Ruptured AVM: Has anyone dealt with photophobia?

Posted by avmcbellar @avmcbellar, May 25, 2020
@avmcbellar

Hi @rwinney. Thank you. I received my sleepfun, light blocking mask. I use it at night which I found helpful to block all the electronic lights. Amazing how the smallest lights at night bothered me. I did read that darkness can make photophobia worse. Photophobia can be related to strain and dryness of the eyes. There are some glasses that filter blue light so maybe those can help you. Besides the electronic screens, blue light can be seen in fluorescent or LED bulbs.
I did see my ophthalmologist. My eyes continue to struggle with palsy of cranial nerve 4 as a result of my ruptured AVM. The eye strain is from the double vision. There has been a slight improvement over the years but not enough. As my doctor explained, prisms in my glasses will not help because of the torsion. My options are to either continue blocking sight from one eye or to have surgery. The surgery is not guaranteed, too fine for the adjustment. Any over adjustment will still cause double vision but a prism could offer some assistance. Sorry I couldn’t offer any more information on photophobia. I did order glasses with my new prescription. The use of bifocals with a line will cut back on the dizziness compared to progressives which have a gradual change. I had progressives before. I never could move my head to the right position to eliminate any dizziness.
You mentioned surgeries. Did you research hospitals with a higher success rate for eye surgeries? I found hospitals in California with eye experience. Not sure about the other states. I will continue to research before deciding on any surgery. I appreciate your help. Keep on learning to help yourself. It certainly is not an easy journey. Let me know if I can help. Good luck!

Jump to this post

@avmcbellar Hi! Thanks for the update and information. Im sorry to hear of your eye troubles. Double vision is no fun. I had it from secondary cataracts but was corrected with YAG laser treatment.

Glad you find the mask helpful. I agree that it is disruptive to photophobia when going from complete darkness to light. I experience and feel its repercussions but, did need my mask the other day after being dilated, regardless. Light for me is tough let alone with dialation.

I went to my cornea specialist this week for the usual 6 month check up. My cornea transplant and cataract surgeries were done 7 years ago. The transplant cells remain healthy, with one eye looking prettier than the other which means less healthy cells left. Obviously, that tells which transplant will fail first. My good news was that doc thinks I may go beyond the 10 year expectation!

Regarding prisms….I only know of them because before I was "properly" diagnosed with secondary cataracts…my eye dr gave me prism stickers to put over my lenses to try and help with double vision and was sending me to eye physical therapy. Completely wrong! This is why we do our research and cant always be at the mercy of our Drs.

I sure hope the bifocal lines help you along. Progressives are difficult. I crank my neck down to see the ground and going down stairs, with my progressives. Can add to dizziness at times.

Take care and best of luck going forward.
Rachel

REPLY

@rwinney it was nice hearing from you. Sounds like you have been through a lot yourself regarding the health of your eyes. Glad your transplanted cells will be good more than 10 years. I am sure you took proper care of your eyes giving them good nutrition. Do you have to do the surgery again after 10 years? What caused your double vision? I know with mine the nerves controlling the eye muscles responsible for looking inward and downward did not work well. The muscle is too weak on one eye; therefore, each eye has a different image creating the double vision. In the beginning, as recommended through my research, I did eye muscle strengthening exercises to correct my double vision. I believe it helped slowly over time. My doctors provided little information, only to give it time. I was told I could either wear an eye patch or just leave the eye alone. It may correct on its own. I tried the patch for about a month but it bothered me when I took it off. The eye image that had the patch was much darker. So I decided to stop the patch and concluded how would my bad eye know to adjust itself when it is not being used. I placed frosty tape on my glasses which allowed light in and at the same time stopped the double vision. It worked well for a while, plus I did my eye exercises. A few months later I slowly started to develop photophobia. Next, I recently went for an eye exam and learned about the surgical procedure for the optical torsion since a prism offered no relief. My eyes now had settled to make that determination.
I have a friend who told me about the eye therapy. For her it has helped along with the prism. All cases are different. I am glad some people can find a solution. I believe it takes research along with trial and error. She is a believer like me. We contact each other to see what works or doesn’t work and feed each other information through our experiences.
Wearing the mask for dilation is a great idea. There are many good uses for the mask. Another is the dentist office as you mentioned. I am looking forward to my glasses. They come with the sun visor clip ons. I hope to get some relief at least until I decide on the surgery. Thanks again for your input.

REPLY
@avmcbellar

@rwinney it was nice hearing from you. Sounds like you have been through a lot yourself regarding the health of your eyes. Glad your transplanted cells will be good more than 10 years. I am sure you took proper care of your eyes giving them good nutrition. Do you have to do the surgery again after 10 years? What caused your double vision? I know with mine the nerves controlling the eye muscles responsible for looking inward and downward did not work well. The muscle is too weak on one eye; therefore, each eye has a different image creating the double vision. In the beginning, as recommended through my research, I did eye muscle strengthening exercises to correct my double vision. I believe it helped slowly over time. My doctors provided little information, only to give it time. I was told I could either wear an eye patch or just leave the eye alone. It may correct on its own. I tried the patch for about a month but it bothered me when I took it off. The eye image that had the patch was much darker. So I decided to stop the patch and concluded how would my bad eye know to adjust itself when it is not being used. I placed frosty tape on my glasses which allowed light in and at the same time stopped the double vision. It worked well for a while, plus I did my eye exercises. A few months later I slowly started to develop photophobia. Next, I recently went for an eye exam and learned about the surgical procedure for the optical torsion since a prism offered no relief. My eyes now had settled to make that determination.
I have a friend who told me about the eye therapy. For her it has helped along with the prism. All cases are different. I am glad some people can find a solution. I believe it takes research along with trial and error. She is a believer like me. We contact each other to see what works or doesn’t work and feed each other information through our experiences.
Wearing the mask for dilation is a great idea. There are many good uses for the mask. Another is the dentist office as you mentioned. I am looking forward to my glasses. They come with the sun visor clip ons. I hope to get some relief at least until I decide on the surgery. Thanks again for your input.

Jump to this post

@avmcbellar My double vision came from developing secondary cataracts a few years after my original cataract surgeries. It was overlooked by 2 Drs which is why I was treated along the lines of how you've been dealing with your double vision….prism stickers, eye excercises. Mine ended up being fixed by laser surgery in each eye. Yes, I most likely will need round 2 of cornea transplants as the healthy cells slowly die off from Fuchs Dystrophy. I was only 43 when I had the surgery…now 50 so, I've got a ways to go with these eyeballs. I do try to eat healthy for my eyes, migraines and small fiber neuropathy. I've always felt like I've been a bit doomed neurologically as all my problems seem interconnected with hyper sensitivity. It's awesome that you are so proactive and a great advocate for both yourself and your mom! Keep up the good work and thank you reaching back out. I'd like to hear how you do with your new glasses.
Rachel

REPLY
@avmcbellar

Hi @dietgourmet. Thank you for your response. I have read some of the causes for photophia can be eye strain and eye dryness. Constant darkness can make it worse not better. I do get relief briefly from the lubricant eye drops and sunglasses. I discovered blocking the blue light emanating from light bulbs also helps, particularly fluorescent bulbs. The blue light can also be filtered from the Ipad and Iphone screens. These are some of the steps I took today. I am glad you found a solution that works best for you and thank you for sharing.

Jump to this post

hi i am new ! i am searching for people with severe light sensitivity omg ! i need help its my husband, he has been aroung the ring with photophobia,

REPLY

if anyone out there can give me insight, he already had a cataract removed, and cannot see in the light, go outside , fishing, to the pool ! never seen such a scary thing, doctor says its dry eye syndrome? all of a sudden? I dont get this, he is a very healthy active 65 yr old, how long can this go on?

REPLY
@sunny1971

if anyone out there can give me insight, he already had a cataract removed, and cannot see in the light, go outside , fishing, to the pool ! never seen such a scary thing, doctor says its dry eye syndrome? all of a sudden? I dont get this, he is a very healthy active 65 yr old, how long can this go on?

Jump to this post

@sunny1971 Hello and welcome to Connect. I'm sorry to hear about your husband's photophobia. I too suffer from photophobia, for about 8 years now. He only had one cataract done? How long has it been since surgery?

REPLY
@rwinney

@sunny1971 Hello and welcome to Connect. I'm sorry to hear about your husband's photophobia. I too suffer from photophobia, for about 8 years now. He only had one cataract done? How long has it been since surgery?

Jump to this post

Hi thank you, it has been 4 weeks today, doctor says his eyes are excellent ! 20 20, he never wore glasses, or had an eye exam,until november, last year, when he found out he had a large cataract, surgery was great but just before his findings he could not go outside, we thought it was the cararact, but its worse, and doctor says now, he believes its "dry eye syndrome"? really? i cant believe it, but doc put eye plugs in and he uses gel drops, thats it, no improvement at all? thats been 1 and a half weeks now.

REPLY
@sunny1971

Hi thank you, it has been 4 weeks today, doctor says his eyes are excellent ! 20 20, he never wore glasses, or had an eye exam,until november, last year, when he found out he had a large cataract, surgery was great but just before his findings he could not go outside, we thought it was the cararact, but its worse, and doctor says now, he believes its "dry eye syndrome"? really? i cant believe it, but doc put eye plugs in and he uses gel drops, thats it, no improvement at all? thats been 1 and a half weeks now.

Jump to this post

couldnt there be some kind of contact lens to help? one thing i did not ask the doctor, but will nxt visit. I am so concerned he is an outdoorsman, and it just showed up one day, it did go away, then came back??

REPLY
@sunny1971

couldnt there be some kind of contact lens to help? one thing i did not ask the doctor, but will nxt visit. I am so concerned he is an outdoorsman, and it just showed up one day, it did go away, then came back??

Jump to this post

@sunny1971 There can be mitigating circumstances. For me, I had photophobia prior to cataract surgery on both eyes at age 43. Shortly after cataract surgery, I had cornea transplants in both eyes. These procedures were to help or take away photophobia. Didn't happen. I continue to be highly sensitive to light, grey days are the worst. Bright, flashing lights are like daggers. I too have dry eye and my neuro Opthamologist said my blue eyes and scar tissue from my surgery were factors. Blah, blah, blah! I'm still frustrated over it but have understood that some things are simply the card we are dealt. For your husband….perhaps he continues to heal from cataract surgery, has developed dry eye and, hate to say it but, the aging process dictates. My mother (just turned 70) lives miserably with dry eye after cataracts were fixed 2 years ago and has blurry vision daily. She lives on drops. I'm hoping things settle for your husband. In the mean time some tips are:
sunglasses, hats or visors, blue light filters on all devices, tinted glasses, lubricating drops, warm wet compress, prescribed drops like Restatis. There have been many discussions on dry eye through threads on Connect. Scroll through and look for tips from others experiences. Best of luck to your husband. I feel his pain and discomfort.
Best,
Rachel

REPLY
@sunny1971

couldnt there be some kind of contact lens to help? one thing i did not ask the doctor, but will nxt visit. I am so concerned he is an outdoorsman, and it just showed up one day, it did go away, then came back??

Jump to this post

I am not familiar with a special contact lense for photophobia. Are you thinking glare resistant or tinted? Google away and search it out. Asking Dr. is good too but who likes to wait for the next appointment!

REPLY
@sunny1971

Hi thank you, it has been 4 weeks today, doctor says his eyes are excellent ! 20 20, he never wore glasses, or had an eye exam,until november, last year, when he found out he had a large cataract, surgery was great but just before his findings he could not go outside, we thought it was the cararact, but its worse, and doctor says now, he believes its "dry eye syndrome"? really? i cant believe it, but doc put eye plugs in and he uses gel drops, thats it, no improvement at all? thats been 1 and a half weeks now.

Jump to this post

Hi @sunny1971, I'd like to add my welcome. In addition to the great information and experience from @rwinney, I thought you might be interested in this information:
– How to manage dry eye from the American Optometric Association https://www.aoa.org/patients-and-public/eye-and-vision-problems/glossary-of-eye-and-vision-conditions/dry-eye

My mom also has dry eye. She uses drops and find that compresses help relieve the irritation when it gets bad. I can understand your disbelief that your husband would suddenly have dry eye, but I wonder if it was gradually starting before the cataract surgery and it became worse afterwards. I hope he sees improvement soon.

You may also be interested in these discussions in the Eye Conditions group (https://connect.mayoclinic.org/group/eye-conditions/):
– Dry eyes https://connect.mayoclinic.org/discussion/dry-eyes-1/
– Xiidra (Lifitegrast ophthalmic solution) for dry eyes https://connect.mayoclinic.org/discussion/xiidralifitegrast-ophthalmic-solution-for-dry-eyes/
– scarring after cataract surgery https://connect.mayoclinic.org/discussion/scarring-after-cataract-surgery/

REPLY
@rwinney

@sunny1971 There can be mitigating circumstances. For me, I had photophobia prior to cataract surgery on both eyes at age 43. Shortly after cataract surgery, I had cornea transplants in both eyes. These procedures were to help or take away photophobia. Didn't happen. I continue to be highly sensitive to light, grey days are the worst. Bright, flashing lights are like daggers. I too have dry eye and my neuro Opthamologist said my blue eyes and scar tissue from my surgery were factors. Blah, blah, blah! I'm still frustrated over it but have understood that some things are simply the card we are dealt. For your husband….perhaps he continues to heal from cataract surgery, has developed dry eye and, hate to say it but, the aging process dictates. My mother (just turned 70) lives miserably with dry eye after cataracts were fixed 2 years ago and has blurry vision daily. She lives on drops. I'm hoping things settle for your husband. In the mean time some tips are:
sunglasses, hats or visors, blue light filters on all devices, tinted glasses, lubricating drops, warm wet compress, prescribed drops like Restatis. There have been many discussions on dry eye through threads on Connect. Scroll through and look for tips from others experiences. Best of luck to your husband. I feel his pain and discomfort.
Best,
Rachel

Jump to this post

thanks for all your input, he has been doing the all around, sunglasses doubled, hats, everything imaginable,he had the photo sensitive prior to removal of cataract, i had both done early in life in my 50's, no problems, we are both very blue eyed people, he is dark skin, i am very fair. He cant drive the car in the sunlight ! he hides in house with curtains drawn, tv on low light, cant
handle it. I gave googled away on everything, started to believe, this is a trauma to his thinking, but gonna give it some more time, then don know where we will go with it. He is a surfer, has surfed most his life, been in the sun forever, fishes, surfs, beach,
there you have it. Appt is 8/12, cant wait that long, will keep on looking for answers. Thank you again !! Marianne

REPLY
Please sign in or register to post a reply.
  Request Appointment