[shasha]

#1059501

Hello all,

I have TED – symptoms began in July – started treatment for hyper in August. I have had a difficult time with meds, had to discontinue Methimazole, even though it was very effective in controlling hyper, in October after 3 adjustments to dosage because of severe side effects. Started PTU on November 1. I am tolerating the PTU at a dosage of 50mg morning and 50mg night. However, I have not had labs yet to see if it is working so I don’t know if this new issue is being caused by hyper/increase of antibodies or if it’s a natural progression of enlarged stiff musculature of the eye.
Last week, the double vision caused by my protruding left eye increased in severity so much that I can no longer focus at all. A trip to my eye doctor was not helpful – he is saying there is no “inflammation” just muscle stiffness that won’t allow me to focus and that I will need surgery to correct that in the future.
Today I woke up to a left eye that will no longer look straight ahead or up at all. I can’t focus on anything with both eyes open. I have a job and responsibilities and work in an environment where I need both my eyes. I read this morning online that there are exercises you can do to “stretch” the eye muscles and it can help with gaze and focusing issues. Has anyone here had any experience with these exercises?
I am currently without insurance and I won’t be having surgery anytime soon. I would like to be doing something to try to improve my vision. Any advice or comments would be greatly appreciated!
Thanks,

[Bobbi]

#1175166

An immediate solution, Sasha, at least for your work issues, would be to use a patch on one of your eyes. Be careful to alternate the patched eye, to protect them from weakening. But with one eye patched, you will not have double vision. With one eye patched you will lose depth perception, so be very careful. I scraped the side of my car badly while practicing driving (in my driveway) with an eye patched.

I cannot give you any information about exercises for the eyes. But perhaps someone else here would know.

Basically, though, when we have TED, the muscles become stiff and enlarged, and no longer work together well to provide single vision. There is a period of time when the condition worsens. We call that here the “hot” phase of the disease, and it can last anywhere from 18 months to 3 years on average. During this time our opthamologists do little or nothing to intervene because the treatments at their disposal have potentially huge adverse side effects. That said, you should be monitored rather regularly while the worsening is going on because if your vision itself gets threatened the doctors do intervene.

After the hot phase ends, there is a period of time when the symptoms improve over time. Your eye issues may never go back to their normal condition, pre-Graves, pre-TED, but they can improve. This is another reason our eye doctors prefer to wait, if possible, before any surgical intervention is tried. If surgeries happen too soon, they might over-correct for the ultimate eye condition that remains, causing yet another problem, not a solution.

Sometimes it is helpful to elevate the head of the bed (use boards or bricks under the head of the bed) slightly. Sleeping on a slight slant can help prevent morning swelling of the eye muscles. But don’t just raise your head off the bed with pillows: that could throw your back out.

[PattiMeg]

#1175167

Sasha,
I am so sorry to hear of your difficulties. I can sense the anxiety you have about your job and the fact that while this awful disease runs its course you have to get up and go to work every day! I developed TED last summer and had bilateral lid surgery in April of this year since my eyes had pretty much swollen shut. The neuro-opthomalogist who did the surgery said I was in the “cold” phase and that surgery was appropriate. Well, 8 months out, my lids are still swollen, I have developed double vision and my eyes can hardly move. Obviously (to me) the surgery was premature. This same surgeon is now quick to do an OD. I got a 2nd opinion and this 2nd doc is awesome. He says the disease is NOT in remission and that, unless my optic nerve is at risk (which it is not), we should do our best to treat the symptoms and save the surgery as a last resort. He put me on a 4 week course of steroids which has improved things significantly.
I wanted to respond specifically to your question about eye exercises. My lids are no longer closing after the lid surgery; I am taping them shut at night and it really helps with the dryness. But what I do every morning before work is, I spend 20-30 minutes doing mindfulness meditation; listening to beautiful music, breathing, and part of the time I do a gentle massage around my eyes, focusing on the lower lids to gently stretch them, and a gentle massage of the tops and corners of my eyes. VERY gentle. I have no idea if it is “helping” or not. What it has helped is my spirit and my heart. It has calmed me and helped me to start the day with a positive open heart. I just started a new job and the stress is SO bad for our eyes! so I do this for myself every morning and it has made a world of difference in my anxiety about the future and how this disease will run its course.
So I offer this suggestion to you, and hope you know you are not alone in this trial . This site is such a gift to those of us who struggle with TED.
Patti

[snelsen]

#1175168

Sasha, I understand! the double vision changed my life forever! Not in a good way. I had to wait until (probably almost) the cold phase. My eyes were still changing, rather than stable, but I was so miserable (could not work and see the monitrs in the recovery room any more, all the numbers were upright and sideways. My muscles hurt a lot. the only way I could look with any ease was down at the floor. Yes, the muscles are swollen and fibroses. The elasticity is gone. It is my own experience that eye exercises made my life worse. There was no way I could move my eyes where they would not move. Good news is that strabimus surgery, down the road, really fixes this issue. In the meantime, steroids, which come with some risks of their own, did help me for a couple weeks, a little bit. The eye docs tried prisms. which help a lot of people with their double vision, but it did not help me.

My eyes do not close at night, and I have to tape them like Patti Meg. The bEST tape for this is Mepitac, which you have to order, and is expensive. I have not found any other options that are tolerable. And I still have trouble figuring out HOW to tape my eyes closed. But if I don’t, I pay a very heavy price for it.

I hope you can explore prisms, they have really helped a lot of people. Otherwise, to keep your job, I suggest the patch.
Best
Shirley

[shasha]

#1175169

PattiMeg – thank you for the suggestions and support. I’m very sorry you had to go through the surgery and not get the hoped for results – and I’m so glad that you have found a good doctor. I am going to definitely get knowledgeable about meditation. The spiritual side of life can get brushed aside in the stress and worry about getting through the next day. I hope things continue to improve for you and you find your way out of the maze soon! Your heartfelt message made me breathe a sigh of relief. This forum is a Godsend. Have a wonderful day and thanks again.

[shasha]

#1175170

Snelsen –
thanks so much for your reply. This forum truly helps put things in perspective. It is very encouraging to hear that the surgery can make the double vision better. Only my left eye has lost mobility at this point – both eyes are involved but left is much worse. My heart goes out to you – not being able to look up with one of my eyes, I can only imagine the frustration of both eyes gaze downward. I will certainly try the patch and will ask the opthalmologist about prisms. I have a sleep mask – but I’m taking it off in my sleep so the tape is probably next step. Thank you again – hope things get better and better for you. Have a lovely day. Sha.

[shasha]

#1175171

Bobbi-
Thank so much for all the good information. I have tried the eye patch and yes- depth perception is certainly an issue. It does work though. I can only patch the left one now though since the left one only looks downward and cants everything to the left if right eye is covered. I am trying to get in to see a new opthalmologist that knows more about TED. It will be a couple of weeks getting in. I should have lab results in a couple of days and at least ill know if I’m hyper again or this is just progression due to stiffening of the muscle. Thanks for the kind words and support. I hope to return the favor to others when I learn a bit more. Have a wonderful day.
Sha

[PattiMeg]

#1175172

Hi guys,
One more comment about the eye taping at night – I found these eye “bandages” at CVS that look like regular bandages but they conform to the shape of the eye and its socket and they fit really well; they provide a good seal and they stay on whether I lay on my back or my side. Shirley, don’t know how much the tape you suggested cost, but these bandages are relatively inexpensive and I find I can get 2 nights out of them. So for me, the bandages have been working. I just started covering my eyes 2 weeks ago and boy what a difference in my eye symptoms, both during the night and upon waking. I really resisted it for awhile ,the first few nights I had a good cry before I put them on, and now it is second nature. Isn’t it amazing how we make adjustments where we have to and just keep on going? a testimony to the strength of the human spirit.
Patti

[snelsen]

#1175173

PattiMeg,

WOW!! Thank you for telling me that! I don’t think we have CVS in Seattle world, but I will check. I tend to go to my local pharmacy, but I will also check Rite Aide and Walgren’s. THanks so much.
Yes, I was VERY resistant to taping eyes closed at night. but it makes such a wonderful difference, that I am resigned to it now, works pretty well.
The Mepitac take is approx. $19/roll. I use the tapes two nights, seems to last a long time. I usually get the narrow tape, but just spoke with someone who says the wider works better.
Shirley

[fairyslipper]

#1175174

I have very severe diplopia which is no longer correctable by ground in prisms or even a combination of my ground in prisms with stick on Fresnel prisms together. I also have very severe proptosis (31 on the ophthamometer readings) so patching one eye did not work with trials of several types of occluders. I tried the kind of patches that are like a pirate patch that go over your eye and have an elastic band around your head but my eye is so proptotic that my eye rubbed on the patch, even though it had kind of a pyramid like dome shape. Also I couldn’t wear my glasses with that type of occluder and absolutely need my glasses for the unpatched eye because I need the progressive lenses to see at near, medium and far. I also tried the kind of occluders that clip onto your glasses. That also didn’t work because I already have trouble with my eyes touching the lenses on my glasses. I have to clean the lenses on my glasses about 50 times a day because my eye rubs on the inside of the lense and gets a big smudge plus I get a funny little droplet pattern of tears that dries on the inside of the lenses from the constant tearing. Anything even slightly touching my eyes makes the tearing dramatically increase, so patches and occluders don’t work.

My 93 year old Mom has Myasthenia Gravis and she suffered from double vision for sixty years. Now she has macular degeneration and is legally blind so no longer has enough vision to experience the diplopia. After years of struggling with all kinds of patching and occluders, she finally learned a few years before she lost her vision about putting frosted Scotch Magic Tape on the inside of one lense in her glasses. So that is what I do. You can do it with your regular glasses if you wear glasses, or with either regular sunglasses if you don’t wear glasses, or fitover or clip on sunglasses if you do wear glasses. Or if you don’t need any correction, you could get a pair of regular glasses with no prescription in the lenses to wear with the frosted tape in one lense just for the purpose of occluding one lense so you don’t have the double vision.

This is the only type of occlusion that works for me right now. I already have a terrible time with my glasses slipping down on my nose. I see an optometrist and optician who are very outstanding. The optician explained to me that he had to make the temple pieces the length they are to minimize my eyes touching the lenses of my glasses as much as possible. I am hoping my upcoming orbital decompression surgeries will reduce the proptosis enough that I can get new glasses that will not slide down on my nose.

One little benefit of the Scotch Magic Tape method is that I don’t have to clean that side of my glasses 50 times a day like the other side, because you can’t see smudges or dried tears on that side.

Unfortunately I can only occlude my right eye which is the more severely affected one, because my visual acuity in that eye is so poor that if I alternated and patched my left eye, I couldn’t see well enough from my right eye to do anything. With my right eye, I see images way up in the sky and off to the right, and also everything going on with the muscles and proptosis in that eye makes my vision blurry at all distances.

Prisms, initially the stick on Fresnel type and then for years prisms ground into the lenses of my glasses worked for me, so maybe they would for you. I even had a few years when I didn’t need much if any prisms, but this latest flare up just kept progressing and progressing to the severe state I am now in. I have had Grave’s Disease for 40 years and the Grave’s eye disease for at least 17 years.

[Kimberly]

#1175175

@fairyslipper – thank you for sharing your story! Have your doctors spoken to you about surgical options? Once your symptoms stabilize, there are different surgeries that can correct the bulging and the double vision.

You mentioned that you were currently in a “severe” state, but I wasn’t sure how long you had been there.

Take care — and please keep us posted on how you are doing!

[shasha]

#1175176

Hello Fairyslipper – Sorry for taking so long to reply – I can’t tell you what a difference your suggestion about the scotch tape made for me. I was able to drive quite well with the tape over the inside of my left lens. Now however, my eye seems to be protruding so much further that it’s bumping my glasses even with them pushed out as far as they can go. I also can no longer see out of the left eye alone well at all – just a blur. When this first started I could see pretty well out of each eye independently, just unable to focus them together – now I can only “see” out of the right eye, although I do experience less loss of depth perception if I keep the left eye open but blocked from the field of vision. I’m having the same issues with my eye rubbing on the inside of the “pirate patch”. Thanks again very much for giving me a couple of months of freedom. If I come up with anything new that can help I will be certain to let you know as well.
Thanks again – shasha

[Kimberly]

#1175177

@shasha – Did you ever find a doc who would work with you on your eye issues? Although dealing with thyroid eye disease is very much “watch and wait” in the early stages, there is a surgical intervention that can be done immediately in patients who are losing vision.

This is a good site that has referrals for eye surgeons:

http://www.asoprs.org/i4a/pages/index.cfm?pageid=3504

(Note on links: if you click directly on the above link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

The “Find a Surgeon” link is towards the top center of the screen.

Although this site is specifically for surgeons, the members of this association generally have more knowledge of Graves’ and thyroid eye disease than other eye docs. It would be really helpful if you could get in to see one of these docs for an evaluation.

Take care!

[LauraMyles]

#1175178

I was diagnosed with Graves Disease 3 years ago after waking up from a Brain aneurysm. I did the iodine treatment to kill thyroid and everything was going good until about 3 months ago. I went through a stressful situation and my thyroid went crazy. My Endocrinologist lowered Synthroid and told me to see an ophthalmologist. The moment the ophthalmologist looked at me he said I needing surgery. I redid blood work and Endocrinologist has stopped the Synthroid completely. Now I am suppose to meet with an Ear/Nose/Throat surgeon who will work with ophthalmologist to do surgery.

I keep reading that my Thyroid should be under control before surgery. My doctors are not saying this to me. I am really nervous and confused.

Any information would be greatly appreciated.

[catstuart7]

#1175179

Hi Laura, it sounds like you are going through a really intense time. You deserve to have your doctors explain what’s going on so you understand and can make decisions. Has your endo shared your lab values with you? Did your ophthalmologist explain why you need surgery so urgently? You might want to start a new thread about your situation so the most others can see it more easily. There are a few people on this board who have had the eye surgeries can advise way better than me. Please take care and remember you have the right to be informed!

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