Ruptured AVM: Has anyone dealt with photophobia?

Posted by avmcbellar @avmcbellar, May 25 8:36am

Has anyone dealt with photophobia?

What helps your eyesight? As a result of the photophobia my eyes burn when trying to focus. I have tried the lubricant eye drops and gel solutions. They do help but my eyes still feel the strain.

REPLY
@avmcbellar

What helps your eyesight? As a result of the photophobia my eyes burn when trying to focus. I have tried the lubricant eye drops and gel solutions. They do help but my eyes still feel the strain.

Jump to this post

@avmcbellar Flooding them with systane lubricating drops, UV protected sunglasses, avoidance of bright lights, direct sunlight and blue light. Wearing hats and sunglasses and the hardest one yet….staying off phone/computer or reading. Turn brightness down on screens and take visual breaks. Long breaks with eyes closed and then find a focal point at a distance.

REPLY

@rwinney, thank you for the recommendations. Although it is difficult not to use the computer and phone, I limit my use and wear sunglasses while I do. I also wear sunglasses to watch some TV. Thanks again for your help. Is there any advise or help given by your neuro ophthalmologist? I will be visiting mine next week. I want to get a pair of glasses for far away and one for reading. Don’t know if there is a tint that will help.

REPLY

@avmcbellar No problem. He dd not offer much at all unfortunately. I saw him many years ago after surgeries, which never helped photophobia. Another thing I've done is adjusted my TV brightness as well and I sit at an angle to watch it. (Thank goodness my husband has his man cave with his high def bright TV and I have my own!) And I just finished resting my eyes behind a blackout eye mask that I ordered through Amazon. It has molded eye cups and soft adjustable strap. I'm all ears if your neuro opthamologist has any insightful recommendations that you'd like to share. Good luck with your appointment.
Rachel

Liked by avmcbellar

REPLY

@rwinney Thanks. Absolutely, I will pass on any information I find helpful. I am considering purchasing a blackout mask as well through Amazon. My husband has been mentioning it. Which mask do you recommend? Do you also use it at night?

Liked by rwinney

REPLY
@avmcbellar

@rwinney Thanks. Absolutely, I will pass on any information I find helpful. I am considering purchasing a blackout mask as well through Amazon. My husband has been mentioning it. Which mask do you recommend? Do you also use it at night?

Jump to this post

The brand is Sleepfun. I got a 2 pack for around $10. I use it to escape light when nothing else works. I had to give up night driving a couple years ago due to photophobia but, even as a passenger at night, I struggle with the lights and contrast of the darkness. The blackout mask was the only way I could ride at night. Also, the dentist lights hurt terribly so the mask has been a huge relief for cleanings and fillings. Sunglasses dont cut it for me in these circumstances.

Liked by avmcbellar

REPLY

@rwinney thanks, I ordered the blackout mask. Looks great for blocking light. Good idea for my dentist appointment which is coming up next week as well.

Liked by rwinney

REPLY

Yes. I have it, my son had it, and my grandson had it. I wear sunglasses and didn't go out in the sun a lot. I was told to have my five year old son wear glasses and I bought him a pair, he went to the park and came back without them. My grandson got laser surgery for near sighedness and it was very expensive due to large pupils. We have blue eyes and I have almost perfect vision still, I just wore sunglasses and stayed out of the sun mostly which is like many conditions, manage them and you will be okay. Large pupils is a sign of sexual arousal, and I worked in a hospital so I got a lot of attention from male doctors who may not have known about photophobia. My son asked what photophobia was and was told it meant he was afraid of light, he said No, I am usually afraid of the dark.It isn't a big deal.

REPLY

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.

REPLY
@dietgourmet

Yes. I have it, my son had it, and my grandson had it. I wear sunglasses and didn't go out in the sun a lot. I was told to have my five year old son wear glasses and I bought him a pair, he went to the park and came back without them. My grandson got laser surgery for near sighedness and it was very expensive due to large pupils. We have blue eyes and I have almost perfect vision still, I just wore sunglasses and stayed out of the sun mostly which is like many conditions, manage them and you will be okay. Large pupils is a sign of sexual arousal, and I worked in a hospital so I got a lot of attention from male doctors who may not have known about photophobia. My son asked what photophobia was and was told it meant he was afraid of light, he said No, I am usually afraid of the dark.It isn't a big deal.

Jump to this post

Ah… children speak the truth😇

REPLY
@rwinney

The brand is Sleepfun. I got a 2 pack for around $10. I use it to escape light when nothing else works. I had to give up night driving a couple years ago due to photophobia but, even as a passenger at night, I struggle with the lights and contrast of the darkness. The blackout mask was the only way I could ride at night. Also, the dentist lights hurt terribly so the mask has been a huge relief for cleanings and fillings. Sunglasses dont cut it for me in these circumstances.

Jump to this post

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!

REPLY
@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.

Liked by rwinney

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
Please login or register to post a reply.