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AF Association
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AFib undiagnosed

Yesterday was the most awful day. My 96 year-old Mum had another (more serious) TIA at the beginning of this week. It seems to have affected the part of her brain that recognises letters and images and of course reading is her biggest past time, and I doubt that she would be able to hear audio books. So I booked a sleeper up to visit her as I felt I would bitterly regret it if I didn't.

Then yesterday I had a telephone call - my older sister who is 69 had had a fall and lain all night in her flat. Her son found her in the morning and called an ambulance. It turns out she has had a serious stroke. I spoke to the hospital this morning and they said she is very poorly and they are trying to bring down her heart rate. They are pretty sure it was undiagnosed atrial fibrillation and of course she wasn't anti-coagulated. Today we are driving to the South coast to see her, my other sister warned me she looks as though she has been in a car crash as she hit her face and head as she fell.

When I managed to sleep I dreamt about her.

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Sorry to hear about all these things that are happening in your life right now Irene. As they say, 'It never rains but it pours'.

As we grow older so health dramas happen around us more and more. It's just horrible, especially when they result in death, but I guess this is how it's going to be for us as we age - there's no escape. I share your despair, having lost 4 people this year and another friend having a brain haemorrhage and ending up in a wheelchair.

Try and stay sane, your family need you for support right now.

Big hug.

Jean

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Thank you jeanjeannie50

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Oh Irene - so much for you and your family to cope with and so much worry. It is a fact that when we need to have inner strength, it does come from somewhere within us and I wish you every good wish in coping with so much sadness.

If you need to talk, there is always soneone around to share worries and concerns with.

Big hug from me too.

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Thank you Finvola

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So sorry to hear all of this - two bolts from the blue.

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What a sad and difficult time. My sympathies too.

You titled your post "Afib undiagnosed". I am not sure that is certain.

Your mother has AF, and you have previously referred to discussions about whether she should have AC.

I think you have said previously that you also have AF. It seems very unlikely that your sister will not have wondered whether she too had AF, and not taken steps to exclude that.

Stroke affecting the brainstem and stroke due to,cerebral haemorrhage can induce atrial fibrillation.

I only say this because it crossed my mind that you might be thinking you could have prevented this. I am not convinced your sister has had previously undiagnosed AF.

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Hidden, I did think I could have done something - I have Kardia on my phone and check myself every now and again. We see my sister frequently and she did get turns where she felt she was 'overheating', but it never occurred to me (stupid I know) that she may have AFib. She has a very healthy lifestyle and well controlled blood pressure, and the hospital did say that the stroke could have caused AFib, but if so, what caused the clot?

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Emboli (clots) do not necessarily originate from the fibrillating heart not affected by mitral stenosis. In fact it may be the case that the majority originate from narrowed carotid arteries or the vertebrobasilar arteries.

Did the hospital say this was of ischaemic origin rather than a haemorrhage?

There are many reasons for "turns" associated with "overheating" which are nothing to do with AF in a 69 year old.

Maybe time to stop worrying you missed PAF in your sister. For the reasons I gave above I am unconvinced she had PAF previous to her stroke.

You don't sound at all stupid to me, you sound a very caring person. You need to continue to be strong for your family, not to fret about something that very likely did not happen.

Best wishes to you, you are doing a great job I am sure, in trying circumstances.

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The Royal College of Physicians produced Stroke Guidelines in 2016. There are two versions, one for patients and carers and the other for clinicians. The patients and carers version can be read or downloaded at strokeaudit.org/Guideline/P... The information will help you ask the right questions. NHS care post-stroke seems to vary across the UK.

I'm not medically trained but I had a full stroke in July 2016 so I can speak from experience. It sounds as though your mother had a full stroke rather than a TIA. I found that I could not read column text in broadsheet newspapers for some weeks. I also had difficulty with normal text for a little while and, I was hopeless with Suduko. It may be that like me she has hemianopia where she has vision in both eyes, both the brain doesn't interpret part of that vision. I have sight in both eyes and I can read the bottom line of an Optician's test card - 6/6 or 20/20 vision - but I'm blind on the right hand side. The brain can take a while to sort out the confusing visual images that it's receiving

The clinician's version of the Stroke Guidelines 2016 states that the cause of about 25% strokes is initially unknown, and goes on to list a number of things that may have caused it including AF.

You will need to speak to the Consultant Neurologists for your mum and your sister to find out the way ahead, about medication and whether post-stroke care and services are available. If your sister drives, her eyesight will need to be tested; we can discuss that on another day - my licence was revoked because of hemianopia. For now, you'll need patience as the brain can make a reasonable job of rewiring the connections - neuroplasticity - but it took about 15 months before my pre-stroke personality returned. I wish your mum, your sister and you the best outcomes and, you also need to take care of yourself.

John

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Oh I am sorry to hear your trouble. Have you any supporters with you? Hope things improvexx

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A very supportive family - thank you.

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It is a terrible tragedy and I am sending you my sympathy. I see that you asume the your sister had a stroke because of an undiagnosed AF. However, not all strokes come from AF. There are two types of brain strokes, hemorrhagic and thrombotic. A brain hemorrhage can be result from high blood pressure, a ruptured brain aneurysm or a vascular brain tumor. A thrombotic stroke is caused by a blood clot that got into the brain, and could have originated from the heart in case of AF, but also from a arteriosclerotic carotid artery in the neck or other arteries in the brain. So, AF is not the only cause of stroke. In addition, many people with undiagnosed AF, never have a stroke. In life nothing is 100%.

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Thank you. We are told that my sister has had a thrombotic stroke originating from the heart, but they said the stroke could have caused the AFib or vice-versa. Perhaps we will never know.

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I don't see how the hospital could possibly say anything more than your sister had an ischaemic stroke unless they identified a clot on a scan.

Most clots causing stroke do not originate from the heart.

Have they seen clot in her heart on scanning?

Have they scanned her carotid arteries for narrowing which is often a source of clot.

Consider asking to talk to the consultant again to voice your dismay that your sister might have had PAF and that you feel guilty. I think you will find she/he will reassure you this is unlikely.

I am labouring this point because I am concerned this will fester in your mind maybe for ever, and to my mind unnecessarily. You may not get a definitive answer as you say, but the likelihood is that your possible feelings of guilt are completely unfounded.

How is your sister? How is your mother?

How are you holding up?

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I am with my mother at the moment, she is remarkable and (for her age) very well. Still problems with reading and a little more unsteady on her feet but feeling much better, the headaches have disappeared.

My sister had a CT scan on admittance and it was after this that my nephews were told it was a clot from the heart. Of course they were in shock so they could have been told it MAY have come from the heart. They haven't mentioned the carotid arteries. I am travelling back down south tonight and then going to see my sister again tomorrow, and you have put in mind that I can call the hospital ahead and ask to speak to the consultant. However, I have three adult nephews who are on the spot every day talking to the staff and they have been relaying any news to me.

I am holding up not too badly, thank you, and have put any initial feelings of guilt to one side.

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