[Anonymous]

#1091500

Hi GabbieGirl:

I’ve also noticed that pain in relation to TED is not often discussed on the boards, but yes, I did (and still do, to a lesser extent) have pain in my eyes because of the stiff muscles surrounding the eyeball. For the most part it doesn’t hurt if I keep my eyes centered, but does ache when I move them to look up/down and to the sides. To me, it actually feels a bit like when you work out too much in the gym and are sore the next day, albeit sharper and more focused for being concentrated on a smaller area. On the bad days, the eyes throb from the aches even when they are centered and sometimes bring on a migraine.

For relief, I had used cold and hot compresses in the past which did help. Sometimes taking a hot shower and letting the hot water run on my closed eyes helped too, as did holding my face over a sinkful of hot water and letting the steam bask my face. Plus, it’s good for the skin! My doctor did eventually prescribe a painkiller which I took every once in a while, just half a tab. That, of course, helped better than my home methods.

The best help in relieving the eye pain was orbital radiation, which I finished not too long ago. I have almost no pain whatsoever looking up now, and about half of what I had before in looking in other directions. I’m really, really glad I did the radiation.

Hope this helps! Good luck,
Musicalita

[Anonymous]

#1091501

Thanks Musicalita,

I have not tried the hot steam and hot water before I will certainly give this a try. As with yourself I get the migraine headache when my eyes get this bad. I have not had radiation, but my doctor says that is the next step. At this point fearing the radiation is beginning to seem exciting.

Thanks again for your help.

Gabbie

[Anonymous]

#1091502

Musicilita,

I was wondering if your eyes protrude or if they just hurt you. Does orbital radiation help with the eyes going back into the socket or just the pain. I know orbital decompression puts them back into the socket. What kind of a doctor are you seeing for the orbital radition. A Opthamologist. Please advise I am very curious. Thanks for much. Donna

[Anonymous]

#1091503

Hi Donna,

My eyes never protruded that much with my TED, at least not so much that others who didn’t know me could tell. If you look at pictures of me from before, you can tell that my eyes are *slightly* more buggy, but it wasn’t ever that bad. I also had a bit of puffy eyelids and redness, but that’s about it. So, even though I wasn’t affected too badly from a cosmetic standpoint, I still had pain.

To answer your question, I actually don’t know if orbital radiation dramatically helps the eyes to settle back into the sockets for those with VERY noticeable proptusis. Perhaps this is one for the facilitators to answer? In my own case, a couple of weeks after the radiation, my eye doctor measured my eyes and found that both of them were not sticking out so much anymore. Since I closely monitor how my eyes look in the mirror, I could myself tell that my eyes seemed less swollen and red. So for me, radiation DID help with the slight cosmetic changes in my appearance, and more tellingly, the pain. I still have a ways to go and it’s only been a few weeks since I finished the radiation, but I’m heartily cheered by the results, I tell you!

Also, I saw a second doctor for the actual orbital radiation, but one who was directly referred to me by my primary eye doctor, my opthalmalogist. Actually, they are good friends so I really felt like I was in good hands because they coordinated the treatments together. The second doctor was a radiologist who sees all kinds of illnesses that are treated with radiation. I actually got my orbital radiation treatments at the local cancer center, so I would wait in the waiting room with all kinds of people with illnesses even more serious than what we have, believe it or not.

Hope this helps! Good health to all,
Musicalita

[Anonymous]

#1025457

Perhaps people with TED do experience pain with TED, but I do not remember reading much about this on the board. Lately I have been experiencing much more discomfort with movement of the eyes (any direction). This weekend I spent much of the time with my eyes closed and most of the time with ice packs. I am curious if many of you with TED experience this problem and if so do you have any suggestions that might give comfort.

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