New member... RCE and narrow angle glaucoma

[EdithFrances]

Hello all...wanted to introduce myself... I have been living with RCE for about 2 years now. I don't recall ever injuring my eye, however I did have surgery on it 52 years ago as a toddler, and then another successful surgery on it in 1985 (yes, I'm old!) but now I am dealing with RCE. Man... I've given birth 5 times and I've got to say: this is agony!

My extra challenge is that I have narrow angle glaucoma. Up until now they have just kept an eye on it. My challenge these days is: the symptoms for an acute attack of narrow angle glaucoma are VERY similar to an RCE flareup. Severe headache, light sensitivity, extreme pain, redness, tearing. Each time I have an RCE flareup I have to go in and get my pressures checked to make sure it's not the narrow angle glaucoma, which an attack of that could lead to vision loss.

I'm so weary of this routine. I was back into urgent care just this morning to check my eye pressure. The doctor I saw was so unfamiliar with eye care in general he practically POURED a bottle of freezing drops in my eyes! It dripped down my face and even in my mouth! My tongue went numb. LOL

The good news is they have determined that it is time to fix the drainage for my glaucoma. So hopefully that will elminate worrying about vision loss and then I can concentrate on healing the RCE.

I have an appointment in March to see a corneal specialist for the RCE. I'm hoping for some help. All I have been instructed to do in the meantime is use Muro 128 4 times a day. I'm not even sure the Muro128 in fact does anything for me. I have blogged my days, symptoms, routines, and there seems to be no rhyme or reason why I will have an attack one morning, and then be fine for 2 weeks.

I do know this extremely cold winter has been FAR worse than ever. Whether it is the dry cold that is irritating, not sure.

Anyhow... long introduction. Thank you all for participating here so I can have lots to read. I sure do appreciate your experiences.

~~EF

[EdithFrances]

Oh, and I am wondering... I've been reading some folks say "I took something for pain..." and I'm wondering if there even IS anything for pain? I use the Muro128, ointment at night, drops during day, I reapply as necessary day and night... but when I have a flareup I find that Tylenol doesn't even TOUCH the pain my eye is experiencing. For example, right now I am in such agony I could cry. Whether I keep my eye open, keep it closed, or blink, there is constant pain and no relief from it.

How do you all manage the pain during an episode? Is there anything at all?

[wagnermid]

"I took something for pain..." and I'm wondering if there even IS anything for pain?
How do you all manage the pain during an episode? Is there anything at all?

My son suffers from corneal erosions and has done for most of his life. (He's eleven now). He sees a Paediatric Pain Team and he has been on OxyContin and/or Endone when the pain is extreme. He is on medications for chronic pain as well. It certainly seems to work, he changes completely about 1/2 hour after having it. The pain Dr's attitude is they are strong medications but we use them when necessary as he has to be able to function and have a reasonable quality of life.

[EdithFrances]

Thank you... so it wouldn't be inappropriate for me to ask for a script for something stronger.

[wagnermid]

Thank you... so it wouldn't be inappropriate for me to ask for a script for something stronger.

I don't think so. For us it took a Pain Specialist to prescribe it. It certainly works for my son for the acute erosion pain. Codeine helped him a bit but it turned out he doesn't metabolise Codeine properly so we had to change medication. He tolerates it without side effect eg drowsiness, whereas I know I wouldn't. It allows him to function in what otherwise would be a life of unending pain.

[abbygirl]

Hi EdithFrances... I can relate to you on several issues. I have dry and and glaucoma.. Not narrow angle but I know the chronic stress having both issues brings. The first 2 years I saw my doctor to have my pressures checked over 70 times!! High pressures and dry eye have some of the same symptoms. Once I got my dryness under control my symptoms lessened and my constant worry lessened too.
Please be careful of pain meds. Some of them have warnings about taking if you have Glaucoma especially narrow angle. Please be sure to clear with your eye doctor. It will get better.. It just takes time.

[glimmer-of-hope]

Dear Edith,

Sorry to hear about your pain I wish I could help but I’m fighting with RCE too and still haven’t found any good solution…

You mentioned cold winter which means very dry air – my symptoms always get worse when the air is so dry, so I was wondering have you tried humidifier? It increases the humidity quite well, especially in small rooms and could at least a little ease the pain.

Hang in there!!!

[EdithFrances]

Hi all... sorry for the delay in replying. Hubby and I were able to get away for some warmth and sunshine down south. Now I'm back in snow country :-(

A few updates... the pressure in my right eye spiked and I ended up having laser surgery at the beginning of the month. I was terrified because it happened at the same time as I was experiencing an erosion. The doctor doing the LPI assured me that it would not be affected by the erosion and would not exacerbate the erosion. Fortunately he was right. Then hubs and I took off for the south and the heat and humidity were just what I needed as I did not have a single flare up while away. Yesterday he did the LPI for my left eye. So now hopefully the glaucoma will be a non-issue and I can focus on the RCES.

glimmer-of-hope... Thanks, yes, we have cool air humidifiers on all floors of our house, and I especially have one by my side of the bed for sleeping. I still find winter excrutiating this year.

abbygirl... you are SO right! I was at my GP in January and asked her for a script for Ativan for my flight down south. I hate flying and my daughter recommended it. The doc wrote the script, I had it filled, and then I got home and read the warnings "Do not take this medication if you have glaucoma" It hadn't dawned on me to tell my GP that I had narrow-angle glaucoma! In 4 weeks when I return to the laser doc for a follow-up he said that if my pressures are fine and he is able to dilate my eyes safely, then I will be free to take Ativan if needed for flying. So, we'll see.

I will be seeing a corneal specialist on March 12... I'll let you all know how it goes.

Thank you ALL for the support. It's so nice to find advice and support amongst others who know what it's like.

[EdithFrances]

So I saw the corneal specialist yesterday. Here is what he wants to do... he claims he has good success with RCE's simply with the hot facecloth over eyes for 2 minutes at bedtime and Muro128 ointment. Unfortunately he says in his experience it can take up to a year to be effective. Well I have only been using the Muro ointment since November. Man! I explained that this winter I seem to be having one episode a week. He said that if it continues that frequently in spite of the wet bedtime cloth routine, or I have an especially bad flareup, to come back in and he will do the procedure where he roughs up the affected area in hopes that it adheres better. He said he would prefer not to do it immediately until he has a better feel for what my eye is doing.

So I have a 6 month appointment to come back in, or else sooner if I want.

On an interesting note... with the reverse camera on my cell phone, I had taken several photos of my eye when it is flared up so he could see what I deal with. I was worried that I would get to my appointment, my eye fine that day, and my situation might be dismissed. I wanted to be able to show evidence that my eye is in agony when I have a flareup. He was VERY happy I did that! He said he's never had a patient take photos of their eye when it is flared up and it was very helpful for him.

He did not want to prescribe anything for pain right now. He did suggest Tylenol1, which we can get over the counter here in Canada. Again, if it is too excrutiating, to call back in to the office.

So, now we wait and see.

[Rowanberry]

Hi,

The hot cloth doesn't seem much to me but I hope it works. It sounds like a reasonable addition to treatment. I have never used Muro ointment so I do not know if it would have the same effect, but when the pain is bad, I put in celluvisc and put on onyx goggles which are made of silicone, are completely lightproof and keep the moisture in at the eyes. Then I sit upright so the tears don't drain away and just listen to some music or something and after about ten minutes the pain begins to fade.

I take tramadol and nsaids for other conditions and these can take the edge of my eye pain but not in the same way.

Some people use onyx goggles through the night instead of tranquileyes. They are certainly comfortable I am just afraid to change what I do in case things get bad again

I describe my routine on another post if you are interested.

I had very bad RCEs, every time I went into REM sleep I would get one and I was despairing. Three years after seeing a consultant I am not cured, but things are a lot better.

Surprisingly, using celluvisc every half hour or so during the day made a difference. It cut done on the inflammation and swelling I had from so much damage. Now I am down to about 8 times a day. I have realised that even the smallest bit of grit can cause a reaction that causes RCEs so I wear padded biker sunglasses out of doors and goggles, moisture chamber ones but others work, indoors when I do anything dusty like make the bed.

At night, I wear tranquileyes goggles and use lacrilube AND viscotears. I don't know for sure, but I think the viscotears lubricates my eyes and the cream holds the moisture in. I repeat the drops whenever I wake up, which is at least once or twice through the night. (Neither of the drops made any difference alone.)

As I wake up, I've trained myself to grab my eyes to keep my eyelids shut - have had a few erosions because I seem to open my eyes as soon as I wake even if I try to keep them shut. Then I gently rub the eyelids in a circle to separate them from my eye.

Before I do anything else, I use a hypoallergenic eye makeup remover pad to wipe my upper and lower eyelashes (a quadrant each) and then flood in celluvisc, more than I use during the day.

As I said, I still get erosions, I have gone as much as 5 weeks without one then it was every night for a while, but I feel much more in control and my eyes are not swollen and painful all the time anymore.

I hope something helps but good if the glaucoma is fixed.

Rowanberry

[miki-mama]

Hi. I experienced RCE for 6 months a several years ago. For pain, I took 600mg of ibuprofen (3 regular Advil) every 4 hours, which helped. I also used the warm compress several times a day. When the pain became particularly severe, my cornea specialist prescribed me an NSAID eye drop called Ketorolac which burns badly upon insertion and for about 5 minutes thereafter, but eventually helped to reduce the pain. I would put the drop in, then immediately applied warm compress to help relieve the pain.

Do you know the causes for your RCE? I found out, in my case, the keratinization of the underside of my eye lid acted as "sand paper" that eroded my cornea when I slept. During the day, my eyes were protected by the scleral lenses I wore. Once I removed the lenses at night, the hardened tissue under my eyelid scratched at my cornea, causing the erosions. They would heal after all kinds of medications, than pretty soon, the erosion would return. To repair the keratinization, one of my cornea specialist (Dr. Tseng/Miami) performed Mucous Membrane Graft where he removed a piece of mucosal tissue from inside of my mouth to replace the damaged tissue under my lid. After this surgery, I stopped having RCE. This was done over 6 years ago, and I have yet to have another corneal erosion.