[xanadu00]

I just passed the 15 month mark, and am at 8 and a half months since my relapse (or reinjury) in early August. That's when the photophobia started. For months I could barely leave the house and wore two layers of sunglasses, one extra dark with duck tape over all the corners so no light could get in. It was improving for about a month starting in mid-November and then got really bad again around Christmas, and didn't start to improve at all for over a month.

I am happy to say that I am finally starting to get some relief from this symptom. Tonight I was able to drive part of the way home in the dark without wearing light sunglasses (because of the headlights and stoplights), and without it hurting my eyes much. This is the first time that has happened in many months.

Oddly enough, my sound sensitivity is actually a little worse than it was a few months ago, but it is manageable. Other symptoms continue to improve very slowly, and with a lot of back and forth: brain fog, dizziness, fatigue, and headaches are the main ones. On some days, one of these symptoms is particularly bad while the others are manageable. Other days it's a different symptom that's flaring up. I've had a few days here and there when all my symptoms were down and I was able to function pretty well. That doesn't usually last for more than a day...yet.

I still have a long way to go, but at least I am seeing noticeable progress, after months of either no progress or getting worse.

[Scott in Fenton]

This is great news! Congratulations. The photophobia is my biggest concern still; it prevents me from doing just about anything. Sitting in front of the computer now I have a program running that pulls the harsh blues out of the light and am wearing tinted prescription glasses to boot. It will not last long, I'll have to quit w/in an hour or so.

Does your photophobia include vertigo or like, nausea when you are in a moving vehicle? When I am in the car, I usually keep my eyes closed for most of the trip b/c the sight of the other cars, buildings, traffic lights, etc whizzing by makes me sick to my stomach most of the time, and dizzy. I have not driven since this whole thing began, and I think that's wise until I can handle a trip w/o the dizziness.

Congrats again, I hope you continue to get better!

[xanadu00]

Thanks, Scott. Sorry to hear that you're struggling with this symptom too; it really is debilitating. I assume the software you're talking about is f.lux, right? I have that installed too and it really makes a difference.

I do get some balance issues if I drive too much, but I don't think it's related to the photophobia. Vertigo hasn't really been a problem for me.

I started a couple of threads awhile back on making your computer more accessible for photophobia:

http://neurotalk.psychcentral.com/thread163832.html

http://neurotalk.psychcentral.com/thread166767.html

Here is another simple thing you can do that I didn't mention in those threads. Right click on your desktop screen and go to 'personalize'. Then go to 'windows color and appearance.' Try 'high contrast black' and see if it helps. You can also go in and individualize the color scheme from there, but I can't remember how and it can take a long time to get them balanced right.

Anyway, I hope you are able to see some improvement soon. Congrats on hanging in there with this condition and this symptom.

Pete

[EsthersDoll]

When I had a sensitivity to light, I just stayed indoors as much as possible and had black out curtains over the windows. When I had to go to a Dr.'s appointment or something like that, I would cover my head as much as possible and someone else would drive.

I am just realizing though (now that I'm doing better), that wearing welding glasses could help people suffering from photosensitivity. xanadu00, your idea to tape together two pairs of sunglasses is what made me think of it.

Maybe we could make a PCS Survival Kit that Dr.'s could pass out to their patients, or that could be ordered online and a pair welding glasses and foam ear plugs could be included in it along with a print out of the TBI Guide?

[Sabrinaj]

Hello. My fiancée suffered a corneal flash burn about a year ago and his photophobia has only gotten progressively worse. We have found that he can be out in light once he becomes accustomed to it and even then activity is extremely limited. He sits outside looking at plants while wearing polarized glasses, and a large towel that covers his head to block out peripheral vision as well. He has a major pain, like sharp stings in the eyes, when exposed to unexpected bright light, or when he moves his eyes too quickly in a bright area. He also cannot stand contrast light, ie reflections are the worst. Such as silverware, smart phones, cars, or other metal or chrome surfaces. He cannot physically look at a dimmed phone or TV in a darkened room. We have blocked out all our windows and covered everything that is reflective. He has developed severe dry eye as well which I know this affects photophobia. We are putting in Systane Ultra High Performance eye drops in every 6 minutes when he is in light. The doctors have been utterly useless. We have seen several opthamalogist and a neurologist but no one seems to help. We have gotten blood test and its proven not to be Sjogren's Disease. We are looking for an MRI now but seem to be lost about what to do next. We desperately need advise from people who have overcome this kind of severe photophobia and those who may still be living with it. What kind of advise, treatment, or suggestions do you have? Did you do any exercises that helped? Take any medication or supplements that improved the light sensitivity? How were you able to introduce contrast light to your eyes again? We feel completely alone and are in desperate need of support and answers. Thank you to any and all replies.

[Mark in Idaho]

Sabrinaj,

Welcome to NeuroTalk.

I don't know of anybody on NT who has had photophobia as severely as your fiance.

Has he been checked out by a Neuro Ophthalmologist ?

As mentioned above, welding supply shops sell dark tinted glasses with blinders that may help him. Google 'welders glasses.'

My best to you both.