Has anyone else tried the tinted glasses or colored overlays? If so, did they help?
I am 4 years post crainiotomy and I have had photosensitity ever since. The best thing I have found is sunglasses that are amber to red tinted. They block out the blue wavelength of light that causes the headaches. I pretty much live with them on my head everywhere I go, even watching tv. Hope this helps! Be well.
You know, I've been blaming my sensitivity to having cataract surgery and to allergies, but now that you mention this in this post, I wonder....
I cry all the time. My eyes have been so sensitive since my surgery, as well, but for me, it's been alot longer than a year.
My eyes do water all the time, same as you.
You now have peaked my curiosity. We need to see if there are any good answers for this.
My AVM was near my ocipital area of my brain, was yours?? (just curious)
Yes, I too am affected by light among other issues. Dependent upon location of AVM, size, etc. unfortunately for me in hospital right and about to surrender to the pain aspect. Not what anyone needs to hear, but not speaking of the 900 lb gorilla seems to be my families biggest concern. I guess denial affect all in different ways.
I offer my prayers to all whom are affected by these low communication issues, it is frustrating trying to explain what we often deal with, stand your ground, be strong, do not go quietly into the night.
Not typical of this sight but if anyone wishes to speak my hospital number is 954-■■■■■■■■ room 258 bed 1… My Bobby (avm) is located in my left basal ganglia thalamus.
Molly, buy some shades and not cheap sunglasses… And go enjoy our beautiful world.
God bless
Gil
Thanks for your insight about the tinted glasses. I read a little about blocking out the blue wavelengths, and it's great to read that it's helping you.
Hi,Sandy. My AVM is in my left temporal lobe, but I suppose the optic nerve runs through there somewhere. I'm hoping my visit with a neuro-opthalmologist will give me some explanation. I like understanding the "why". I don't know anything about the effects of cataract surgery, but it's pretty common to have photo sensitivity after brain injury. I'm looking forward to shopping for the right kind of glasses. Maybe that would help you, too.
Hi Molly, I have an unruptured AVM in the right occipital lobe and had embolisations and gamma knife back around 2002 or so. Since the treatments I have significant photophobia and live with sunglasses & baseball cap permanently at hand and I avoid going out on bright days as much as possible.
When I first had the gamma knife radio surgery it left me unable to handle normal light levels without it triggering migraine headaches. Since then over the years it has gradually gotten much better, but has not returned to normal yet.
I am prescribed sodium valproate (also known as Epilim) to suppress migraines that are triggered when I get too much light, and it works very well, and I HAVE noticed that when I forget to take a tablet the photophobia seems a lot worse, so maybe your doc might have an opinion on such families of drugs, perhaps in low doses...
Oh, and yes, fluorescent lighting is the WORST! Going on trains at night wearing dark sunglasses to avoid a migraine seems sensible, but I get such weird looks.... :)
Sincere best regards.
I am definitely going to buy some quality shades. I've been making it by with cheap sunglasses for far too long. I'm sorry you're dealing with such pain, and I hope you can get some relief and rest quickly. Don't give up.
I found this post that dealt with similar issues. It has a link to non-prescription glasses in all kinds of tints and colors. I thought it could be helpful to you. All the best!
http://www.avmsurvivors.org/forum/topics/a-tip-for-those-with-visual
I'm fortunate that I don't get migraines as a result. I say wear the dark sunglasses proudly and ignore the weird looks! :)
I'm glad to read from you that it has gradually improved over the years even if it hasn't returned to normal. That's hope for all of us that with time, we may recognize improvements. Thanks, Pete.
Thanks, Tim! I'll take a look at this. :)
This is very interesting to me. I was diagnosed with an AVM on my left ear and scalp and salivary gland at age 44 however all during my school years growing up I had horrible headaches and anything under flourescent lights was shimmery and looked like static on a TV. Now even years later looking at anything white or blank like a grey sky or a painted wall looks shimmery. I've told eye doctors over the years and I always got the "she's crazy look" directed at me and no explanations. I also can't see to drive at night and am night blind even in a dark room. I don't know how an outside the brain AVM would cause this but I've been living with it all my life.
Hi Molly,
I started getting photosensitive even before my AVM/seizure/blood stroke in 2013--I connected it with my growing cataracts. So, it is interesting also to connect it with the AVM. Glasses (whether sun or not) with the correct lens and hats--all good. What prompted me to write right now was the computer screen.
I have a Mac Air but all Apple/Mac computers have light control keys on the very top line of keys above the numbers on top the letters. Thank goodness. If PCs do not give user that control, then such is a good reason to jump ship and get a Mac, in my opinion. (Also, some televisions come with a night vision switch, not as bright.)
Hope this info helps.
I have been searching on my old computer, new computer and ipad looking for a great study or article I had about photosensitivity and homonymous hemianopia, and AVMs in the occipital lobe and parietal lobe, but I cannot locate it. I will tell you I remember reading that being sensitive to changes in light and being photosensitive is very common after brain injuries to those lobes. If the AVM was/is on the right side of the brain in the visual cortex, which is mainly in the occipital lobe, there is almost always photosensitivity to some degree (if the AVM is on the left side, there is less of this photosensitivity but it definitely can occur). I remember reading that with or without hemianopia, your eyes dilate so much slower than a normal set of eyes. I then realized why it seemed to me I always tripped over a threshold when entering or leaving a building. If I am in a big box store, which is rare for me, i am blind when I walk outside, and it takes me awhile to get the courage to move. Take your time and don’t fall as I have done so many times in my life. I am almost 65 and am paying now for all the times I fell. Good luck.
beans
I had the sensitivity before my crsiniotomy 4 weeks ago. I couldn’t go anywhere or do anything without the lighting turning my messed up head into a horrible migraine with dizzy vertigo double vision. This is how I found out about my AVM. I had two doctors tell me my headaches weren’t from my AVM but that is total BS. I have read that so many people with AVMs suffer from headaches and vision disturbances. I’m still recovering and my face is still pretty swollen so I can’t tell if this issue has resolved yet. Mine was in my left frontal lobe really close to my left eye. In fact I have a 12 inch scar from the right side of my head all the way over to the left and about an inch past my left ear. They removed my skull on the left side of my forehead. So the swelling and muscle tightness is still playing with my vision. I was told I might have to follow up with a specialist who helps with vertigo and headaches. Best wishes to you. I have read that a lot of people struggle with their vision if they have a cranial AVM
I wore sunglasses around the clock for almost a year after my surgery. It still bothers me, but not nearly like it used to. As in some of the other comments I buy the best sunglasses I can find, and limit my night driving to familiar areas. It will improve, but unfortunately won’t go away.
I’ve gotten the “she’s crazy look” a few times, too. Things that originate in the brain are hard to explain to anyone who’s never experienced it.
Thanks, Elizabeth. I adjust my screen brightness on all my devices. It does make it more tolerable.
That’s interesting information. Thanks, Beans.
Mine definitely started when the AVM ruptured. It’s a lot better now than it was then. I hope you’re doing well. I didn’t have a craniotomy so I can’t relate to the surgical aspect or that recovery, but I know it brings a lot of new things to cope with. Best wishes to you, too.