Neuro-optometrist: update

[NightBird]

On Thursday I had an appointment with a neuro-optometrist in Leigh-on-Sea, and I'm getting a very interesting referral. This appointment was specifically for my visual and spatial symptoms, but I have hope that it will be the path to deeper recovery. He asked me what my symptoms were. (Double vision, radically decreased area of focus, poor 3D perception and spatial awareness, almost absent visual memory). First he gave me a standard eye test, where nothing unusual occurred.

Then he tried out a set of mesh lenses. They were his own variation on an existing theme which generally helps double vision and dyslexia. (Search term: "honeycomb lenses"). They improved my vision in subtle ways. The scene in front of me was less visually confusing, depth perception was more present (things looked more 3D), and bright colours weren't so distracting and prominent. I was more aware of things at the edge of my field of vision, and my eyes were more able to focus. But everything was still double.

He then did a neurological test where he told me to look away, tapped me on the back of my hand and told me to locate the place he'd tapped. I was crap at this. I could feel the tapping but couldn't connect it to the right place on my hand. Apparently this signifies a body mapping problem and is characteristic of something called "dorsal stream dysfunction" (also called ambient processing disorder or dysfunction). The dorsal stream is the neurological pathway that leads from your retina into your brain, but does not handle what we think of as "vision". It deals with spatial awareness and body position awareness, and also has connections to other sensory processing areas. These connections have the weird side effect of making it possible to use glasses and visual exercises to treat problems in other senses such as hearing. (I have trouble processing sound too).

He has now referred me to a guy in Scotland (Ian Jordan) who apparently works miracles for double vision by using tinted lenses. This guy also cures prosopagnosia (face-blindness), which I've also got. He has suspicions of the MMR vaccine, which I had just before my symptoms began. He believes it can interfere with visual systems. The best part of all? He does all his work for nothing.

The part that is still unclear is how (and whether) all this is affecting my cognition. I suspect it is brain fatigue due to cognitive load - my brain is working overtime handling weird sensory inputs and its processing of other things is slowed. We'll see if things improve if/when the vision is dealt with. Until I've seen Ian Jordan, I'm going to hold off on the self-administered rehab program I was considering. I really think this could be the answer - or at least part of it.

[Kirk5w7]

Hi Nightbird, I have my first appointment for vision training in January. My neuro optometrist said that my main problem was coping with having a mid line shift, I perceive the centre of my body is over to the right. I am going to have a series of physio type appointments to try and teach my brain just where my body is in relation to the world.

At this point he feels there is no need for corrective lenses but there is still that option.

Keep us informed how things go, unfortunately mine is not free but like you I am hopeful this will help.

Janetx

[NightBird in reply to Kirk5w7]

I am so glad they've located something concrete. If this fixes your abilities, it will be worth it.

[Bradybunch35]

Wow we just don't realise how amazing our bodies are. I hope you get some answers that help you. Best of luck xx

[sca2013]

Very interesting. Thanks for posting this. I wish you the best and hope this will help you too.

[razyheath43]

Very intersting keep us posted?

[NightBird in reply to razyheath43]

I definitely will

[lucyjenarog]

Hey nightbird 🤗

How are you?

Have you any update on your double vision? Did the chap in Scotland work his magic?

I'm having trouble with double vision too so am looking for some advice.

Take care,

Lucy

xx

[NightBird in reply to lucyjenarog]

Thank you for remembering me. The guy in Scotland was unable to help when he saw me, but I still think he's worth contacting. Different brain injuries respond to different treatments, and mine is particularly stubborn because it's gone untreated for 12 years.

I'm now trying out honeycomb lenses from the guy in Leigh-on-Sea. They improve my depth processing but don't fix the double vision or brain fog. I'm rather at a loss (again). I still think there's a lot of visual stuff which is affecting cognition and memory, but have no idea how to treat it. In the meantime I've ordered some CBD oil to see if it helps.

Lia

[lucyjenarog in reply to NightBird]

Hey Lia,

Ah that's a shame! At least you have given it a go and can now tick it off your list!

Stay hopeful for the next potential cure ☺️ I'm sure it's out there 😘

Do you live in Leigh on sea then?

CBD oil... is that what I think it is haha 😂🙈

Lucy

X

[NightBird in reply to lucyjenarog]

I'm in London, but Leigh is pretty easy to get to. Lovely little seaside town.

CBD: yes, it is, but it doesn't have the psychoactive ingredient so it's legal

[lucyjenarog in reply to NightBird]

Oh not too far from me then! I'm in good old Essex ✌🏽

Oh cheeky! What's it suppose to do?

Let me know how it goes! Do you mix it into your drink then?

xx

[NightBird in reply to lucyjenarog]

Sorry for the delay - I completely forgot about this! It comes in a bottle with a dropper, so you take it under your tongue. There's a pill version too. It did wonders for a guy in my FB group, but isn't doing much for me (yet?)