← Return to Ruptured AVM: Has anyone dealt with photophobia?

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@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!

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Replies to "Hi @rwinney. Thank you. I received my sleepfun, light blocking mask. I use it at night..."

@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

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