I'm so pleased to find you all!

[lisiamc]

Hi,

I am so pleased to find this site. I've had dry eyes for years, and treated them with hypromellose as needed, but in December I poked myself in the eye with a magazine and scratched my cornea. It healed fine until last week, when I had (what I now know to be) two corneal erosions.

I have an appointment with a specialist, but not for another couple of weeks. The two doctors I've seen so far have not been all that helpful. But thanks to this site, I've learned so much in just a few days.

My Tranquileyes mask was just delivered today, and I'm looking forward to trying it tonight, because I don't have good results with Lacrilube and similar sticky ointments. They just make my eyes feel hot and gritty, and I read that they're not guaranteed to prevent another erosion. And I would do just about anything to prevent another one!!

I'm in the UK - does anyone know if I can get Dwelle over here? It sounds good, and I'd like to try it. I have some GenTeal gel coming by post.

Pleased to meet you all, and thank you for being here!

Lisa

[Guest]

Lisa

Genteal Gel is not readily available in the UK but Viscotears in preservative free is and is quite a good substitute.

I haven't yet ordered Dwelle over here in the UK, but I believe that Rebecca has now made it available to us in the UK.

Both products are worth a try, I am an old hand with RCE's and know only too well how difficult they can be to deal with.

I found that taping my eye closed (of a night) for several months really helped in getting them under control.

Good luck and I hope you find a manageable place very soon.

warm regards

Ian

[eva b]

Hi Lisa

welcome from another UK member! Like you, I've learned more here than from all the specialists I've seen to date.

Apart from the tranquileyes, which I just got yesterday, I also ordered some goggles which go over my prescription glasses to preserve the moisture on my eyes during the day. Just came this morning - so I will report how it goes. One of the members here recommended this as she's had a lot of success with it.

Had to order from the US - we seem to be very behind with this type of equipment!

best,

Eva

p.s. have you read Dr Latkany's book?

[stella]

I'm another one from UK (Americans must think we are a clannish lot but we DO have some unique insurmountable problems being under the NHS - so please forgive us )
Anyway Lisa --- Hi and welcome --- you will definately get support ,and valuable info ,and practical help and suggestions from this wonderful communityThanks to Rebecca
Eva - what kind of day, over Rx wrap- a- rounds did you get?
I sent for "cocoons " and i am wearing them now - at the computer, but would,nt be seen dead in them outside, as they make me look like an insect with huge eyes
Coming into( hopefully) sunnier weather i'd love a pair of more fashionable sun glasses over my glasses - not goggles with a strap at the back of your head ,but ones with arms that go over your ears
Very hard to get

[lisiamc]

Hi Ian, Eva & Stella

Thanks for the welcome! I haven't read Dr Latkany's book yet. I'd better see about getting myself a copy.

Ian, when you tape your eye shut, do you load it with something like Viscotears first?

Lisa

[eva b]

yes, we definitely are the "poor relations" of the dry eye community, here in the UK

Stella: the glasses I got were a brand called Wesco safety glasses, from an ebay shop in the US. (nothing similar available here, needless to say....Lord, we're in danger of sounding like moaning minnies aren't we lol)

I'll try to forward the link to your email address. They cost $16.95, plus another $15 p & p, and you need a paypal account to buy from this guy. It took just over a week, with no hassle and he was very helpful.

These do look a bit odd - I mean, they are large, but they have arms like normal glasses, not an elastic like motorbike goggles which would look rather eccentric on a middle aged lady - and I'm wearing them indoors and out (long since given up caring what I look like I'm afraid). I also intend to get a pair of tinted ones which will just look like very large sunglasses. Perhaps I'll get mistaken for Victoria Beckham in them.....hope springs eternal.

[eva b]

Lisa,
which part of the UK are you from, if you don't mind me asking...just curious
Eva

[lisiamc]

Hi Eva,

We live in Higham Ferrers, about 8 miles from Northampton. It seems like there is a pretty good representation of people from the UK on the boards!

Lisa

[Guest]

Hi Ian, Eva & Stella

Thanks for the welcome! I haven't read Dr Latkany's book yet. I'd better see about getting myself a copy.

Ian, when you tape your eye shut, do you load it with something like Viscotears first?

Lisa

Lisa

Absolutely, I used to use Genteal Gel (which I got from Australia) but then found preservative free Viscotears here in the UK and find that they worked much better for me.

You will find posts from me where i hated viscotears but at the time they were useless but now I just love them.

I did notice a significant difference between Genteal Gel and Viscotears, I haven't yet worked out whether I am sensitive to HPMC (hypromellose........) or the preservative in Genteal Gel but Viscotears contains neither of these and are so much better for me now.

The tape I use is available from Asda and is a low allergy perforated medical tape (clear) and is just brilliant for this purpose.

Hope this helps

Ian

[liz56]

Hi, Lisa.

I'm sorry that rec's brought you here, but it is a great place to find ways to cope and heal.

I concur with everyone about eyewear and Dr. Holly's drops!

In addition, I'd like to mention that it is worth going to more ophthalmologists than just one or two. It took me five before I found someone. It helps to look for ophthalmologists who specialize in diseases of the cornea rather than just refractive surgery.

Also, Cindy, who posts here, has given me valuable advice. While we may not be able to avoid rce's in that our lids stick to our corneas, we can avoid them by taking steps not to open our eyes while they are stuck. The goggles help me to do this. In fact, just this morning, my eye stuck, but the goggles kept it closed until I was able to be fully awake and apply eye drops to the inner corner of my eye, let the drops seep in, and then slide the lid open without injuring the cornea. (Thanks so much for this advice, Cindy!)

When my erosions were awful and waking me up in the middle of the night, because my cornea was so thin and weak that REM sleep tore it, I slept in a recliner in the livingroom, and that helped to stabilize my head.

I hope that healing and relief come your way soon!

--Liz

[lisiamc]

Hi Liz,

Thanks for the welcome and advice. I will look out for Cindy's posts. Am I naive in hoping that I can get back to a place where I just have moderately dry eyes, and no further risk of rce? Before I had the abrasion, I was able to coast along nicely with occasional hypromellose drops. I live in hope of having an uninterruped night's sleep again - as it is now, I wake up every hour or two because I'm frightened of having another rce.

Lisa

[liz56]

It's been a really long problem for me, Lisa. However, everyone is different, and I am sure that a lot of people get back to normal. It's been since the end of May 2007 that I really had such bad problems that I went the doctor about it. (I let it go for too long, thinking that it would go away by itself.) Also, mine, after lots of thinking, likely did not come from an injury. My problem is epithelial basement membrane dystrophy (ebmd, or abmd, or map dot fingerprint, or Cogan's dystrophy). So, if you do not have that, there is no reason not to believe that your eye will heal up, given time. Even if you were to have it, there is the possibility of improving greatly. It just takes time to heal and effort to take care of yourself.

Dr. Holly's Dwelle eye drops are fantastic. I just put some in and feel so much better! I use a gel at night, but Dr. Holly's drops during the day.

I had a minor erosion last week, but also in the past week, I got 7.5 hours of sleep in a row without my eyes sticking-- the first time in a long, long while. So, this problem (for me) is not going away "overnight," so to speak, but it is lessening.

Keep me posted on how you fare.

--Liz

[Mcgoldilocks]

recurrent corneal erosions - London

I had a bad erosion in December and the ophtamologist recommended I use lacrilube every night for at least the next three months... but then I had another one in January, that's when I found this site. Following the recommendations I've been taping my eyes at night (after putting in the lacrilube) and so far so good. I've also drank less alcohol and tea/coffee as it's important to keep hydrated.
I have an appointment at Moorfields eye hospital at the end of this month, I will post back if they have anything interesting to say.

[allie0426]

My story is much of the same...was fine until I woke up last november with my first erosion. I have epithelial dystrophy(I subsequently found out) and have lots of erosions, but, thanks to Dr.Holly's drops, are becoming less severe. This site is amazing and the people are so supportive...you've come to the right place! Good luck.

Allie

[lisiamc]

Thank you all for the encouraging words. I feel so much better when I come to these boards, and I'm learning a lot. In just a few days, I have seen some improvement from the advice I've received here.

I stopped using Lacrilube, since it made my eyes feel even dryer and horribly sticky, and started using Viscotears instead (wonderful stuff - thanks, Ian!) I also got a pair of Tranquileyes goggles, and have slept with them for two nights. I've used the Thermoeyes warm inserts twice. My eyes feel better already - it's such a relief!

I'm setting the alarm for every three hours at night, because I'm still terrified of having another erosion, but at least my eyes are staying well lubricated under the goggles.

I feel like I've been able to take some steps to help myself, and I'm don't feel as panicky and helpless as I did last week. And I have a much better idea of what to ask the doctor when I go on the 29th.

Thanks, everyone - you've thrown me a lifeline!

Lisa