Have any of you found help for photo sensitivity? I am almost 1 year post AVM hemorrhage and almost 10 months post Gamma Knife. Photo sensitivity was bad for me for a couple months after the hemorrhage. I wore sunglasses in and out of the house for a while until it finally improved. I'm now having some trouble with it again. Fluorescent lighting, snow, overcast days, driving at night...all very irritating at times. It comes and goes. I've searched past discussions for comments, but the light from the computer screen gets irritating, too. Anyone?
Absolutely, Molly. It has been 7 years since my hemorrhage and I still have photo sensitivity. Same thing as well, fluorescent lighting, sunshine and cannot see well driving at night (which I do not do).
Have you seen a neuro-ophthalmologists. I have, however, there isn't much they can do about it...For me I just buy the best sunglasses I can find and that does help.
Wishing you the best.
It’s been almost 30 years since my craniotomy and I still have sensitivity to light.
Molly, part of the help is knowing that you are 1)not alone or 2)crazy. When I first started experiencing photosensitivity that came and went, I thought I was both. It was everything, even changing a light bulb. I finally started stating to people something like, "The light hurts my eyes." It lead to conversations that opened up with that person saying, "You know, there is this guy who says the same thing about the light." It may be that that person states that the light bothers their eyes. I flat-out refused to let my ophthalmologist examine my pupils with that beam of light. This also lead to a conversation about his other patients with epilepsy, who have had surgery, who are on anti-seizure meds, etc... who also have sensitivity to all sorts and conditions of light. So I told him that I wear those sunglasses that fit over my prescription glasses. They work for me. He concurred. While it's a pain to remember to wear them consistently, it's a bigger pain not to do so. Hope this helps.
hi molly, im almost the same as you, i had rupture last May 22, gamma knife in October. I dont have the trouble with sensitivity as much as just the vision loss from the rupture. i do notice that at times i just feel like im in dreamland..i cant drive in the city anymore either without feeling like in a tunnel, frustrating, but overall i feel ok. One other thing i do notice is that if things are really moving fast around me, like in work or something, i cant seem to get focused on stuff, i kinda feel overwhelmed with trying to remember stuff. im ok with that cuz it doesnt happen that much and i dont really want to go on the steroids.
Hi, Louisa. I just spoke with my doctor yesterday, and he is referring me to a neuro-opthalmologist. I do suspect that it's a problem I might have the rest of my life. I guess time will tell. It'll be a great excuse to buy some really awesome sunglasses!
I see you're wearing a hat in your picture. Good idea. Hats might be in my future. :)
Dear Molly, I am 17 years post inoperable AVM. When I first experienced light sensitivity I chalked it up to my Type 1 diabetes. I am on two anti-seizure meds and was told by my neurologist that my sensitivity was not unusual. I wear glasses and that seems to make it worse on very sunny days. I stay in the shade and wear sunglasses. Guess I've learned to live with it.
Thanks for sharing your experience. There were some times when I thought I was crazy. It helped when the nurse at my neurosurgeon's office explained that I would have some side effects that would come and go after Gamma Knife. Of course, I made that phone call on a day of panic, but that simple explanation has helped many times when something weird started happening. I feel like I dwell in the land of weird now.
I understand some of those. I work in a somewhat chaotic environment, and I often have to leave the room when there's a lot of noise, too much movement, or bright lights. It's exhausting. I've spent a lot of afternoons and the following day in bed after one morning at work. Some things have gotten better over time, but that hasn't yet. I hope it gets better for you soon.
I am two years post AVM hemorrhage and mine on occipital lobe. My optic nerve was atrophy and I have visual processing damage. My photo sensitivity is contestant, I have seen a nuro-ophthalmologist and not really any solutions offered. I live in sun glasses, I do photography a lot that was great occupational therapy for me as well as creative and really the best thing that has happened for my mental and spiritual healing after the hemorrhage.
Working with flash a huge issue for me for my home studio room, but I have to adjust all the lighting in my home. I suffer severe headaches on bright sunny days with out polarized sunglasses.
Yes, but it never goes away in my case. I am 50+ years from AVM bleed and craniotomy and have homonymous hemianopia as a result. I wear maroon sunglasses which can help. I have learned to live with it because I am happy to still be alive.
I had a craniotomy in november 2014, after haemorrhage in same area as you. I find i have the same intermittent sensitivity to light and driving at night, an also as someone else mentioned when things move too fast. I just wear sunglasses when it happens and anti glare glasses (the ones with the yellow leses) at night. I think it’s just one of those annoying things that we have to learn to accept. I look at it like this…at least I’m still here and well enough to be annoyed! Also i find mine is worse when I am tired, dont know if it’s the same for you or not but I find a good nights sleep helps x
I guess regular glasses would increase the glare. I don't wear glasses, so it's new territory for me. Good sunglasses are sounding like a wise investment.
It's great that you're learning to adapt and use photography as therapy and healing. I think having something you love to do can make a big difference. After almost a year, I'm finally reaching a place of acceptance and being able to make decisions about the future based on what I CAN do rather than what I can't. That's a good feeling. Thank you for replying.
I've wondered about the maroon or pink tinted glasses and whether they help or not. It's nice to hear that they do.
You sound like you have a good sense of humor about it. I'm also glad I'm "still here and well enough to be annoyed"! I didn't mention it in my previous comment about work, but I work with children. They move frequently and make a lot of noise! I can't exactly tell them to stop. I'm glad you mentioned the yellow lenses. I wondered about those, too. Glad to hear they help. I would like to have another option besides sunglasses.
I forgot to add that yes, I do find it to be worse when I'm tired. Everything gets worse when I do too much...pressure, ear pain, light sensitivity, fatigue. Pacing myself has been a big change.
I have a year and five months and I have same issues I also get nausea alot . I also get vertigo if I do alot of looking around hope this helps take care
I'm so sorry you have nausea and vertigo along with it. That makes my irritated eyes not seem so bad.