Firstly, I live in the UK.

There is very little help here for PCS, the hospital discharge you unless you have a bleed on the brain and hand you over to your GP who know nothing about concussion.

There are only 3 people from the UK who have been over to the US and trained on the NORA courses.

I saw a guy yesterday who is one of those 3, and after an extensive test he found the following.

My convergence is very poor (the eyes focusing as a pair) this is potentially responsible for all the headaches I get and uneasiness in reading on a computer screen/phone.

He has given me a new prescription for some reading glasses (I wouldn't normally need reading glasses) with prism lens in order to mask the convergence issues and allow me to work comfortably (can only manage 4 hours at present time and it is painful all the time).

I'm hoping this is the next step forwards for me to be able to get back to some kind of normal working routine.

I also have a slight problem with spatial awareness (symptom is losing a bit of balance whilst standing up and looking at phone, however he said it would be controversial to give me a prescription for my general glasses (tv/driving) with prism lens at this time.

I also appear to suffer with blue light, which is found in fluorescent tubes, LEDs (TV/Phones/Monitors). There is absolutely no evidence to support this, but I am taking macushield which helps the eyes to filter out blue light - this may help with the processing of blue light but is an experiment only.

So the reading glasses should enable me to get on with my working life more, but won't help with the general PCS problems I have elsewhere...

He did say Vision Therapy was a possibility later on, but doesn't want to stress the convergence issue at the moment as it is painful for my eyes/head when this happens.

He said it could take up to 5 years for the convergence issues to resolve themselves sporadically.

I'm several hundred pounds poorer now but hopefully I can earn a living again!

Will let you know how I get on when the specs arrive in 10 days.

C

Thanks, I have exactly the same symptoms; convergence and spatial awareness.

I went to a specialist in Cardiff whom recommended my first ever pair of glasses. It was quite a revelation when I was told that I trail my arm on walls and railings because my sense of distance was so poor - I didn't realise I was doing it for that. She tried me with prisms but that distorted the whole world like being a hall of mirrors and couldn't deal with the false horizon it game me.

My glasses help deal with the convergence problems and have made a huge difference to me. I don't feel so unsteady.

I also have a referral to ENT (Ear, nose and Throat) clinic to check for labyrinthitis which may be contributing to some of the balance problems.

Interesting about the macushield - I had never heard of it before. Do you think it works ?

I assume that you had a TBI of some sort seeing as you've read this here?

Were your convergence/spatial awareness issues caused by the TBI?

Are your balance issues severe? Mine are largely unnoticeable until I start looking at something on my phone whilst standing still. Sitting down = no issue.

Are your glasses for reading, or for everything? Mine will be just for reading.

I would be very interested to hear what your prescription is if you are using your glasses for everything and they are helping with balance, plus not using prisms.

As for the macushield, I've no idea if it's working as I've only been taking it 2 days, could be a month before I can comment.

C

I have apparently damaged the frontal lobe and experienced a micro haemorrhage. I used to have very good balance but since the injury have fallen many times and stumble many throughout the day. The worst being in low light where the room seems to spin. The specialists have said that this is down to the combination of my eye, ear and brain signal not being processed quick enough.

High intensity images (big bang theory intro) used to be a problem - now it is just animations of something going down a tube or a rollercoaster. All very strange as they didn't bother me before.

The glasses do help with reading but their main purpose is to help with teaming. Not sure what the prescription is but they have a strange effect in that when I turn my head anything in my line of sight that is vertical leans at an at angle almost trapezoid. The glasses are also only to be worn in doors and are not for outside use.

Very impressed you can work for 4 hours. I would love to be able to do that but can't contemplate any work until I resolve a number of the minor symptoms which individually I can overcome but collectively mean I am unemployable at the moment.

Hi,
I am getting my prism glasses this week, but will also start with vision therapy, my neuro opthomologist say recovery can be anywhere from 6 months to 2 years. She thought that 1 year would not be a bad guess in my case. I am also talking vision therapy online through a company called Vizual Edge. They cater mostly to athletes, but the exercises can be useful for convergence insufficiency and other eye issues.

My neuroopthamologist insisted on a 10% blue blicker tint (it is amber!) because blue light is the most complex for the brain and it will free up brain space (energy) for other things. maybe you should ask to have that added. I feel better with it.
Good luck, i think you will see a big difference. It may take a few weeks to adjust. Perservere.