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@nittanyatl

Hi Rachel. Thanks for your response and I'll try to keep this as short as possible while giving you the details.

I've seen pretty much all doctors. Neurologists don't see anything on the imaging and we've tried migraine medications with no luck in case that was part of the problem. Ophthalmologists and Neuro-Ophthalmologists think my eyes look fine. Vestibular testing has come back as normal. Blood tests are fine. The only thing would maybe be from some optometrists where the testing isn't jumping off the page but they do see convergence insufficiency and potentially binocular vision dysfunction. The problem is that whenever I've tried to treat those it has flared things up more and I've gotten worse.

These symptoms have been ongoing since February of 2022 with 4 or 5 tipping points along the way. Best way I can lay it it out is:

-Feb 2022 - Trigger to me feels like overplaying of stimulating iPad games to the point where it pushed my brain and eyes beyond what it could handle. Symptoms were concussion-like with brain fog, headache, dizzylike feeling, head pressure when exercising, alcohol intolerance, and could no longer play iPad games without making me feel much worse

-June 2022 - Trigger was doing vision therapy and syntonics (which is where you wear colored filters over your eyes and look at light). The syntonics brought on additional symptoms of no longer being able to tolerate TV as the motion was too much and in general too overstimulating. Also became very very sensitive to light at this time. Eyes also started hurting and burning at this time. I did eventually find out that Xiidra drops for dry eyes would help with the light sensitivity so thankfully that's much better right now. A doctor also recommended compression socks around this time and that has somehow allowed me to build my exercise tolerance back up. Can do Peloton because it's stationary and I'm doing it at as high of levels as ever. Also found if I covered an eye I could get away with watching a little TV.

-December 2022 - Trigger was a multisensory exercise to try and balance visual/vestibular systems. It flared me up though and I could no longer and still can't tolerate still screens like computers and phones. Have found e ink monitors and that has allowed me to continue to work some as without it I couldn't.

-April 2022 - Trigger was Neurolens prism glasses. My neurologist thought since covering an eye seemed to help some with watching TV that maybe prisms could help. I wore Neurolens for just a couple hours and my desk felt very slanted and I tried driving with them and running errands and it just felt really off and not helpful. Ever since then whenever I drive I get extreme eye pain and strain that lasts at times for days. It is triggered even if I just drive across the street. I'm now no longer driving. I also can't read books now as that's become too much for my brain/eyes.

-June 2022 - Trigger was regular prism glasses. Wanted to see if regular ones could help and not be as triggering as Neurolens but they just made things worse. I wore them for 5-10 minutes and didn't notice much and then went for a walk and started getting real dizzy and feeling very off. I don't go for walks anymore as my body just feels off in space and me being in motion just makes everything feel off. I also can't ride in cars very well with the motion now so I close my eyes and that at least helps some. Walking and riding in cars pretty much triggers dull headaches and make it to where my head hurts to just think. If I sit around for a few days that wears off and I can think fine again.

So I've just had this worsening of symptoms throughout the past 18 months and it feels like just trying to treat the symptoms has actually made things a lot worse. Either my brain keeps getting more inflamed and irritated with each of these or these things are slightly altering the way my brain is processing vision and that's causing the problems. Maybe both who knows or maybe it's something else entirely but that's the timeline of everything. Just feels like if the average person put on prism glasses then after they took them off they'd maybe feel off for a few but their brains would figure it out. Mine just seems to be flared up by something and instead of figuring it out it just gets stuck and becomes a new normal.

I should mention that after around the 2nd tipping point I developed a lot of anxiety and depression. I've tried antidepressants but I'm sensitive to the side effects and they didn't help. I've also tried Ketamine and other things and nothing helps all that much. Also doing therapy weekly for the past year so pretty intensive with that.

Anyway, I was referred to the PRC and insurance won't cover it so I just wanted to see if anyone like me has seen success with that program. They list a lot of different conditions and symptoms they help with and so do other DNRS programs from things like fibromyalgia to long covid to back pain to tinnitus but I don't see eye pain or eye strain or my triggers really anywhere. I see a lot of smell triggers and light and sound triggers and the light somewhat pertains to me but really motion is a big problem and not sure they can help with that.

Sorry for the novel and thanks for any thoughts you have!

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Replies to "Hi Rachel. Thanks for your response and I'll try to keep this as short as possible..."

OMG where do I begin? You have written a book that needed to be written. Thanks for such detail. I'm sitting here shaking my head because I experienced so much of what you are saying and what you have laid out. In my mind clearly you sound like you have Central sensitization syndrome. I'm no doctor and can only speak from my experience. Please watch this video by Dr sletten of the Mayo Clinic pain Rehabilitation Center. It is what helped solidify and validate my personal experiences with sensory and pain issues that were unexplained unable to be treated and kept evolving. Keep in mind that CSS may look different for each person not everyone has every symptom however it's so important to understand how our central nervous system can get up regulated and cause chronic symptoms. The goal in treating CSS is to quiet the storm by cutting fuel lines from the fire. I'm going to give it to Dr sletten from here have a watch -


Will you please let me know what you think after watching the video? Did it resonate with you?

PS forgive me for any typos or lack of punctuation I am voice texting. It's a tool I use for visual sensory issues