Just had Atrial Fibrillation and Pontine Stroke

Hi all, I wanted to introduce myself.
I had first event of atrial fibrillation in 2020 when I was 50 years old when my father died. This was after having intermittent heart flutters which the specialists could not detect. This was put down to stress / bereavement and a history of heart disease where my father had had 7 stents in his life before passing at age 85 years and my maternal grandfather has one of the first triple bipass surgeries in the 80s.
All was quiet until last Aug 23 when i woke up with my chest vibrating. I then used my Braun blood pressure machine and the vibrating heart symbol came up. This I learned would be a life saver a month later.
On the 10th Sept I had what turned out to be a LACI stroke on the left hand side of my PONS but only slight damage. Again on the 10th Sept I woke up as the room was spinning - i had never had this sensation before and my eyes felt like they were zigzagging and pupils very small. After going for a wee and using my machine again I knew it was not vertigo.
I am now on a trial with Northampton Acute Stroke Unit and University College London looking at benefits or not of having Apixaban prescribed at days 4 or 10 after a stroke and not straight away which they think may or may not cause further bleeding in the brain. Luckily I only had some damage and a clot but not brain bleeding and was out of hospital in 3 days with weaknesd down my right hand side. I was able to walk again after 2 days and no other symptoms except my spelling has got worse and also having more sleep during the day which I have been told is the brain repairing itself. Am still on NHS waiting list for an angiogram or angioplasty which is the angiogram plus putting stents in if needed. Delays getting sorted I have been told due to the consultant strikes.
So the theory so far is possible narrowing of pathways to / from heart causing the atrial fibrillation and then the AF causing the stroke. Am still very tired because of Apixaban but am trying to pace myself taking dogs out and gradually increasing time outside as I am determined not to let this control me. I have also learned to stay off Doctor Google - this is a big mistake as everyone is different and it always presents worse case scenarios and this is why this forum is so great with great advice from people like me who are experiencing similar things.
Strangely, I have an identical twin brother who is 4.5 stone heavier than me with no symptoms at all. I have told him to get checked out and so far all okay.
Good luck to everyone on their recovery journeys and thanks to everyone who has helped provide really great support and advice here.


HI @Geoff1970

Geoff? Hello



The first few weeks / months are going to be a proper fog I’m afraid.

I just want to say welcome and have a look at this if you feel up to it:

So sorry you’re on this journey. I am 10 months in from 3 ischemic strokes and it is hard for my friends and family and me!!. but there are good and bad days!

Keep talking to us

:wink: :polar_bear:

Here is a picture of some polar bears to cheer you up!!

Tiny bumps on polar bear paws help them get traction on snow

Sounds about right!! I am always tired!!

I’m in no way shape of form giving medical advice but apixiban didn’t work for me - made me very anaemic and I had to have iron infusions and b-12 jabs etc. but I have heard it does work very well for others…

thank you

That’s a good study I wonder if you could tell me how you joined as I would be keen to share my experience of apixiban…


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Hi @Geoff1970
Welcome to the forum. I expect the crowd will be alone to say welcome as time rolls on, and Kieran has already pointed you to the welcome post which a few of us put together to contain the stuff we kept saying to folk when they first arrived and we hadn’t yet collated it .

At a guess your foggy tired feelings aren’t your meds.
They’re the stroke and it’s a phenomenon normally called fatigue which is an extremely common challenge - you’ll find lots of this forum that about it .

My own opinion of Dr Google or more like Google scholar is that the information that we don’t get from the medical professionals is out there and we need to be our own recovery directors because nobody else will be equal to keeping track of the integration of needs and the integration of therapies and interventions - obviously your mileage varies.
Instead of Dr Google maybe be advised by the collected wisdom here through asking questions and reading about other people’s experiences :slight_smile: ?

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@Geoff1970 hi & welcome to the forum. Sorry you’ve had a stroke but now you’ve found this group i hope you find it useful.

Sounds like you are doing ok after your stroke although some of your symptoms sound horrid.
Well done on getting out walking the dogs.

I hope they get to the bottom of everything for you & that you don’t have to wait too l9ng for your angiogram etc.

Best wishes



Hi, just got asked when i was in hospital as they wanted candidates who had just had a stroke. Apologies i was not given a contact at University College London.
Have a review at 90 days with them.

Unfortately i have had a smaller stroke yesterday which ended up with waking up again at 2am. However this time managed to get the spinning to stop. Now planned for me to have a brain angiogram now at Kettering General Hospital.


Many thanks for your kind feedback.
I had another smaller stroke yesterday at 2am so hopefully they will sort it soon…

Oh god @Geoff1970 that sounds like another blow!!!

No need to apologise re the study!! Just focus on you at the mo.

Hope the angiogram goes ok and let us know!!

Will be thinking of you today.


:cry: :polar_bear: :face_with_head_bandage:


Sorry to hear you had another stroke last night. How rubbish is that. Have my fingers crossed they’ll get you sorted veey soon.

Look after yourself.


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Hi @Geoff1970 welcome to the forum. So sorry to hear you’ve had a subsequent stroke, think you need to concentrate on taking it easy and try to stay relaxed until they get to the bottom of this. I know it’s not going to be easy but don’t go reading or doing anything to raise your blood pressure too much. Stroke recovery burns through a lot of the body’s nutrients in the healing process and repair of you brain; much the same as any major surgery. So take good care of yourself :smile:

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Many thanks.
Was in A and E again this week with another TIA but am due to have angioplasty next week now.
My consultant wants to deal with possible physical issues with heart first, check any narrowing with possible stents and if not needed then look at the neurological side.
Am resting and ramopril upped to 10mg to try and keep blood pressure down - not yet kicked in.
Thank you for your useful / helpful advice.
All the best


@Geoff1970 sorry to hear you’ve had another TIA. Hope you’re doing ok now. Good luck for your angioplasty next week hope all goes well.

Get plenty of rest over next few days.

Best wishes

Ann x

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I had exactly the same conditions as you and I fully sympathise.
What I wanted to ask was does the apixabsn make you feel lousy? Mine is now 20 m a day and I frankly feel completely flattened not in a good way. I’ve been getting headaches and lack of energy and because I live alone it’s scary. I’ve lost my appetite too. I’d most appreciate what you think. I feel that I’m going backwards,…


The following are side effects of Apixaban but maybe its worth you reviewing your medications with your doctor, particularly if you are taking more than medication (as most of are). How long have you been on these; if it were just a few days/weeks even, I say you just need a little more time for your body to adjust to it. But if you’ve been on it since your stroke for instance, then I would definitely be speaking with my doctor. In the mean time you should have a chat with your chemist/pharmacist too, they tend to know about the medications you are on and their side effects.

Tiredness and lack of energy
Feeling dizzy or light-headed
A mild rash
Feeling sick (nausea)


Hi, no effects of Apixaban yet but only on 5mg currently.
Had another TIA on friday pm where i woke up from a nap with both eyes blurred double vision. Will be seeing doctor on monday. I have also used 111 a lot when i have had symptoms especially if I am the only one in the house at the time. So if you have doubts do phone them.
The problem is we are all biologically differently and also our drugs interact differently in us.
I still feel tired but have been told this is the brain finding time for healing itself.
Do remember while you may be at home on your own you do have all.of us to reach out too.
Good luck. Geoff.


I guess you found 111 useful then?

I find that everything is either " you’re fine take 2 aspirin” or “go down to a&e now” and no subtler advice or middle ground?
Perhaps I’m not using it right? %-)

I guess the angioplast when smoothly?


Hi Simon, angioplasty was delayed as they considered me still a high risk to having heparin back in Oct with only stroke in sept. Hopefully now for jan/ feb and yes 111 was very helpful. As all settled after 2 hours was told to chevk with doctor. Cheers Geoff