A very, very positive update

[pinkvision]

Have not posted for a couple of months but want to share some information.

On my last post I had just got my new glasses from the optometrist and said they had made an instant difference to my BI symptoms.

It took a little while to get used to the glasses and now they are really paying off.

All light sensitivity except for LED has gone.

All physical and 'mental' fatigue has gone.

All the tension headaches have gone.

Cognitively I have improved dramatically. I can keep up with conversations, I am quick and full in replies, there is no more jumble and no overwhelming feeling. As part of my recovery I took up touch typing and been journalling for day to day short term memory. I had a typing speed of 80 cpm at best with a 10% error rate. My typing speed is now 130cpm with a 4% error rate. This is a better than a 50% improvement.

Everything has improved so much in a matter of weeks. Physically I'm shocked, I got my bike out last week and went on a few short rides up to 10 miles. Today I said sod it and went for a 37 mile ride and did it in one go in 3 hours and 5 mins.

I have so much energy both physical and mental like I said. It's like a whole blanket of fatigue has lifted off and freed me. I feel brilliant and have done for weeks.

With LED light there is an improvement but the flicker still swirls my head a bit but not as bad as before. My optometrist said that the flicker can be sorted out after the brightness is solved.

All the anxiety etc that I had almost constantly before has gone. If you read my posts you will see that I have gone through a visual method of treatment and these are my second set of glasses. The first set solved 'pattern glare' (basically everything looks like it is moving). The pair I have now are dealing with the brightness and the next pair will sort out flickering indoor lighting.

I have banged on about this topic before and would highly recommend looking into optometry to address visual sensory overload. It may not suit everyone depending on type of BI but the difference it makes is just amazing. I came across this method after reading a book 'The ghost in my brain'. I tried it, out of desperation and it has produced the results for me in a very big way.

I also followed methods in conjunction with the visual treatment. These were from the American veterans association that encourage repetitive exercises for periods of 8 weeks which wire the processes into the brain and make them automatic functions. I also used meditative techniques to focus on the activities and also minfulness to help reduce anxiety etc.

Many people have been a little negative about these processes on this site when I wrote about them and I was debating whether to put this post up. My thoughts are how much would you give to get a life back. These methods used are not recognised by the UK medical establishment, except mindfulness, and this worries me. The last person I met from my brain injury unit encouraged me to keep going because of the dramatic improvements. She is the assistant who deals with patients on a daily basis and said there are no real rules and if something works then go with it. She also said that dealing with sensory overload is a major benefit because it exposes what is underneath it. Another major beneficial practice is to develop attention, she advised me to try 'single point focus' meditation which is another version of minfulness. This has paid dividends also.

I have found that all these methods I have used have helped very very much and I think in the very near future I will be even better. I'm almost normal again.

[twice]

Think I mentioned before in one of your posts that I have also had great results with these glasses, light sensitivity and visual processing has improved dramatically for me also, it's frustrating that these glasses are classed as controversial and not recognized by the NHS.

I would reccomend that people read the book a ghost in my brain, it's a fascinating story of recovery from TBI .

So pleased that you are having great results with them,

Congratulations on your success

P.S. and the 37 mile bike ride

[pinkvision in reply to twice]

Thanks. Think North coast of Scotland is on the cards for a bike tour along with Orkney and Shetland, hopefully in the autumn. Finland then next spring. Plans! hav'nt made them for years.

[cat3]

'I'm almost normal again' . Well Pink, you've certainly struck gold with this ! I'll be looking at the 'Ghost in my brain' as I've suspected for a while that vision issues could be at the root of some of my problems.

So good to hear a success story and well done on getting back on the bike …...and even more so on the 37 miles ! Onwards & upwards..... 😑 Cat x

[twice in reply to cat3]

On YouTube there is a dr laurie chaikin who is a neuro optometrist and she explains about how your brain cant process what your eyes are seeing after brain injury because the connections in your brain which send messages from one part of your brain to another part have been broken, the vision and balance video after brain injury is really interesting, this is how I first found out about the glasses, had mine for a year now

[john-boy-92 in reply to twice]

A stroke gave me hemianopia that means although I have 6/5 vision with distance glasses, part of my peripheral vision on the right hand side is missing. I'm a mystery patient for medical students, and my vision baffles them. On the downside, my driving licence was revoked and the DVLA Medical Group block training pre and post driving assessment, although DVLA policy is to permit training for exceptional case drivers.

[pinkvision in reply to john-boy-92]

Hi John boy,

You may want to try to go private, most visual treatments/therapies are not NHS. My optometrist has just retired but you may find information from John Glover in Stockport. If you can afford it go to the US, the mindeye institute in Chicago, or the Padulla institute. Cardiff university has a teaching and research group and also have a clinic open to the public. This is relatively new in the UK but will become more mainstream.

[john-boy-92 in reply to pinkvision]

I wasn't aware that hemianopia is clinically treatable. One company uses flashing LEDs on the fringe of peripheral vision to try and train the brain to automatically scan. There was talk about two years ago about injecting stem cells into the affected area of the brain. Group 1 driving licences get revoked if the horizontal visual field is less than 120 degrees, after the EU Directive was implemented in March 2015. So far, the Government have not indicated if that legislation will change after the Brexit transition. As one of the vision expert panel remarked, the term exceptional cases is a misnomer as hemianopia is a common effect of a stroke.

[pinkvision in reply to john-boy-92]

Not sure about the rules but it may be an idea to have a chat with the person I mentioned just to see if anything can be done. If your issue is the eye itself, ie sight, then the NHS does that, the optometry is for visual problems at the brain level. It may also be an idea to ask the RNIB for information on your condition. They put me on to John Glover.

[cat3 in reply to twice]

Thanks Twice. I'll Google Dr laurie chaikin..

[sashaming1]

Wow. Good report. Congratulations.

[Cornishwaves247]

This must feel absolutely amazing. All your persistence has paid off. I can imagine how rewarding this is for you. You are evidence in that improvements happen after lengths of time and continually being persistent. I have read some of your past posts and am so happy for you that you have resulted. I think I’m going to look further into this area and see if I can benefit from it. Well done in your achievement 😁

[pinkvision in reply to Cornishwaves247]

Thanks. Now to get fit and train the brain further.