Astonishing results after behavioural optometry.

[pinkvision]

I wrote a long first post and at the end I mentioned that I'd been tested by a behavioural optometrist. I had the glasses last Saturday but have waited till now after using them to let everyone know how it went. Remember I had a hard hit to the back of the head, had a negative CT scan, diagnosed with concussion. My first post has a lot more detail of the symptoms I experienced if you want to cross reference with your own.

The report from the optometrist (who stressed that ABI was not her speciality) mentioned visual stress, photophobia, distortion of the visual field, pattern glare and visual disturbance was found and the cause is cortical hyperexcitability. (This is a general term and covers everything from migraine to parkinson's. She said you need to be tested by a specialist in ABI.)

Anyway, I put the glasses on and my vision settled immediately, everything stopped moving and the brightness reduced. After a few minutes I got a sharp pain through my right eye. I had to get used to the prescription and deep blue colour lenses, I felt out of sorts.

I went for a walk in the bright sun, had no issues at all, I could focus and see everything. It's an overwhelming feeling, a bit of normal. I walked for about 2 hours and began to feel that I was becoming aware of my surroundings in a dynamic 3D way, my hearing became directional rather than central and the sounds separate not coming in all together. I just crossed a road, I did'nt stop and look again and again and make a decision to cross, I just looked back and fore and gauged the elements of the scene and crossed before knowing it. My memory and concentration began working in unison with my vision and hearing.

This is in the first few hours, I had energy, I did'nt know what to do with it, it's an odd feeling. That night I closed my eyes and there were no flashing lights, yellow clouds or spiralling coloured globes just a dark black blue. I slept deep and well. Here's the next brilliant thing I've had tight muscle grip from my right eye across the whole side of my head and into my neck, and an area from my cheek through the ear area to the neck on the left side. This was gone when I woke up.

I looked about next morning, without my glasses and the patterns were moving as usual, the outside light was too bright, words scattered across the computer screen. I put the glasses on and it all stopped immediately. Since then energy levels have increased, the visual, hearing, memory and concentration have tightened become more cohesive.

The glasses don't work in fluorescent light, it's even worse.

I still have glitches where I forget what I'm talking about, but reduced to only 2 in 3 days, where the norm is aprox half a dozen per day.

My speech still slurs.

Future organising is as bad as before.

Today I began joking and teasing and was absorbed in a conversation and not separated from it trying to keep up, dealing with each sentence separately not seeing a bigger picture like before. I have had no daytime sleeps at all since the glasses, I have no fatigue any more (touching wood).

I still get a few moments where everything stops but I'm aware of my surroundings and not just blank for that period of time.

I am astonished by all this.

I did this as an experiment after reading about how the visual system is key to most functions in the brain. Other people have done this too, it's common in the US, and depending on the damage a person has after an accident or illness will depend on how the visual system affects it. Most of my symptoms seem to be improving a lot and some have had no improvement at all.

My injuries are minor in comparison to most other people on this site and are mainly visual in nature. I think anyone with a visual element could find some kind of improvement via this method.

The person who tested me, I found her independently, is a member of BABO, British association of Behavioural Optometrists. (I think I'm ok in mentioning this). This is private testing, I thought it was cheap.

I spoke to a member of Headway staff on the phone before the testing was done and was asked to report back the findings as this process in not commonly used in the UK.

Get informed if you think it may help.

[Kathykathy]

Thank you for this post so little knowledge or help for eye issues after brain Injury

[pinkvision in reply to Kathykathy]

Very true KathyKathy, I found all the information via US sites and stories from people in the US who have found this route to be very powerful indeed. None of the doctors I have seen here in the UK have ever heard of this 'treatment'. It has certainly eased many of my symptoms, early days yet though will keep updating. Spread the word, the UK is 20 years behind in this field. Thanks for replying to my post.

[sealiphone in reply to pinkvision]

Very interesting to read a more detailed account of your 'reality' and whilst I recognise some aspects most are very different to mine.

Do you know if the cognitive tests showed a defincency in a particular cognitive function which relates to your experience, mine is abnormal Attention.

[pinkvision in reply to sealiphone]

Hi no such tests were done for me, but that will be the next phase, the vision tests and treatment should be done in association with neuropsycological treatment. This seems to be unknown in the UK. The combination of the two help to build new neural pathways, it's called brain plasticity, stimulating a bypass of the damaged area. A friend of mine had a catastrophic brain injury and now has a pretty good life, he wrote a book called, Totem Pole, his name is Paul Pritchard. Check out this story.

[sealiphone in reply to pinkvision]

16 years since my TBI, so this approach may have missed(?), very interesting ideas though.

I've found that the approach to fatigue following a TBI is all based on US research in to CFS.

A lot of work is done by the Veterans Association, especially around PTSD, as you say leading the way in research and treatment.

[pinkvision in reply to sealiphone]

these conditions have no 'pharmacological' value and research money comes from odd places like american football, where a player with a head injury loses his monetary value for resale. The lessons learned in the US started to spill out into the public arena 20 years ago. It has'nt even started here yet. The GB women's hockey player has been on TV during one of her neuropsychology sessions after she got a concussion in the olympics. It will happen mainstream soon in the private medical sector but don't expect it on the NHS unless you are very lucky.

[sealiphone in reply to pinkvision]

I quote "these conditions have no 'pharmacological' value", hit the nail right on the head and then you have the issues of how you measure positive benefit outcomes, this is all weighted to the obvious physical disabilities, typically around strokes, mental health and cognitive problems are more amorphous.

We don't stand a chance, perhaps that's the 1st leaflet you should be given.

[pinkvision in reply to sealiphone]

Relying on the health service alone is not enough, try to keep informed with all methods that may help you improve your condition. I keep saying this, the US is miles ahead in their thinking in regards to brain injury. The system there though is, if you can afford it you can get it. That is the way to think here too, we have become too reliant on the thought that the NHS will provide the answers. The reality is that you cannot depend on them or you'll end up on the scrap heap. Keep looking keep fighting.

[Hidden]

That is amazing! Are they normal glasses or adjusted in some way?

[pinkvision in reply to Hidden]

Hi yes the glasses are normal but the lenses are specially made with tint coatings, occlusions and moulded shapes for specific needs. The company that make them is called Cerium visual technologies. Professor Arnold Wilkins, University of Essex, provides the trial data involving visual discomfort, learning difficulties, reading induced issues and photo-sensitive epilepsy. There is no mention of ABI etc but the above data sets are some of the symptoms of brain injury sufferers.

A little further research could cover a wider range of symptoms specifically identified with brain injury sufferers. Maybe Headway could find out more information from Prof. Arnold Wilkins for their web pages and produce an information booklet. This would help spread the message to a wider range of people.

[lcd8]

Thanks very much for letting us know your experience. I have a long-term brain injury that I was born with and seems to be affecting my vision as I get older. A few years ago I was really suffering with lethargy. I was tired the whole time. But due to the absence of headaches I didn't even think it could be connected to my eyesight. As I hadn't had my vision tested for a while though I made an appointment. The optometrist was amazed that I hadn't had headaches as he declared me very long-sighted. He said I should wear glasses for watching TV, reading, using a VDU and driving. I started doing all of this and it gave me a new lease of life. The constant tiredness disappeared completely. Who knew?

[pinkvision in reply to lcd8]

That's great to hear, it's a good feeling when that energy returns. I think many people with brain injury condition both minor and severe could benefit from complete vision testing, not just eye testing. Spread the word. Good luck to you.

[blackperil]

Can you provide contact details of your specialist and an indication of the costs. I have contacted my local BABO and he is going to ask the chairman as our local specialist has no experience in BI area.

[pinkvision in reply to blackperil]

Hi Blackperil, it seems there are very few if any at all, in regards to BI. The one I saw had no BI experience, and she said so, but did come up with some tests and identified some major issues. I would not recommend her, terrible communication skills and no follow up. The good news though is that I looked into the company who made the lenses, Cerium Visual Technologies, on their UK web page is a provider finder, put in your post code and it will show you your nearest provider.

I was desperate to find a solution to horrendous visual distortion and visual hallucinations. I found information on US web pages regarding 'colourmetric testing' via behavioural / neuro optometrics. This testing in the UK is experimental, however find your nearest provider that is willing to come up with some tests to help you. It has improved my life enormously.

Oh yes the cost, the eye test was £53 ( NHS reduction may apply) the other tests were £75.

The lenses £250 and of course the cost of your choice of frames. Wrap arounds are best for blocking out unfiltered light and also, this is a good point, they look as if you are trying to look cool rather than looking strange to other people. Another person I know needs green lenses but has bad frames, she has been a target of abuse and even told that SHE looks like a paedophile.

I have blue lens oakleys, people give me a strange look but I don't get abuse.

Hope this helps.

[mereby]

Hi. I had a ball hit me in left temple and have post-concussion syndrome. Headaches, photophobia, phonophobia, speech difficulty (word finding) and some focussing problems among other things. I kept getting fobbed off with no deep examination of the symptoms I was complaining of until my osteopath said I should see here behavioural optometrist. This was after seeing an opthamologis and his optometrist who said I was fine just getting old. Which was so annoying because I could see fine before the hit, I'm also in the forces and had to have good vision to get in. So the behavoural optometrist did all tests starting with accuity, which was fine, and found a horizontal misalignment in my focussing system which is helped with prisms. I find the glasses help with the eye pain and some of the cause of headaches. But it wasn't until 6 months after the concussion, being fobbed off and feeling like a hypochondriac complaining about my eyes that someone finally solved it. Even still I showed the report to a rehab neurologist who expressed doubt on the theory that the concussion caused my problem. But you have to remember I'm in Australia and I think most so called professionals are behind the US and UK in reasearch and knowledge about this sort of thing. Certainly I'v found heaps of info on it from the US. I think I'll start printing it and taking it with me when I go to doctors.

[mereby]

And I also found little relief under flourescent lights at work. Had to put the sunnies back on. Getting prismm sunnies now, hopefully will solve that problem. Or if we could just have the flourescents off at work, stupid collueagues.

[pinkvision in reply to mereby]

Hi Mereby

It's difficult getting people to believe you, I don't think many doctors are trained or even aware of visual issues after a knock to the head. I think the key to it all is finding the right people. I think it's a good idea to take information to the doctor, my first doctor would not even listen then, so I changed GP practices. My new GP is brilliant, I think they take it a bit more seriously if you have moved to them.

I'm glad you've managed to find some help, I'm sure it will be hit and miss for a while. I got in touch with the inventor of the Cerium vision technology system, Prof Arnold Wilkins, he told me that the lenses are an aid and not a cure, also that different lighting may require different lenses.

You said you are in the forces, you could see if you can access help through them. If you have other symptoms eg memory, concentration, cognition, especially when you get overloaded with light, you could try to see a clinical or neuro psychologist at a brain injury clinic.

I have found so much information on youtube regarding visual problems after a knock to the nut.

Any way mate, you are on the right road, you just got to keep going.

Good luck

[eileenleach]

I had two unruptured brain anyeursms that were clipped 5 years ago behind me eyes now I’m interested to know if that’s effected my eye sight in a big way as since then I need glasses n without them I can barely see, I put it down to middle age but maybe it’s not n maybe it can be corrected, I’m going to look this up x

[pinkvision in reply to eileenleach]

Hi Eileen

The visual system is a complicated thing, I would definitely investigate the problem. A good behavioural optometrist should be able to help identify the issues. A good resource is the RNIB, ring their helpline explain the problem and they should give you a webpage with contact details. Some of the optometrists have clinics at universities where there is an interest neuro-visual issues. It's just a matter of ringing and asking questions, eventually you will find someone.

Wishing you well, good hunting.

(You may want to ask your GP, however myself and others find the visual aspect of brain injury is on the whole outside of their knowledge)

[eileenleach in reply to pinkvision]

I’ll research now as my drs r useless, I went back after my ops Cos I was constantly tired n when I told the dr she didn’t av a clue why so I said coujd it be from my brain ops she said I don’t know, shall I refer u bsck to neuro so I said yes, there all locums there except one who’s there a few days a week but she’s the worst one of em all n that’s not just my opinion, I see posts daily on facdbook from friends saying she’s useless too n I had a bad experience with her when my mums breast cancer had come back, receptionist informed my niece over phone n when dr did home visit she asked to see rash on her boobs n questioned slits on both boobs n asked what they was for n mum said biopsy’s she said oh well the results are not back yet n I went mental, I said u didn’t even look at her notes did u because if u did ud kniw biopsy’s results r bsvk n her cancer is back Cos ur receptionist told my niece yesterday, she apologise then x

[pinkvision in reply to eileenleach]

Hi

It can certainly challenging dealing with the system. It's like I said you got to find the right people. I'm glad you are going to look into it, was the best thing I did and have moved forward leaps and bounds since. Remember we are all different and what works for one may not work for another.

Wish you well, keep fighting

[eileenleach in reply to pinkvision]

Thank you and the same to you x