RCE, sleep & pain management help?

[Tempestuous]

Hi all,

I'm just wondering how anyone else deals with sleep knowing that you'll wake as soon as you enter REM sleep, screaming in pain?

Both my eyes are starting to get worse again.
I'm not quite at the bone breaking level of pain yet, but not far off it either.

In my first year, I just stopped going to bed and just passed out for a few moments continually throughout the day. With anything longer resulting in a bad rip.

Today, I've been thinking of trying a different approach. Instead of hoping it wont happen or trying to avoid sleep altogether, just accept the fact that I will be in pain and pre-empt it by taking some painkillers before bed.

The thought of taking painkillers before the pain just seems absurdly wrong. However, I am so tired from lack of sleep and of the pain that I just don't know what else to do.

If I can get 2 nights in a row past the REM stage then I'll be overjoyed and come off the painkillers. Certainly the painkillers wouldn't help for normal waking rips (6 hour efficacy versus 8 hours sleep).

so ... diazepam + 60mg Dihydrocodeine (either with or without 1000mg paracetamol) pre bed.
Then, depending on the severity of the rip, 50mg diclofenac.

Sound like a plan?
Anyone got a better one?

[bernmee]

Nothing nastier then those RCE.

What treatment plan are you on for your eyes?

Do you use night time gel and do you pour solution into them before opening them, I know you can't help REM but how do you treat them when you do wake up.

Are you treating them during the day for "dry eye"?

Have you tried a bandage contact lens?

Have you tried doxy. ?

Bernadette

[Tempestuous]

Hi Bernadette,

thanks for your input,

briefly...
Left eye:-
vismed 4 hourly, Liquifilm 4 hourly
Right eye:-
as above but also just started testing Optive 4 hourly.

Before bed its Simple eye ointment and I am on doxy.
I use a humidifier + onion goggles
Bandage contact lenses just rip large chunks out my eyes.

I do apply vismed before opening my eyes in the morning but the rip has already occurred by then and the eyes tear constantly for several hours post rip.

more details on what I've tried are in this post..

http://www.dryeyezone.com/talk/showthread.php?t=9813

[liz56]

Yes, I understand what you went through. I had the same problem and was happy to get to a point when my corneas and eyelids stuck only in the morning and did not tear in the middle of the night. I only could handle the not sleeping project for six weeks. It took me almost a whole year to get to the point where I could manage my eyes and not have erosions any longer. I still have severe pain, sticking upon waking, and other off-and-on problems with visual acuity; however, I have been able to manage to start sleeping eight hours in a row. If I wake up, I reapply Dwelle in the middle of the night. However, I have slept for over eight hours without an erosion a few times over the summer 2009.

The things that I did to heal are documented in a blog I kept in Rebecca's DEZ Blogs, which are linked in the blue bar above; if it helps, you might want to check it out to see the severity of my personal issues and the steps I took to manage the condition. I kept meticulous notes about number of erosions, what I did to change my routine, etc. in a spreadsheet. I posted the spreadsheet on the blog, which I named The Recurrent Corneal Erosion (B)log.

My heart really goes out to you. Once I stopped sleeping, the erosions went away, but my emotional well being, memory, and ability to function or even feel like a person suffered to the point that even though I knew I would not kill myself, I did think, "I cannot live like this for long."

I wish you the best as you learn how best to deal with this condition for you. It is so hard to do, but it can be done.

Take care,
Liz

[bernmee]

I am so sorry for what you are going through, I was hoping you were having erosions and not receiving any help for them, but it seems you are really doing your best to get them under control.

My RCE were caused by Lasik and were under control in 4 months or so, but I understand the agony you speak of.

As Liz said she has suffered badly from them and is a better place now then before. I have only had a touch of them compared to you so I am sorry I have nothing more to offer you in terms of suggestions, but I do send you big positive thought for a restful night, some time soon.

Stay on the site though, there are many others who suffered RCE for some time and they seem to have resolved.

Pratster, who is a moderator, also suffered from them very badly, maybe you could have look through his posts.

Keep well,

bernadette

[Tempestuous]

Hi Liz and Bernadette,
I hope you get this. I just wanted to thank you for your kind words and advice. I'm afraid I became rather depressed and zombified over the last few weeks.

Liz, I read all your blog. Many similarities and a few differences. A notable difference is that I find a hot shower in my face the most soothing time of the day. I dont let the water in my eyes and I lubricate immediately after the shower. However, before I discovered this site I spent the first year of this condition crawling to the bathroom every time I woke with my eyes stuck to use the hot shower to ease my eyes open. Now of course I have discovered you can just use eye drops and let them seep into the eyes over a number of applications.

Another key difference being that if I dont get sleep, my eyes dry out and become more irritated which leads to more rips. So staying awake in fear of the pain is counter productive.

I'm going to update my original posting as there have been some developments with the new meds I was testing.
Basically a 2 week trial of optive in my slightly worse eye has healed up some damage pattern within the layers of the eye and has felt silky smooth for daylong comfort, and apparently even reduced the number of erosions in that eye.

Take care

[mike1222]

Sticking upon awakening is kind of a blessing...

Just roll over onto your back upon awakening, stay relaxed and don't move your eyelids. Then gently apply artificial tears where to top of you eye meets your nose (right into the eye socket such that the tear bottle gently touches the sclera. Let gravity work the artificial down into your eyes and in 10 seconds they will easily become unstuck - no erosion at all.

Best to you,
Mike

[liz56]

Hi, Tempestuous.

I replied to your post on this thread:

http://www.dryeyezone.com/talk/showthread.php?t=9813

Take care,
Liz