Thyroid eye disease (TED) my eyes do not close when I sleep

[shirley]

I am new to this site. I would like to think that this is not a permanent condition the rest of my life. But it might be. In the meantime, I would like to hear of the best way to protect my eyes when I sleep. Both upper and lower lids are retracted. I have had surgical procedures to correct this, but they have not helped.

Suggestions? I am using Medipac tape now. It is very expensive.
Shirley

[Rebecca Petris]

Hi Shirley and welcome.

There's two approaches to the night protection situation:

1) Find a strategy to seal the lids shut. Tape works well (but is not ideal). Tranquileyes can work quite well depending how you sleep - but you need to be cautious with Tranquileyes depending on how much the lid opening is as I've known one or two people to get abrasions from the foam itself, so getting your dr. involved and making sure of the fit (e.g. tinkering with pad thickness to get just the right pressure to hold the lids closed). Sleep masks can work for some people but I wouldn't recommend them for most Graves disease situations (unless the type that vaults the eyes).

2) Create a moisture chamber over the eyes. Even without the lids held down many people with lagophthalmos get sufficient protection from a physical barrier over the eyes that holds in moisture and keeps out heat, a/c, dry air etc. This could be anything from squares of plastic wrap to the Quartz/Onyix type silicone shields or bubble eye bandage type products.

Personally I tend to recommend Tranquileyes to start, with Quartz as a fallback solution unless there are special considerations (skin issues, stomach sleeper, etc) that rule these out. With Graves sometimes it's really necessary to have something rigid and securely fastened to prevent abrasions (like a post surgical goggle or bubble bandage), or sometimes tape becomes a long term solution and just a matter of finding the most appropriate tape.

[shirley]

Eyes do not close, TED

Hello Rebecca,
Thank you so much for your response. Quick question since I am new to the site. Should i repeat the original title when I respond to you? Or will it automatically appear?

I will try Tranquileyes first, as you suggested. My doctors have been disinterested in helping me with the problem. I have recently had two grafts from my hard palate to my lower lids, and both procedures were failures, with the lids as retracted as before the surgery. I discovered Mepitac tape on my own, but it is prohibitively expensive for a lifetime of use, and it was not ideal, as you have stated.

RE #2-I tried to google Quartz/Onyx, but got only hits about gemstones. Re the squares of plastic swap, how would the saran wrap stay on my eyes? I supposes with silicone shields or bubble eye bandage products that you mentioned,but I am so new to this, I am not familiar with them, either.

I am very grateful to you and to this site. Again, thank you! Now, next project today is to order tranquileyes. I'll be writing again.
Shirley

[Rebecca Petris]

Should i repeat the original title when I respond to you? Or will it automatically appear?

You don't need to type in a new title unless it's a new thread - but you can if you want (some people like to do this just to emphasize an answer or a new direction the discussion's going in).

My doctors have been disinterested in helping me with the problem. I have recently had two grafts from my hard palate to my lower lids, and both procedures were failures, with the lids as retracted as before the surgery.

Really sorry to hear that. Do you have a corneal specialist? - Very frustrating for you not to have those surgeries succeed.

When I used to tape sometimes, I used Micropore paper tape. None of the tapes are all that great but for me personally it was kinder to my skin than most others.

RE #2-I tried to google Quartz/Onyx, but got only hits about gemstones.

Here's a link to Quartz

how would the saran wrap stay on my eyes? I supposes with silicone shields or bubble eye bandage products that you mentioned,but I am so new to this, I am not familiar with them, either.

Really sticky brands like glad press n seal may stay on fine by themselves - you just cut a square and pat it down around the eye wear. You may want to have a look at the night protection section of my catalog (sorry it's a little out of date) - not trying to sell you stuff but just to give you an idea of what the options on the market are. There's a table (page 12) to help determine which things work for which situation.

[shanku]

Hi Shirley,
Welcome to this board. Sorry to hear about your condition and that eyelid surgeries was not helpful.

I have eyelid retraction, exposure keratitis, lagophthalmos and incomplete blinking although evaluation of Thyroid eye disease was negative.

For nighttime protection - this is want I currently use - Tranquileyes Goggles with Thermoeyes beads, lined with Saran or Glad press n seal wrap and hold this whole gear overnight with 2 pieces of tape that across my forehead to cheekbone ; First I take a square wrap and use it to line the Goggles and then insert the beads in it; This basically provides a combo of sealed moisture chamber while holding eyelids down. I use beads instead of pads as it is easy to clean everyday and those do not touch eyelids as much as the pads do. I also use a night time eye ointment.

For Daytime protection - am using a combination of scleral leneses, moisture chamber glasses and tear drops.

Are you using/considering any form daytime protection? I think that is also essential to provide round the clock protection.

Thanks and Good Luck!

[DryEyeRobyn]

I was diagnosed with Graves disease in the early 90's; had multiple eyelid surgeries as result; but unfortunately, my lids still retract.

My nightly ritual is to put a small amount of eye ointment in each eye; then I patch one eye with a "Coverlet Eye Occlusor" (eye patch with adhesive). These run about $6 per box; with 20 patches in a box. It's expensive; but the eye patch really keeps your eye closed all night and it comes off in the morning without hurting your skin. Plus, using one patch per night is sterile. Just using tape didn't work for me; it was uncomfortable.

I only patch one eye; the one that is really bad. My other eye; I use ointment and a sleep mask - and since I found this Message Board last week, I tried using the Saran Wrap trick for that eye! It really does stay on with the sleep mask. So thanks everyone for the saran wrap -- after I finish up with my eye patches, I may try this on both eyes.