I met with my OT this morning and he has adjusted my schedule. I am going to continue with the vision therapy but slow it down.

He also want me to curb all of my activities to see if I can get on a better footing. He actually wrote out exactly what I should do for the next 2 weeks and I am to follow it exactly.....

It can be hard when you start getting back into life not to just jump forward. With children there are always thing that come up and it can be really tiring and you feel guilty about saying you are not well enough.

He also set up expectations for the next 3 months which he said may or may not be achieved but it gives me something to reach for.

I am going to see the neuro opthomologist next month and I have just received my prism sun glasses. I find it hard not to be in the same city and able to access services as I would like.

I hope things go well.

Sorry you're going through this.

They have me doing vestibular/vision therapy at my rehab.

I do it half heatedly and skip it sometimes because I just don't buy it. Maybe I'd buy it if it didn't make me feel worse. I just think, our bodies tell us things. Why do we purposely ignore those signals?

As soon as I feel dizzy I quit. My prism glasses have helped immensely in dealing with regular life. I don't do the exercises at home. By days end I'm highly symptomatic as it is. Not adding to it.

WCB is sending me to a regular ophthalmologist tomorrow actually, because my local optometrist recommended vision therapy and they want a second opinion. Doubt a regular ophthalmologist will know much about it.

Hope you get some rest and relief.

I might his wrong, but I thought I was told that the vestibular and vision therapy is suppose to make you feel sick (fun). The idea being that you make yourself dizzy and your system tries to right it. It kinds of resets itself.

I am going to ask more questions the next time I see them.

With vestibular therapy, dizziness is okay, but headaches increasing is not okay. I did vestibular therapy, but most of my problems were related to my vision, so it only helped minimally. My vision therapy is totally separate thing, different therapist. I was told that doing vestibular and vision therapy at the same time would be too much. That makes sense to me.

I'm still pretty much having pain just by any exposure to light at all, but it seems like the pain goes away more quickly when I put on a sleep mask then the first few days. I'm hoping by coddling myself, not driving, not watching TV, not reading more than a couple minutes, not looking at my iPhone screen for more than five minutes twice-daily, resting frequently with my eyes covered, and using a cool compress five times per day, I will get back to a more manageable pain level quickly. Fingers crossed!

I have been gradually getting better. Right now I've been on my iPhone for probably seven minutes without any eyestrain. Soon as I start to feel eyestrain, I stop any activity immediately and put on a sleep mask until the pain goes away, if I can. Sometimes that's not possible, and I just shut my eyes as much as I can until I get an opportunity to rest. A cold compress over the sleep mask seems to help, though I think it could just be the resting the helps. I've been resting for my daughters two hour nap in the afternoon. I hope to be back to my previous level of eyestrain and photosensitivity in a couple weeks. Less would be better, but I'm just trying to be realistic! I have an appointment with my neuro op tomorrow, so i'm interested To see what he has to say. He will not be running any tests on me though! I'm putting my foot down.

I have been running my new regiment of activity for a little over 1 week.

I am still having bad headaches, but it doesn't seem as bad. I think though I need to cut down on my other activities in order to accommodate the vision therapy.

I find that disappointing as I am really looking forward to getting back some level of activity (it was a long winter with a lot of isolation). I will stay on the short leash as per instructions from the occupational therapist.

I hope things get better for you.

I went to my neuro optometrist on Tuesday and got some rather upsetting feedback from him. I basically told him that I thought his test on me Triggered my setback, in particular the fact that he shines a bright light in my eyes. At the time, I remember it was very shocking And uncomfortable for me. If I known he was going to do it, I would've told him no. Anyway, he felt pretty terrible about it, I could tell, and he basically said that I should stop doing vision therapy, since it was only increasing my pain, that i was the worst case of photo sensitivity he'd ever encounter, and that the only thing he had to offer me was light therapy, where I would be looking at a violet light two or three times a week for 20 minutes each session. He said it could help, but not necessarily that it would. He said other than that, all I could do was rest and wait For one or two years and hopefully I would be better by then.

I told him I would talk to my husband about the light therapy and get back to him. I decided to seek a second opinion and see and neuro ophthalmologist. I kind of skipped that step and went straight to the optometrist. I don't even know if it's worth my time, effort, and money, I just want make sure there's nothing else Contributing to my pain and that there's nothing else I can do to get better.

I have been getting better. The first four days, it just felt like the pain would never stop. After that I started slowly improving and now it seems like the pace of my recovery has picked up a bit. I'm not back to the level of pain I felt prior to the setback, but I feel I will get back to that. What I don't know is if I'm going to get any better than that. It scares me. What job could I possibly do that wouldn't involve a computer or being in fluorescent lighting? I know it's too soon to worry about that, but I do think about it sometimes and come up blank.

On the upside, I got my new super dark sunglasses with prism lenses. They are a huge improvement over my old glasses. I should've done this four months ago. I also kind of fault my optometrist for that.

Your sensitivity to light will gradually decrease. For months, I had to wear double-layer sunglasses everywhere...including indoors on cloudy days and at night. I had large, extra-dark sunglasses that fit over my regular glasses and clip-on sunglasses. I had to put duct tape over every exposed corner of the large sunglasses so that no light was coming through anywhere, and I always wore a hat with the brim pulled down over my glasses.

During that time, I could not even look at a computer for more than, say, 30 seconds at a time. That was with the screen dimmed and all of the aforementioned eyewear. I had to "listen" to posts here, as well as emails and such, via text-to-voice software.

Over a period of many months (which has included a couple of severe setbacks), I have improved to the point where I can almost always get by with a light FL-41 prescription tint and a hat. I do still need extra eye protection in fluorescent lighting, but I don't react nearly as strongly to it now as I used to.

Even if your photosensitivity is the worst case your opto has ever seen, I doubt that it is worse than mine was during my worst period. (I can't even imagine how photophobia could be more severe than what I had.) I do not know whether your photophobia will ever resolve completely, but I am very confident that it will improve quite a bit. It takes A LOT of time, though, and progress is not always steady. Please try to be as patient as you can with your recovery. I know first-hand how difficult this can be. Still, even with my remaining photophobia, my life is immeasurably better now than it was when my photophobia was at its worst.

We're you just in constant pain? Did the eye pain feel stinging?

Dear xanadau00,

I also have photophobia in my left eye only. Its not so severe as in I can still carry on my daily life but it is annoying!I do feel it has improved a little bit.

Do you think I should just wait and see or get vision therapy?

Thank you!