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Old 05-19-2011, 07:49 AM   #16
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BYU1972 HB UserBYU1972 HB User
Re: CPEO-Chronic Progressive External Opthalmoplegia 2010

wag, was that note to me BYU or someone else that posted. Am I to understand you have extreme light sensitivity and CPEO, Recent visit to H, dr, told me to see Rheum Dr to test for Sjogren's. Were you tested for that?

 
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Old 06-01-2011, 10:48 PM   #17
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Re: CPEO 2011

Hi everyone,
Apologies, as I rarely come on this site anymore.
I had the muscle biopsy done when I had my sling surgery-this confirmed my condition.
After seeing my Ophthalmologist again a few weeks ago he made the decision that having more surgery would not be a good option for me. If anything he wanted to reverse what I had done. As that was a definite NO from me and he did not encourage lifting the eyelids again due to my dry eye problems etc itís just a case of dealing with it now. I have found much relief in a spray called Tears Again, and individual Bion Tears Drops. At night I Still use Visco Tears Gel and wear an eye patch to keep my lids closed and from drying out as much.
The Doctor is trialling a probe which he placed down my eye to block my Tear duct and hopefully help my eyes to self lubricate more. Am definitely having more luck this time round with less pain. (Although that could also just be the change in weather and less humid conditions he said)
I never noticed any differences in overhead lights until you mentioned it. When I was in that situation I did find extreme differences with my eyes.
I donít have any visible scaring but you can slightly see the knots where the slings are held on my forehead. Nothing major-but I do find if they get knocked then it causes a lot of pain.
Looking half asleep all the time was the worse feeling during school; I used to get accused of using drugs etc Because of my droopy lids. Only wish I had of known earlier about this condition and maybe could have altered the speed itís progressed. But who knows?!

 
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Old 06-02-2011, 10:40 AM   #18
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Re: CPEO 2011

hey Ren-so how young are you again? so you do have dry eyes AND the droopy eye situation due to CPEO. so are you in the states cause i don't recognize the names of drops you use. my lifesaver (it helped the best so far) is GenteaL (for severe dry eye).
my eyes don't really droop except at t he end of the day. The sunlight is very harsh outside esp with sunglare but doesn't cause pain like computer does. My work found an anti glare screen for me to fit over computer. this is my first day so far so maybe by next week i won't leave work crying like i do now. i wonder how many have cpeo and dry eye? I would love to have an eye spray to spray on and also i wear an eye mask at night to try to keep moisture in too. in a few weeks i'm going to get all four temp plugs put in (hopkins said that is what i should try next). sounds like i should be glad hopkins didn't recommended that i get frontalis sling later. Will be waiting for your reply soon

 
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Old 06-03-2011, 01:38 AM   #19
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Re: CPEO 2011

Hi,
I am 24 this December.
I had droopy eyes because of CPEO, not so much now because of the operation-but i have noticed them starting to slowly droop again.
I do get dry eyes from having my lids raised and them not being able to handle so much light/exposure etc.
I am in Australia. I have tried every drop and gel on the market and have found these to be the best! I used to use Genteal but i think thats the one that is water based and didnt last the night where as viscotears is oil based i think (dont quote me, but i do know theres a difference lol)
The end of the day is worse for me as i am tired and they just want to close by themselves. When i am tired i tend to blink a lot also!
I didnt understand how the spray would work considering its on the outside of yuor lids, but i have found it to be almost an instant relief-momentarily anyway.
The sling operation isnt for everyone and i have had problems since, but i wouldnt change it!

 
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Old 06-08-2011, 08:16 AM   #20
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Re: CPEO 2011

wow you are 24... bless your heart!!! i've heard that it slips and the sling moves if you bump your head or something and hurts. You probably have to get it fixed etc... every few years etc. You take care!!! I will see if i can find that spray online or something. Do you use hot compresses? (washcloth in microwave for about 30 sec). I think working on the computer makes my eye droop, In the am my eyes look almost ok. But i am not so confident with driving, seeing exits etc. I find it hard to focus and things are blurrier. Chat soon

 
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Old 05-02-2012, 06:34 PM   #21
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di88 HB User
Re: CPEO 2011

Hi, I know its a little late but just came across your post now and had to say how similarly I feel in terms of my symptoms. Similar to you, my symptoms started in my early 20's. I have had surgery on my left eye but the results have not sustained. As the day progresses, it definitely becomes harder to keep my eyes open- feels like I have to lift a 50 lb weight with my eyes and like u said my forehead muscles are extremely sore as well. I also have a lot of generalized fatigue and aching muscles which I think is also related to cpeo. Anyway just thought of sharing because what you wrote sounded so familiar.
All the best

 
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Old 05-04-2012, 12:55 PM   #22
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Re: CPEO 2011

hi, well... now I am back in Florida with heat but waiting for humidity to kick in. I have done so many hot compmresses and put so much gel in my eyes...
I will tell you my main thing that makes in difficult to function in light sensitivity. I do have terrible Chronic Dry Eye Syndrome however the extreme light sensitivity sucks. I am close to just giving up... but through new means here in FL... After gel, taping, sitting in the dark, I am now wearing two pairs of sunglasses on top of the other when driving. next I bought some 20.00 goggles (way too expensive) and will put REFRESH PM in my eyes at night and sleep with these goggles. I have been taping my eyes closed for almost one year, I still have blurry vision etc... so on I go to swim at night LOL
I do not drive at night and since I have such horrid dry eyes, Frontalis sling or any eye lift is out. Last Occuplastic I saw a week ago said we could lift my lower lid and that might help with the dryness but no job, no insurance doesn't allow that at this time. Probably I will file for disablity b/c I have been back in FL and can't find a job and also have chronic heel pain. I have not turned down any jobs though I have gotten a few interviews and none have turned out. Everyone responds differnt with this CPEO... Hope you are able to deal.... support and figuring your way to be as comfortable as you can helps.

 
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Old 09-04-2012, 09:34 PM   #23
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Is anyone still around with CPEO?

 
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