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.
Interested in more discussions like this? Go to the Eye Conditions Support Group.
Very odd for sure, and hard to describe as well.
The problem has never occurred until November of last year, at 33 years old. Most cases of lazy eye occurs at childhood. I have also been mostly blind in my left side since birth, but has never caused any issue or inconveniences. So this seems to be something new that has just shown up on its own that I am thinking is not related to the mostly-blind eye
How long have you been using the prism lenses? Brain plasticity is not instantaneous, may take a while to produce a noticeable difference.
I hope you find an answer. I know for me, I have significantly less peripheral vision in low light, but assume it has to do with cataract formation, age and mild glaucoma.
Can you get a neuro ophthalmologist to present you as a case study?
I started wearing the prism lenses Thursday at lunch.
So far I noticed that my vision is not as good at night with the prisms, but it's not a big difference. Otherwise, I notice that my peripheral seems to be "brighter", but still only when I am actually seeing the peripheral. So the main problem still is not improved, but as you mentioned, it could take a few more days.
I would be interested in seeing what the neuro-Opthalmologist says about all of it. I mentioned mayo clinic to him but he seemed to be pretty confident that he could figure it out, so I'm not sure he'll be much help when it comes to branching out to other people to join in. I am trying to get a neurologist appointment now also though, because I am starting to think the issue is completely just in the brain itself.
I'm not sure what other additional tests a neurologist might have, since I've already had an mri. But if they would either do a case study or have additional testing that they could try, I would be really interested.
Could this be lack of blood flow?
Not sure where to post this because I'm kind of just guessing at a self-diagnosis here.
I'll post my original explanation of what's going on from another thread here, and you can either read it or skip it and go to my question underneath this:
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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."
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My idea is with blood flow affecting peripheral vision. Some people, including me, have a drop in blood pressure in the head if they stand up quickly, making their vision blur out for a few seconds. It's not anything big though, no treatments or anything.
For those that skipped the long explanation, my peripheral looks like this 24/7 now.
Mine also does it even if I simply look up. Which seems kind of strange.
I also get fatigued a lot. No doctors have mentioned this, and my neuro-Opthalmologist quickly dismissed it as soon as i thought of it.
Could this have something to do with lack of blood flow to the brain? Artery in neck clogged or something, not giving the visual part of the brain enough flow to operate correctly?
If standing up quickly can cause a pressure drop, causing your vision to fade for a few seconds, then doesn't it make sense that your peripheral vision being faded 24/7 could be from a permanent pressure drop??
(Also for those who skipped, we already did MRI, about every blood test known, and OCT's for every eye exam in existence).
Anyway, just thought somebody might have experienced something like this before, or know more about blood pressure and it's affects. Thanks for reading
Hi, I'm Sally 44, tested positive for an autoimmune disease. I haven't been diagnosed yet. But, I already have, optic drusen, optic atrophy, and optic neuritis. I read your whole post. I have lack of blood flow throughout my entire body. Causing me alot problems. But, my partner had a stroke in her left eye due to lack of blood flow. She was seen by a ophthalmologist, who diagnosed her with it. She would go and treatments for it. It's hard to explain the treatments, they put a solution in her eye, cover it, then put a needle (she couldn't feel a thing) and did whatever the heck they did. Lol I can't explain it. She can see much better, but she missed her last treatment. And it had to be done that day. I on the other hand haven't been treated. I'm still waiting for my doctor's to order tests. Whatever autoimmune disease I have it's definitely neurological. This autoimmune disease is causing lack of blood flow to my brain. My blood pressure drops so low I pass out. I have no energy. Always feeling fatigue but can't sleep. The list goes on and on. Even lost over half of my hair. Lack of blood flow to the scalp. I never knew that was possible! My condition is quite serious. I've been going through this for 5 months now. Just know that there's someone out here who understands what you're talking about.
Hi @88lance, I moved your recent posts to your original query so that your further investigations and member responses and history are in one place as you try to solve the seemingly unsolvable.
I'm not a doctor and certainly can't offer solutions where many specialists have not be able to. However, I wonder if this may be an issue that cognitive training might be able to help. I know that's not getting to the root of the problem, but it might help manage the condition until you get to the bottom of this.
Thanks for the information. What affects do the problems have on your vision? What does it look like?
Does the lack of blood flow cause other head problems also, or is the vision and fatigue mostly all in the head area (other than hair loss)?
It sounds like it could be something similar, except mine seems to just be in the head area.
Anyway, wow 5 months and they still don't know, that's frustrating. Does your pressure drop randomly, or mostly when you stand up quickly? Have you had an mri? I'm not sure how they usually find an autoimmune issue, but I wouldn't rule that out on mine either. Hopefully they can track yours down.
Thank you for the in sight. I will contact my GP for a referral. I too have noticed a deterioration in my perrifreal vision, even though I am recovering from a stroke in April 2022. Use several RX , got newest one , not stable either with any of them..Good luck with your quest! Please share more good info when you find it! Thank you. muzrik2gr
@88lance With your theory about altered blood flow, I wanted to share with you a source that could support this if you have a condition that reverses blood flow know as "subclavian steal" and it can cause visual disturbances. This would be possible if you have a problem like thoracic outlet syndrome that compresses blood flow and it can be adversely affected by poor posture. I have thoracic outlet syndrome which is diagnosed by confirming altered blood flow to the brain and arms by the position of arms and head (turning head) with Doppler studies and the doctor listening for the pulse to diminish with changes in posture. Have your specialists considered thoracic outlet syndrome as a possibility? Many doctors miss TOS and it is poorly understood and not given much time in med schools. A neurologist or thoracic vascular surgeon would be possible specialists for this condition.
I refer to this paragraph below:
Source:
Vestibular impairment and its association to the neck and TMJ
Posted on July 22, 2018 by Kjetil Larsen
and found at this link:
https://mskneurology.com/vestibular-impairment-and-its-association-to-the-neck-and-tmj/
"Subclavian steal symptoms presents secondary to arterial insufficiency, created by a retrograde flow that “steals” blood from the brain circulation, more specifically from the basilar artery via the vertebral artery. Classically it presents with neurological symptoms from the posterior brain and cerebellum [4,6]. Decreased flow over the basilar artery gives rise to symptoms like lightheadedness, ataxia, vertigo, dizziness, confusion, headache, nystagmus, hearing loss, presyncope and syncope, visual disturbances, focal seizures, and in extremely rare cases, death [6–10]. However the vast majority of patients are asymptomatic and rarely require any intervention [3,5,11]. – Alcocer et al., 2013"
Here is some more information about TOS
https://mskneurology.com/how-truly-treat-thoracic-outlet-syndrome/
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
Have your doctors mentioned TOS? Have you heard of thoracic outlet syndrome before?
Wow, that k you for the post and links. I have never heard of this, and none of my specialists have mentioned it either. I will open the links and do some reading when I get home this evening.
What affects does TOS have on you? What symptoms have you experienced? If vision was one, what way did it affect your vision?
Thanks again for all the information