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Photophobia Improving

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Unread 04-26-2012, 09:49 PM   #1
xanadu00
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Default Photophobia Improving

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.
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Unread 04-27-2012, 03:11 AM   #2
Scott in Fenton
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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!
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Unread 04-27-2012, 08:18 AM   #3
xanadu00
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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
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Unread 04-27-2012, 11:26 AM   #4
EsthersDoll
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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?
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