Please help me
 

I'm doing traditional vision therapy and my eyestrain and light sensitivity is only getting worse! I keep improving in terms of the exercises I've been doing and tests that my doctor has done, so why is my pain only getting worse? On a scale of 1 to 10, I'm at a nine in terms of pain. I can no longer watch TV or really do anything without causing an increase of my pain. I'm supposed to drive two hours tomorrow to visit family, and I don't think I can do it. It's such a bummer!

The recent downturn occurred after my last vision therapy appointment. Then the following day I went to the doctor so I could get prism sunglasses finally, and he ran some tests on me, which were hard on my eyes. I felt terrible the rest of the day, and even worse The next day. Today, I just tried to do next to nothing, but even that is causing me pain.

When I started my therapy, my pain was at about six on a scale of 1 to 10. I'm just now afraid that I'm never going to get any better and I'm just going to keep getting worse. I stopped doing my eye exercises until I can talk to my doctor, but I'm just wishing I could research why this is happening and what to do about it.

Any advice or insight would be appreciated! What can i do or take to make this pain go away? Is there surgery or other therapies to deal with this kind of severe eye strain? I'd do anything to make it stop. Conciseness would also be appreciated, as I'm only writing this using voice to text and have trouble reading anything at the moment. Sorry I wasn't concise though! I tend to be long-winded when using voice to text!

Did you ask your doctor about this ? I know with vision therapy it can get worse if you go above your threshold which means that you would have to lower the number of repetitions. I haven't yet seen a neuroophtalmolgist yet. I wil on Wed. Maybe someone with more experience can comment on this.

Just curious, what kind of therapy are you doing specifically in relation to your light sensitivity?

Feel better.

Take care.

I am having the same problem
 

Hi,

I started with prism glasses and vision therapy a couple of weeks ago. I was

trying to space out the session and amounts but my eyes got worse. It was

suggested that I am doing too much and to back off.


I have not done anything but wear prism reading glasses 1- 1/2 hours per

day. I am not as bad.

On another occasion when I had my eyes checked, running some test for no

more than 1/2 hours I ended up with a migraine for 3 days. The neuro

opthomologist said that the testing must have hit on all the right areas for

me to react that way.


I was doing visual tracking, convergence exercise and gaze stabilization

exercises.

It could have been the testing that set you back and with everything it

takes a long time to recover.


I know I am looking for direction on what I should do next, my eyes have been

killing me.

Tomorrow I get my prism sunglasses.

Let me know how it goes.

Ask
 

Ask your therapist. You might be doing to much. That was me. I scaled back.
Su seb

DFayesMom,

I wonder if you may need to focus on moderating your symptoms rather than trying to eliminate them. The vision therapy sounds intense. Many therapists have an "I can fix this if the patient will just work hard and sacrifice enough" attitude. Maybe treating the visual issue with a moderate effort targeting improvements that allow you to find the sweet spot in effort where you can live without being overwhelmed by your symptoms. You may still experience symptoms but with work-arounds and such, you can minimize the stresses and triggers so your symptoms are manageable.

People appear focused on overcoming light sensitivity. I focus on skills to be functional and comfortable even though the light may still bother me. Recovery is not an all or nothing effort. It can go in stages. As I have said many times, there are NO quick fixes.

We don't have to overcome every symptom to recover to live our lives. My neuro was amazed at the intensity of my brain dysfunction yet the high level of function I can achieve. I will occasionally fall flat on my face as I trip over an ongoing symptom but I don't let the momentary failure define my life. I chalk it up to the injury, get up and move on.

I follow a blog of a TBI victim who refuses to accept that he has a new normal. He continually forces his life to fit the old normal. This appears to cause him great stress. He is continually focused on his struggles. This takes valuable energy from his day.

I have been doing landscape improvements to my yard. I could push through to get the job done. Instead, I am pacing myself and accomplishing small but complete steps. This can be very beneficial. We find reward and strength by these little accomplishments.

Whether it is learning to tolerate prism glasses or how to reduce the light that makes it into our brain, these are small but valuable accomplishments.

I am not trying to be critical of others efforts nor downplay the seriousness of their symptoms. I am just concerned that in some cases, there may be a risk of over treatment that never allows the person to rest. I know I need to work to moderate my life to find a manageable sweet spot. I am not symptoms free. I just am able to manage symptoms to usually keep them tolerable. I have bad days but with my years of experience, most of my bad days are behind me. The first few years were a roller coaster of miserableness.

This can't be my new normal
 

I have been dealing with these issues getting worse and worse for months now despite all my efforts to moderate my symptoms – no computer, limited iphone usage, hat and glasses at all times outside, sunglasses at all times inside. Now that I am where I am, I see that it was wrongheaded of me to continue my vision therapy.


My concern now is how do I get back to a level of pain that is manageable? What I am experiencing now is not. I'm just scared that this is my new normal, because it's too much. It's more than I can handle. I cannot minimize these symptoms, because the only thing that helps at all is having my eyes closed. I can't live the rest of my life with my eyes closed.


Right now, my husband is out of town and I'm the sole caretaker for our daughter. I'm supposed to drive 2 hoirs to visit my parents today, but I don't think I can do it. They said they would come pick us up tomorrow but I just don't know how to cope with this.

Driving
 

Driving two hours is almost always too much for me. I too hope that this is not my new normal. Once a month I need to drive 75 minutes and it is too much. Don't do it if you don't have to. It's not worth it.

I just keep trying more therapy. Now I'm trying healing touch. And learning more work arounds. I'm still waiting to see the neuro opthamologist in July. I completely understand how you feel. I was feeling good on Friday and I walked into a noisy busy restaurant and I felt like I was at disneyworld xfunhouse x 10. Couldn't stay there one minute.

Sometimes it's just helpful to know that someone else "gets it". Before this I was super woman and it took months for me to understand what was going on in my head. Hang in there. I'll be thinking of you!
Su seb

I'm sorry to hear about your backsliding. I suffered from extreme photophobia and eye strain for a very long time. I still have both symptoms, but they are VERY gradually improving. I expect that once your eyes are allowed to rest, you will gradually heal as well.

Like you, I did vision therapy and it did not help, though I did not experience the sorts of setbacks you are dealing with.

Here are some suggestions:

1. Ask your doctor if you can go on a muscle relaxer for the eye strain. I went on Flexeril 10 mg/day and it has helped my eye strain more than anything else I've done, by far.

2. Fill a sock with rice and heat it in the microwave. Apply heat to eyes and the back of the neck. This will help relieve tension and may help a bit with the eye strain.

3. If you can afford it, get massage therapy and have them focus on your neck and shoulders.

4. Download text-to-voice software. Natural Reader is free. Text Aloud has more features but costs money.

http://www.naturalreaders.com/download.php

5. Listen to audiobooks. If you can't afford to buy them, Librivox.org has free audiobooks for books that are in the public domain.

http://librivox.org/

6. See if you can get glasses tinted with FL-41. This tint filters out blue wavelengths and really helps me with my photophobia.

Feel free to send me a PM if you have any specific questions or would like to discuss this further.

I have prism lenses and do daily vision exercises coupled with weekly sessions at the Binocular Clinic.

The first 2-3 months my pain was intolerable, often triggering migraines. I took tramadol for the migraines, and sometimes I had vertigo with migraines. No fun.

I was told to work towards threshold, but not to put myself in pain. I would ice, take advil and rest my eyes to manage the pain.

Now in month 5, I have tapered off from daily to three times a week exercises. I need to drive my sons around, and I couldn't with daily exercises.

Then two weeks ago, my son was in the hospital with a bacterial infection and a good friend passed away from metastatised breast cancer, so I took a two week break from all eye exercises and clinic.

Last week I went into the clinic after this long break, and I didn't have a migraine after the session! And I haven't had one doing my exercises!

For me, I have learned to not work too hard and not to worry too much. There are days when I only read and look at the computer for 1 hour total.

So I walk, bake, try to talk with my sons. If I don't rest my eyes, then, as Mark says, my symptoms flare.

What does your neuro-ophthalmologist say?

Neuro Op
 

He told me to stop doing the exercises, use a cold compress four times a day to reduce inflammation, and use eyedrops (like I don't already do that), on addition to just resting. I also made an appointment to see him next week.

I am also cutting back
 

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.

Vestibular and Vision therapy
 

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!

Update
 

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.

New Regiment
 

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.

Update
 

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!

I've had eye pain and eye strain for two years. For the stinging, I use Systane Ultra eye drops several times a day. The thing that has helped the most with the eye strain is Flexeril (a muscle relaxer). I've also gotten mild relief from massage and from applying heat to my eyes and neck. I keep a sock filled with rice that I microwave for a couple of minutes. It stays warm much longer than a hot washcloth.

I'm not sure whether vision therapy is for you. How long have you had the photophobia? Have you been to an optometrist or opthamologist?

I am with Xana
 

I got a lot of relief from my muscle relaxer valium(yes I know bad benzo in some ppl thoughts)But it was a must for me because I had muscle spasms all in the upper body,head,face,eye's etc.I tried every muscle relaxer before valium and had no luck.I also did heat/cold compressions.
I think also the adderral and vision therapy might not be a good mix.You might want to check into that.Wish you the best:)Mia

Eye pain
 

Maybe we could tie for worst eye strain EVER! Lol. I was wearing two pairs of sunglasses And a huge hat too. I didn't care how i looked! When I was at home, I just laid there with a towel over my head but still managed to play with my daughter. She's only two, so thankfully she was okay with this new, headless version of mommy!

It's good to know you have been recovering. I'm staring to accept that I will live if i don't get back to 100% but I'll keep trying. I will try the rice in a sock method, so thanks for that suggestion. As for the flexerill, I take that too, but only occasionally at night. Usually I take it for migraines or occasional neck pain, but at my worst with the eye pain, I took it just to be able to sleep. I can't take it during the day. I'm a lightweight. It knocks me out!

Yesterday, I was terrified I'd set myself back again and was so relieved when I realized it was just a migraine! I tend to get migraines when I don't sleep enough. I should definitely change my siggy from saying I'm headache free. That's not at all accurate anymore!