"The Ghost in my Brain": Has anyone else read this... - Headway

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"The Ghost in my Brain"

FlowerPower62 profile image
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Has anyone else read this yet? I know some have, you told me about it! I thought it was amazing. I took it with me to my husband's appointment today (I had requested further therapy) and saw his consultant from when he was in rehab, which he left in April. I was so frustrated, as she had never heard of it, didn't want to know about it, dismissed the idea of glasses and the puzzles, basically she knew it all and was not receptive to anything new. How can she know it wouldn't work for him? And how are we supposed to get the treatment anyway, other than go to America? Googled neural optometry, and there are some places, but how do I know they are OK?

Her only answer was to have him back on the ward in a few weeks for more diagnostics and therapy instead of referring him to the community therapists (which can take 12 to 14 weeks to get anyway!) which has upset him, as he hated it, but he agreed. Feel like we're back to square one, I could cry. I did, in fact!

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Pairofboots profile image
Pairofboots

You have the right to ask for a second opinion. It would take time, but if you feel that the relationship with the consultant is not positive, then it might be the way to go. Unfortunately these days, you do have to be very clear about what you want. I wish you luck.

FlowerPower62 profile image
FlowerPower62 in reply to Pairofboots

Thanks x

pinkvision profile image
pinkvision

Hi, I read this book and listened to many lectures on this subject. I went to see an optometrist and got tested, was prescribed Cerium lenses, blue ones. When the glasses arrived I put them on and the world stood still again, it was astonishing.

Ok this is not new in the UK but it is not recognised by the health authorities, finding the right optometrist is difficult. I saw Janet Green in Wigan, she did a bit of research before I saw her as she is not neuro trained. She did good for me though and I will recommend her. The best person seems to be John Glover in Stockport I think. Google. This is not available on the NHS.

I asked my neuro-psychologist about vision testing and her immediate reply was that vision has nothing to do with the brain. I laughed at her and asked if she really believed that. I explained about the optometry and she said she was not allowed to discuss it as part of her job but privately she said she had heard good things about it but because it was not officially recognised then she cannot comment.

It does not work for everyone, but get tested anyway what can you lose (only money) but there is so much to gain.

I found it so good, it really started my recovery. It seemed to address the visual part of sensory overload. I have since discovered that I have multiple visual issues and I will get more tests when I can.

I wore my glasses for 14 months and the pattern glare aspect of my vision has recovered and I don't need them for that anymore. So you may find that there are multiple issues but the testing will find the worse aspect first.

From everything I have read it seems that if you don't deal with sensory overload especially the visual part then you will have difficulty recovering.

Google the mindseye institute and the Padula institute, both in the US. I have written plenty on how I went through the vision testing etc, it's all in my 'page'.

FlowerPower62 profile image
FlowerPower62 in reply to pinkvision

Hi, I thought it was you! Thanks for replying. Did you actually have problems with your vision, or was it, as it said in the book, more to do with light entering? Did the glasses work with your eyes closed? Did the optometrist do the same sort of tests, like the bells? Sorry to bombard you with questions! I will try and find your page. I am really interested though, and as we're in Liverpool, it's not far from either of those places. Thanks again. X

pinkvision profile image
pinkvision in reply to FlowerPower62

I have realised after all this time that there are numerous visual processing issues involved but until you begin to recover from one or more problems you won't know what you have. There could also be vestibular problems affecting balance and spacial awareness that can feel like visual issues.

My biggest problem was that everything that had a pattern would move, like in an LSD trip, carpets were a nightmare. So when I was tested it was for this, it is a problem with the processing region of the brain.

When you get tested they will test your eyes, which is classed as sight. They will then test the signal which is the optic nerves and finally the processing region of the brain in the occipital lobe.

I need to get further tests done for horizontal shift, basically if I read the lines move in opposite directions.

The optometrist will come up with tests following the information that you provide. I follow Deborah Zelinski's work from the mindseyeinstitute via the facebook page 'the ghost in my brain'. There are quite a few Dutch people on it and they say there are good optometrists in Holland.

Not sure I've answered your questions.

So many people with visual issues on here at the moment, was feeling like a leper being the only one for a long time, I'm sure people thought I was nuts when I said I live in a world like a permanent LSD trip on steroids. That was before I saw Janet in Wigan.

FlowerPower62 profile image
FlowerPower62 in reply to pinkvision

Thanks again, I will certainly look into it. Not sure if my husband will be able to answer what I'm sure will be detailed questions, but we'll give it a try. The doctor really annoyed me yesterday by dismissing it out of hand, taking the view that she had worked with the brain injured for 9 years, so she didn't need to read (no time!) or consider new cutting point theories. Just does what she's always done! I even offered to lend her the book, which she'd never heard of, but she wasn't interested. all the best. x

pinkvision profile image
pinkvision in reply to FlowerPower62

I'm afraid that until the medical establishment recognise visual processing as part of BI then it will just be waved away as nonsense, yet there are so many people who have boosted their recoveries through optometry in the US and Canada where it is available. My neuro-psychologist privately says she has heard positive results but she is not allowed to discuss it in her job as a doctor. My current GP is really interested in everything I try. He is anti pharma and tends to steer towards therapies that have positive influences. You can only keep searching for information and trying new things no matter what others say or think.

FlowerPower62 profile image
FlowerPower62 in reply to pinkvision

Thanks for replying again. Could I ask one more question? How did you get a neuro psychologist, was that on your own too? Then I promise I'll shut up! 😁 X

pinkvision profile image
pinkvision in reply to FlowerPower62

You need to ask your GP. If GP does not refer you ask your neurologist.

Ask as many questions as you wish, it's not a problem.

You said you are from Liverpool, surely the Walton Centre has all the services you need.

FlowerPower62 profile image
FlowerPower62 in reply to pinkvision

My husband was in there, yes, but when he got passed on to another place for rehab, it became their problem. We did see the consultant at the beginning of December (first time, due to cancelled appointments, she was nice enough, and referred him to the GP to get stuff done. I don't know, perhaps I expect too much.

pinkvision profile image
pinkvision in reply to FlowerPower62

No you don't expect too much. It seems to me the system around BI is fractured, surely to be efficient all the treatments necessary should be inhouse and should all run together to get the patient recovering faster. Leaving it in the hands of GP's is not a good idea, I'm sure they are doing the best they can but as you may have noticed on here they don't have the full knowledge of BI.

FlowerPower62 profile image
FlowerPower62 in reply to pinkvision

Agree with all of that absolutely. X

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