Went to the stroke clinic today to get assessed for suspected TIA's causing visual problems.
Consultant said my issues were not TIA related because my visual issues (going temporarily blind in one eye) are caused by visual triggers, mainly exposure to LED/ screen lighting.
It happened during the assessment, the waiting room was enclosed with no real light and it has excessive LED lighting. Some of you may experience a similar effects to LED's, so while I was waiting my vision became pixelated, my heart rate increased and my skin became clammy. Then I went into the consultant room, again enclosed with excessive LED lights. My cognition and memory slowly deteriorated over 15 mins, the consultant could see it, then I covered my right eye and the left eye could see only in a grey to darkening haze before going totally black.
Conclusion according to the consultant who was straight talking, TIA's affect the blood supply going to the brain, these are vascular issues not neurological and are not caused by visual triggers.
Visual processing issues after TBI are neurological not vascular and are caused by visual triggers like LED lighting and other factors such as repetitive patterns and particular color schemes.
In the past I was assessed by a behavioural optometrist who managed to correct the issues I had with repetitive patterns and colors.
The optometrist had no answers for the LED triggering.
The consultant today said there is a test that can identify problem areas in the neurological pathways of the optic nerves and the processing areas of the brain.
It's called THE 'VISUAL EVOKED POTENTIAL TEST.'
It is an easy test and is standard in MS assessments, but it is not that common in the NHS.
The Walton Centre (one of their outlying clinics in the middle of Liverpool) does it.
It is also available as a standard test in private sector neurology assessments. (low £100's)
It's a simple test and very cheap, you got to wonder why these and behavioral optometry are not paired up and standard after any TBI because visual processing issues are almost universal.
Not sure how this goes with Strokes because the causation is different.
For me if there are flourescent lights - even the ones that aren't supposed to flicker - I have symptoms - made worse by any screen time - phone, tablet, tv...
Thank you pinkvision for the information. I’ve had four eye tests since my TBI in June ‘22 and another booked next week. My eye sight seems to be better some times and worse at others.
I’m seeing a specialist therapist in the Neuro rehab team who has said my balance and dizziness issues were a vestibular problem which has caused my eyes to do the majority of the work (80% instead of 20%). She said this is what makes me so tired at times if I’ve been doing anything which caused strain to the eyes.
However, when I asked why I couldn’t see anything in the dark, she said something which didn’t seem right. (Sorry I’ve forgotten what she said - happens a lot 😞). I’m wondering if this visual evoked potential test might help. My next appointment is 7 July and I’ll ask her then.
I don’t know about others experiences with after care after a TBI, but mine has been sketchy to say the least. I’ve had to fight to get anyone’s attention and when finally I did start seeing specialists (11 months after the accident) I found out that a lot of what I’d been doing to recover during that time was the opposite of what I should have.
My Neuro surgeon advised my GP to send me to a Neuro psychologist, but there wasn’t any available on the NHS where I live. The specialists I am seeing tend to not really understand my issues and say I need to see a Neuro psychologist. ?!?
It’s safe to say that my opinion of the health service - through personal experience - is very cynical.
With the NHS it seems to be luck of the draw. Some health authorities are good when it comes to brain injury services and others are just awful or they don't exist. It is what it is.
Things that affect vision from a physiological perspective are the cervical/ vestibular/ ocular reflex. Basically the muscles and the peripheral nerves connecting these areas. In the vestibular system the octonia, get knocked out of position but can be 'whooshed' back in with the Epley maneuver or other physio exercises.
Neck, facial and vestibular exercises are really good overall for revamping this system but you got to do it everyday for about three months.
Balance exercises (eg standing on one leg) are good at revamping your physical and neural (brain stem, mid brain and cerebellum) systems, but again you have to keep doing it every day.
The visual processing system from the eyes to the optic nerves and further processing regions are different from the above and the test I'm talking about is for this system.
At the end of the day you have to cover all the bases and do all the exercises and training and get as many tests as possible to either confirm or rule out that aspect of the issue.
I'm just surprised that eyesight tests, behavioral optometry tests and the visual evoked potential tests are not all done at the same time. They could confirm or rule out issues and point the way for treatment options, ie I had glasses that solved some of my visual processing issues, I did neck and vestibular exercises that corrected my balance and spatial awareness but I still have some visual processing issues that are triggered by too much LED/ screen lighting.
Hi, back from GP with good news. Have been referred to neurology in Walton with a specific question that asks to assess the visual processing pathways being affected by LED and screen lighting. The second part asks for further neuro optometric treatment option investigations, specialist glasses, lenses or filters that can help overcome these visual issues.
(The GP said the way the referral system works in my health authority is that any consultant can only assess what the GP has asked for, any other factor is ignored. So the referral wording is very important and she wanted to make this referral specific to actual tests and treatment options rather than opinions.)
GP was amazing, we did an informal experiment in a room lit by LED lights where we just chatted for half an hour and she could see the deterioration in cognitive clarity and memory.
Then my right eye was covered and the whole visual field in the left eye began to grey out.
This convinced her this was a visual processing issue along the optic pathway and not any cognitive or psychological issue.
The GP has become really interested and has started following up on the recent research. She was totally amazed that the visual pathway can be tested and that neuro-optometry actually works for some people with PCS.
your post is very interesting , as struggling with distance vision and have been for a month .. waiting to see a neuro ophthalmologist in aug and a balance physio as my balance is also not right .. I have to look at the floor where I am walking as I can’t keep steady on a pavement if even it’s a slight incline so I’m always looking at the floor .. I think the eyes can be a problem with tho also .. thank you for sharing something else I’ve never heard about .. so good our NSH at information that is desperately needed. Sue 🥴
Yeah I do know .. just working my way though the list of what it maybe Eyes hospital says eye's physically are fine .. diabetes bloods are fine waiting for a 24 hr blood pressure test , neuro oncologist and balance physio .. all of which could have a impact on sight … Sue x
I think some of the issues getting properly diagnosed or even understood at any level of brain injury is that it's all compartmentalized.
For instance neurologists can only do something if they can see it in a scan, meaning they deal with acute injuries. They have no idea about the functional side and for that you see a neuropsychologist.
A neuropsychologist is primarily a clinical psychologist and although they do cognitive and memory tests they seem to focus on the psychological issues ie depression and anxiety.
Then there are speech specialists who can help with aphasia etc
If you are luck you may see a physio that has knowledge of cervical/ vestibular/ ocular exercises but the problem with this is that you only get so many sessions over so many months and from my experience it is nowhere near enough.
Then there is sensory processing and there are basically no measures for dealing with these issues unless you go private.
As I found out today GP's don't know most of these steps. My GP only knows because I told her and she checked in the research literature. As she said to me this is all very complicated and she had no idea about most of them but she could see the logic of all the steps that need to be taken.
If all the people with brain injuries went to one place where all the people who worked within the field were based and each of them knew about all the other diagnosies and treatments then a much better system would evolve and people with injurie may be able to get on a rehab path and may even recover.
Omg theses were my words completely today .. I am a very motivated person and I want to give up in this hell whole of a mess … is there anything that can be done to make these intellectual 🧐 people understand what is really going on ???? Sue 🥴
I found that by getting informed about the realities of the brain injury experience and what the older standard science says is very different. I began to trust my own sense of the injury and tried alternative functional therapies myself, making up routines and sticking to a strict rehab plan, most things recovered. I'm still working on solving the LED/ screen lighting effects.
Interestingly by getting to know what your injury actually is and having a GP that is willing to listen and CHECK the latest research things can move forward.
It's hard work but it can be done. Trust yourself and don't be afraid to speak up to put your case forward.
Never give up, there's always an alternative to fight your way through it all.
you are so right .. I think that is what I am doing as I’ve just gone private to get a MRI so I know know where the brain damage is and I’m on a mission to see a neuropsychologist and balance physio I am determined to get some answers even if I stay as I am plus fighting PIP .. I’m exhausted but the old bit of me which luckily still remains isn’t going to give up yet Sue 😊
I would love to know more about any and all of this…
Working through both a TBI and stroke… (stroke caused by TBI) and all happened due to medical incident.
Currently the dr says cortically blind’ but I don’t really know what this means. Had an eye check and apparently the eyes are ok not damaged but the brain and pathways are?
Some days sees nothing, dark shadows at best. Other days can see hair on his fingers.. I would truly love to find out about any specific tests that could help shed some light.
Hi, like you, my eyes are fine, nothing wrong with them.
Risk of stroke after TBI is increased 3X.
Difference between TBI (non acute) and stroke is that the axons connecting functional areas of the brain can get damaged or severed. Strokes block or de-regularize vascular flow, ie blood, lymph and spinal fluid depending on the type of stroke. If neurons don't get blood they cease to function and can die.
If your eyes are fine and you have visual issues then there is something wrong with the neural signals going from the eyes to the visual cortex.
These are standard assessments for brain injuries caused by MS. Not sure why they don't use these tests for other types of brain injury to check the flow of visual information along the visual pathways.
Another way to get your vision tested is to see a neuro-optometrist, these are not recognized by the NHS so you will have to go private. These use different testing techniques and have different treatment options.
Because this area is not tightly regulated it can be hit or miss for some people.
I saw a behavioral optometrist via BABO and had loads of different tests done that could identify issues along the visual pathways. I had multiple issues and some were corrected by using tinted lenses. The tinted lenses filter out the light that is flowing down certain pathways and through certain processing regions.
I had three different colors first was blue, then turquoise and then green with a transition coating. Many of my visual issues were corrected in 2 years.
My visual issues now are reduced to LED/ screen lighting, it seems my left eye cannot process this type of light and it is causing the loss of vision.
As of yet there are no treatments for visual issues from LED lights or computer screens other than to avoid them.
Thank you so much for this detailed reply. Unfortunaltely we are in Australia and don't seem to have any of the mentioned tests. The other issue is I am not the one with the issue and there is no way he would be able to use a computer - everything is pretty much dark shadows and he uses sound to pick up where people are etc. It is devastating. I had one dr say is cortical blindness - but again so specific tests other then a general optometrist that said eyes are fine. I live in hope one day it will get better. It all happened one year ago now.
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A few more TBI facts; neurological, physiological, psychological.
