[scanders]

#1060378

So, I already have the constant double vision and use a Fresnel prism, in fact I just got a different one a few weeks ago for worsening double vision. But the inflammatory symptoms of redness, grittiness, chemosis, and general discomfort seemed to be better for the last several weeks. I was cautiously optimistic that perhaps I was approaching the end of the hot phase (although I realize now probably not with the double vision still changing so recently.) Then a few days ago the redness came back with a vengeance (hard to distinguish the iris in one eye, it was so red) and both eyes hurt. I thought maybe “pink eye”. MD said symptoms didn’t really fit that. Told me to keep up with the lubricating eye drops. In 2 days they’re much better, but still a little pink and gritty, and they don’t seem to focus quite right yet. I guess it’s just a flare up or something, but clearly I’m not done with the active part yet. I am disappointed, and frustrated. Yet, I feel guilty for whining, knowing that many people have had this much worse. I’m mostly inconvenienced by the double vision, trying to figure out how to go from close up to distance. It certainly makes my job more challenging, but I can still do it. (So far my best solution is a pair of readers with tape on one lens for close up, and the prism for distance.) That’s the venting part.

Now for solution mode, if there is one. Any ideas what triggers that type of flare up? Or is it just random? The only variables I see for me are I had a cold this week, although not too bad, and they had me stop the beta blocker on Monday, since I no longer seemed to be having palpitations. I think my heart rate is already creeping up, and I wonder if I’m getting a bit hyper. But if TED runs a separate course from the Graves, that wouldn’t really matter, would it? I’d really like to avoid a replay of this week, if possible, and I’m still trying to figure this stuff out. Thanks for listening!

[Kimberly]

#1182299

Hello – TED symptoms can come and go for reasons that aren’t well understood, although I did hear one presenter at our San Diego 2012 conference say that she believed stress to be a factor. Her comments were in regards to TED being reactivated after someone has gone all the way through to the cold phase – but it would make sense for stress to have an impact in the active phase as well.

[scanders]

#1182300

Thanks for that reminder about stress. In reflection, my work days have crept back into the 10-12 hour range again over the past several weeks. Hardly seems fair, since some of that job stress is from working through the eye disease, and the stress could be making the eye disease, and the Graves in general, worse. Sigh…

[npatterson]

#1182301

Hello, and welcome to the frustrating world of thyroid eye disease. As you have figured out, it is pretty random. The [separate] antibodies are easily triggered, and mostly unpredictable. Part of what you are describing is related to eye strain and dryness [=”stress”]. We need enough light to see, but not so bright that it produces a glare; long hours at a computer when we are already not blinking enough, the change to Daylight Savings Time so that we are driving to, or from , work with more glare. It is a constant challenge to keep ahead of things. I actually have a small humidifier on my desk (which drives the IT guys nuts), and sometimes have the alarm on my phone set for every 15 minutes to remind me to use eye drops (you would think we would remember…not so much!).

The double vision is on its’ own course. The dryness, grittiness, etc., is usually one result of dry eyes–and we literally can’t see THROUGH our eyes. It is not that our vision itself has changed, but our corneas are scratched. (Think of badly scratched lenses on glasses. Thank goodness eye tissue heals itself quickly.

Are your eyes closing at night? That’s when we need someone who can look at us with our eyes closed and tell us if they are shut all the way. If not, you need to look at taping or patching them. Both Shirley and I are on the marketing committee for MEPITAC tape.

I hope things “cool off” for you soon, but whether or not it is soon, it WILL cool off.

Take care,

Nancy

[scanders]

#1182302

Thanks Nancy! That makes sense. I hadn’t realized dry eye could cause that extreme of a reaction. I have a small humidifier on my desk (IT doesn’t know about it), I can turn off the overhead light and use a lamp when I need to (they’ve even taken a bulb out of the fluorescent light to accommodate me), and I’ll set the alarm to drop a little more frequently. (I was seriously scary-looking–a toddler I know was coming over to high-five. When he got close he looked at me, stopped, and ran back to his mom, crying.)

My eyes don’t close at night, one more so than the other. The eye doctor hadn’t mentioned taping, although he told me my eyes don’t close all the way. I put lubricating ointment in at night, as he suggested, but in spite of that I’ve been waking up with scratchy eyes in the night lately. Guess I’ll be looking up Mepitac tape, and how to tape an eye shut.

Thanks again! This group is a wonderful resource!

Christy

[npatterson]

#1182303

Cindy,

Does your eye doctor see a lot of Graves’ patients? It seems strange that taping hasn’t been mentioned. Another thing you can do is to find a good pair of swim goggles to sleep in. Not really comfortable (not at all comfortable), but they work. AQUASHURE is one brand. They are at big sporting stores.

I order my MEPITAC from Mercy Surgical 800-637-2950. #2983000 is the 3/4″ tape. It is a silicone tape, and doesn’t rip your skin. I cut the entire box into 2 1/4″ strips. I remove the backing, and put one piece on the back of each hand. I put the goop in my eyes, and go to bed. Once I am in the bed, the tape goes on my face.

Put one end over the middle of your eyebrow, push your cheek up (which will close your eye, and anchor the other end on your cheek. If you will put the palms of your hands over your eyes, the heat from them will help make the tape stick even better.

If I am not using the goop (the lubricant of the day), the tape can be taken off the next morning, the end taped to the mirror, and re-used the next night. That was one of the medical advantages of the silicone tape…it can be removed, the IV (or whatever) adjusted, and re-attached. That means you can lift the bottom up when you have to get up during the night, and re-anchor it when you go back to bed.

The tape is soft enough that it only takes a few minutes to forget that it is there, and you can sleep comfortably. Not very sexy, but great in every other way.

Take care,

Nancy

[snelsen]

#1182304

Hi Christy!!
I think we have had an equivalent experience with TED. I know I have written before about this,but do order some Mepitac and try taping that one eye closed. I think it will really help you with the comfort of that eye, and you are at less risk for a corneal abrasion…which is the last darn thing we need. i think that I will be needing to do this the rest of my life. At least this tape makes it pain free to remove it.
Shirley

[scanders]

#1182305

I woke up wimpering last night from eye pain. (I usually have a pretty high pain tolerance.) Not the first time this has happened, though, but one of the worst. I’ll try taping my eye. Mepitac tape sounds great, but I’ll have to wait for it to come. In the meantime, perusing the local drugstore, I saw some Nexcare sensitive skin low trauma tape. Have any of you tried this? At this point, I’m not sure pain from tape removal could be much worse than the eye pain from my exposed eye in the short term? Or am I wrong about that?

[snelsen]

#1182306

worth a try, scanners! i know exactly what you are talking about.
I also purchased stuff from the Dry Eye Zone website, some goggles and things. they were to help eyes stay closed. Other people said they helped a lot. If you PM me, give me your email address, I will take a pic of what I am talking about.

[snelsen]

#1182307

I mean…scanners!!

[scanders]

#1182308

This Nexcare tape seems to work well. It’s soft and comfortable, can be repositioned and reused, and didn’t leave residue or a mark. It’s blue, but that doesn’t matter for what I’m using it for. (And it’s less than $6 for 4 yards.)

So my eye is happier in the morning from a moisture standpoint, but I can’t move my eye without “discomfort” (I mean, it just doesn’t want to move.) Is that just the muscles getting stiff during the night? It seems to get better as the day goes on, but it takes longer in the morning to be able to focus well enough to drive. Is that stiffness a normal result of taping? I think I’m doing it right. Just needing reassurance.

Thanks.

[Kimberly]

#1182309

Hello – Hopefully, those who have experience with taping will chime in, but perhaps swelling is a factor? I do keep my head elevated at night, and I still find that my eyes are most swollen first thing in the morning.

[Author]

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