RCE Treatments & Results - anything I havent tried?

[irish eyes]

@ Irish Eyes - I hope the serum is helping...

I just wanted to give an update on some of the medicines I've been testing recently.
I've had great results with a product called Optive.

2 - Optive. This has been simply unbelievable. I was told it would take 2-3 weeks for there to be any noticeable difference. However, Upon the first application it immediately felt silky smooth and provided long lasting relief.
Keep in mind I have problems with both eyes and applied the optive to my (marginally) worse eye, leaving the other without as a control.
The optive was applied to the right eye in addition to the Vismed and Liquifilm.

That's encouraging news about the improvement in your right eye

As you pointed out - it's all a step in the right direction. And it so depends on your starting point!

My consultant rates both Optive and Vismed although sadly, I didn't get any relief from them. It's early days with the serum but I'm beginning to feel a little better in myself. I have an appointment with the consultant in around 5 weeks so he will be able to measure any change.

Take care now.

[Tempestuous]

Hi Folks!
Hope everyone is getting better.

@ringo - sorry for the lack of response, I was in a bad way with the pain and depression for a while, but thanks for your suggestion, I'll be sure to mention it to my specialist at my next visit.

@irish_eyes - I guess your appointment is due. I hope things have gone brilliantly for you.

Well, its been a month since my last post so I thought I'd give a brief update and tell you of something that has helped me a lot.

Good news:-
I can now sleep for several hours at a time.
I have had ZERO rips
I am off all painkillers
I am no longer wearing bandages over my eyes all day.
eyesight is returning

Bad news:-
I'm still light sensitive and so have only been able to go outside 3-4 times for a max of 30 mins before the pain kicks in for a few days.

Strange news:-
I've started getting a stinging/burning sensation when putting in either vismed or the polyvinyl alcohol for a few minutes. Similar to getting chillies in your eye after cutting them up. Now I've been using vismed for a year without any such sensation so I'm guessing its something to do with a side effect of either the polyvinyl alcohol or the Optive. I'll ask my specialist at my next apt.

But overall, whilst frustrated with the light issue, I am overjoyed not to be in pain and to be able to sleep.

Now my tip - which I'm sure many of you will know.... Sleep with an eyemask on at night!
I cant believe the difference.
When it falls off in the night I wake to find my lids stuck to my eyes. I thought a humidifier would have mitigated any effects - but not enough it would appear.
My specialist doesnt like me wearing an eye mask due to the risk of infection so I tried swimming goggles for a time but could never get them to stay on overnight. I then started placing tissue paper under the eyemask to catch the gunk from my eyes which just gets replaced each night without affecting the mask. Problem solved!
So all I need to do is work out a way to stop the eyemask falling off at night.... unless I just try taping the eyelid shut...

So thats about all I've learned this month...

Good luck everyone.

[Rebecca Petris]

Tempestuous,

I'm so happy to hear about the improvements you've had lately.

Just a couple of thoughts to share -

My specialist doesnt like me wearing an eye mask due to the risk of infection

It's a valid concern but there are a great many options now available that most doctors aren't even aware of. You may want to hunt around some more and take the info to your doctor so that whatever you are wearing they are on board with.

I think that a disposable liner and/or daily washing of most items minimizes the risk but anytime something is touching the eye area there are risks (note recent reports of infections while using plastic wrap!) and in addition there are always situations that warrant extra care and that may be your doctor's position. Sometimes it's necessary to use something that forces lid closure but for minimizing infection risk the items I would look at most closely are those that completely vault the eye area. That includes sleep masks (such as the Contour or Escape) and goggles such as the new Onyix and Quartz or post lasik style goggles that breathe. (Not trying to give you a sales pitch for stuff in my shop - just mentioning that there are many options out there.)

So all I need to do is work out a way to stop the eyemask falling off at night.... unless I just try taping the eyelid shut...

That's an area many people have struggled with. There are a lot of different sleep mask styles and straps from the simple single or double elastic bands to stretchy fabric wraps to velcro so if you can, it may be worth experimenting with other products. Also sometimes it's really just a matter of time - I think a lot of people unconsciously adjust to a mask or goggle enough that they don't do the movements at night most likely to bring it off.

[irish eyes]

Hi Tempestuous

It's great to hear about the improvements. Doesn't it make such a HUGE difference when the discomfort abates?

I have just returned from seeing my consultant; this was my first visit to him since starting the serum drops about 6 weeks ago. My eyes are certainly feeling better and I was delighted when close examination showed that they are also starting to look healthier. The blepharitis is still a pain though so I'm going to have to put a bit more effort into managing that.

I felt so pleased that I went on to do my shopping at an expensive supermarket and came out with some rather nice edible goodies. I didn't care that the checkout lady might have been puzzled by the yellow dye that was still clinging to my eyes and other face parts.

[mommychew]

Tempestuous,

I just joined this board a few months ago, and when I read your first post on this thread I sat at my computer and cried. I can't believe you were in such pain and doctors were not able to help you. I am so glad to read that you sought help from another doctor and are able to sleep again. I think one of the worst things about RCE is the mental fear and depression - I know frequently when I wake up I have a small panic attack that my eye will rip open again. I had two debridements with anterior stromal punctures in my right eye about two years ago, and after the second procedure I have had no problems with that eye. I use drops in the day and Muro 128 at night.

A few months ago I started having small erosions in my "good" eye. I began using the ointment in both eyes and I also wear a mask at night. I use fabric masks, and I put the ointment in my eyes, let it "melt" and blink a few times to make sure it covers the surface of my eye. Then I take some vaseline and put a little bit on my eyelid and a bit more underneath my eyes. I put the fabric sleep mask on and gently press it into the vaseline to stick it to my face. I wash the masks frequently to avoid any infections, but this has worked so well for me. I figured out that part of my problems was that I was sleeping with my eyes open during REM sleep, which was drying them out. The mask helped me retrain my eyes to stay closed all night.

Best of luck to you, and I hope your road to recovery is pain free.
~Sheila

[Tempestuous]

Hi Shiela,
Sorry to make you cry. I must admit to having a few such moments myself when reading peoples stories and subsequently realising I'm not alone and its just the ignorance of the doctors that make things worse than need be.

I'm glad you've found a routine that works and hope you manage to catch the problems with your 'good' eye in time.

Good health to us all...