Stroke Prevention Day: The Stroke... - Atrial Fibrillati...

Atrial Fibrillation Support

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Stroke Prevention Day

john-boy-92 profile image
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The Stroke Association are highlighting the link between AF and the possibility of a stroke. I can echo that, as I was cardio fit with none of the other risks from weight, smoking, drinking, but I had AF and I was not prescribed an anticoagulant. On 6 July 2016 I had a stroke. The following words are from the Stroke Association:

"Today is Stroke Prevention Day. This year we’re raising awareness of atrial fibrillation, which contributes to one in five strokes. Atrial fibrillation, or AF, is an irregular heartbeat. If you’ve had a stroke, you should have been tested for AF as part of your stroke care. You can find out more about managing your risk of stroke with AF.

stroke.org.uk/sites/default...

It is estimated that around half a million people in the UK have it, but don’t know it! We want everyone to know how to check their pulse for AF so that we can stop stroke before it happens. Help us to spread the word by encouraging your family and friends to check their pulse. The more people who take action, the more strokes we could prevent."

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john-boy-92
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Jalia profile image
Jalia

Thank you John for highlighting this.

john-boy-92 profile image
john-boy-92 in reply to Jalia

I've emailed my contact at the Stroke Association pointing out the potential synergy by working with the Atrial Fibrilation Association in HealthUnlocked.

BobD profile image
BobDVolunteer in reply to john-boy-92

The head of Thrombosis UK used to be CEO of AFA and I still work with her on proof reading publications etc some of which I have sign posted here. The 1/2 million people are the ones who are asymptomatic and only discover they have AF when they have the stroke. There are probably three times that number diagnosed with AF.

It is also worth reminding people that whilst 20% of all strokes are AF related, those tend to be 80% of the lest recoverable due to the large size of any thrombii formed within the heart blocking more of the brain.

john-boy-92 profile image
john-boy-92 in reply to BobD

Hi Bob. I was asymptomatic but my Polar HRM picked it up. Pre-COVID, I was a participant in a Health Practice Patient Participation Group (PPG), and suggested that on a routine examination, patients were checked with a finger oximeter with a pleth display. It never happened and that PPG was closed. I'm raising the issue with local Practices via the NHS "lived experiences" section. My stroke was not help by paramedics not knowing that a stroke affecting vision, is less likely to produce FAST indicators, so an hour went by before I was blue lighted to hospital. I'm a stroke survivor in the very proactive and supportive Bristol Health Partners Stroke HIT, but I need to get the AF message across to Health Practices.

Karendeena profile image
Karendeena in reply to john-boy-92

My brother has just had a stroke that affected his field vision on the left hand side. He had no other symptoms and the paramedics didn't think he had a stroke. After blood tests in hospital they were going to send him home until I explained that he didn't seem right and the fact that he was dizzy that morning and drove into 2 stationary cars! They then decided to do a CT scan followed by an MRI which found the type of stroke you mention here john-boy-92. He has been sent out now with medications and is waiting for results of a 24 hour heart monitor. He was diagnosed with SVT many years ago and doctors have failed to medicate his high BP. It will be interesting to see if he has afib as I do

john-boy-92 profile image
john-boy-92 in reply to Karendeena

I'm sorry to hear about your brother. The medication will depend on whether the stroke was a bleed or a clot. Are you in the USA or UK? The Stroke Association here in the UK will have information for you as a family member and your brother. As a minimum your brother should not drive for a month. His vision may recover over the next six months or not at all. Having left side visual field loss means he will have difficulty with reading as he may not see the start of sentences. He may find that other senses are affected. I lost my sense of smell - not good with COVID about - my hearing loss increased, and my visual memory went but has just about recovered. If you're in the UK, your brother would find it better to voluntarily suspend his licence rather than let the DVLA revoke it. This will be a strange time for your brother and you, but you will get through it. After about a month there can be a change in the site of the stroke, known as a haemorrhagic transformation : ask the medical professionals now about it so you know what to do. Here in the UK, NICE are running a study to see whether stroke survivors have a mutation in the gene that metabolises clopidogeral: it may be worth asking about that.

Karendeena profile image
Karendeena in reply to john-boy-92

Thanks john-boy-92 really appreciated. Yes, he's struggling at the moment. How does he voluntarily suspend his licence and should be do that now or wait a month?We are in the UK too, so any recommendations for anything be would be good. I am worried a bit about the haemorrhagic bit you mentioned as my dad passed from a brain bleed whilst on warfarin and I am on apixaban for the AF.

Do you take clopidogeral what is this for? My brother has no sense of taste or smell but hasn't had for a long time now.

Do you drive?

john-boy-92 profile image
john-boy-92 in reply to Karendeena

People who survive stroke and their carers usually feel cut off without help, so let's chat about where you are now. If your brother does not need to renew his driving licence (I'm assuming car, not HGV) such as you do at 70, then there's no need to do anything. He cannot legaly drive for a month after the stroke. It would not be advisable to drive after that until he is medically advised that he is safe to do so. We can chat more about that down the road. He will find it difficult to walk on busy pavements and cross the road. If you or family members want to take him out in the car, you can apply for a Blue Badge for him. He will have that as a passenger (I have one), and provided that he has the Blue Badge with him, it will apply to any car where he is a passenger. When you fill out the form, say that he has difficulty crossing the road, and in car parks.

If he stops shaving on the left hand side, that shows a quite common symptom known as neglect, where the brain is ignoring that side of his body as his peripheral vision is missing on that side. That needs to be discussed with his neurologist and post-stroke team. If you haven't got their contact details, it's something that you need to have anyway. He will probably have an Esterman test where he looks into a machine and focuses on a fixed LED. Small LEDs of varying brightness and position will flash momentarily, and he will press a button when he sees them; that will plot the areas where his visual field is missing.

Although the Life After Stroke Zoom events are Bristol based, I can't imagine that would exclude you (and your brother); the next one is about revised stroke services in the Bristol region so that will probably be of no interest. I can always let you know via the chat feature in this forum.

A haemorragic transformation is when the site of a brain bleed changes. It happened to me, with all the symptoms of a subarrachnoid stroke (I've probably misspelt that). The two GPs who attended didn't recognise it. When my excellent neurologist came back from holiday, she immediatly arranged an emergency CT scan. Subarrachnoid symptoms are rigid neck, so painful that you can't bear the lightest finger touch.

Clopidogeral is given after a stroke or heart attack. If the stroke was a bleed, he may be given it as a permaent medication - the neurologist and stroke team should advise. The NICE gene testing study is by Bristol University.

When we started Zoom sessions over a year ago, every stroke survivor and carer commented on the absence of care and, contact with people in the same condition. Contact the Stroke Association, if necessary I will give you an engagement officer's contact (I can post that via chat on this forum. You and your brother are not alone. Things are different, but both of you are the people you always have been. Keep in touch and ask questions of his medical team, the Stroke Association, and me.

john-boy-92 profile image
john-boy-92 in reply to Karendeena

To answer your last question, I don't drive as the DVLA Medical Group revoked my licence in 2016 due to a non-compliant visual field. In November 2022 I submitted evidence to the parliamentary Public Accounts Committee (PAC) and the Department of Transport. The PAC report should be published in mid to late February and will undoubtedly comment on the DVLA Medical Group (DMG) and, probably on the DMG's attitude to drivers with a visual field defect. I'll comment in when that is available. The Parliamentary and Health Service Ombudsman report PHSO case P-001082 (search online) will give an idea of the issues for drivers with a visual field defect.

The gene that metabolises clopidogeral is CYP2C19.

The current Stroke Association newsletter has some usefull links, and I recommend the My Stroke Guide from the Stroke Association web site.

You can ring the Stroke Association on 0303 3033 100 to ask for advice. There is also a confidential helpline.

john-boy-92 profile image
john-boy-92 in reply to john-boy-92

The My Stroke Guide is on the Stroke Association Web site, not from mystrokeguide.com

john-boy-92 profile image
john-boy-92

As an add on to my email, the British and Irish Orthoptic Society (BIOS) have an excellent Chair who is familiar with visual field loss from a stroke. BIOS may be able to give some advice. If you are in the UK and are in the Salford or Liverpool areas, there may be NHS specialists in visual problems from strokes: BIOS may be able to advise.

pusillanimous profile image
pusillanimous

I obviously have familial AF, I am one of 5 girls and we all have it, as did my father , but he died of prostate cancer. There are certain faulty genes that cause it familial AF so I wonder how difficult it is to test for them. Anyhow, mine was asymptomatic and was only discovered by chance when I was given an anti- biotic that did not agree with me and caused me to vomit and raised my HR to a 140. I was given an ECG at my GP's rooms found to be in AF and referred to a Cardio and have been treated ever since. I live in South Africa. One of my sisters was not so fortunate in the UK. She was booked in for a gall bladder op, but because they could not get her HR down they sent her home with a packet of aspirin. Needless to say she had a stroke, fortunately not too severe. She still awaited her gall bladder op - did not happen. She developed jaundice and was admitted. She died a few months later. To cut along story short, according to an expert on the subject, a gall stone migrated to a biliary tube, became cancerous and despite efforts with stents, she died.

john-boy-92 profile image
john-boy-92 in reply to pusillanimous

Thank you for writing that. It hits home when you think that it shouldn't have happened.

I had pulmonary toxicity caused by dronedarone and amiodarone. I was twice discharged from hospital with "community aquired pnuemonia", without a follow up appointment and without medication. My on-the-ball GP rang a specialist respiratory unit and sent me straight there. The team worked on me through the night, and thanks to them I'm still here. During the follow up, the doctor sumed it up; "you were on 70% oxygen and nearly died". Without the right diagnosis at the right time, life can be fragile.

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