Extreme light sensitivity. What can be done?

@sunny1971
Good morning,
I was photophobia twice. My first time I was in Las Vegas on a very hot sunny day I just walked out of the museum and I had to immediately close my eyes. The second time I fell and cut my cornea . The pain was extremely intense and I totally blocked out 100% of the light in my bedroom for one week and I stayed in there. You mentioned swelling. Do you know what structure exactly is swollen? Is his Optic Nerve swollen? Did I read correctly he had a ruptured AVM? If so did that cause any damage? There are so many causes for sensitivity not all associated directly with the eye. I was told if a person totally avoids light it may potentially turn an acute problem into a chronic one or even may become permanent. I would also discuss long term steroid eyedrops use with your ophthalmologist well hopefully with a new one.
Epilepsy, Arthritis, Fibromyalgia, Headaches. I believe you mentioned your husband has dry eyes that could also be a cause of sensitivity. People often overlook the seriousness of dry eyes which actually can lead to blindness in some people. However over-the-counter eyedrops don’t always solve the problem. Since the doctor mentioned inflammation is he seeing that in the eye? What color is the white part of his eye? Perhaps it could be the implant wasn’t put in correctly. The possibility does exist that your ophthalmologist is not being forthright with you. I like others would strongly recommend another opinion. I would seek out a top-rated eye clinic.
Although I'd choose one of the below top rated facilities, Mayo Clinic is always a good choice. Here is there contact information.
https://www.mayoclinic.org/about-mayo-clinic/contact#jump3
Bascom Palmer Eye Institute-Anne Bates Leach Eye Hospital, University of Miami
Miami, Florida
https://www.google.com/search?q=Bascom+Palmer+Eye+Institute-Anne+Bates+Leach+Eye+contact+information&ie=UTF-8&oe=UTF-8&hl=en-us&client=safari#trex=m_t:lcl_akp,rc_f:nav,rc_ludocids:9659690891294572316,rc_q:Bascom%2520Palmer%2520Eye%2520Institute,ru_q:Bascom%2520Palmer%2520Eye%2520Institute,trex_id:VemWB
Willsk Eye Hospital
Philadelphia, Pennsylvania
https://www.google.com/search?q=Willsk+Eye+Hospital&ie=UTF-8&oe=UTF-8&hl=en-us&client=safari
215-928-3000

Wilmer Eye Institute
Johns Hopkins Hospital
Baltimore, Maryland
https://www.google.com/search?client=safari&hl=en-us&ei=2uV1X_PUIOLD0PEPvq-U2AU&q=wilmer+eye+institute+contact+information&oq=Wilmer+Eye+Institute+contact+inf&gs_lcp=ChNtb2JpbGUtZ3dzLXdpei1zZXJwEAEYADIHCCEQChCgAToECAAQRzoCCAA6BAgAEEM6BggAEBYQHjoFCCEQoAE6CAgAEAgQDRAeOggIIRAWEB0QHjoFCAAQzQJQrsUBWPTIAmCQ7AJoAnACeACAAe0BiAGRDJIBBTkuNC4xmAEAoAEByAEIwAEB&sclient=mobile-gws-wiz-serp
Massachusetts Eye and Ear Infirmary, Massachusetts General Hospital
Boston, Massachusetts
https://www.masseyeandear.org/locations/boston-main-campus
Stein and Doheny Eye Institutes,
UCLA Medical Center
Los Angeles, CA
https://www.google.com/search?q=Stein+and+Doheny+Eye+Institutes&ie=UTF-8&oe=UTF-8&hl=en-us&client=safari
310-825-5000

Take car & wishing you all the best,
Jake

@jakedduck1 @sunny1971 Hey Jake! I love how when you step up to the plate, you step up BIG. Way to go! This is awesome information.

I'd like to conclude the importance of balance when it comes to light exposure verses deprivation. Of course if extreme light sensity comes after eye surgery there is bound to be the approach of needing complete blackness. I know it too well and those times were brutal. However, in time, I have found that the remnants of photophobia that I have been left with from surgeries, neuropathy, dry eye and migraines, need balance of light. Acclimating slowly to a drastic light change has been very important for me. You are right when you say avoiding light can become acute. I feel bad for anyone experiencing these challenges, like @sunny1971's husband. It is taxing.

Some things I have done to be more comfortable are lowering the brightness on all my TVs and devices. I sit at an angle while watching TV, never directly in front. Even with that, some nights, it's not enough and off to bed I go. I pretty much live in a baseball hat as blocking the light from above is helpful. Visors down in vehicles (I wish there were side visors in addition to front visors). When it gets too bad, I sit in the back seat where I'm better protected from direct light. I have multiple sunglasses and now am trying FL-41 lenses.

I will be leaving Sunday to attend Mayo's PRC and while there my neuro opthamologist has arranged for me to be seen by a Mayo cornea specialist. I'm super excited for this and if I learn anything new about dry eye or photophobia, I will definitely share with all of you. My heart goes out to all who suffer.

Rachel

@jakedduck1 @sunny1971 Hey Jake! I love how when you step up to the plate, you step up BIG. Way to go! This is awesome information.

I'd like to conclude the importance of balance when it comes to light exposure verses deprivation. Of course if extreme light sensity comes after eye surgery there is bound to be the approach of needing complete blackness. I know it too well and those times were brutal. However, in time, I have found that the remnants of photophobia that I have been left with from surgeries, neuropathy, dry eye and migraines, need balance of light. Acclimating slowly to a drastic light change has been very important for me. You are right when you say avoiding light can become acute. I feel bad for anyone experiencing these challenges, like @sunny1971's husband. It is taxing.

Some things I have done to be more comfortable are lowering the brightness on all my TVs and devices. I sit at an angle while watching TV, never directly in front. Even with that, some nights, it's not enough and off to bed I go. I pretty much live in a baseball hat as blocking the light from above is helpful. Visors down in vehicles (I wish there were side visors in addition to front visors). When it gets too bad, I sit in the back seat where I'm better protected from direct light. I have multiple sunglasses and now am trying FL-41 lenses.

I will be leaving Sunday to attend Mayo's PRC and while there my neuro opthamologist has arranged for me to be seen by a Mayo cornea specialist. I'm super excited for this and if I learn anything new about dry eye or photophobia, I will definitely share with all of you. My heart goes out to all who suffer.

Rachel

@sunny1971, lioness, @rwinney, @artscaping
Hello all,
I was curious if any of you have a definitive diagnosis.
Jake

@jakedduck1 I was originally told photophobia was from my cornea disease and cataracts but, instead of the surgeries helping it as promised, surgeries made it worse. Then, my first neuro opthamologist blamed photophobia on scar tissue, from those very surgeries, and having blue eyes. 4 years and a neuropathy diagnosis later, a new neuro opthamologist agrees that neuropathy and dry eyes contribute. Hoping the Mayo Dr sheds more light. No pun intended. 😉

In adding to that...unfortunately, I believe photophobia is not fixable and basically is what it is. Sadly.

@rwinney
Hi there,
Yes it is treatable in many cases. For example I had a corneal abrasion and just stayed in a pitch black room but it went totally away after the abrasion healed. There’s also treatment for migraines which in about 90% of cases are affected by photophobia so that’s treatable in many people in there are quite a few other photophobias that are treatable.
As far as photosensitive Epilepsy is concerned There isn’t an actual cure but medication can in many patients prevent seizures so in Epilepsy there is treatment in some people. Also if they avoid looking at flashing lights we’re going places where fluorescent lights are their chances of seizures are greatly reduced if not totally controlled. I’m not saying this is correct but as I understand it everyone with this affliction should seek treatment because I understand this issue has the potential to become permanent.
Take care,
Jake