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I really, really need help with this. I cannot sleep for more than 15 mins. at a time, every few hours. Any more than that results in multiple RCEs. Nothing helps it or keeps it from happening, not drops, not ointments, not moisture goggles, not warm wet washcloths, nothing. My mental health is suffering because of it. I don't know what to do. Has anyone had this problem and found a solution? Please help.
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Hi. I am very sorry to hear that you are having such severe problems at night. I was curious, is Muro 128 one of the ointments that you have already tried? My doctor told me that it works well for RCEs.
Update: Sorry, I just scrolled down and saw your other post and I see that you are trying the Muro.....nevermind
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Hi Deb,
I'm sleeping about 3-6 hrs/night now. I use Muro 128, but drops, not ointment. I also use Dwelle. Hot moist compresses. Tranquileyes, with saran wrap.
Thanks for the reply :~)
MComment
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Hi, morgaine101.
I'm sorry that you are suffering through this. I had RCEs, too.
You sound like a good candidate for a bandage contact lens. Has your eye doctor recommended it?
--LizComment
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Hi Liz,
Thanks for taking the time to reply. The bandage lens was the first thing we tried. RCE resulted. Back to Square 1. Ugh!
Using Muro 128 & Dwelle (and saran wrap, and tranquileyes) right now. Had wonderful results for a few days, then last night it started all over again. Today was horrendous :-(
This gets to be a bit much to deal with in no time at all.
I'm thinking I might need to change my anti-depressant, but without medication, I'm suicidal. Scary.
Thanks for writing.
MComment
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Hi
Tapering off your antidepressants will help but it will take time to notice adifference even after you stop them altogether.In my opinion you may benefit from a month of eye rest and some antiinammatory treatment in addition to the palliative lubricating treatments u use.
I am so sorry to hear about your depression--I have it as well and a myriad of other health issues,but can never go on antidepressants.I tried andit was fatal for my eyes.I take clonazepam but can hardly tolerateit as well-so not taking it every day.Also like you no sleep,emotional suffering,extreme anxiety.but at least the erosions were helped by doxycycline,tobradex ointment and fml drops,in addition to lubricating with ointments and gels loaded with vitamins.
I replied to your other thread too,really sympathize with u and all who suffer with all this.Hope you find the best treatment for you.
God bless you,
DaniComment
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Hi Ringo. I, too, am sorry to hear about anyone suffering through this ordeal. I'm still reeling from how completely this has changed my life.
I recently switched meds in the hopes that the new one, Pristiq, would help more with the PTSD episodes. I may need to go back on the Effexor XR, since that did not seem to have such a dehydrating effect on me.
I only work three hours a day, so that helps.
Thanks so much for your replies, Ringo.
M
Originally posted by ringo View PostComment
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Update - Good News
Today is the first day since this whole nightmare started that I went through the entire night with no corneal erosions. I started out awakening every 10 mins. to remedicate my eye, and eventually, over the course of several hours, worked it up to an hour and a half. The broken sleep makes for one tired puppy, but I did get SOME sleep, and NO EROSIONS!!! Yay!!Comment
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One victory under your belt and many more to come. Congrats and thanks for updating us.
Rebecca Petris
The Dry Eye Foundation
dryeyefoundation.org
800-484-0244Comment
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great news!
Hi Morgan,
That's great news! I was feeling really sad about what you go through especially when you try to sleep!
I also read Liz's blog and that reminded me of my sleepless nights during the worst pain of the erosins when my eyes hurt with stabbing pain whether closed or open-- there was no way to reduce it, it was so sharp and closing the eye was the same as keeping it open; plus any drop that went into the eye made me jump around with pain, including non preserved tears.
I cannot describe to you how I value the relief I got with proper effort and commitment to my treatment. And that is why I was hoping so much for you to get better as well, and to sustain a continued recovery! Just like the example of Liz's and my experience shows, there is a way out of this ordeal!
Wishing you a full recovery -- and soon all this will be like a bad dream from the past...
DaniComment
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Hello Morgan!
Lacrilube/Polyvisc are special ointments that are made specifically for your condition along with dry eye, it lasts long through out the night while you sleep. It really scared me when I read about your suffering because my eyes are so dry, when I wake up I am unable to open my left eye as it's so dry it's like my lid is stuck to my eye ball! I've been suffering for 7 going on 8 years with extreme dry eye, along with mucus strings, I've been using Muro 128 eye drops as they help remove the mucus strings. It's specifically for Corneal Edema but it helps me for awhile.
I am not sure what type of depression you suffer from but have you considered trying to cut out all your anti-depressants and trying Adderall? Yes it's for ADD but many are now using it for depression, I've been on it for years and it's the only drug that helps with my depression and ADD. Also if you smoke cigarettes that will affect your eyes even worse as I know because I am a smoker, I know really stupid and foolish when I've got this eye condition lol, well I hope you get to feeling better. DelilahComment
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