[Ski]

#1070080

I think there is a chance your double vision could eventually go away on its own. At this point, it sounds as if you’re in the "hot phase" of TED, meaning your symptoms increase and decrease kind of randomly. That makes it much harder to manage double vision ~ there are "stickon" prisms you can put on your glasses that refocus the light to where your eye really is (the cause of double vision for most TED patients is that one muscle is more swollen, which keeps the eyes from "tracking" properly and gives you two images), but that only works if your eye stays there. During the hot phase, the muscles can swell and recede randomly, plus you can find different muscles reacting at different times, so the actual doubling might change ~ changing from a left/right double to up/down, or changing the distance between the two images.

After the hot phase is over, once you’ve hit the cold phase, you may find that the swelling recedes sufficiently to allow your eyes to track together again. If your doctor doesn’t see the need for prednisone or radiation right now, then hopefully your proptosis (bulging) is not all that severe, and that bodes well for your future. Still, this interim time is VERY frustrating. If you’re willing to try prisms, definitely go for the stick-on kind (there are others you can actually have "ground in" to your prescription), and see if they help you. If they do, then hopefully you can continue changing the placement of the prisms as necessary so you can see correctly.

If it’s worse in the morning, you may have some fluid "pooling" in your muscles as you sleep. Try elevating the head of your bed so gravity helps the fluid drain during the night, or at least keeps it from collecting. It’s easier to raise the head of your bed than use a pile of pillows, because a pile of pillows can create new stress points as your body bends to rise with the pillow tower, and you can fall off of them in the night. If the actual head of the bed is elevated, you’ll always be elevated. We have "chunks" of 4x4s under the feet of the frame. I didn’t have double vision, but I had a lot of puffiness around my eyes, and it kept it to a minimum. As a bonus, it cured my husband’s middle-of-the-night heartburn. Go figure… ” title=”Wink” /> We keep it that way still.

I hope that helps! Let us know how it’s going.

[lakeview]

#1019206

Hi all,
I have had double vision in the mornings for a couple of months now… and now it seems to be happening for a longer period. I am wondering if there is hope – without surgery… I do have an opthamologist.. however, he would like to avoid sterioids and radiation at this point.
I guess my question is… has anyone had double vision in the active stage of TED … which eventually went away on its own?

I am increasingly feeling fearful as to what is around the corner.. with my eyes .. and am looking for a little positive inspiration.

Thanks
Lakeview

[lizlair]

#1070081

Your double vision may improve in the next several months. One of the early symptoms of my TED was double vision, especially in the evenings. At times, it was so bad that I could not drive, read, watch TV or work on the computer. I discussed prisms with the opthamologist and decided against their use. Elevating the head did seem to help as well as making sure that you keep the eyes really hydrated with preservative free drops and gels. In the past few months, I have (finally) entered a cold phase and the double vision has somewhat subsided.

Just hang in there and know that you are not alone. The double vision is probably one of the more frustrating elements of TED. If it does not improve, I would suggest talking with eye doctor who specializes in TED.

[Bobbi]

#1070082

Yes, I had double vision as a part of TED, and it went away without steroids or surgery. I still get it when I am particularly fatigued, but it is no longer a common occurance.

Our doctors weigh the risks of steroids and surgery against the knowledge that once the active phase of TED is over there is, typically, a remitting of symptoms. How much symptoms remit depends in large part on how much damage was done while TED was in the active phase. So that is why ophthamologists tend to wait, and watch, even though it can be maddening for those of us who are experiencing the changes and are scared of the potential problems. I sought a second opinion part way through my experience, just to make sure that waiting was the appropriate choice.

Bobbi — Online Faciliator

[Sue_Conard]

#1070083

Hello Bobbi!! The TED has been the MOST FRUSTRATING part for me. I enjoy beading/scrapbooking & that’s been taken away from me unless I use a magnifying glass and bright light. Last August I wrecked my husband’s car b/c it was early on and I didn’t understand what was going on until I started having, what I describe, as "blackness". It was like someone pulled a shade down over my one eye and that’s when I ended up going for 2 rounds of IV infusions of Solumedrol and ended up in radiation. I was very afraid of losing my vision and opted for the treatment. Since my radiation treatment in Feb. 09, my vision has been coming and going, quite like yours is now. I was blessed to find an opthamologist in my area that studies/researches GD and he keeps me on a very close watch & see monthly appt. where he measures my eyes. Best of luck with your choices…I found with GD, it’s very individual and you just never know when it’s going to rear it’s ugly head with symptoms. I had breast cancer 4 yrs. ago and told my Endo that I would take THAT DISEASE back tomorrow with the chemotherapy, etc. over GD. He told me it was a very strong statement, but that’s the way I FEEL, EVERY DAY.

[lakeview]

#1070084

Thanks everyone – I really appreciate your posts – guess I just have to hang in there and wait for the worst to pass. I am worried that I may have to take a leave from work since I am wondering how I am going to get through the day with this.. it is all really scarey.
Has anyone ever used Botox or steroid injections into the eye – is that relatively new – do we have any information on this?
thanks

[Sue_Conard]

#1070085

Just so you know, I almost went out of work too on a short leave of absence; however, invested in the prism glasses and it’s allowed me the freedom of driving safely back and forth to work. My vision insurance PAID everything; however, I’ve not had the prism replaced yet and my vision is still changing. The GD dr. just tells me I’m "unstable" (imagine THAT statement… )…so I sit and wait for the day I can be "stable" again!!

[Jake_George]

#1070086

Being unstable is a state of mind. Okey just kidding.

Ground in prisms are by far the best way to go for helping with double vision. In my hot phase my prisms changed a few times a year. I went to an eyeglass chain that offered free replacement lenses if your prescription changed within a year. I kept my old lenses. Because sometimes I needed to go back to a previous prisim. Then I could swap out the lense myself and be able to see.

It was kind of funny, I had four different lenses with different prisms in my brief case. When things got out of whack I would swap them out until the double vision went away. Of course I did this with my eye doctor’s knowledge.

But in the long run while in my hot phase getting replacment lenses were free and I had the ability to make minor changes myself.

Give it time and keep your eye doctor informed. We are only a click away.

[Ski]

#1070087

There was a doctor at our conference last October who talked about steroid injections for the swelling ~ in this particular method, it is injected into the fluid BEHIND the eye, kind of "bathing" the tissues in it so all the swollen tissues can get some relief. They go in through the "blank space," be it ever so small, between the eye and the orbital bone, so there’s no "needle prick," the syringe is emptied into the fluid. It’s a tricky procedure (obviously) but he said they’d had some good results. As always though, steroids carry their own side effects, so the benefits/risks need to be weighed very carefully.

There was also talk about Botox, but not in significant detail. There had been some good results, typically for those who are in early-stage TED, and with small variances (small differences in eye tracking creating the double vision). If that describes you, sounds like it’s a possibility for you.

Just make sure you’re talking to a doctor who has had experience administering these treatments, and get ALL of your questions answered before going ahead.

[lakeview]

#1070088

Just want to say thank you again for your responses. –Jake how long did it take for things to normalize for you?
All the best,
Lakeview

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