[scanders]

#1060468

I think I’m just whiney because I’m so tired of TED. (And Graves. Endo told me last week I’m “complex”.) Apparently, per the strabismus doc, my eyes have “decreased motility”, and I can’t look up as well as I should be able to. (This is why a prism no longer works for the double vision.) So I’m finding myself with more and more chin tilt, just to see comfortably with my unoccluded eye, to the point where my neck is sore. This, in turn, causes me to be aware of it, so I lower my chin to ease my neck pain. But then I move my eyes more to look up to see things, and I get a headache. The recommendation, of course, is to take acetaminophen and keep my eyes lubricated. Doesn’t really help. Any other ideas? I would guess this is typical?

At work they had traded out my desktop system for a laptop shortly before I found out I had Graves. The good part (I think) is that I can look down instead of having to try to look up most of the time while at work, at least while doing desk work. (I worried for a bit early on that this may have made it worse, by not “making” my eyes look up. Both eye doctors I see have said it didn’t make it worse, and eye exercises wouldn’t help, either.) At home, I watch television on the set that is at eye level instead of the one that is up high (with the HD and DVR). Driving is pretty uncomfortable. Initially the correction from the prism helped enough that the chin tilt was minimal.

I think TED is making me depressed, in addition to whiney. I’ll see the eye doctor in two weeks, but I don’t think there’s anything else to be done just yet, unless there’s been some regression or something with my eyes and I can get back into a prism. I would guess that’s probably not likely. Yep, I think mostly I just needed to whine… I don’t know why, but it does help sometimes. I’ll try to be more positive in the morning. Thanks for having a place for venting when we need it.

[Raspberry]

#1182800

HUGS to you! You are going through some stuff as serious as it gets, you are no whiner to vent or ask for support! I don’t have any direct advice really other than to say TED is always listed as the most serious quality of life aspect of Graves – maybe it might help validate you (or depress you so be cautious) to read about others experiences with it and the long-term impact studies?

[Kimberly]

#1182801

Hello – Hopefully, others who have this same issue will jump in here.

One thought, though, would be to do some stretches with your neck/chin in the opposite direction anytime you have a few moments sitting at your computer or waiting in line.

Take care!

[scanders]

#1182802

Thanks for the encouragement! I think it all just leaves me feeling a little helpless sometimes–I’m not exactly known for my patience. But I know others have had it much worse, and eventually it will end and they’ll be able to fix me. I just need to remember that. Thanks again!

[gatorgirly]

#1182803

When my TED was at its worst, my employer was very accommodating. They removed the flourescent lights above my desk and let me use just a low-wattage desk lamp (which some days I never turned on) because I was so light-sensitive. They also offered me a glare-reducing filter for my screen, but I found that just lowering the brightness was enough. Would your employer be open to switching you back to a laptop if you explain to them what is going on with your eyes?

Wondering why you’re taking acetaminophen as opposed to ibuprofen. I was prescribed ibuprofen for TED pain because it is an anti-inflammatory. But eventually, I had to stop it altogether because of an ulcer. Maybe you can’t take NSAIDs either – just curious.

[scanders]

#1182804

I still have the laptop, thank goodness. But they got new chairs for us with a remodel that are a bit low, (we’re all tall, so not sure what they were thinking) so I sit on some cushions so I can look down at the screen. I’ve requested a new chair. The old one is gone. They’ve also removed half of the bulbs from the fluorescent overhead light, and I have a lamp. They also recognize there are some tasks requiring fine detail (depth perception) that I just can’t do right now. I’ve got a letter from my eye doctor stating why, and they’ve been OK with it. But, I have a new boss as of 2 days ago, and a new management company comes in August 1, so I hope they are as understanding as the current company.

I think they recommended acetaminophen because when I called and asked about it I was about a month out from my appointment, and I don’t think they’d want me taking an NSAID for that long. But I ended up taking naprosyn for my knee, anyway. At least my knee felt better. They just need to fix me.

[snelsen]

#1182805

Hi scanders!
Your workplace was a heck of a lot more accommodating than mine! And I was an RN working in an academic setting! I hope the new boss/management will work fine for you.

The strabismus doc saying that you have decreased motility is another way of saying that you have TED, and the muscles of your eyes are affected. Did ye indicate that?
They (muscles) get big and fat, don’t expand and contract like they used to do, and that is why you have trouble looking up. I could ONLY look down. Everything else was hell. I had one OD, orbital decompression, cause the enlarged muscles were pressing on my optic never. Have any of the docs suggested OD to you? If so, that should be done BEFORE the strabismus surgery. The OD is a much bigger deal, and has a much longer recovery period. Generally, they are done for the reason I hd, and/or for bulging eyes, thus having unprotected corneas, and eyelids that won’t close over them. I JUST had a consult at Harborview in Seattle this morning, trying to decide whether to have my other eye done, cause that eye won’t close, I have to tape it closed at night. But decide to continue doing this. If you read around the forum, you can find lots of descriptions of this experience.
Shirley

[scanders]

#1182806

Hi Shirley,

Yes, it’s been explained about the muscles. In April I was told they didn’t think I’d need OD, although they would continue to monitor. In May I saw the Strabismus doc, who is sending me back to first eye doc (oculoplastic surgeon) for re eval for OD, especially of right eye. There are not any indicators at this point of optic neuropathy. Just a lot of bulging. (I tape it closed at night.) I’ll see him in a few weeks. I don’t want OD (like you said, it’s a bigger deal), but will do it if that’s what’s needed. My goal is to get to the muscle surgery.

I’m an RN in management, and have been lucky so far with corporate being understanding. I just can’t help my nurses out on the floor with certain tasks just now. No depth perception. I had this little spot for a while where I could see single looking down without any glasses, patches, or prisms. That spot’s gone now. Nothing that’s not double. Sigh… While this isn’t technically a “disability” per the ADAAA, as it shouldn’t be permanent, my company still tries to accommodate. And yes, I’m hoping the new company does the same.

Best of luck to you with your decision about your other eye!

[PattiMeg]

#1182807

Hi Shirley!
I know you are still struggling with the one eye not closing; if you read some of my other posts you’ll remember I had the same issue. In December 2013 I had bilateral lower lid retraction surgery and the doctor used bovine collagen as the muscle replacement material. I have seen a significant improvement in my eye discomfort and dryness; also the terrible light sensitivity has improved significantly. Last weekend, I rode on the back of a jet ski – I had no eye protection on at all, we were flying thru the water at 50 mph and I had no eye discomfort at all! it was then that I realized what a good job this surgeon had done. I know you are burnt out from all the surgeries, counting the one in December I have had 4, and I hope I am done for awhile. I have pretty severe double vision but the prisms work pretty well for me – at some point down the road I will have the strabismus surgery but not anytime soon.
So I wish you well in whatever decision you make. The last 4 years have been TED hell, I am leaving on Friday to go hiking in the Italian Alps because I am finally getting my groove back!! Best to all of you on this forum.
Patti

[Kimberly]

#1182808

@Shirley – Hope that the consult was helpful for you…after all that you’ve been through, you certainly deserve some relief!!

@PattiMeg – What a great success story! The next GDATF newsletter just went to the printer, but if you have pics of your adventures, that would be an awesome addition for the next issue! Or feel free to post on social media using #greaterthangraves!

[scanders]

#1182809

Patti Meg–4 years?! I’m so glad it’s finally better for you! But 4 years?! I’ve been wondering how long this has to go on, and hoping it wouldn’t be much longer. I think I read the average is 6 months to 2 years. I did read it could be active for up to 5 years. I might be coming back to you asking how you coped with it all for so long. I’m only at 10 months since official diagnosis, but looking back, had TED symptoms for at least 6 months prior to Graves symptoms. And you still have double vision? I want to be rid of the double vision so badly. (Oh-oh, I’m whining again. Sorry.)

[PattiMeg]

#1182810

Hi Scanders – yes, 4 years ago in Feb 2010 I had the RAI, then started to develop swelling of the upper and lower lids in the summer. The eye soreness and dryness continued to get worse, but the double vision didn’t start until the Fall of 2012. I did a round of steroids to get the swelling and pressure under control, but the eye doc said we needed to wait 1 year with no disease progression to make sure the disease was in remission before he would repair the eyelid retraction.
As far as I know (and remember we are not doctors on this site just regular folks) I don’t think the double vision will “go away” on its own. I think the muscles are permanently damaged (Kimberly or Shirley can chime in here) and the only solution is surgery. But please get this info from your doctor.

To your question – how have I coped with TED for 4 years – well, I would say that I moved beyond coping to learning to accept this as a part of my life story. And, as a hospice nurse, I see some pretty horrible diseases. I guess I realized on some level that we all have to deal with something in our lives, and I gave up worrying about how I look to focusing on being able to see. The TED may go into hiding, but the damage it has done to my eyes is still visible. My eyes still are sore and irritated. But it is so much better. It is not the first thing I think about when I look at myself in the mirror in the morning. And I trust that I have good doctors and that whatever happens I can deal with it. I am living with the double vision because the prisms are working for me. Someday down the road I will get it fixed.

What else can you do? Life is too wonderful and precious to spend time feeling sorry for myself. Don’t get me wrong; in the beginning I was freaking out! but over the 4 years I have learned to accept it. I hope that, for you, the same process will happen and that you will be able to take it one day at a time.

Patti

[scanders]

#1182811

Thanks Patti Meg. You, Gatorgurly, Shirley, and all the others that have shared here are truly an inspiration! Yes, the doctors did say it was not likely that the muscle damage would improve, so I have prepared myself for needing the muscle surgery. (I’m still hoping no OD.) Maybe if I could still use a prism I wouldn’t feel so out of sorts. I’m working on acceptance and preparing myself that this could take a while, especially since my thyroid has yet to stabilize, let alone my eyes. After all, what can I do? I certainly realize that others have it much worse than I do. I mean, I can still see, work, and drive, even if it’s like looking though waxed paper some of the time. (But I still hope it doesn’t take so long for me…)

[connypie]

#1182812

Hello scanders, i have the eye problem too.at one point i had to tape both eyes shut at night and put a ton of goop in them every few hours and it didnt seem to help much.i had double vision and didnt even know it.tried contacts(approved by eye dr)multi focal contacts,first hard then soft.but they didnt stay in,especially my bad eye very uncomfortable.at night i couldnt see anything with them in.i looked into lasix,my eye dr said sure,i got a second opinion and that one said he could give me 20/20 vision but i would be miserable for the rest of my life.i only had enough tears to barely cover my eyes and lasix dries them out even more.so i said goodbye to that and keep wearing my glasses.i do excercises with a popsicle stick for the double vision and i dont wear those glasses with the little bitty lenses.i have a daylight lamp at home next to my sofa.and im careful at wich angle the light hits my eyes,ill get migraines with vision disturbances.my glasses have all the bells and whistles-near and far-antiglare-extrathin-flattened and they go dark in the sun.i still have to wear a hat outside and in the car because of the tint in the windshield.but i finally achieved a box of about 15×10 inches of single vision with glasses straight ahead.oh and i had tearduct plugs put in my lower ducts.wich helped quite a bit.yeah i get the thing with looking through a ziplock bag too.i sure hope your eyes improve soon and you can get on with your life.Life with Graves=sometimes it kicks you in the pants-sometimes you kick it. hugs connypie

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