1. < Chronic Pain

Is PRC good for pain/problems triggered by visual stimuli and motion?

Posted by nittanyatl @nittanyatl, Sep 27, 2023

Hello. I wanted to see if the PRC has treated someone like me or somewhat like me before? I get extreme eye pain and eye strain when driving that lasts for the rest of the day and sometimes multiple days. It's not like it happens from hours of driving either it just happens sometimes even if I drive across the street for 2 minutes.

I also am having problems with visual motion when I'm walking or riding in a car. It triggers these dull kinds of headaches and a feeling where it's hard for my brain to think. This also can last for days.

Lastly, I'm unable to watch TV as it just feels like too much for my eyes and brain with the light as well as some of the motion on the screens. I'm typing this from an e ink monitor as my eyes just can't handle regular TV/phone/computer screens.

Would the PRC be able to help if I have all of these types of triggers? Has anyone had symptoms like me and had success with the PRC?

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 27, 2023

Hello @nittanyatl, welcome to Connect. I'm sorry you are having these difficulties with your eyes. I relate to how frustrating it is when eye symptoms interfere with daily happenings. I struggle with sensory issues from central sensitization which affect my eyes and more. I have been through PRC program and would like to better answer your question however, it would be helpful to learn more about your journey. Do you mind sharing how long these symptoms have been happening? What types of doctors have you been to and what has been ruled out thus far?

REPLY
nittanyatl | @nittanyatl | Sep 28, 2023

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!

REPLY
1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 28, 2023
In reply to @nittanyatl "Hi Rachel. Thanks for your response and I'll try to keep this as short as possible..." + (show)
@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!

Jump to this post

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

REPLY
2 replies
nittanyatl | @nittanyatl | Sep 28, 2023
In reply to @rwinney "OMG where do I begin? You have written a book that needed to be written. Thanks..." + (show)
@rwinney

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

Jump to this post

Yeah the PRC gave me that video and many parts of it do resonate with me and the doctor thought I had CSS. I’ve also found some other people online who have participated and shared their stories. Just wish I could come across someone who has these visual triggers that I have as that would help solidify the decision for me.

Would you be comfortable sharing your experiences of what all happened and how the PRC helped cut the lines to the fire for you?

REPLY
1 reply
nittanyatl | @nittanyatl | Sep 28, 2023
In reply to @rwinney "OMG where do I begin? You have written a book that needed to be written. Thanks..." + (show)
@rwinney

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

Jump to this post

Sorry I initially missed your comment about sensory vision issues. Not sure if youve tried e ink montiors or phones but I always mention them to people in case they'd help.

REPLY
Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 29, 2023
In reply to @nittanyatl "Yeah the PRC gave me that video and many parts of it do resonate with me..." + (show)
@nittanyatl

Yeah the PRC gave me that video and many parts of it do resonate with me and the doctor thought I had CSS. I’ve also found some other people online who have participated and shared their stories. Just wish I could come across someone who has these visual triggers that I have as that would help solidify the decision for me.

Would you be comfortable sharing your experiences of what all happened and how the PRC helped cut the lines to the fire for you?

Jump to this post

My CSS is wide spread head to toe with a plethora of symptoms. So, I speak about the PRC from a full perspective however, some attend for isolated pain or a specific chronic condition affecting one area. Regarding my eye sensitivities, I had cornea transplants and cataract surgeries on both eyes which were successful in fixing my sight (AMEN) and I thought my heightened eye sensitivities would also be fixed but not. In fact, I believe surgeries furthered the upregulate of my CNS.

My visual triggers include - headaches, migraines, overuse of devices/electronics, overhead store (florescent) lights, car lights, grey days, black print on white paper, the sun, sudden transitions of light, light imbalances, too many things to look at albeit small print, a menu, book, or just looking back and forth in an isle or riding down the street sightseeing, lasers, movie theaters etc...

Mayo PRC taught me to quiet the storm by cutting fuel lines by using graded exposure to light, limiting eye use through moderation, using modifications that OT teaches, 20/20/20 rule, controlling stress, anxiety, depression, keeping physically active, scheduling days, omitting opioids and other meds, using distraction for the brain to relearn and refocus (neuroplasticity), diaphragmatic breathing, mindfulness, meditation, scheduling rest breaks, avoid push/crash cyles etc...

No two people or cases are the same. I understand how you feel about finding someone you can connect symptoms with to be sure of your next steps, but that' shard sometimes because we are all so individual. Here's a conversation about when I went to PRC and what I got out of it, plus more in general on CSS. You'll find other members as well that might help.

Mayo Pain Rehab: Signing off and my comeback afterwards -
https://connect.mayoclinic.org/discussion/mayo-pain-rehabilitation-program/
Central Sensitization - please share your stories -
https://connect.mayoclinic.org/discussion/central-sensitization-please-share-your-stories/

I can give you more links to read through, but we'll start here. Will you please let me know your thoughts? I'd also like to add that you can apply to the PRC program and see if you qualify. That way you can gauge more appropriately if they think they can help you then figure out the logistics.

REPLY
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