Hemianopia

Hello.

I am 45 and have had 3 ischemic stokes in 3 hours 9 months ago. Fortunately got to the hospital quickly and despite the 3rd being like a baseball bat in my head for 3 hours I count myself lucky.

I have various complications and some other stuff, and I’m trying very very hard to deal with it. As everyone knows it’s not easy.

But one of my biggest issues is full right hemianopia due to my third stroke smashing up my occipital lobe.

I have not heard much about anyone on this forum with hemianopia and would welcome anyone else’s thoughts on the matter.

I have basically totally right hemianopia so 50% vision. And just to say to people who are not aware of this it’s in both eyes so closing one eye doesn’t help!

I use various canes and try and scan as much as possible but I struggle to read much at all and blow up phones / screens etc.

Anyone got any tips?!

Thanks

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Hi, I’m 6 years post stroke following a hemorrhagic stroke which paralysed my left side. I also have visual issues and lost my peripheral vision on my left side.
I was an avid reader pre stroke and really miss it. As well as vision problems, I also find it difficult to to concentrate and stay focused when reading and tend to stick to reading magazines and short articles. There are 2 websites you might find useful which offer free on-line therapy for stroke survivors.

Eye Search and Read Right

Both have been developed by UCL and are funded by the Stroke Association.

I used them in my early recovery. Might be useful. I was told that the damage caused by stroke cannot be repaired but maybe there are tips to make reading easier. I hope you find this useful.

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Thanks for responding Susan. I also miss reading a book so much!

I have tried Read Right and it’s not great for me as I can scan ok but will certainly give the eye search games a go.

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Oh my god Chlodog,

I thank your for your empathy but I have to say that I feel a lot more for you than for me.

It must be awful to have it that bad.

With mine I can walk around the house ok and for 100 yards outside with my stick and someone helping me and I can watch 10 mins of tv!

Can’t drive or anything but I live in London and am Uber’s best customer!

Our brains can really be so cruel.

You are certainly in my thoughts today and I hope that at some point we will have stood next to each other!!

Have a great weekend too and lots of love from West Ham, London.

I’d love it if more people with hemi shared as I don’t think we are as few and far inbetween as it first appeared (pun intended) to me!

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I mean than you need to for me!

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So sorry about your strokes and vision problem. It is so important to see a neuro-opthalmologist and not just an ophthalmologist. They know both the brain and Sight issues. Maybe you have already done this? I had horrible double vision and it really affected my balance and hampered my therapy, slowing down recovery. Thanks to the knowledge of my neuro I’m just about back to normal vision.
I wish you the best…prayers and good wishes.
Derek

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Thanks Derek,

Yes I have seen the neuro-opthalmologist and had all the tests and visual field maps etc. The occipital lobe stroke was the worst one for me i’m afraid.

I can’t speak for Susan or Chlodog, but aside from some coping techniques unfortunately there is zero hope for recovery for me.

I’m glad you are nearly back to normal - you’ll keep improving I hope!

Best wishes,

Kieran

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I understand your concentration difficulties very well, because of my mother. She had a left hemorraghic stroke that affected her right side of her body. She recovered very well physically from the stroke (could walk very normally and use her affected with just very slight weakness after 7-8 months or so), but NOT mentally and emotionally. Her concentration abilities and apathy were both terrible: she couldn’t spend more than 5 or 10 minutes on any given task, even though she could play Solitaire very well. Her speech and memory were also excellent. It’s weird how her brain bleed affected her emotions so deeply, whilst she was able to make almost a full recovery physically. Sadly, she died a few months ago from complications related to seizures that she developed from her brain bleed a few years ago.

Please take care of yourself. I know how difficult and life-changing strokes are.

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Hi folk

When I put “hemianopia” to the search bar above In MSG it returned quite a few hits - more than 20 threads from the last 5 years . they may well contain a lot of collected wisdom . I got over 50 for “neglect” but that may be finding the use of the word in less meaningful contexts. I didn’t try hemi on its own as an abbreviation,

When searching for “exercises to improve hemianopia” via Google I got a lot of hits from sites with trustworthy URLs plus a very interesting research paper that suggested the effects were treatable in animal models Reversing Hemianopia by Multisensory Training Under Anesthesia - PMC.

I Also found quite a few YouTube videos. Some are just on stroke vision in general, some are tests but others are exercises that improve processing with hemianopia. Since the optics are working and it’s the brain then neuroplasticity would seem to be relevant. I know @DeAnn has posted about eye tracking etc exercises

Ciao simon

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Hi there I have a left side Hemonopia at 41 years old, which happened after a cartroid tear, doctors didn’t unblock as they said it was too risky. I really wish they had tried. I have two young children to look after which keeps me going and I cannot give up ,must just keep staying positive even though life is very challenging sometimes, with sight loss. I would love to be able to drive go to supermarket by myself but my independence has taken a knock. Have you tried Pele lenses they might be worth a try I went to Bristol to have mine fitted they definitely worth a try. They help to expand your visual field. I tried mine 18 months after stroke and am thinking about giving it another try. I am always looking for new things to try. Tried Nova vision light therapy, Prisms. Worth giving these things a go. I have two little helpers that hold my hand when they see me struggling, bless them sending my best wishes as I know how difficult this can be take care you are not alone x

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Just wondering if anyone has had hallucinations at all following Thier sight loss Hemonopia, I’m three years post stroke and still get hallucinations people morphing into different people and shapes?

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I didn’t have vision effects from my stroke but I had left with a greater propensity to hallucinate.

I’m aware that sometimes I struggle to interpret what I’m seeing like when you look at one of those pictures that can be a young girl or an old hag and you have to place an interpretation on it.
I find that occurs with everyday needs
I can imagine things in it - often a cat in the corner of my peripheral vision - and that’s probably explained by the fact that we’ve got two so I’m coming up with a rational hallucination that fits my reality! :-)?

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Yes the brain is so complex, I often have colour changes and people’s faces morph into different people, it can be quite strange wondering if it’s a good thing the the brain is still changing even three years on.

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The Pele lenses sound interesting thanks I will look into them!

Hallucinations!!! Yes all the time. I often find that my mind makes up something on my right, even just sitting at home. My housemate normally sits on my right in the living room and I can’t see him normally if looking at the TV or at the floor or table as I most often do, but I imagine he is standing up or eating something or wearing a particular shirt and then I look round to find he has actually gone into the garden for a cig and isn’t even there…

I also get a sort of chain of broken glass type weird diamond stuff across the border of where my vision disappears and this can just make me have to stop and close my eyes for 10-15 mins.

I also see the morphing stuff and lots of animals like polar bears in the street! odd! The brain is very weird.

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The broken glass stuff sounds like visual migraine. I have no medical training & I’d wonder whether that isn’t your brain trying to interpret at the periphery of your vision
That would make me feel that exercises might be worthwhile

Just ignore musings on my part…

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I have no medical training either and try and do as much research as I can but haven’t really been able to properly explain the broken glass stuff to anyone or find much but what you say makes sense.

I’m going to try more exercises. I think I must be due another neuro-ophthalmologist appointment soon I think so I will also make a few notes about what everyone has excellently contributed to this thread and talk about them.

Thanks to everyone for making me feel less alone.

Please continue musing!!

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I went to turners in Bristol to have the Pele lenses fitted or I think York vision care do them too, there aren’t many places that do unfortunately. I have struggled to find any source of rehab around Hemonopia, because everyone says I look ok! Then I must be fine but as you know it’s like I have stepped into another world when you have sight loss. I haven’t had any nuro opthmoloy referral, i was just told I had Hemonopia and have had to find out slot of this for myself. Take care and good luck, please let us know how you get on x

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OMG you should have had some specialist referrals surely?! Do you have a good stroke consultant / GP who can refer you?

One of my problems that really annoys me is that people keep saying to me you look good!

Yes because I’ve lost 2.5 stone in 9 months and one of my biggest pleasures is going to the barber and making sure I am presentable.

I literally had someone say to me the other day - well you don’t look blind. Arghhh. I said I’m not blind I’m partially sighted as I said and you don’t look like an idiot but you clearly are one. And I don’t like being like that. I find it difficult to explain to people. Why can’t you just close your right eye? Because it’s in both?

So I have taken to carrying around a copy of this with me this as it helps a bit sometimes.

What does a blind person / partially sighted person / stroke survivor look like anyway?!? I would love to know how to tell.

I now use a sunflower badge and with my cane and RNIB overshields and being 6’2" that helps.

Also Elle have you got a proper CVI etc? and your PIP stuff?

It’s all so complicated but I’m lucky to have a weekly occupational therapist visit and she has been a god send!

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Also sorry but do you have any links or details about the Pele lenses please?

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My reply to ”you look well" is some variation on ”thank you I am well however if you’re referring to my stroke that didn’t make me ill it made me broken and the broken bits are on the inside where you can’t see it I’ve got dead brain tissue that will never recover but I’m slowly learning how to cope through my neuro plasticity. It’s slow and hard I have the battle every day and so does my wife"

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