New member and vision

[GAV2025]

Hello everyone,

I’m a TIA stroke survivor nearly 4months now, I’m 44yo and so far the consultant doesn’t have a reasonable cause, new blood work has been ordered this week with other, unusual even, theories in mind. Last visit to stroke ward was promising as I was told the last CT shows the blood flow is completely back to normal in the previously obstructed area of the brain. It was an obstruction that I was lucky enough to be near a spectacular teams of surgeons that managed to remove the clot via an artery in the thigh, I understand quite a specialised and rare procedure.

I’m still at the stage where I’m scared and angry and frustrated and afraid and hopeful and despairing and of course I’m not known to be patient either.

I was left with a new vision ( something is different, missing) and I have seen two opticians; one of them worried about something ‘nameless’, but didn’t do anything about it and another one carefree, nothing seems to be a problem. Things seem to get worse somehow, not better, some info online says it’s normal for things to get worse as some other neurons die together with the already dead ones. Online I can’t find advice on how to promote neuroplasticity for visual cortex if that indeed is the problem, it is what I suspect anyway. Sometimes I wonder if I didn’t do really bad going back to work in less than 2 weeks after being discharged.

I asked the stroke consultant for a referral to an ophthalmologist on last appointment, now it seems I have to make just 10 more phone calls each to the hospital and the gp surgery, because they keep pushing the other one to refer. I’m angry at the stroke consultant for not arranging an eye clinic appointment themselves even before discharge.

In case you all didn’t know, having had a stroke is not a good enough reason to be seen by an eye doctor or any other specialist.

I am waiting to eventually see an eye doctor before opening a case with DVLA, which didn’t have much to say earlier as I called them before these things started to shape into visible issues, but really I’m hoping that whatever my sight is troubled with will get better one day. Just to be clear I’m not driving yet. I’m hoping one day to be told by adequate professionals ‘it’s fine, you’re fit to drive’ and to drive as public transport is a joke in terms of costs and reliability.

I see some people asking about 2nd opinions in private from neurologists, does anyone have any experience or advice with private consults with ophthalmologists / neuro ophthalmologists? Not only they are very expensive, to be seen alone, nevermind tests. Is there much that they can do? If so how come you can’t find much info online?!
The internet is not very generous with exercises for visual fields, I see this as something that was noticed by other members as well.

Anyways, I feel I should be more trusting in the way things are and more grateful and hopeful that things will be better.

Thank you

[ManjiB]

Hello @GAV2025 - Welcome to the community.

I don’t have any specific experience of your particular condition and I am sorry you are having trouble getting to see some specialist healthcare professionals. My observation is that the whole field of Stroke survival and care is way behind other branches of medicine and shockingly so.

Wrt the stroke consultant and GP bouncing the referral responsibility, have you tried Patient Care Helpline to lodge a complaint? If you are not happy with what the stroke consultant, you can make a complaint though I don’t know how successful it would be. I once tried to use the service and was hugely disappointed, but it is there and you may have better luck.

Wrt your comment about having a stroke is not a good enough reason to be seen by an eye doctor or specialist, are you able to be specific about exactly what problems you are experiencing and then ask to referred on that basis?

@GAV2025

I was left with a new vision ( something is different, missing)

Perhaps if you can expand on this and be a little bit more specific, it would help the GP or stroke consultant to explain what the eye specialist is needed for?

I am sorry I am not able to offer more help, but I expect soon there will be someone on this forum who will be able to point you in the right direction.

Wishing you all the best.

Namaste|

[Norma751]

Welcome Gav2025, I hope you will be able to get help for your vision difficulty. I echo ManjiB’s comments in that I am/we are no experts, but I agree that the onus should not be on us to need to seek further assistance after our stroke. It is a scary time and new to us. I hope you can get what you clearly need to navigate through this. Best wishes Norma

[Mrs5K]

@GAV2025 Hi & welcome to the community. Sorry to hear of your stroke but hope you find the forum a great place to be for support & advice. We look forward to hearing more from you as your journey progresses.

I am surprised that no referral has been made to ophthalmology re your vision issues. I had vision issues with my stroke & I was referred by my stroke consultant when I was discharged from hospital. If it was me I would speak to your GP & insist they refer you. You shouldn’t have to concern yourself with the wrangling between the 2 of them.

There are eye exercises that you can do but you need to know what the problem is first. Perhaps an optician can advise whilst you’re waiting for an ophthalmology appointment.

Initially after a stroke things can get worse before they get better but things should improve.

Hope you manage to get things sorted.

Best wishes

Ann

[Mich-mm]

Hello @GAV2025 i’ve seen three entirely different opthanologist who ignore the double vision i report and don’t address this or the peripheral vidion and depth processing issues i have, i miss things i reach out to touch!

[EmeraldEyes]

Hi @GAV2025 and welcome to the forum and welcome to your new normal too

The first 6 months of stroke recovery are all about healing and repair work going on in your brain. Neurons functions are disrupted, particular those surrounding the dead ones.

Because of this, they are having to make new connections or piggy-backing off existing one, if it is possible. And non of this work could possibly be completed in the “back to work in less than 2 weeks after being discharged” that you have given it. It’s called brain fatigue for a reason, it’s having to work double and triple time in order cover ALL current functionality whilst it does this. So when the brain is at its limit, it has to do some temporary shut downs, to find rest where it can. That’s what decompensation is all about. And this is where you find out you are not in control, your brain is in charge and you can Ignore it at your peril.

Want to see what's going on inside your stroke brain

These are the neurons in your head trying to rebuild connections and whilst they’re doing that, they’re exhausting you and require lots of sleep and nutrients to fuel the that recovery process. Why do you think babies sleep so much, feed so often, get cranky and cry a lot…because their whole brain is newly growing and developing. Here’s a single brain cell looking for a connection [Differentiation of hippocampal neuron in cuture] And here’s one ‘finding that connection’ [F…

This is marathon not a race, slow and steady is what wins it. The brain needs time off, it needs frequent rest during the first 6 months.

For me, it was my hearing that kept fading to nothing by the end of each day, getting earlier and earlier. And all I could do was go to bed and eventually sleep my way through it. That started about 4mths after my stroke so my gp referred me to ENT. And about a year after that, when all investigations were done, I got a set of hearing aids and never had an issue after that. I do still know when the hearing goes, because those are times I have to turn the hearing aids up. It was never every day anyway but it was becoming more frequent. I think it just depended on how fatigued I was, done too much.

And that’s the trouble with brain fatigue, it’s nothing like physical fatigue, you don’t have that feeling of being tired or like when muscles tire. It basically just starts reducing functionality. Like my stroke leg, I walk just fine on the whole but when the brain’s fatigued it starts to drag a little and the fingers of my stroke hand start to tense up.

The key is managing how much you can do in a day/week, how much is too much?
That needs to worked out, through trial and error. Take note of when your sight is at its best, time of day; when it’s at its worst and what you did in the hours/days preceding that.

I’m 63, so retired, and 4½ years post stroke now, which was also diagnosed as a TIA, I beg to differ. And in that time I’ve recovered enough that I’ve been back driving for about 3yrs now. I lost my speech so still have a touch of aphasia but masked enough that strangers can’t really tell. I do a lot of working out at the gym, travel about and socialise, and currently up to my neck in redecorating. And you will get there too, just give yourself time to heal first. Don’t put yourself under needless pressure, don’t give yourself needless set-backs, it doesn’t do you any favours in the long run.

And give your brain some mini breaks throughout the day, just 5 minutes here and there to just sit still with your eyes shut, in peace and quiet if you can. Every little helps, gives the brain a chance to take a breath. Just 5 minutes of not having to take in and process so much. I do that frequently, even as I’m sitting here typing out this reply And on the occasions when you really feel like you can’t or don’t want to do something, it feels like it would be a great effort but you don’t know why? That’s more than likely your brain’s way of getting you to shut down because it needs a rest. You’d be a wise man to listen to it

I am only an expert in my own recovery but I’m no professional expert in stroke recovery.

Lorraine

[Russ1]

Gav
I feel your pain and annoyance, I had double vision in hospital and given a
set of glasses to sort it but then nothing. Got discharged from hospital and told to give it TIME! . How much time is enough. No exercises nothing. After 2 months of being home I decided to use my prescription glasses for my short-sighted vision and within 2days the double vision was nearly gone , 2months later it has gone. So it seems the glasses for double vision were stopping my eyes from adjusting ,no specialist told me anything. A least it’s back. Rant over.

Rus

[ManjiB]

Well done Rus - sometimes you just have to do what you have to do. Somehow, you worked out that your prescription glasses are worth using, whether you wanted to read something, or just became curious, you did it and two months down the line your double vision is almost gone.

It’s amazing what the healthcare professionals don’t know. I can only assume they don’t know this otherwise why give you the double vision glasses and no follow-up actions/activities. Could they not have explained that if nothing changes after a certain period of time, go back for a further check or with the glasses they gave you, you should expect to see some change in “x” weeks/months or whatever.

So many people on this forum are learning to do it for themselves and good for them, for I feel if they don’t they may end up going nowhere!

Keep going and please do keep ranting - your rant might help someone, especially if they have double vision and double vision glasses that did nothing for them.

[GAV2025]

@Russ1 Well done Rus!
After reading your post I did the same, I took the glasses I had before, see what happens?!!
Few more days of wait to see who and when will refer me somewhere.
Thank you

[ManjiB]

Wouldn’t it be wonderful if like @Russ1 , you too could a result.
Looking forward to an update from you Gav and who knows Rus may have found a solution to all those inflicted by double vision following their stroke.

I would love for that to happen

[Lizzie22]

Hi Lorraine,

This is a great piece of information and very well described. Thank you for explaining it so well as I was wondering what was happening and can now see that I have been overdoing the physical activity.

[Nicola_Moderator]

Hi Gav2025

Welcome to the Online Community. We’re sorry to hear about the challenges you’re experiencing with your vision. I hope you’re able to get the answers you need, and the right support for you.

I can see the community has already rallied round to welcome you and offer their support.

The below might also be helpful too:

• We have some information about vision after stroke on our website, which you can find here.
• You might also find it helpful to sign up to our Online Activities Hub, we have monthly sessions where we have specialist speakers who talk about different topics related to stroke and will be having an upcoming session on vision later in the year. You can find out more about Online Activities here.
• You might also find it helpful to speak to our Stroke Helpline team too. You can call them on 0303 3033 100 or find out how they can help here.

I’m sure these guys will continue to give their invaluable support by sharing their experiences to help answer some of your questions.

If you need anything whilst you’re using the Online Community, please feel free to tag the Community Coordinator @Anna_moderator into your post or contact us directly through the service desk.

All the best

Nicola

[EmeraldEyes]

I only learnt through trial and error myself because I didn’t have the ability to question or find the reasons why. I wasn’t able to manage technology much in my first year post stroke, and reading was as hard as speaking was for me

So I always write with a view to those similar to myself back then and give as much information as I can. I could just about read a few lines or a short paragraph at a time. So when I found a post that I thought might be informative and relative me, I’d just keep it up on screen until I got to finish it. Because if I were to close the post it would be lost and gone forever, I’d never be able to find my way back to it. I learnt that mistake very quickly And those were the days before I’d ever managed to register on here I’ve improved a lot since then

Lorraine

[Mich-mm]

Hello @GAV2025 i was in a specialised neuro rehab hospital -RHN. I saw an opthamologist twice in my three years there my eye-sight is dreadful, i have double vision and perception issues - i reach out to touch things that aren’t there my glasses which the opthamologist prepared for me make a HUGE difference but no one has ever addressed the double vision. As others have said persist on demanding that you see an opthamologist. Best of luck

[Russ1]

Good luck I hope you get sorted

[IreneFC]

@GAV2025
You appeared to be treated wonderfully in the beginning. I am going to have my eyes checked this evening as I know my vision has gone down but when i originally said to optician. They said everything fine. NO ITS NOT. So I will see what tonight brings. I wish you happiness and best wishes for someone to have a look at your eyes and help you. Take care

[GAV2025]

Hello #IreneFC! Thank you for your wishes!
How did your visit to eye specialist go? I hope you got good news!
I’m seeing someone private tomorrow and as it happens on the same day I make this appointment, I mean yesterday, I receive the copy of the letter from stroke consultant to GP, instructing them to refer me to ophthalmology, finally.
I’ll keep tomorrow’s appointment and see how long until the NHS referral kicks in, maybe I can use it as a follow up, maybe I’ll cancel.
Good luck for bigger and better, to all of us, every day!
GAV

[IreneFC]

@GAV2025
My optician visit was a waste of time. I think I will be going down the private route. All I found out was my reading prescription has gone up. Complete wwste of £30.00

[GAV2025]

Since I last wrote I’ve seen the ophthalmologist, as it happens my visual acuity is good with the old prescription, I didn’t need new ones as the opticians recommended.
@IreneFC I believe opticians are meant to sell glasses and vision products, so they’ll bend the truth just a bit when they can, to make that happen.
Today I’ve seen another opticians for the visual field test and already sent the results to ophthalmologist, now I just wait for them to eventually reply.
Seeing the results myself I know there is big trouble, I just need someone with “Dr.” In their name to say it. I hope to remain hopeful that things can or will get better.
Public transport it’s going to be for a very long time .
Thanks for listening.
GAV

[Mrs5K]

Depending on your vision issues, there may be some exercises you can do to improve your vision. If there is there’s every hope you may get back to driving.

Hopefully the public transport in your area is better than where I live