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lawlaw1234
@lawlaw1234

Posts: 4
Joined: May 25, 2018

Very strange "brain/visual" problem that never went away

Posted by @lawlaw1234, Wed, May 30 1:14am

Hi everyone, I was wondering if anyone else suffered from a very odd sensation like what I'm going through. My entire visual field feels like all of the information that is going into my brain is just noticed, rather than fully seen. Like I can see everything, but it isn't going in right, and it feels extremely uncomfortable. It started when I was 13, then stayed that way for 9 years, then got worse when I was 22, then stayed that way for 10 more years, now I'm 33 and got mono just a few months ago and it got even worse the same day I got the fever from the virus. I can't figure out what could cause a chronic issue like this and just keep it this way for so long and just get worse apparently every decade. It doesn't seem to make sense. So far I have had an MRI, EEG, BAER, PET/CT scan, was tested for lyme, heavy metals, and had a spinal tap. The only thing that showed up abnormal was a little bit of high protein in the spinal tap but that was it. I have a couple bad discs in my spine also but that was all they found. It's pretty much only one symptom to, which sucks. I can't figure it out at all. Does anyone else have any ideas? No pain, dizziness or blurry vision or anything like that either, just this horrible, visual/brain abnormality …

REPLY

Hello @lawlaw1234 and welcome to Mayo Connect. I see this is your first post and I appreciate you describing your problems and all of your efforts to get a diagnosis and treatment plan. You must be very frustrated to have this type of problem and not to get an explanation about the cause.

When you say, "My entire visual field feels like all of the information that is going into my brain is just noticed, rather than fully seen" could you explain that a little more? Does it mean that you don't recall it later or that it just doesn't seem to connect with previous information or experiences?

From your post, I'm assuming that you have probably seen a good neurologist, but have you considered a second opinion?

Also, have you talked with Neuropsychologist? Sometimes they can be very good resources for unusual problems with the brain's functioning.

I look forward to hearing from you again.

Teresa

thanks for responding. I have talked to a neuropsychologist. She didn't have a clue. No it's not about remembering what I saw, it's a horrible sensation. There really isn't any words at all for it. I wish there was. Everything is seen, but it's not visually connecting in my brain the right way. It's definitely not my eyes though because the problem isnt really "visual", it's something else. It feels almost like I'm less aware of being able to see, but it also feels like a giant cloud in my head with it. It's the worst thing I ever felt in my life and it just stays this way. When I was 13 it came on literally in the blink of an eye and never left, then got worse when I was 22, I had a ton of neurological tests (MRI, EEG, BAER, PET/CT, LP) and they found literally nothing, then I saw psychiatrists, psychologists and had psychotherapy because some guy thought it was a "conversion disorder" and I saw him for 2 years and blew a fortune on it for no answers or help. I tried neurofeedback and that didn't do anything either. Now i'm 33, I got EBV and the same day the fever came, this got worse again and stayed worse. I'm once again searching the entire world for any kind of answer I can get. I'm afraid one day it will get worse again and I might end up committing suicide. That is very scary because I definitely don't want to die. It's literally the worst thing that has ever happened to me. I can't believe they can't figure this out. It's the only problem in my life that I care about fixing and it seems impossible. I just can't believe this random thing happened to me. It makes no sense at all.

@hopeful33250

Hello @lawlaw1234 and welcome to Mayo Connect. I see this is your first post and I appreciate you describing your problems and all of your efforts to get a diagnosis and treatment plan. You must be very frustrated to have this type of problem and not to get an explanation about the cause.

When you say, "My entire visual field feels like all of the information that is going into my brain is just noticed, rather than fully seen" could you explain that a little more? Does it mean that you don't recall it later or that it just doesn't seem to connect with previous information or experiences?

From your post, I'm assuming that you have probably seen a good neurologist, but have you considered a second opinion?

Also, have you talked with Neuropsychologist? Sometimes they can be very good resources for unusual problems with the brain's functioning.

I look forward to hearing from you again.

Teresa

Jump to this post

I also tried many drugs from the psychiatrist that didn't do anything at all. I'm mentally stable (aside from having this), all my tests and brain scans were normal, they checked me for a lot of different viruses and ruled that out also. Neurofeedback didn't work. … This thing has seemed to come on instantly and stay at the same intensity, kind of like once a decade, which doesn't make much sense at all. However I was online a lot listening to chiropractors talk and I do have a couple other problems also but they jst don't bother me as much. I have 2 bad knees, a bad shoulder, swallowing trouble once in a while, and frequent urination and trouble emptying my bladder… it would be insane for the answer to be this easy but I was wondering, since it literally comes and stays this way until something makes it worse seemingly once every 10 years or so, and just stays like that, could it all be a misalignment on my spine close to my skull somewhere? This brain problem did start in my early adolescence and got worse at age 22. I was thinking about the fact that I probably stopped growing in height around then but can't be sure. I did go to a chiropractor once and they said my head was forward 2 inches. But there are tons of people with bad spines and I never heard anyone complain about anything like this in my life… even in online forums… do you have any thoughts on that?

Hello @lawlaw1234 I would like to welcome you to Connect along with Teresa (@hopeful33250). I've read about what you are describing but have never known or talked with anyone who has experienced it. It sounds like sensory overload but I'm not for sure. Does this describe symptoms similar to yours?

21 People Describe What Sensory Overload Feels Like
https://themighty.com/2016/02/people-explain-what-sensory-overload-feels-like/

Here are a few more links that may be helpful…

Overstimulation: Taming A Modern Problem That Leads To Anxiety
http://reset.me/story/overstimulation-taming-a-modern-problem-that-leads-to-anxiety/

12 Ways to Manage Sensory Overload
https://www.healthcentral.com/article/12-ways-to-manage-sensory-overload

John

Not really, thank you for reading my description but it doesn't seem quite the same as that. It just seems like they are paying a lot of attention to things that most of us don't recognize all the time. My problem is a physical sensation that i feel through my vision. It's extremely hard to explain and it might not even be possible to accurately put it into words

@lawlaw1234 you want to try doing some searches on Google Scholar (https://scholar.google.com/) using words or phrases that are related to your symptoms to see if you come up with any helpful information. It's a great tool to find research and health information articles and papers.

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