The decline has continued and symptoms and restrictions are now:

-Cant drive - major eye pain and strain after driving even just two minutes that lasts for hours

-Cant watch tv - used to be able to cover an eye and watch a little at a time but now motion on screen and brightness is too much

-Cant do iPhone or computer - causes pain almost immediately

-Have a lot of eye pain, eye strain, dizziness, headache, light sensitivity

-Vestibular therapy, prism glasses, and syntonics have all individually made things worse when I've done them

-Brain just feels like it cant handle much and the threshold is worsening

-Imaging all looks good, and bloodwork same

-Testing shows some vestibular deficiencies, convergence insufficiency, maybe vestibular migraine

-Anyone on here have similar issues and what has helped?

It's been awhile, here is your previous thread that might have some additional information.
Get dizzy and overstimulated watching TV

Have you followed up with Drs as this has gotten worse?

For the tasks that you struggle with, rest then gradually increase the exposure to those triggers. Do just enough activity to cause mild discomfort, but not to much to cause a setback. Rest for a few days to recover, then do a little more. Gradually increase your activity level each week.

There may be some underlying conditions that are triggering your symptoms. It could be one of these 5 things:

1. Blood Flow
2. Inflammation and hormone dysregulation
3. Visual and/or vestibular dysfunction
4. Neck dysfunction
5. Psychological

So you have to check and treat all the possible causes. You mentioned vestibular deficiencies so continue that treatment.

A neck injury can be caused with a low G force event and the symptoms overlap with concussion symptoms so get your neck checked out.

Inflammation could be cause by a poor diet, leaky gut, or microbiome imbalances. I think you mentioned some gut health issues, so continue promoting a healthy microbiome.

Eat an anti-inflammatory diet. Cut out sugar, processed foods, fried foods, and seed oils. Eat lots of healthy fats, fish, protein and veggies.

Exercise is good for blood flow and circulation, so do light - moderate aerobic exercise.

Practice good sleep hygiene so you get rejuvenated at night.

Thanks for your response Drew. As far as some of your items above:

1) Blood Flow - I have had an MRA/MRV done of the brain and it was normal so that may rule that out? I do wear compression socks and think that has helped me return to normal exercise levels.

2) Inflammation and hormones - I did hormone testing a while back and think it was mostly normal. Sometimes my brain does feel inflamed but not enough to show on an MRI as that has been clean.

3) Visual/Vestibular Dysfunction - I definitely have these based on the testing done by both parties. Problem is whenever I try to treat it with vision or vestibular therapy it either does nothing or flares me up, sets me back, and brings on additional triggers that don't really seem to subside over time. It's like my brain gets stuck so if you push it a certain way it reacts and then doesn't recover or bounce back.

4) Neck - I've thought for a while this may be at play but I've worked with a NUCCA chiropractor and they don't think it's likely contributing to these other symptoms. I've also had flexion/extension MRI's and supine of the neck. I submitted all that imaging to a specialized radiology team that specifically looks for cervical instability and other neck conditions and they didn't see anything. I suppose I could try a Digital Motion X Ray but those are pricey and the neck just doesn't seem likely at this point.

5) Psychological - There's certainly some of this involved now as I'm really depressed not being able to do much of anything without it causing me pain and I'm also anxious as I haven't been able to get much help and have been pretty thorough so it feels like there's nothing left to explore. I will say that I've been doing CBT/Talk Therapy weekly for over a year now as well as have tried some antidepressants (I don't tolerate them well), Ketamine (didn't tolerate it well either), and some other drugs. I do ok with Olanzapine as it seems to help some but what else could I try that I haven't on this front?

Thanks for any additional thoughts you may have.

Find a behavioral optometrist or neuro-optometrist to check your eyes.

Home | Neuro-Optometric Rehabilitation Association

A neuro-ophthalmologist might be worth considering....

And endocrinologist might check thyroid function.

Thanks Mark. Neuro Opth says all looks good. Am working with Behavioral/Neuro Opt right now. May be a slight vertical imbalance so we tried prism. I threw them on for five minutes and got dizzy and it flared me up and my symptoms have been worse for 10 days since. Going to try some vision therapy and other things potentially like patching but so far rough start.

Yes I've continued to follow up. My neurologist was thinking it may be migraine for a while so we tried different injection meds but they didn't do anything. His last appointment he told me I may need to consider going on long-term disability and he referred me out to a different neurologist that I'll see in September.

My ENT specialist referred me to an optometrist and they had me try prisms but those flared me up worse. He says I have convergence insufficiency and binocular issues so will need to try to treat it with therapy, which I've tried before and it didn't help but maybe he does it different.