Extreme light sensitivity. What can be done?

Posted by sunny1971 @sunny1971, Sep 29 7:59am

HELLO ALL! I’VE ALREADY POSTED A DISCUSSION ON EXTREME, I MEAN HEAVY LIGHT SENSITIVITY ! MY HUSBAND HAS HAD FOR GOING ON 4 MONTHS NOW! HAD CATARACT OUT JUNE 29, THE LIGHT THING STARTED BEFORE THAT, HE THOUGHT BY NOW AFTER ALL THE DROPS , IT WOULD DISAPATE. IT DID GET A BIT BETTER 3 WEEKS AGO, THEN IT ALL CAME BACK, WHERE HE CANT LOOK OUTSIDE WITHOUT SQUINTING, GLASSES DOUBLE SHEILDS! NO T.V, THE PAIN BEHIND HIS RIGHT EYEBALL WAS BAD YESTERDAY, THE SURGEON SAYS INFLAMMATION ! HE IS DOWN TO 1 DROP IN THE EYE 1 TIME A DAY! LOTAMAX ! I READ IT CAN CAUSE LIGHT SENSITIVITY! HE IS LOST, LOSING HIS MIND, CANT HAVE THE FUN LIFE HE LEADS HERE IN FLORIDA ! WILL THIS GET BETTER ? THE DOC HAD NO ANWSERS, AND SAYS KEEP PUTTING THE CRAP IN HIS EYE ! HIS PRESSURE IS PERFECT, PERFECT SIGHT ! THE LENS WAS A TRI FOCAL ! IT IS SO INTENSE HE SAYS EVERYTHING EXTREMLY BRIGHT OUT OF THAT EYE !!!! ANYONE ??? HAVE THIS ? ALL THE RESEARCH I’VE DONE SHOWS THAT THIS IS NOT A DISEASE ! WHEN WILL IT GO AWAY !!!!????mas

Liked by Leonard

@sunny1971 Has he been light sensitive all his life before surgery? I have had sun sensitivity for a long time but after my cataract surger,smy eyes have been worse I've had to wear dk glasses even indoors It's awful but I haven't found anything you can do so I just keep my special dk glasses handy as I have M.D. also what has his opthalmologist say?

REPLY

@sunny1971 I changed the title of this discussion to: "Extreme light sensitivity. What can be done?" I did this to better reflect the question you are asking of fellow members.

I'd also be interested in your response to the question that @lioness asks. Was your husband sensitive to light before the cataract surgery? Have you considered getting a second opinion from another eye specialist?

Liked by Leonard

REPLY
@lioness

@sunny1971 Has he been light sensitive all his life before surgery? I have had sun sensitivity for a long time but after my cataract surger,smy eyes have been worse I've had to wear dk glasses even indoors It's awful but I haven't found anything you can do so I just keep my special dk glasses handy as I have M.D. also what has his opthalmologist say?

Jump to this post

no it just started in late may, he got an exam, and they found a pretty good size cataract in rt eye, mind you , he never went to an eye doc, or had a previous exam, hes 66, he is always in the sun surfing and fishing. his doc said its TIME and will go away ???

REPLY
@erikas

@sunny1971 I changed the title of this discussion to: "Extreme light sensitivity. What can be done?" I did this to better reflect the question you are asking of fellow members.

I'd also be interested in your response to the question that @lioness asks. Was your husband sensitive to light before the cataract surgery? Have you considered getting a second opinion from another eye specialist?

Jump to this post

yes he is considering 2nd opinion. very soon, read my post to the last lady, he did have it prior to surgery, scary

REPLY

@sunny1971 – I would definitely get a second opinion. You may want to talk with the pharmacist where you got the prescription for Lotemax which is the brand name for Loteprednol – you are correct about the sensitivity to light and pain side effects and that you should talk to the doctor immediately if you have these side effects when using the drug. Here more information from Mayo Clinic – Loteprednol (Ophthalmic Route): https://www.mayoclinic.org/drugs-supplements/loteprednol-ophthalmic-route/side-effects/drg-20064589

REPLY

@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

REPLY
@jakedduck1

@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

Jump to this post

Thank you Jake, no i didnt mention swelling ,just inflammation of eye, due to cataract surgery, and yes dry eyes. Your right, people do not know the seriousness about dry eyes. MY husband doesnt even know what or why he got it! go figure, he's been in the sun his
whole life!. Even I know, from surfing and fishing. He is getting second opinion. We live on the beach in florida, so you know how the sun is here. If the second opinion does not work out, next step will probably be Baskin Palmer Institute in West Palm bch or
Miami. I still believe its dry eye syndrome along with the new cataract to adjust to. He is running out of patients, i get it. I would be
also. I have done research on the institute in Miami. Alot of people have suggested it. Thanxs, for writing in! mas

REPLY
@sunny1971

Thank you Jake, no i didnt mention swelling ,just inflammation of eye, due to cataract surgery, and yes dry eyes. Your right, people do not know the seriousness about dry eyes. MY husband doesnt even know what or why he got it! go figure, he's been in the sun his
whole life!. Even I know, from surfing and fishing. He is getting second opinion. We live on the beach in florida, so you know how the sun is here. If the second opinion does not work out, next step will probably be Baskin Palmer Institute in West Palm bch or
Miami. I still believe its dry eye syndrome along with the new cataract to adjust to. He is running out of patients, i get it. I would be
also. I have done research on the institute in Miami. Alot of people have suggested it. Thanxs, for writing in! mas

Jump to this post

Hello @sunny1971, Greetings from another light sensitive eye person. SFN (small fiber neuropathy) creates heightened sun sensitivity. I lived on top of a mountain and generally above the cloud bank in addition to the frequent total sun days with low humidity. My Opthamologist had me try different sun glass lenses until we found one that blocks more sunlight.

They worked well and I am on my 4th pair. One, two, and three were left in a restaurant or office somewhere. I have #4 now and wonder if I can keep from losing them one more time. What has also helped is moving to a state with higher humidity.

May you be content and free of discomfort.
Chris

REPLY
@artscaping

Hello @sunny1971, Greetings from another light sensitive eye person. SFN (small fiber neuropathy) creates heightened sun sensitivity. I lived on top of a mountain and generally above the cloud bank in addition to the frequent total sun days with low humidity. My Opthamologist had me try different sun glass lenses until we found one that blocks more sunlight.

They worked well and I am on my 4th pair. One, two, and three were left in a restaurant or office somewhere. I have #4 now and wonder if I can keep from losing them one more time. What has also helped is moving to a state with higher humidity.

May you be content and free of discomfort.
Chris

Jump to this post

@sunny1971 On the heels of what Chris has suggested….my Neuro Opthamologist suggested FL-41 lenses for my photophobia from corneal disease and migraine. Axon Specs and TheraSpecs provide many options. It's all about the tint and what works best for each person's case. A wrap around pair, the kind that are big and protect front and side entry of light. Almost like cataract glasses. Surf the internet to find multiple options. It will be trial and error to hopefully find the better option for your husband. Also, I'm wondering if he is using preservative free lubricating drops for dry eye?

REPLY
@rwinney

@sunny1971 On the heels of what Chris has suggested….my Neuro Opthamologist suggested FL-41 lenses for my photophobia from corneal disease and migraine. Axon Specs and TheraSpecs provide many options. It's all about the tint and what works best for each person's case. A wrap around pair, the kind that are big and protect front and side entry of light. Almost like cataract glasses. Surf the internet to find multiple options. It will be trial and error to hopefully find the better option for your husband. Also, I'm wondering if he is using preservative free lubricating drops for dry eye?

Jump to this post

I knew she would be able to give you all the details. You can count on @rwinney to know and to share. Thanks Rachel.

REPLY
@jakedduck1

@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

Jump to this post

@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

REPLY
@rwinney

@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

Jump to this post

@sunnyflower Glad it's finally here for you. I just came in always wear a hat and dk glasses but just being near my window have to get my tinted glasses that go over regular The Dale McIntosh center here is very helpful with what low vision people want Anxious to hear what you learn.My appointment with neurosurgeon is Monday so glad his office is in one of our hospitals.

Liked by Leonard, sunnyflower

REPLY
@rwinney

@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

Jump to this post

Hi Rachel and @jakedduck1, @sunny1971, not only do I have the bright contrast dimmed on all my devices, but I also have prescription glasses that block out blue light. Zenni optical can make a cheap but good pair of non-prescription glasses for TV and devices for as low as $15-$30. All the best, Sunnyflower

Liked by Leonard, rwinney

REPLY

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

Liked by rwinney, sunnyflower

REPLY

@jakedduck1 Hi Jake yes I have Fibromyalgia diagnosis on the 90,s I'm going to neurosurgeon Monday to see about neuropathy but from all the talk to n here it sounds like it but of course Fibromyalgia has the same symptoms ,muscles,and nerves , arthritis in hands bad

Liked by Leonard

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