Irlens syndrome (visual problems) video

Came across this on YouTube

It's similar to another visual processing problem - pattern glare.

Get tested and get it fixed.

youtu.be/FARizLljRkc?si=DzQ...(Not working as expected?)

[Shreds]

Interesting but thankfully not applicable to me.

Does anybody else here sufffer from this syndrome post ABI or TBI?

[Painting-girl]

Watching that video made me incredibly queasy PV! Interesting that children are fairly routinely given coloured overlays to try out in school nowadays, also encouraged to switch their computer screens away from black on white to something more comfortable, but adults could have been overlooked.

[Hidden in reply to Painting-girl]

Yep, you've hit the nail on the head, visual issues are almost universal after brain injury, other people like myself went and got tested and fixed or helped with colored lenses. If it's pretty routine for kids to get tested it should be easy for adults to get screened and tested after a brain injury. But here's the thing it's recognized that this can help kids but if you have visual issues after a brain injury it comes down to being a psychological problem and these optometry tests are considered pseudo science. How does that work? Pseudo science is ok for kids? Or maybe it's not pseudo science at all and many people with brain injury would benefit from being screened, it may not work for everyone but it may work for some.

It worked astonishingly well for me and got my recovery ball rolling without a doubt.

If you look at that video and feel queezy imagine seeing not just letters, words and numbers like that but everything like the weave in fabric, tiles on the walls, bricks in houses, stones in the tarmac, peoples faces, road markings, fences, window blinds and my absolute favorite -man hole cover patterns; that's what my experience was like until I got tested and prescribed tinted lenses. Then miraculously with the glasses on it all just stopped, but if I took them off it all started again. It took three different colors, blue, turquoise and green to correct my vision over two years.

That's why I keep sharing optometric solutions to visual problems and keep telling people to not believe the NHS and their 'psychological and symptom of depression' excuses. Try alternatives even if 'they' say it's pseudo science and see what happens. The only things that really worked for me were the alternative techniques.

Makes you think about it all for sure.

[Painting-girl in reply to Hidden]

It certainly does make you think. We're incredibly badly served on this. GPs seem to lag badly behind on what the sports physios are able to do - and have been writing papers on for years as well. I fear it comes down to concussions not being particularly life threatening, or quick to fix, therefore we fall way down ( no pun intended) on all priority lists...

[Hidden in reply to Painting-girl]

There's a lot more too it. Most injuries are caused by accidents and these have a high litigation value. Insurance companies employ medical experts to find other causes for injuries and symptoms and write academic papers on the subject. This has a major impact on what treatments should be included for PCS etc.; of course they also argue that PCS does not exist and that it's all psychological.

I investigated this in my master's, check out the arguments about what they call 'the miserable minority' yes that's what they call people with PCS. One of the arguments is that if someone goes to a GP more than once with the same symptom then that's proof there are no symptoms at all and it's a psychological issue.

I call them academic trolls.

There's a whole series of arguments, they are not free however but here's a starter if you are interested, your library may be able to get it for you.

pubmed.ncbi.nlm.nih.gov/155...

[Painting-girl in reply to Hidden]

That makes sense - insurance companies have a vested interest in classifying symptoms as psychological, because their insurance policies all have a (pretty low) financial limit for paying for psychiatric treatments. And as a great deal of these are issued as company healthcare policies, it would be a pretty brave employee that asked for extended cover for psychiatric treatments - it wouldn't cross most people's minds that brain injury would be classed as a psychiatric problem. Also that as soon as they class something as chronic they are allowed to stop insurance payouts - hence a great need to class all our symptoms as chronic so that they can switch off the cash flow.This would be the great drawback of the NHS shifting to an insured model - which certain parts of the political spectrum are heading to - care then becomes mediated by insurance companies - my experience of them ( while I did get care, albeit by chance) was pretty awful actually - I had to fight for every last penny - only my experience in the industry and a lot of headaches got me through.

[Hidden in reply to Painting-girl]

Here's the nub of it; when NHS authorities create their policies of care, they use medical expert consultants, they are the same ones that work for the insurance industry and the same ones that work as 'independent medical experts' in legal cases.

A friend of mine from uni in the 90's became a cancer specialist; 20 years later he took the 'dirty money' (his words) and began working as a freelance medical expert with insurance companies. His job was to totally deny the cancer started while the insurance cover was active, that was his sole job. I asked him about how it played on his conscience; and he said when he saw the fee statements, what he got paid, they looked like telephone numbers and he would deal with his conscience later, when he was financially set up for life and happily retired.

So it's all about the money really, but the insurance industry has a great influence over the NHS when it comes to treatment for PCS.

[Painting-girl in reply to Hidden]

That's really quite scary PV. Interesting though. Add in that sports bodies and the armed forces most likely want to play down concussion issues, and it's practically a perfect storm. Not a lot of funding for research I suspect. Explains why sports physios seen to be doing most of the research in the UK.

[Ideogram in reply to Hidden]

Fwiw I'm not sure it is actually that routine for kids to get tested for Irlens, at least on the NHS. I may be wrong but I believe it's a fight for a lot of parents too. But similar to what's been said re insurance, I may be wrong, but I suspect the system's set up to be focused on kids as that's where the money's spent - so parents trying to get appropriate SEND support for their kids, especially as they move towards secondary, and so there's an industry around this.

[Ideogram in reply to Ideogram]

At least I looked for a local optometrist after the previous helpful suggestions around visual processing (I may have the wrong term) and the only local person said he didn't have experience with brain injury but seemed to be much more geared towards kids.

[Hidden in reply to Ideogram]

It's not just Irlen's, I think there are set criteria for these tests. My optometrist used the Cerium testing procedure with me, but she also did the kids stuff as well.

Try BABO

babo.co.uk/

Or Cerium

ceriumvistech.com/

Or Cardiff uni optometrists; Cardiff uni train optometrists

cardiff.ac.uk/optometrists

[Ideogram in reply to Hidden]

Fair.

[Hidden in reply to Ideogram]

I added an edit in the last comment.

[Ideogram in reply to Hidden]

Thanks! (Didn't know you could do that btw! 🤦)

[Hidden in reply to Ideogram]

You just need to click on the 'more' button on the post footer.

[Nackapan in reply to Hidden]

I still have visual disturbances. Pattern glare is slowly improving .

I managed a train journey and the hardest thing was all the glitz and stripes on the stairs.

Vestibular physiotherapy really helped me .

She witnessed my response to overhead strip lighting as I forgot to put on my hat with a brim when leaving the hospital room.

I ducked automatically and lost balance. Stagger walk.

She took me back into the dim room.

Said she saw that as no anxiety, preceded that and no preconceived fear.

A physical reaction.

Believed!!

She said she'd read on my notes ? Mental health problems with odd behaviour ??

Wrote on my record what she saw as was an NHS referral from ENT .

Still wear reacterlights with a grey/ green tinge that was the chosen colour after seeing the professor Opthalmologist.

I can also read a paper bank statement and watch TV.

Took 3 yesrs to get to the stage .

Text still disappears fades from the right as I type .

A laptop screen still too much.

People's clothes when out can impact me greatly.

Leopard skins

Stripes

Geometrical patterns .

Have learnt coping strategies.

Have a good selection of hats.

I had a head injury as a 10 yesr old.

Then a bad fall hitting my head hard on concrete. Right side due to b12 deficiency.

Neurologists had different views on damage.

The neuro Opthalmologist wasnt helpful even with a explanation.

So anyone suffering this, it can and does improve .

It's taken 5 yesrs to get to this point .

I also need regular b12 injections again no firm diagnosis of cause apart from first blood test with a very low reading of b12 .

Causing severe Symptoms and bad falls.

I had 2 brain MRIs

The second a year after the first.

On the report it stated the changes and certabella involvement.

I can totally relate to all of the visual disturbances

Migraines

Vertigo.ect

Was on no medication before very bad falls.

Only on B12 injections now .

Did have some short trials.

Amytripyline

Diazipam

Hrt!

I mainly use the Pernicious Aneamia health unlocked forum as treatment with b12 injections is for life.

I'm so glad PinkVision is still on this forum helping more people .

It was a 'light bulb ' moment for me reading his posts.

Thank you

[Hidden in reply to Nackapan]

Hi Nackapan, thanks! yes still here hanging on by the skin of my teeth. I remember our 'chats'; they were interesting because it makes you realize people have very similar symptoms but they are quite distinct in cause and potential treatment. It seems I was lucky and managed to resolve nearly everything excepting dystonia, spinal stuff and narcolepsy.

Glad to see you are still fighting on but it sounds heavy going having to take those medications; It's good the B12 helps.

I experimented with all kinds of methods as you know, some worked some did not, then I went to uni to research my recovery and found some interesting answers.

I did that, also got a teaching certificate and in the last week have been registered and insured for private practice. I'll start a limited company over the next year.

I've also started a YouTube channel in which I'm explaining the neurofunctional ins and outs of post-concussion syndrome. I'll be giving demonstrations of some of the rehab routines I found useful so people can try them for free.

I'm just getting started but it will all come together over the next year or so, here's the link if you are interested

youtube.com/@mendingbrokenb...

I always appreciated your input over the years and would be interested to know what you think.

[Nackapan in reply to Hidden]

Well done you.I wish you every success

[Nackapan in reply to Hidden]

I'm going to have to listen in stages .So far what i like is your steady calm voice.

Also very clear explanations.

It 'rings ' very true to my experience and probably to many others.

Now able will put more of the puzzle together

I had a brain CT which was clear.

Told a panic attack.

Before avery low b12 level found .

I turned down cbt.

I knew it wasn't the answer for me .

Neither was mindfulness.

I was too ill.

Like you say I was offered a long list of drugs.

I only trialled 3 short term.

Diazipam as a emergency one off 1mg dose a few times was the only thing that actually helped.

What I wax prescribed was quite an horrendous list.

I would probably make a good case study .

I managed to document daily .

I have the brain MRI scans on a CD .

To date noone has had another look at them.

They were a year apart. ( NHS)

3 neurologists had very different opinions.

1.NHS one = Nothing to do with B12 .

Cause hit on head.

But then prescribed uo to 50mg Amytripyline.

I eventually took after a 111call.

I took 10mg at night for 10 nights .

Weaning off was terrible. I cut tablets up.

I refused all 6 other anti depressants offered. By G.p.

2. Private neurologist read my MRI report.

Saw evidence of demyelination explain nerves/ connections take z long time tk heal.

He thought more b12 injections needed

3. Neurologist I paid for as headaches/ migraines daily.

He thought it was constant and some of it rebound ftom to much paracetamol.

I privet that not the case

He prescribed

Propranolol .

I didn't take that.

He by chance had b12 deficiency and had read every paper available.

Told me to keep up the b12 injections but it woujd take time.

He was right .

G.p eventually prescribed off licence as nothing else found to treat.

I will read on when able to process more.

It doesn't help I've never had z scientific brain..

Lots of brain awakening in my skill mix though .

[Hidden in reply to Nackapan]

Just read your comment again and was wondering if you go for annual tests to check the color of the tints because your eyes adapt and correct to the tint you are wearing, so they need to be reassessed. Mine went from blue, to turquoise, to green, then a different green with neutral grey transition. My vision is pretty good now and I only use neutral grey transitions in strong direct sunlight; just like sun glasses. Screen lighting, fluorescent and LED's are a different story.

[Nackapan in reply to Hidden]

Yes was considering that if Prof. E hadn't retired yet.

Thise medications were early on as wasn't coping with pain . Especially migraines.

I've only been on regular 12 injections since the end of 2020.

Very interested in your work

[Nackapan in reply to Hidden]

Yes lighting still a nightmare fof me.House still has uprightness in the corners that work well for me.

I will look at your link with interest.

[Ideogram in reply to Painting-girl]

Same - I had to stop watching.

[cat3]

V. informative Richard. I don't have any of these visual issues but my optician diagnosed astigmatism and prescribed corrective lenses last year. Over a period of months, different lenses failed to address the slightly ''woozy' appearance of print which became increasingly noticeable post brain injury.

Cataract surgery and laser treatment helped for a while with distance vision but all close up vision is poor. I'm awaiting a referral back to the ophthalmologist. I've managed over the years with magnified text on my laptop or kindle but no one has, so far, suggested coloured lenses. It's something I'm considering..

Thanks for the video. Hope you're ok. Cat x

[Hidden in reply to cat3]

Ah, when you visit your optician/ ophthalmologist you are getting your eyesight tested. Your eyesight and your vision are totally different, to get your vision tested you need to see a behavioral or neuro optometrist. They look at issues with visual processing in the brain.

Think of it like a modern camera, your eyes are like the camera lens; the camera sensor is what processes the information coming through the lens, so the sensor is like your brain in this respect.

Ophthalmologists test the lenses / eyes; optometrists test the sensors / visual processing in the brain.

[cat3]

Thanks for that Richard. I can now at least give the impression I have some knowledge of what I'm asking for !

[Nackapan in reply to cat3]

I waited 18 months to see a neuro Opthalmologist at Queens Hospital Romford.The consultation got confusing.

No explanation for my symptoms at all.

With me it's the nerves delivering the information from my brain affected .

I came away the most disappointed to date.

Then as copied to the letter to G.p it was signed

Locum Opthalmologist

No 'neuro'

So do check out who you ate actuslly seeing.

I asked the direct question but in Hindsight wasn't answered correctly.

[cat3]

Yes, thanks Nackapan ; I've discovered there are both Opthalmologists and Neuro optometrists at my previous place of treatment. So it's all down to how long the wait is after a new referral.... 🤔

[Nackapan in reply to cat3]

Yes.My referral was for a 'neuro' Opthalmologist hence the long wait.

I'd seen all the other eye specialists .

So disappointing that after the long wait didn't get to see a neuro Opthalmologist??? But a locum Opthalmologist

[cat3 in reply to Nackapan]

Hope we can both get help ........ sooner rather than later ! 🙂