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Brain not "showing me" my peripheral vision
Everyone is stumped, wanted to post and see if anyone has experienced anything like this before.
M, 33, 6'3, 155 lbs, no other health issues.
November 2021 start noticing my focal point in my vision seems to have shrunk.
Over time this continues to worsen.
I go to eye doctor and he says there is nothing wrong, change glasses. I change glasses, no affect.
Fast forward to today (July 2022), peripheral has worsened to the point that I do not even see my peripheral anymore unless I try to focus on it. There are no black spots, no missing spots, no "shady" areas, my full field of view is there, IF I focus on it and try to see it. Otherwise it is like looking through a gift wrapping tube.
It's hard to describe because it is so wierd.
The best description is as if you were daydreaming, staring off into space. You are still seeing, but you are not really "seeing" until you think about it, or something gets your attention. Then you realize you were staring. This is what my peripheral is like all the time. I have to purposely focus on it to see it. Or something shows up in my peripheral that makes me notice it. Otherwise it seems like my brain is just not showing it to me.
Some people know the feeling of standing up very fast and your vision seems to disappear for a few seconds, this is also a good description of what my peripheral looks like all the time.
My brain still notices the peripheral, and I can tell because if I am approached on the side, or a car beside me approaches in traffic, I suddenly notice it. My brain is basically seeing my full field of view, but I don't notice it unless I focus on it. As if it's not showing it to me.
It does fluctuate and gets better and worse over the coarse of days.
We have tried several eyeglass prescriptions, and several contact lens prescriptions.
An interesting observation, when I switch glasses/contacts, the fluctuations change for a few days. It may stay better or stay worse for a few more days. But other than that it continues to fluctuate, meaning that it does affect it somehow, but never fixes it.
So far, I have seen 9 ophthalmologists, 3 optometrists, 1 retinal surgeon, 2 endocrinologists, and one neuro-Opthalmologist. I have had stacks of papers of blood work, an MRI with and without contrast, several OCT scans of the eye, optic nerve, and all the stuff inside there, several prescriptions of glasses and contacts, and a thyroid ultrasound.
"We don't see anything wrong with you."
Mayo clinic was a big hope for me, since they have a team that is good at tracking down strange things.
Ophthalmology at Mayo called yesterday, "we reviewed your stacks of paperwork, we don't know either, there's nothing we can do for you."
I'm worried that this is eventually going to happen to the focal point of my vision as well if it is not figured out. Since there is nothing wrong with my eyes or optic nerves themselves, I'm beginning to lean more towards something wrong in the brain, even though the MRI came back clear.
The only other thing I might add is that I got the second dose of Pfizer in August.
Would be nice to hear some thoughts from other people that are dealing with eye issues, or maybe somebody that has had similar experiences.
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Thanks, yes vision is such a huge part of life. I could have lost a leg and it would have less affect than this does.
I think what really bothers me is that my lifestyle is all about travel, hiking, adventure, going places, seeing other cultures, ect. This pretty much destroys that.
I'll post an update when I hear about their decision. Hopefully he will accept and have some new ideas.
I keep thinking this really seems like an autoimmune problem, with how strange it is.
I'm really surprised that every test that checks for that comes back clear.
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1 ReactionHello, I have not logged on in awhile again. Nothing has changed really, except I did get to see the big guy at UT Southwestern in Dallas, that everyone bragged on. He wanted to do an OCT and a visual field, (the exact tests every ophthalmologist has done). I gave him all my records and the detailed timeline I have written each month of my symptoms and updates. After the tests, I waited for his expert opinion in the room, curious to what this experienced old guy would say different from all the typical optical clinics I have seen. He read the papers, looked at the tests, and said "everything looks normal, so just give it time."
.....huh???
I told him "this has been an entire year, I'm going blind and everyone just keeps acting like it's nothing."
He kind grinned like I was being overdramatic, walking out of the room and said "ohh, your not going blind".
and that was it..... That was my experience with the "second best hospital in the State of Texas".
I called later and asked if he had any ideas of things to try. He said to try a couple weeks of Adderall to see if it "helped my brain focus on the peripheral". So I got a 3 week prescription from my PCP, and started to test it. The results were very negative. I felt very jittery and could not focus on anything. I cut the amount to half (5mg), but it was still pretty bad. I quit after 6 days. It was some strange irritating stuff.
I contacted him again and asked him if they could send me a referral to Neurology, since so many people have mentioned that this appears to be a neurological issue. He was very hesitant to put the referral in, but eventually he said he would do it.
I hoped maybe the Neurology group at UT would be a bit better experience, more like what you would expect from such a hospital.
Instead they called and asked why I wanted to have an appointment. I explained the situation, and how it seemed to relate to Neurology. They acted like I walked into a throat doctor with a foot infection. "uhhh, we don't know what WE would do with that. Sorry we are declining your appointment request."
Like they didn't know vision is controlled by the brain or something.
So that is my update. Sorry if it seems mostly negative. I don't have many positive feelings anymore. Another appointment with my original Neuro-Ophthalmologist in a couple weeks, mostly just an update with him and new glasses. Our last visit a few weeks ago, he said " I believe you, or you wouldn't be coming back all the time. Something is wrong with you, I just honestly don't know what". It's good to hear that. He does have me trying a light therapy right now, called Syntonic Light Therapy. It doesn't seem to do much, but at least the dude is thinking outside the box and reaching for ideas.
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1 ReactionSo sorry for your experience. I also saw a quack who wanted to perform surgery on both my eyes. Just from the way he treated me…I am in heaven and you in hell my dear….I am never going back. All the best, Marianne
@88lance I am experiencing exactly what you are and am in multiple different therapies to try and address the issue. I have two issues, one is occlusal, meaning my bite is not balanced and my brain has trouble sensing my molars on the left and right, which is part of what the brain needs to be grounded, otherwise it thinks it's falling. Vision is another sense the brain uses for grounding, my brain has difficult noticing my left and right periphery, I am left eye dominate. If you can find a Postural Restoration Institute trained PT near you, they are familiar with this condition and can help you. They have dentists, vision doctors, and physical therapists all trained in helping with the mind/body connection and focused on diaphramatic breathing with proper rib cage expansion. You most likely have something else going on other than that your brain is just not noticing the periphery, because these sensory issues cause the brain to turn on muscles as compensatory strategies to keep from falling (the brain thinks it's falling or off balance without sensory input from feet, molars, and eyes), then your body learns to breathe in these compensatory patterns, which your muscles adapt to and keep you held in that pattern. If a PRI trainer were to put you on a table and test your hip flexion you mostly likely cannot abduct on your left side, or maybe both sides. That means you're not walking properly which means you're not diaphramatically breathing properly. If you go to YouTube and look up Neil Hallinan, he has many videos on people who have exactly what you are describing, just type in Neil Hallinan vision and you will see the videos come up. He became a PRI trainer after experiencing exactly what you are going through and going to endless amounts of doctors who really understand very little about the brain and body, breathing, and sensory input. You can fix this with help from PRI, Neil is also available for consults if you want to reach out to him directly on his web site. Hope this helps.
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1 ReactionHi, this is my EXACT problem. I’ve struggled for five years. Are you any closer to knowing what this is? I pray that you’ve found improvements. It’s hell.
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1 Reactioni have similiar problem and its treated by a neuro-opthamologist at a top academic teaching institution. Local drs have told me its pointless to come see them anymore