes and thank you.

  • Hi Janet, as the blood clot lodged in the rear of the brain, I wonder if this points to limited paths for blood flow at the rear of the brain.

    Yes we have a wonderful NHS. My GP now retired, the Southmead stroke team and the respiratory specialists at Southmead such as Professor Millar and Dr Smith have kept me in this world and very able. I would be in a very different place without their professional care and that of the nursing and imaging staff at Southmead. Thanks to all of you.

  • John, thank you for posting this although I'm really sorry for your situation . You sound as if you are coping really well.

    As Bob says , this us a salutary reminder to those who are reluctant to commit to anticoagulation.

    Good wishes


  • Thank you. I'm sure that my yoga teacher back in the day would say that this is a learning opportunity. It's weird that after many years of spending a lot of time on the computer, I'm having to relearn the computer keyboard and the functions in Windows, such as how to send an email. So it's Namaste and on with a slightly different reality.

  • You are very brave and I love your attitude. Here's to a speedy recovery which I am sure you will have being so positive and grateful.

    Be well.

  • Thank you for posting, it is important to be aware that any sudden 'strange' behaviour can be a sign of a Stroke - my husband was playing cards with friends and suddenly became unable to shuffle and deal, then played very slowly but his friends were too embarrassed to comment or take action so I didn't realise he had had a stroke until next day. Fortunately he has recovered well.

  • I bent down to pick up the wheelbarrow handles and kept missing them. When I started to feel a bit confused I realised what was happening. My other T.I.A.s involved speech so were more recognisable. X

  • Very best wishes and thank you so much for the post.

  • Hi John-Boy,

    I hope you don't mind me asking, but I assume you weren't taking any anti-coags due to the bleeding risk? What bleeding risk is that? Also did you get thrombolysis treatment as soon as you were admitted? Did they have to assess your bleeding risk then?

    Many thanks for telling your story, that sort of information is invaluable to the community.


  • Hi Mark;

    for many years I've had haemangioma on my tongue and I had been told that if I bit my tongue - such as in a car accident - there was a risk that I would bleed to death. Hence not being on anti-coagulants. Two years ago I "came close to death" from dronedarone and amiodarone causing pulmonary toxicity, so I'm drug adverse. My wife mentioned it to the stroke team and thrombolysis had to be delayed whilst the CT scan was double checked again for haemangioma in my brain, as the thrombolysis would have caused bleeding into the brain. Given a number of things it's probable that I was close to two and a half hours into the event before thrombolysis. I learnt from getting a femoral hernia - less than 1% occurrence in men - and pulmonary toxicity - 0.06% occurrence and I wasn't diagnosed until the third admission - that it's important to publicise it in fora such as this. I spent nearly ten years embedded in MoD, and they always have a post-event learning from experience session or paper so we all benefit. This is my learning from experience contribution.

  • Hi John-B,

    Thanks very much for that. I agree, post-event wrap-up meetings are invaluable. I've proposed quite a few in the past but they rarely happen in my industry, so people just keep making the same mistakes.

    Can the angioma be surgically removed or treated with a laser? It would seem important for you to be on an anti-coag.



  • The haemangiomas are quite big and it''s never been suggested that they could be removed from my tongue. I have had one cryogenically removed from my lip. I will be assessed for a NOAC after I have had another CT brain scan this week.

  • You could consider warfarin as it has a fast acting antidote that is generally available in the UK. Also dabigatran as that also has a fast acting antidote though I'm not sure that it's as available yet.

  • Warfarin could be difficult as I vary the amount of greenery that I eat. Apixaban is going to be the chosen medication but given my track record, it remains to be seen if it's for the long haul. My bleed risk also to be considered.

  • You seem to be dealing with the situation very well - so well done.

    It can't be easy but counting ones blessings is always a positive way to approach things.

    Good luck 🍀

  • Thanks for everyone's good wishes. If you have any questions I'll do my best to answer them. We learn together, support each other and make the best of life that we can. Namaste.

  • Sorry to hear about this. Is there any chance that the sight in your right eye may return?


  • Apparently it may return. It''s weird as the vision has partially gone in both eyes but it translates in the brain to about 97 percent loss in the right eye.

  • I do so hope that your vision returns, still early days for you right now. Let us know how you get on please.


  • Thank you, I'm adapting to this slightly changed reality. I will post from time to time as it may happen to anyone.

  • I think your opening words are amazing - not 'a month ago I had a stroke'. Here you are telling us about it so soon after it happened. It's not what we want to hear of course, but thank you so much for telling us. So sorry that your sight is affected, though hopefully it may improve.

    I'm taking notes about the painless migraines because I had three of them last year. They weren't associated with an ablation. Two appeared for about quarter of an hour, the third for perhaps 30 seconds. I haven't had any for about a year. I discussed them with my optician but have not mentioned them to my GP and will do so.

  • The stroke occurred just before 11 am on 6th July and I was discharged at 6:30 pm on 7th July. I will be back for another CT on 13th July to see whether I can take an anticoagulant. I mentioned that I am a bleed risk and therefore a problem for anticoagulants. The thrombalisation - clot busting - treatment ended with me passing a lot of blood, hence the wariness of the medical team about anticoagulation and, further investigations are on the way; I've been down that particular road before. I don't think there's a part of me inside and out that hasn't been examined, operated on, scanned or photographed! At least this time I didn't get "the team are excited that you've comes in". Trust me, being told that a medical team is excited to see you does not bode well, but you do get to see a lot of the medical staff.

  • Perhaps you are helping the team to learn about things they hadn't thought about before! Anticoagulation is something of a tightrope and really we don't know if we'll clot or bleed - or do neither.

  • The vast majority of people will do neither.

  • That's true and is great provided that it is understood that there are people outside that parameter. When I had pulmonary toxicity, on the first two admissions the medical team were only considering community aquired pneumonia, and would say "we don't know what you've got and we are running out of drugs to treat it". An analogy would be making a major error in Orienteering and then interrpreting the map and topology to suit your perception of where you are, rather than the reality.

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