Ruptured AVM: Has anyone dealt with photophobia?

Posted by avmcbellar @avmcbellar, May 25, 2020

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

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?

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.

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.

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