Neuro-ophthalmology following BI

[TreesMTBI]

Has anyone on here gone on to discover that neuro-ophthalmology helped following BI? As well as pretty constant tinnitus, I also suffer an awful awful sinus headache that suddenly comes on, all on the left side - this time it has turned into vertigo. I’ve read that all 3 of these symptoms may suggest binocular vision dysfunction following a BI/concussion. The GP has agreed that it’s highly likely these symptoms are all related to my accident. However I didn’t think to talk about the bvd idea with him and as I’m awaiting my first neurology appointment to get their initial diagnosis, I thought perhaps I ought to wait for that first? I wondered if anyone has pursued this avenue themselves and how they went about it? I’m in the UK. (I’m nearly 6 years post-acccident, but only now comprehending all my symptoms are most likely due to that accident.)

[skydivesurvivor]

got 16 years on you!! Spent much of the last 10 redeveloping the new ME, & maybe a little adjusting, accepting who I now am!! Had counciling, the headaches I experienced too . Felt like someone was jabbing into my brain with a pick- axe!! Good news is the brain apparently is busy retiring?!!! Sorry, partially sighted REWIRING guess I did retire at 34!! But from more than the average?!! See, if nothing else have learnt to laugh at myself!! Very therapeutic. SMILE to spite the injury?!! Helps too, good luck & hope u come back to the site! Happy Easter x

[Letsrock]

Hi, I feel the same, like someone is pressing on my head where it was hit. i have lost partial eyesight due to pain behind my eyes and the left side and rear of my head is so sore I can't sleep at night lying down or even in a chair as your head turns. I have just come back down to earth as nobody is helping or understanding my pain. The neuro says it is a migraine, and the GP is saying, "When are you going back to work?" Which I can't do as I can't see to travel 60miles a day never mind eyesight on computers.

I have phoned for help from headway, who I cannot get through too, my employee assist program and they say, why are phoning us? And the nhs mental health who say it us not mental health as it is physical and then the physical side say it is mental health. Help! They drive me insane.

looking up Internet everyday to find answers and found balance rehabilitation. Have been at it for 2 weeks now with eye movement exercises after strokes. It is very slowly in helping, but recommend them.

As skydivesurvivor says rewiring. If only we had support as feel very scary being dizzy that you cannot go anywhere by yourself. The balance rehabilitation book I had says it is practice that rewires the brain. so if you feel dizzy or sick like sea sick then keep doing it till you retrain your brain. Upon that note I had enough of sitting feeling sorry for myself and decided if I cannot live I would finish it and headed up north to the hills on tuesday. My adrenaline kept me going for the first day, then I was really sad and scared in a strange place all by myself and dizzy and just kept repeating practice, practice, it is all in the head with a very sharp pain! I have got through the worst and just got home again just now feeling that was a success with the eyesight clearer and dizzying still there but mostly gone and walked up and down 3 floors of stairs repeatedly which I could not go up or down 10 steps.

Sorry for the long winded answer but yes eye and balance rehabilitation and a lot of stamina as very scary. Good luck!!

[LostGenius in reply to Letsrock]

Sorry to hear that you’ve experienced the same thing as a lot of us on. The re-wiring takes time and lots of patience! Most of the struggle is the mental side it seems if trying to not give up when the brain 🧠 is going haywire! Like I mentioned in my post simple things like throwing & catching a ball or even just bouncing it off the wall help to re-train the visual system. I hope you’re making more progress! 🙌🏻

[Leaf100]

Hi TThere is an neuro optometrist where I live and quite a few of the people with brain injuries go there, in fact he has set up a relationship with 5he local society to help make it more accessible.

I spoke to a few of the people who tried it and also a doc that saw a lot of people who had tried it.

The first part is some testing. From that they can see if adding prisms to glasses will help you, of if you would benefit from types of therapy they offer.

This has to do with how your brain and eyes work together.

The people who had the prisms all said they helped a lot.

The reviews of people who tried the therapy were mixed. They all said they felt super horrible while doing it, so much so they really couldn't do anything else while they were , and it goes on for 3 months or more.

One or two told me they stopped making progress and so stopped, one or two said it was the best thing they ever did.

It is very expensive because it takes a lot of appointments. We're talking 3 or 4 thousand Canadian.

I got tested for prisms but didn't need them, in my case I was told it would cost about 4k to do the treatment.

I decided against it because. That is a lot of money , especially when it might not work. And, I live alone so can't incapacitate myself, I have to be able to function .

There are no standards of practice for this type of therapy, either. This particular doc has been doing this quite a long time and is keenly interested.

Referrals can take a bit of time, I don't see the harm in asking for an assessment from the ophthalmologist before seeing the neurologist. You will get a completely independent assessment, and that isn't necessarily bad.

The neurologist is unlikely to have a cure for anything, just may perhaps stick a different label on you.

I am biased, I admit. At a certain point whatever they tell you you have doesn't matter, because they offer no solutions. I have found I have gotten where I have by following my own awareness and I tuition, by trying various things, and figuring out what works for me.

Lately I have found community acupuncture is helping a lot. I think in the UK they may also call it multi bed. It is affordable and so I can do it often and it is helping me sleep better, which is key. I also am finding it is reducing the headache component as well, even though all I asked for was help with insomnia. (I have had headaches since the accident - 14 years or more)

So, if you want to check put the opthamolgy thing, I say don't wait, just get an assessment. You can always tell them you will hold off deciding on therapy til after your neurologist appointment. And, if you dont need it, you will know.

Leaf

[LostGenius in reply to Leaf100]

As they say on any get rich quick program “individual results may vary”… it’s good to be a skeptic since everyone that ‘helps’ brain injury seems to be out for a money grab since typical insurance covers nothing. I found the results were totally dependant on MY effort not the therapist. They just provided the tools (different lenses coloured glasses that were loaned out) & simple at home exercises.

If you needed prisms then likely from what my doctor explained:

1) it means your brain may have shift it’s vision baseline slightly

2) You need to relearn your place in the world by re-training your brain & eyes together like a baby.

What I thought was interesting was when she said People who played a lot of sports that required hand & eye coordination had better visual skills than average to begin with (also were usually better drivers) so that might have an easier time re-learning it all. Also the staying home part after injury reduces our interaction in the world so she said try to get out in crowds and re-train how to walk amongst people (who we cannot predict where they walk) which helps train your brain on how to respond when people walk into you. Very interesting stuff to say the least! She said babies who play and socialize with other babies learn vision skills faster so try to do that as an adult again.

[LostGenius]

Yes! I did a regular eye test after my accident as I felt like I could see. They said nothing was wrong yet I couldn’t read…

After waiting 3 years for an appointment it was worth it! They told me all the things that were wrong that could be corrected and 3 months later I was no longer bumping into things on my right side.

Originally, they said I needed prism glasses to correct my vision but I had zero money and my car insurance refused to pay so I went without them and did all the home exercises like crazy. That’s how I improved dramatically… I was determined. There were simple tasks like looking along a string with beads so you focus far and near that helped a lot.

I had a baseline/midline shift in the brain which meant the way my brain was no oriented in skull was a tad shifted. The vision therapist explained that means the way my eyes & brain now perceive the world was tilted… so you need to re-train you brain and eyes (like you did since birth) to understand where you are in the world.

Simple things like throwing and catching a ball help train your eyes & brain (without any cost) or taping on wall targets to a metronome or even computer video games with targets you focus on can help.

If you want the computer game info to help your eyes I can look for it. (My memory is useless) Just let me know!

I wish there was a home starter kit because I don’t see that there therapist’s roll had much place other than reading on paper what the activity was… it was just knowing the exercises that would help for my particular vision defects. I had almost no depth perception when I started… I was scared to walk out on uneven pavement or grass as I was always tripping, no I see the depth. I also had issues where I was getting strobe effect (triggered seizure like effects) when light would come between trees when travelling in a car it’s better now so I can drive again. I just need sunglasses in bright lights when overloaded. 😎 That was a big improvement!

The vision therapy was the treatment that changed my life! It was expensive (about $200 per session, 2x week for 16 weeks, 2 exams at $600 each) but totally worth every penny.

[Leaf100 in reply to LostGenius]

Glad the vision therapy worked for you, LG, - it does for some.It does not work for everyone though.

My neuropsychiatrist , when asked, said the need for prisms is a good thing to get checked for, as it is quite simple and everyone who needs them can be identified and the solution is well understood. But, as far as vision therapy - very much a mixed bag. So whether people want to try it depends on if they have funding or deep enough pockets that they can swing it - and don't mind the low odds.

If someone is short of money, it might not be the thing they ought to pin all their hopes on.

Perhaps in future they will have standards of practice and know what works in what situation, they don't right now.

I talked to about 10 people who had been through it,. The ones who needed prisms found they worked and were happy. The satisfaction with the eye therapy was extreme ... 2 of the people were over the moon and the others were not - 4 people said after about 4 to 6 weeks they were no longer progressing and were told it wouldn't work for them. The other 4 people more or less just shrugged and said it didn't result in the big change they thought they'd get.

There are also many different types out there. The man provider here has a system that generally takes months and costs in the thousand. Another provider has a simpler set of home exercises done with some simple equipment they sell, that can be gone through for about 1500. I haven't found anyone who has tried that one, though.

There are a lot if options out there and many expensive, so it is good to thoroughly research them all and choose wisely.

I spent a lot of money on things where I was promised major results and don't have much to show for it.

The most progress I have made is by seeking things I could do at home, things that challenged me , but weren't impossible - there are free computer games online - simple ones for kids - you can try a bunch and see where you are at, and then maybe buy them if it is practical. For example, I found hidden object games good for helping ,y vision and my coordination, and also some thinking and memory skills. Cradle of Persia is one where you remove and realign tokens in patterns- that helped a lot - I had issues with watching things move quickly. And some of the time management games where you have to make things for customers also helped. Some simple 'find the match' , etc, also helped. It was best for me on computer as I have motor control issues with pieces of paper and fine motor control, so I separated that out to focus on other things. And then of course, physically noticing what is hard and practicing it. Took me ages to be able to turn door handles and stir and it still makes my brain tired quickly.

And none of it will work unless you do it - so from that point of view we are responsible for our own therapy.

I really wonder how many people working as therapists really get it - I can't say I have run into anyone who really did, even when they thought they did. Part of this might be because I could not tolerate groups or public spaces, and all the people who do bi therapy publicly are only in such places - meaning they won't see people who have certain types of issues.

And of course, it's complicated because we don't know how it will go or what it will be until we try it.