Brain bleed : Has anyone on Apixaban... - Atrial Fibrillati...

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Brain bleed

Myflowers2 profile image
30 Replies

Has anyone on Apixaban had a brain bleed. If so what was your symptoms?

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Myflowers2
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Buzby62 profile image
Buzby62

From NHS website

A subarachnoid haemorrhage is a medical emergency. Dial 999 immediately and ask for an ambulance if you or someone in your care has these symptoms.

Here is the link

nhs.uk/conditions/subarachn...

Best wishes

Bagrat profile image
Bagrat

Myflowers2 have you seen the replies when you asked about this yesterday. Whatever the symptoms are you are getting if they are worrying you please seek medical advice. If in UK ring 111 as it's a bankholiday.

Myflowers2 profile image
Myflowers2 in reply to Bagrat

No I haven't

Bagrat profile image
Bagrat in reply to Myflowers2

healthunlocked.com/afassoci...

Blearyeyed profile image
Blearyeyed

Do you feel that you are having worrying symptoms and looking up the possible causes of those symptoms has made you feel more anxious ? If you are having symptoms which are worrying you you should take the advice of others and go to A and E.

You won't be wasting their time , they want to see you as early as possible with things that could be more serious , to help rule those out or treat them quickly without the chance of it becoming a complicated emergency.

They will do the right checks and help to put your mind at ease by ruling out less common but more severe things like this , finding out the cause and giving you the right treatment for your symptoms as well as putting your mind at rest.

Do go to A and E. Take your meds with you and some water in case it's a long wait. Explain to them which cardiac issues you have at reception and they will understand you may be at higher risk of certain issues and see you quicker. Don't delay , if it feels different and like something to youm it is something and you need help , even if it isn't something like a bleed on the brain.

Take care and let us know how you get on , Bee

Tapanac profile image
Tapanac

I fell over and banged my head very badly on the paving. As there was so much blood from my face nose and legs and because I knew that hitting my head was not good knowing I was on anticoagulants my husband called the ambulance. I had no symptoms but i was given a CT scan which showed a subarachnoid bleed. I was stopped on the spixaban for 2-3 weeks given a reversal drug through cannula. As it was all so quickly diagnosed all was well but I would have symptoms if left.

Do go to hospital if symptoms like buzby or others have linked to you or if you really crash your head in any way

I’m sure you will be fine

ozziebob profile image
ozziebob in reply to Tapanac

Thanks for your helpful reply. At last someone who had a brain bleed while taking apixaban, as the Poster requested.

At least your bleed was caused by an obvious accident, and you had a helpful husband, so you received the rapid scan and reversal agent recommended as best practice". Good to hear.

My experience was spontaneous (ie. no known cause) acute bilateral subdural haematomas, initially without symptoms and lacking any obvious head injury which would have necessitated a visit to A&E. (Luckily this happened before my pAF and the offer of apixaban) It required my slow bleeds to eventually cause intermittent paralyses of my left hand to finally attract my attention and a visit to A&E. Thankfully my chronic bleeds had ceased by the time of my A&E visit, so my treatment was conservative (a horrible 10 days of steroids). But now, living alone with my pAF, I fear a similar repeat bleeding or worse could well prove catastrophic if I was anticoagulated and thereby became incapacitated before I was able to call for help. So my current choice is to accept the different risks associated with refusing apixaban.

But it's good to know that your experience with apixaban and your brain bleed was positive.

Tapanac profile image
Tapanac in reply to ozziebob

Yes I c can see your dilemma. I'm so sorry. Perhaps your EP or cardiologist could advise. The only trouble is anyone with afib/afl are usually advised to take an anti-coagulant, but in your case....? I think I would try to get a few types of advice from your GP as well. All the best and stay well. xx

ozziebob profile image
ozziebob in reply to Tapanac

Thanks for your kind words. Unfortunately I don't have anyone to discuss this with, neither EP nor Cardiologist (never seen either, just an arrhythmia nurse and a young pharmacist in Haematology), and my GP is happy to let me "get on with it" by myself, which is what I do in the light of the lack of any suggested referrals. My small ASA (2022 echo) now has progressed (with a different sonographer) to an altered diagnosis (2024 echo) of possible PFO (needs further investigation?), but apparently, at my age (77), no treatment is suggested for either aneurysm or defect, so I'm not displeased about that. But as both give an increased stroke risk when combined with AF, I certainly would like to find a medical expert who had knowledge across these areas, simply for reassurance that my choices are not "completely bonkers"! 🤔

Myflowers2 profile image
Myflowers2 in reply to ozziebob

Thanks for replying. What were your symptoms of your brain bleed?

ozziebob profile image
ozziebob in reply to Myflowers2

Did you not read my 2 replies to your same Post yesterday? I think I described my symptoms there ... healthunlocked.com/afassoci...

Tapanac profile image
Tapanac in reply to ozziebob

Regarding your PFO have you ever had an ablation? It was discovered last year that I had a PFO and it seems (?) that it was caused when they pass through from left to right if heart when I had an ablation in 2017. The hole usually clears up within a few weeks it in my case it didn’t. No one seems bothered about it so I won’t.

I’m sorry you feel left out on the cold with no EP or cardiologist and your GP just leaving to to get on alone. Having said that maybe they think you are not too bad - hopefully!

You know you are always welcome to worry or rant on this group even though we can only tell about our personal experiences

Take care

By the way my dad and also brother in law had aneurysms and they lived to an old age snd when they each did pass away it was nothing to do with their aneurysms

ozziebob profile image
ozziebob in reply to Tapanac

Thank you for your reassuring words. I also think I'm not so badly off. It could be a lot worse.

And no ablations, so no ablation caused defects. And no daily meds either, yet.

Re my atrial situation, my first 2022 Echo Report read "No evidence of interatrial communication by color flow doppler analysis. Â Interatrial septal aneurysm".

While my second 2024 Echo Report read "IAS: appears thin and mildly aneurysmal (maximum bowing of 0.7cm). Possible colour flow seen across to suggest PFO - would need bubble study to confirm".

This seems good to me. No "interatrial communication" (ie. IAD or PFO) in the first Report, and only a "possible" chance of this in the second Report.👍 So it's a "no thanks" from me to this "bubble procedure" and it's possible side-effects. Not needed. And my actual ASA is only "mildly aneurysmal", so more good news.👍

As I said, it could easily be very much worse. Lucky boy is me (like you and your brain bleed)!

All the best.

bob

Tapanac profile image
Tapanac in reply to ozziebob

I didn’t understand some of your symptoms but as long as you’re as happy as you can be, I’m happy for you

All the best …. Pat

ozziebob profile image
ozziebob in reply to Tapanac

I think when you have a hole (called a defect) in your atrial septum, blood can flow between the left and right atria because of the difference in pressures. I think both sonographers comments I quoted were looking for this kind of coloured blood flow (shunt) between the atria.

IAS interatrial septum

PFO patent foramen ovale

IAD interatrial defect (hole)

ASA interatrial septal aneurysm

Here's an interesting (to me) quote I just found online ...

"The patent foramen ovale (PFO) is a slitlike interatrial opening that is present in about 27% of the general population. It is 1 of the major causes of a cardiac right‐to‐left shunt (RLS). An atrial septal aneurysm (ASA) is a congenital bulging of the atrial septum involving the fossa ovalis region"

Tapanac profile image
Tapanac in reply to ozziebob

Oh interesting. When I asked my EP about the hole in my heart, all he said was probably happened when I had an ablation as they have to go from right to left. Then end of conversation!!!!! Not helpful was it.

ozziebob profile image
ozziebob in reply to Tapanac

No, not helpful.

Yes, perhaps caused during an ablation, and apparently they don't all heal completely. (Incidentally a minimaze doesn't need to make this puncture inside the heart because the minimaze procedure is on the outside of the heart)

As for the PFO, the other possible source of your hole, this quote might make it clearer ...

"Patent foramen ovale (PFO) is a hole between the left and right atria (upper chambers) of the heart. This hole exists in everyone before birth, but most often closes shortly after being born. PFO is what the hole is called when it fails to close naturally after a baby is born".

I hope things are getting clearer.

bob

jaffacake8 profile image
jaffacake8

I tripped over last week and banged my head quite badly on a hard laminate floor and was worried about a brain bleed as am taking apixaban. I went to A and E and they gave me a CT brain scan fairly quickly and luckily no bleed. I was due to take my tablet but held off as wasn't sure whether to take it or not. The doctor said that I had done the right thing as shouldn't take it until a bleed is ruled out. Also told to go to hospital as soon as I can even if I only slightly bang my head and must always have a scan to check all OK. It's best to get checked out and get peace of mind .

Hope you are okay. X

RoyMacDonald profile image
RoyMacDonald

My Father had a brain bleed and his symptoms were complete paralysis and death 4 months later, but I don't know what medication he was on for his angina and high BP. He had a dreadful diet though consisting of shop bought pies and very few vegetables. He did exercise though. He was 78 when he died.

All the best.

Roy

ozziebob profile image
ozziebob in reply to RoyMacDonald

Sorry to hear about your father's bleed and death, and the effect of this on your decision re apixaban. Perhaps you don't know, but do you think your father's bleed was spontaneous (no known cause) or caused by an obvious head injury? I think the difference is important in deciding future choices re apixaban. What do you think?

bob

RoyMacDonald profile image
RoyMacDonald in reply to ozziebob

Spontaneous. He was sitting on the sofa reading the morning paper and just stopped responding. It put me off Apixaban until I had a stroke then I realised that strokes were death by a thousand cuts and even worse.

All the best.

Roy

ozziebob profile image
ozziebob in reply to RoyMacDonald

So I misunderstood. You are now taking apixaban as recommended? And am I correct on thinking that your father wasn't taking apixaban when his bleed occurred?

bob

RoyMacDonald profile image
RoyMacDonald in reply to ozziebob

Sorry I don't know. I did say I didn't know what medication he was on in my original post.

ozziebob profile image
ozziebob in reply to RoyMacDonald

Yes you did, but my first unanswered question was about you. I presume your stroke changed your ideation about taking apixaban?

RoyMacDonald profile image
RoyMacDonald in reply to ozziebob

Yes it did. I thought I had indicted that by saying "It put me off Apixaban until I had a stroke then I realised that strokes were death by a thousand cuts and even worse."

BeHealthy2day profile image
BeHealthy2day

No problems with Apixaban

Contact1 profile image
Contact1

I’m on Apixaban and have bumped my head twice. Once going up into the attic through the hatch carrying a box missed judged where the hole was and bashed my head. I didn’t go to hospital right away but stopped my Apixaban then I started to panic and rang 111 was told to go to A&E right away. I had tests and a scan luckily no bleed but was told off for not going sooner. When I banged my head again I went right away and stopped Apixaban. I didn’t get a scan as I went to my local hospital but they spoke to a cardiologist and they were happy I didn’t have a bleed but I had to stop my Apixaban for 7 days. I do worry about banging my head or having a bleed for no apparent reason. Wish I didn’t have to take Apixaban but I also don’t want a stroke. ☹️🙂

Myflowers2 profile image
Myflowers2 in reply to Contact1

I strained very hard the other day and got a pain my head. Still hurts so went to A and E today. They didn't think I needed a scan as I had no other symptoms. So sent me home. I asked did I need to leave my Apixaban off they said no. Now I am wishing I had had a scan so worried. Still have pain in the top of my head. They said come back if I get numb one side or have tingi, slurred speech , blurred vision.

ozziebob profile image
ozziebob in reply to Myflowers2

Well that's annoying. It disappointingly seems to be somewhat of a lottery as to whether you get a scan.

In the light of my experience described in a previous reply to your Post (either yesterday or today), I would definitely be concerned for you that the pain continues in the top of your head. You shouldn't be waiting till numbness appears (as happened to me) as speedy treatment is essential, especially when anticoagulated.

One of the neurosurgeons I later spoke to as an outpatient even mentioned "straining on the toilet" as a possible cause of my bleed, and you wrote "I strained very hard the other day and got a pain my head". Doh! The link is obvious.

Perhaps you could call the NHS emergency number 111 to ask for further guidance, but really, in my opinion, you should insist on that scan.

ozziebob profile image
ozziebob

Have you been able to get further help with the ongoing "pain in the top of your head"? did you get the scan you wanted? is it now resolved?

Many here are concerned about your situation.

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