Vision Loss (hemianopia) . Not a stroke - Oh it is a stroke

Hi all thanks for all you stories I have enjoyed reading them. My firstpost thought I would share my story.
I am 52, male and live In Edinburgh with my wife and 3 grown up kids.
In September I had light bouts of dizznessthought nothing of it but started taking things easy.
Mid Oct I wnt to A+E as vision had got really bad (headache and dizziness). Sent home…not a stroke they said. Next week spoke to GP (who agreed to refer for CT Scan takes 5 monthsapprox) and spoke with optician (eyes healthy…but couldnt do visual field test as coundnt focus on central cross - he thought it must be vascular). GP and A+E blood test results all no issues.
Meanwhile still at work but told boss not very well. And still driving but idnt like to drive so only rarely.
Depressed I was ill - A+E no issues; GP np issues; Optician no issues. Luckily boss did encourage me to take time off but I said I prefer to work to keep my mind off it.
Had another turn and went to A+E for 2nd time on 2nd Dec. This time they did a CT scan and at first came back and said all clear. Very upsetting as optician said eyes healthy. But about 15mins later they came back and said yes the scan did show something was checked into Edinburgh Royal Infirmary.
A Right PCA territory infarct. Some chat of two strokes the first AA+E visit and the 2nd.
Was in hospital till 17th dec. Sent home with vision loss on left hand side and bad dizzoness still (moving slowly helps that).
Worried about return to work - may be ok.
Cant drive (no chance of that) vision too bad.
Praying eyesight recovers. WIll post on thing tried but same as mentioned on other posts. Have contacted Novavision (altho results dont sound too good despearate to try something).
Did visit Edinburgh Eye Pavilion. Doc their said cant help as eyes are fine. Discharged. No mention of prism etc. Said Its the brain.
Feel very down as not much I can do about it. But in many ways lucky as can see lets say 50% (both eyes the same) so can go for a walk and read messages on the phone. hopefully I can work in some role or other - signed off till 1st Feb.
Will update on vision progress and if I find anything that helps it.

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@mccormack5.ed welcome to the forum. Sounds like you had a bit of a mess around before you got your diagnosis.

I had vision issues following my stroke & was not allowed to drive for at least 3 months & had to be cleared by DVLA before was allowed to drive again. My vision issues (lots of flashing vertical lines in front of my eyes, everything off centre on the page & shuffled across to the left) slowly resolved in a couple of months. I do still have some double vision in the far reach of my visual field though. I am.now 13 months post stroke.

I also had dizziness & balance issues and whilst they have improved they haven’t gone completely & only a few weeks ago I had them really bad again.

Hopefully you’ve been referred to opthalmology & been given some eye exercises to do. If not try looking online. I’m sure you’ll find something you can try.

You are early days yet & rest is important to aid recovery. Try not to rush back to work if you don’t have to.

Look forward to hearing of your progress.

Best wishes

Ann

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Thanks Ann your story is very positive. Glad you had improvements.
I will ask about that referal. I have been using an App called Vision Up which is an eye exerciser - its good and calming

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@mccormack5.ed hi, sorry to hear you’ve been messed about before they confirmed diagnosis of stroke.

Whilst I can’t share any experience with regards to eye issues, I wanted to welcome you to the community and wish you all the best.

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Hello mccormack5.ed
Your experience of hemianopia is similar to mine. My hemianopia was one of the clues that the Specialist Doctor picked up on before my multiple TIAs has been diagnosed She suspected TIAs and arranged a CT scan and the scan did indeed show muliple small strokes.
The hemianopia was never permanent but I had regular occurence of it typically lasting 30-40 minutes each time.That was 2017-8.
I still have hemianopia come on but the frequency is reduced. Over time I have learned what triggers it. One major cause is bright light and bright flashing lights. When I go out in sunny weather I wear polarising visor over my glasses and when I experience flashing lights I do my best to avoid.
Like yourself I have had my eyes checked by the Optician and he said the eyes are OK and the hemianopia is behind the eyes (in the brain) and he has reported that back to my GP.

@mccormack5.ed hi welcome to our forum sorry you’ve had such a rubbish time.

I was messed about too but at least you’re getting somewhere now.

I take it your on the correct medication now.

Fatigue is part and parcel of stroke also dizzy bouts there’s quite a few of us suffered dizziness before and after the stroke. I had a leak in my eye they called it retinal occlusion or something like that, before I had a cerebella at back.

I look forward to your updates and keep talking and going kind wishes Loraine

@sunnyday thanks so much for sharing. I too am bothered by bright lights…say in supermarket it’s real bad. Good to hear how you have progressed. Wish you all the best I was hoping someone, say at eye hospital, would take me thu glasses,spectacle options like polarised or coloured filters. But looks like I should just try myself and see if any work.

@mccormack5.ed I bought my last set of glasses with a coating on them they go dark in sunlight. I don’t like bright lights or noise

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@Loshy @Mahoney thanks for the warm welcome

@Loshy just clopidogrel and paracetamol and atorvastatin. I was on prochlorperazine and codeine but no longer. Not sure, keeping an eye on it difficult to say if prochlorperazine made any difference to sore head and dizziness

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@mccormack5.ed I’m on clopidogral, candesarten and a statin. . I think in my experience I have to look out for my self and get appointments by the Gp referring me.
Lots of luck loraine

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Yes, that is another one that I get. My solution for that is to wear a baseball cap (with large peak on it) to keep the direct light from the bright supermarket lights out of my eyes.

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@sunnyday now there’s a good idea. I have same issue and never thought of a baseball cap.

Baseball cap ordered :+1:

Hi @mccormack5.ed and welcome to the he forum. Sorry to hear about you stroke and eye problems. I hope you start to get some improvement soon.

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Thankyou @Ingo66 . Best wishes to you too.

@mccormack5.ed

Welcome to the forum and thank you for sharing your story. I also have hemianopia which means I have no peripheral vision on my right hand side. As a result I have lost my drivers license unfortunately but hopefully I will be able to follow an exception process and recover it at some point. I did try Feldenkrais therapy and a series of eye exercises but unfortunately I found this affected my fatigue and balance too much. I would have an hour’s session and then need two days to recover!

In my case my GP and also an ENT consultant I was seeing diagnosed my as having vertigo. I noticed a change in my vision and my ENT consultant told me to go to the optician. It was actually the optician that noticed something was wrong, sent me to an emergency appointment at the eye clinic after which I was admitted to the stroke ward very quickly.

Please do keep us updated on your progress. I tend to wear my sunglasses a lot especially in supermarkets and shops where there is UV lighting but I may try a baseball hat as well now!

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Thankyou @Alis for sharing. So similar in many ways. I think my optician suspected something but didn’t say , to be fair I was all over place so tests were incomplete.
Pity.
Let’s keep ourselves updated on any progress. Anyone mentioned or ruled out prism glasses? I will be asking optician at end of month…I have booked a private session to discuss (I hope some options). I read prisms shouldn’t be used early to let things try and recover by themselves. But if they could work be good to know as a back up plan.
All other strategies seem to be about scanning and learning to live with it.
Hope you have tried read-ight application. As it scrolled words in from right I could do it. I really need a scroller from the left for my lefthandside issue.

Wish u all the best and hope you get recovered enough to drive. I hope we all do :+1:

@mccormack5.ed

I did some tests with prisms but unfortunately they didn’t work for me. I have just started a course of Craniosacral Therapy so will let you know how that goes! Here is a link if you would like more information. (http://www.upledger.co.uk/).

@Alis thankyou. Course looks really good. Do let us all know how it goes.