Extreme Light Sensitivity After Cataract Surgery.
Posted , 19 users are following.
Right after having cataract surgery about six months ago everything was super bright - Artificial lighting in stores almost seems like it's burning and sometimes makes me dizzy. It's almost like I can't think, it's messing with my brain. At times it is intolerable. By the end of the day the collective eyestrain has my eyes mostly shut and I've learned to live in as dark of an environment as possible. Even sunlight coming through a window can be problematic. I also get the flickering at times that other people and myself have posted about.
I had a concussion from a blow above my eye about three years ago. I'm 'only' 58 and that is what started the cataracts, but Dr. May, a neuro-opthamologist, did not think there was link to my current issues.
I've seen lots of specialists, including Dr Randall Olsen at the John Moran Eye clinic in Salt Lake City. I can't recommend Dr Olsen highly enough, I don't think anyone is more qualified. He said my brain is working about 10 times harder than normal trying to adjust to the new light coming in and that out of the 3 million plus cataract surgeries done last year, there would only be 10 to 20 people, if that, with this condition. No doctor has more than a patients like this, so no study has been done. That diagnosis has since been confirmed by two really good specialists.
Dr Olsen is the only one who has given a good scientific explanation of what is causing the flickering, dizzyness and eyestrain. I should have had a tape recorder on, most of it went over my head and it was much better info than I could find on the internet, despite a ton of research.
The cure is exposure, hiding in the dark prevents recovery. The time frame for improvement may be 2-3 years. I gather those who did not expose themselves to more light did not recover. So, I've got the lights on 😃
There is no name for this that I know of, but that doesn't make it any less real.
I am wondering about the recovery time frames of any other similarly afflicted victims that may have also come to this forum?
1 like, 41 replies
julielyn MikeMess
Posted
wow mike, this is excellent information. although i have not had this extreme of a situation, i did recently wake up to fluttering two days in a row ( almost blamed the black dark roast coffee) but like you said exposure, or dialation of the pupil seemed to calm the flicker or twitch down. it took about an hour or so. and i also have issues with florescent lighting at home depot on occasion. but once im back outdoors things seems to settle down . i have restor 3.0 multifocal toric in one eye and restor multifocal in other eye.
i wish you well in your search for others experiencing extreme situations. its comforting to know you are not alone.
MikeMess julielyn
Posted
Hi, Julielyn. I've seen your posts on multiple threads, thanks for replying to the posts. I think some of the people, including me, are quite desperate and your notes help.
The exposure just makes me sicker. In one sense, the cure is worse than the 'disease' itself. However, that is the only way to get better. In fact, I had started to increase exposure to light a month ahead of the visit to Dr. Olsen as I had already tried everything else.
Sue.An2 MikeMess
Posted
Hi MikeMess was anything said about eye color and this condition? I have light blue eyes and even pre cataracts I have always had to wear sunglasses regardless of the season. Sunlight is bright. After cataract surgery it seemed sunlight is brighter - but makes sense as cataracts themselves block light. I haven't struggled though with inside lights unless the ceiling is black - high contrast can create more glare / flare.
MikeMess Sue.An2
Posted
Hi, Sue. People with blue eyes are more susceptible to light intolerance, but I have brown eyes. I don't use sunglasses a lot, they don't seem to block very much of whatever portion of the light is affecting me.
Someday, I hope to go back into stores and not think they are blindingly bright.
ara21947 MikeMess
Edited
Mike, Im sorry for your extreme photophobia. It can happen after cataract surgery and infact is listed as 1 of 5 things patients might be advised about before surgery so they dont become alarmed. Is it both eyes and did you have both done at same time and it happened immediately after one then after the other? I understand yours has lasted longer than many. There has been a lidocaine block done for some that had a previous injury and you say you had? Also there is constricting the pupil temporarily.
There have been studies on extreme light sensitivity and the brain after lasik with some good explanations you might want to check out; it may be close to what you were told and wished you had a recording for.
Im sure youve been online, since you found this site too, and saw the case from 2014. I mention this since I dislike patients being told their malady is so rare and its them... not a solution or something your drs havent worked on. Is it associated with anything else such as head aches? Im so sorry for your discomfort and feel your problem will abate but I know for now its awful. Maybe a neurologist instead of opthamologist -neurologist might give a different point of view?
I know you are under care but I wanted to respond because I know this stuff totally affects us.
MikeMess ara21947
Edited
Hi, Ara21947. It seems that everyone sees more light coming after the cataract surgery, it's just that my brain has trouble processing it. The doctors in the beginning said that my eyes were healthy, everyone sees more light coming in after cataract surgery and it would get better in a few weeks. Except that it didn't.
Dr. Olsen has over 300 papers out, I think he coined the term 'dysphotopsia' or something. Even his assistant was the best. The optician place in the same building was also the best, that is where they invented the FL-41 tint.
I had my left eye done first and noticed the issues immediately , then my right eye.
I've been to a top neuro-opthamologist. He did not find any links between the concussion and these eye issues.
I think I'm done seeing the doctors for now. Dr. Olsen's diagnosis has been confirmed by two other really, really good specialists. I have to turn on the lights and take off my glacier goggles, otherwise I will never get better. This is not something that can be fixed surgically.
Guest MikeMess
Posted
Hi
Sorry to hear you are having these problems, that must be very difficult to deal with.
I was born with cataracts, and got lens implants about 5 month ago, and for the first time in my life, light got to my retinas with no cataracts in between. And I found the light very bright as well, for a few days after surgery I wore sunglasses even when I was inside, if sunlight came through the window.
And when it was semidark inside late in the evening, where I normally would have had very poor vision, I felt like I had got the vision from a cat or something, it was like with just a little bit of light everything got very illuminated.
But after a couple of weeks it began to feel somewhat normal, I think it was also after 3-4 weeks that I could stay outside without sunglasses.
There were some artificial lights that were were disturbing for some time, fluorescent lights where I went shopping was really annoying, they gave me a very strange feeling, hard to explain, but I wanted to get away from it, like I was being stressed, and all I really wanted was to flee.
This took some month to get used to, in my garage where I work on motorcycles, I changed the fluorescent lights to LED, that helped a lot.
Now 5 month after surgery I don´t think about it any more, I have no problem being outside without sunglasses and I don´t think about it when I am in the same shops, that gave me this strange feeling before, so I guess brain have adapted to it.
Funny thing is, I can feel a noticeable improvement in contrast is happening still at this point, even that it is 5 month since surgery, so I guess brain is still learning.
Hang in there, I am sure your brain will adapt, even that I know it must be somewhat disabling.
MikeMess Guest
Posted
Interesting that you mention a 'strange feeling, hard to explain' under the fluorescents. For me, it's sort of like a burning sensation, too bright sometimes even with my eyes closed. It makes it hard to think, almost like I'm frozen in place and getting more nauseous. Like you, I just want to get out.
My cure is to expose myself to the harsh lights and, in Mick Mulvaney's words, get over it. I was give the same 2-3 year timeline for some decent improvement by multiple doctors, provided I subject myself to the very thing that makes me ill. At least there is light at the end of the tunnel 😃
Sue.An2 MikeMess
Posted
That sounds awfully uncomfortable and not in the least bit within the norms. It is normal for their to be sensitivity to light for first several weeks - maybe a few months at best. Cataracts provided a filter to the light so when those are gone everything does seem awfully bright. I wire my sunglasses inside my home for awhile - couple of weeks. But to be constantly bothered by it - seems something isn't quite right. Perhaps the drops you are using? Have you had a thorough independent eye exam - ensure the IOL is centered correctly and not tilted which may scatter the light?
Sure hope you get relief from this.
MikeMess Sue.An2
Posted
Hi, Sue. I'm not using any drops right now, but I am sorely tempted to start using the Pilocarpine.
Like others on this site, I've been through a lot of exams - My local eye doctor, the place that did the surgeries, a top neuro-opthamologist, a cornea specialist, the top opthamologist I could find in the Seattle area and the best doctor for this stuff (and his protege) that I could find anywhere (Salt Lake City). I was misdiagnosed with Pseudophakodonesis, and most of the other doctors looked at my eyes and said the IOL was centered and looked fine.
Now, the top three doctors I could find, all with a ton of experience, all said the same thing - My brain can't deal with the new light coming in after the natural IOL was replaced. I was told that there will be over 3 million cataract surgeries in the U.S. this year and there will be maybe 10-20 patients, if that, with whatever I have. Dr Olsen even speculated on how the mis-diagnosis occurred (reflectivity) and said that only a few percent of career opthamologists would ever have heard of this.
There is no choice. Subject myself to the harsh light, or hide in the dark the rest of my life. Things will likely get somewhat better with time, the brain is marvelous at neuro-adaptation. Meanwhile, it's driving me nuts. So frustrating, there is no break from it.
Sue.An2 MikeMess
Posted
Very sorry you have to deal with this and it is especially hard if one doesn't fall within the norms. I have experienced that with other health issues and told by doctors I was even imagining the symptoms - until I finally git someone who investigated further and found source of my health problem. It can be so hard and you wonder if it's just you.
Hope exposing yourself to light will eventually lead to brain fully adapting. Meanwhile not all sunglasses are created equal and may help along the way. Perhaps Pilocarpine drops might help. Wishing you all the best and a way to cope in the meantime.
julielyn MikeMess
Posted
mike, are you taking any steroids?
i had horrible light sensitivity each time i reduced the usage of steroids
MikeMess julielyn
Posted
Hi, Julielyn. No steroids, I was just given a prescription for Pilocarpine. I'm determined not to use it, but by the end of each day my eyes are nearly shut from all the light, so maybe tonight for the Christmas Eve party.
Sometimes the light is too strong even with my eyes closed. I wish I had a surgical path for improvement.
soks MikeMess
Posted
try over the counter Lumify and see if that helps. it helps me for 4 hours. low concentration brimonidine tartrate but has preservative BAK.
MikeMess soks
Posted
I will take a look at that. I tried using Pilocarpine today and it did not help. I've also been prescribed Nortryptaline, but didn't like the side effects, so stopped taking it.
Thing is, I never really get a break. Mentally, it's draining. Trying not to feel too sorry for myself here though, there are lots of people on this board with their own major issues to deal with.
soks MikeMess
Posted
sorry pilocarpine did not work. pilocarpine does have a risk of inducing retina detachment however it reduces the pupil permanently. you ma6 also want to check the yellow night vision glasses to reduce the brightness.