I've now been seen. Testing took 1 3/4hrs
I've been prescribed precision tinted glasses. Very thorough.
So really hopen they help me in the house in the evenings. Fingers crossed.
I have severe light sensitivity and ongoing head pain and weaknees after bad fall and b12 defiency found.
I’m happy to hear there is a route back. My vision is the one thing that’s not getting better since my BI - it’s not severe so I was cleared to drive but it’s just irritating so hoping I’ll find a solution also.
Really glad for you to be able to knock one more thing off the recovery list!
Well I haventitled got the glasses yet! ! I do hope so. Thanks
Hi Nackapan, please could let me know who did the testing was it an optician or a nhs hospital, I would like a referral for light sensitivity?
I have a big problem with light sensitivity which increases the pain and frequency of my headaches and migraines, and means I can only be under bright lights briefly with a wide brimmed hat and dark glasses, and then I sit down with my eyes closed too, if I am in a room where I can.
I have found if I try and stand up and talk I get aphasia, if I sit down my speech is a bit better. I saw a neurologist recently who said the aphasia is the migraine not the brain injury getting worse, which was a relief.
I listened to a radio 4 programme where a scientist said lights e.g. in supermarkets, have increased from 10 to 15 years age when they were 200 to 300 lumens, by over 300% to 1000 lumens, which may explain why I found things easier initially when I had my brain injury 14 years ago.
The scientist said 20 mins in a supermarket with bright lights, deceased people's melatonin levels for 3 ?hours. I have spoken to people who work in a bank and a supermarket who have to eg wear tinted glasses because of the lights in the supermarket , or in the bank they managed to get less bright lighting, as they were all getting headaches.
Yes that does make sense if you struggling still.
I also wear a hat and tinted glasses. I get round to but food as quick as I can.
I had ti go into my building society. That was awful. On leaving I went sideways as often my legs go weak in lights straight into a women. Once in natural light I recovered but had a headache that night.
I had to pay to get the assessment as no longer on the NHS
£225. You yhrn have to pay for the glasses. I wear varifocals so am having a pair made with my prescription. Haven't got them yet. The recommendation came from Pinkvision on here and someone else but can't remember user nameThere is a list. I will find it and post.
Www.S4clp. org
Have a list of practitioners. They are opticians with a special interest i think.
The University of Essex. Did the reserch. If you Google professor Arnold Wilkins. (He is retired now)
The tints are mainly used for learning disabilities. Dyslexia and autism. Have been found to help people after brain injuries and migrains.
Very interesting what you heard on the radio.
Can you describe the test. Mine were basic like looking at beads on a string, coloured acetate whilst reading and trying different prisms whilst reading a book. I only have reading glasses at present to try and they are not helping much. Prisms didn’t help.
Seeing if I should go somewhere else that has more in-depth testing for daily glasses.
This Web site was given to me that lists the practitioners.
Www.S4Clp.organisations
Pinkvision helped enormously with this.
I had similar tests to you at first as many Optometrists dabble I think. As created for people with educational needs like dyslexia. It can help others with TbI and migrains and light sensitivity.
The tests I had were the normal eye test and health or eyes then a machine with different colours. It lasted for 1.5 hours.
The first one I saw used 'thompson' overlays. I tried this first as the cheaper trial. Th3 overkays that is . I thpight the right trsting but reslisr more a dyslexia test. Still £90. I don't know what you paid but I think Its a reflection on what you get. The overlays were £20. Included.
This make is.' Cerium' the colours used for overlays differ from glasses with the same person. ??
It's early days yet to actually how helpful they are going to be. Had to give it a proper chance though. Winter and being dark side early miserable as cant get around the house and if I hit a light feel so ill. Si tend to sit on my bed in semi controlled darkness from dark which is getting earlier and earlier.
I spent a lot if money seeing a neurologist. As NHS one discharged me on getting uo you 50mg amitriptyline which I dudnt do. Tried 10mg
To be told I'm suffering with headaches due to vestibular disturbance. !!
No quick fix
So DIY if I can avoid 'heavy' drugs.
Hope the list useful to find a practitioner near you.
My case is more complex and linked to an acquired TBI.
Paid about £250, but the coloured part of the assessment was more, as you said, like a dyslexic one.
Trouble I find is that the test and the machine does not emulate the real life situations of different light and patterns as well as being fatigued.
They also do not produce pink or purple tint that are polarised or chromatic.
Yes . I also had a head injury. One neurologist said post concussion syndrome. Only thing actually with a test result is b12 defiency. Had 2 brain MRI scans.
Soi think all cases quite complex
And all very individual. So no guarantees . I'm just hoping to get some relief.
It has worked for people and the tests are done in different light settings.
Have to try these things.
Hope you do get some help from the system if you actually got the glasses
Sorry your vestibular disturbance threw me. Was that a private diagnosis?
My disturbances have been put in the migrainous bucket with the only treatments being the same as for migraines.
Have seen Nhs neurologist that thought PCS with varrant migrains . Private neurologist that disagreed and thought b12 defiency and chronic ongoing tension headaches with some migrains s?? 3rd most recent akso added vestibular distubance. Which I think now means they don't know. So many theories? ?? Standard medications seem to be amitriptyline or bets blockers Triptan
Only reason I paid was to get first MRI read as Gp worried me saying irregularities he didn't want to comment on. 14-18 week wait. So I knew not urgent but it was the not knowing. Saw one on Nov. 18 and nah in Feb 19 and June this year
Cognitive Assessment
PIP assessment
Driving assessment
Visual weirdness. A quest for knowledge.
