Feeling hopeless and scared....

[NotADryEye]

Your pain sounds so familiar.

Be sure to ask if there is evidence of Conjunctivochalasis. I once heard an opth showing mine to students while saying it is often overlooked. Mine was originally misdiagnosed as ocular neuropathy and I was put on Lyrica.

Do you do warm compresses?

Does anyone in the UK perform Meibomian Gland Probing or, I wonder if it limited to the US.

If you have burning, it's usually MGD. If warm compresses don't help much your glands may be plugged. Be sure to ask if your meibomian glands are plugged and if the miebum clear or gunky.

[lizlou29]

I do have some blocked meibomiam glands and some not releasing much oil when pressed. I can't do warm compresses as they make my ocular rosacea worse and they are very painful the day after. I don't know what to do about this. He said Lipiflow is very expensive and hasn't had a high success rate.

[littlemermaid]

Liz, Are you clear how to get into Moorfields if you need them? A&E or optician referral or GP referral. It's on the website Dry Eye link I posted, and they are surprisingly chatty on Twitter too sometimes.

Moisture chamber glasses sound essential. I did find some in Boots/D&A. Otherwise people have sourced them by contacting optician chain Head Offices.

I'm surprised that as a cornea specialist he doesn't get the pain.

[Guest]

I know you're right, I need to try something but at the moment I just feel paralysed by fear as I'm basically housebound and in so much pain I don't know how I'm getting through the day.

The consultant told me to stop the sleep medication as it's so drying and to tire myself by running but I don't think he understood that my sleep problem is servere and my eyes are so bad I have to keep them closed a lot. Also exercise causes a rosacea flare. I feel so stuck and it's not something I can manage with a humidifier and eye drops. He said going private at Moorfields wouldn't help as they couldn't offer me anything different to the NHS. I know he doesn't understand that I have no life because of this.

Did you like to read before your eyes went bad? If so, maybe check if your boyfriend, or a family member, could get you set up with audiobooks... my hubby set it all up for me, researched ipods for me so I'd know which one to buy without having to do the reading myself, and found out where I could get audiobooks, how to download them etc. Just saying this because when my eyes were so bad that I had to keep them shut for several waking hours every single day, the audiobooks helped to distract me from my eyes (along with a cool compress to alleviate the burning eyes).

(I have an ipod touch, and I subscribed to audible.com for my audiobooks... plus, our local library has audiobooks that can be downloaded for free just like a library book... maybe check your own library?)

Are you wearing moisture chamber glasses yet? Wiley X makes some decent ones - they can be an enormous help - with them on, even with my eyes so bad that they'd be shut for several waking hours per day (in addition to sleeping), I could at least leave the house and DO stuff when my eyes were able to be open... as my hubby said back then, if my eyes were going to drive me crazy no matter what I did, I might as well get out of the house... it was good advice. I admit I cried when they first arrived... I was so sad to be having my appearance be even MORE impacted by my freakish eye problems... but I learned that if I didn't look in any mirrors when wearing them, and purposely FORCED myself to PRETEND I looked normal, and therefore I could ACT normal too, it became easier and easier to forget forget I was wearing the damn things and get on with life.

These days, most of the time, I could care less about how I look... my Wiley's are just part of who I am now... take it or leave it... and you know what? People are actually quite ok with it. If you haven't done it already, you can get to the same place... you'll see! (I admit that I still won't wear the clear-lens ones in public... but my sunglasses ones get worn to work, to the mall, to Costco... pretty much anywhere I go in public where there may be a draft, or I may have to walk around - the airflow from walking is not comfortable for me so the Wiley's fix that problem.)

And DO consider that rosacea book I suggested... I know there are no guarantees... but you seriously have nothing else on the go for the next 6 weeks, so maybe it would feel good to be doing something... what if it helps? The sooner you try, the sooner you'll know... And as I said, unlike many others, you already KNOW you have rosacea, and therefore odds are higher for you that it's rosacea contributing to your MGD, so I would think someone like you would have better odds than the average person of something in that book being helpful to you... I know it can seem overwhelming to contemplate changing your diet drastically when there is no guarantee it will work... but... what if it DOES work?

Ok.. I swear, I'll stop pushing that book... I don't want to nag (ok... I already AM nagging, aren't I... ) I'll stop now... honest.

Anyhow, whatever you decide, just hang in there... I must admit that when my eyes were at their worst, chocolate, ice cream, potato chips and sweets were one of my mental therapies of choice... they gave me a few minutes of pleasure at least (and chewing DID make my eyes feel a bit more wet while I was eating * disclaimer * I am not advocating that anyone eat themselves into oblivion until they weigh 1000 lbs or anything like that... )... couldn't possibly have helped my eye issues, but, well, you now have my confession of one more of the ways that I coped...it wasn't until later that I tried that crazy rosacea diet. So maybe I'm the last person who ought to suggest a crazy restrictive experiment with diet at a time when maybe you NEED the comfort of your usual food. (((hugs)))

[lizlou29]

SAAG I've ordered the book. Will look over it next week and place a grocery order online as I can't go to shops at the moment. I will report back!

I've ordered some of the 7eye sunglasses from the dry eye shop. I will bite the bullet and get some moisture chamber glasses for home and the office, I've got to accept that I will get questions. I'm going to take my humidifier in with me too (more questions). I think people at work have seen how much I have been suffering so hopefully I will feel like a complete freak.

[Guest]

SAAG I've ordered the book. Will look over it next week and place a grocery order online as I can't go to shops at the moment. I will report back!

Man, I hope it helps you - I'll be crossing my fingers for you!!! His rosacea diet is the only advice I followed, and it was gold for me (due to accidentally finding out that I have issues with wheat, among other things) - hoping you strike gold with it too!

I've ordered some of the 7eye sunglasses from the dry eye shop. I will bite the bullet and get some moisture chamber glasses for home and the office, I've got to accept that I will get questions. I'm going to take my humidifier in with me too (more questions). I think people at work have seen how much I have been suffering so hopefully I will feel like a complete freak.

Excellent decision! I know it's tough, but those crazy glasses can make a world of difference to comfort - just don't look in the mirror until you're comfortable with them!

And as for the humidifier, that probably won't cause many questions... tons of "normal" people find indoor office air dry, so they probably wouldn't give it a second thought if they saw you with one I've brought mine to work in the past too... people know of my crazy eye problems, so they don't say much about it.

Can't wait to hear updates from you!

[bakunin]

Yeah, in my worklace the boss bought humidfiers for the rooms, so it is not that weird.

Like SAAG, I don't look in the mirror when wearing my Wiley-X.

People will get used to see you with them. They will be friendly as ever, of course. Moisture chamber glasses make a huge difference.




Like SAAG I don't use to go outdoors with clear lenses, so i purchased one with dark lenses.

[Warren]

I understand Lizlou--my Lexapro or St. John's wort makes my dry eye worse

Dear Lizlou: I have been having dry eye for about a year and four months and have had many of the same kinds of thoughts you have had. I was on Lexapro for depression and got off of it and starting taking St. John's wort instead. Both of them are SSRI inhibitors, and both, for me, made my dry eye at least twice as bad as if I was not taking them. Now I am on Wellbutrin (I am told it affects norepinephine and dopamine, but not serotonin) and an anti-anxiety medicine, Klonopin, and together they have greatly improved my depression and anxiety symptoms about my dry eye. This is just my experience, but the Dr. who told you that anti-depressants cannot contribute to dry eye is just downright wrong, at least in my experience.

Hope you find something that brings you some relief. I have found that doing ANYTHING that brings some relief is worth it.

Best wishes,

Warren

[lizlou29]

Bakunin - I don't think I could bring myself to go outside with clear lens moisture chamber glasses, I'm hoping the sunglasses I've ordered won't look too strange. My boyfriend said he couldn't care less how I look as long as I'm not in a lot of pain, that's sweet but I care. I'm trying to educate people at work about the condition as I keep getting the usual "don't eye drops help?". I wish they did for me!

Warren - I'm staying away from the anti-depressants at the moment. I'd like to be having intensive counselling but I've got a 4-5 month wait on the NHS. It concerns me that the psychiatrist I saw seems to know less about medications than the Community Practioner Nurse who understands why I'm hesitant. My GP said "what is a little discomfort if it lifts your mood?" I get the premise but when I'm in pain all day every day I don't want to do a thing to make it worse. I started on Cymbalta a couple months back but I immediately noticed a drying effect, my GP thinks I'm "hyper-sensitive" and that she hasn't heard of it causing dry eye. It's frustrating because I know my own body but she thinks if she told me something won't make my eyes worse then I would take it and be fine. I wonder if I can find a GP with dry eyes?....

[HNautumn]

I have bought Rosacea 101 and The dry eye remmedy SAAG mentionted. I dont know if I have Rosacea but I hope I will find there something that will help me

[NotADryEye]

I do have some blocked meibomiam glands and some not releasing much oil when pressed. I can't do warm compresses as they make my ocular rosacea worse and they are very painful the day after. I don't know what to do about this. He said Lipiflow is very expensive and hasn't had a high success rate.

If your glands are plugged with fibrous tissue, I am not surprised that warm compresses make it worse. Lipiflow might not be a good idea until the glands are first cleared of the obstruction. Intraductal Meibomian Gland Probing clears up the obstruction so would likely be a first step.

Have you been tested for demodex mites?
Have your lid margins and conjunctiva been cultures for bacteria?

And if there is severe pain, so bad you can't open your eyes, be sure to ask about conjunctovichalasis.

[lizlou29]

The opth didn't say anything about fibrous tissue. Warm compresses seem to make my eyelids very red and sore for a day or two afterwards and I don't do them very hot at all. I believe this is because of the rosacea.

I haven't been tested for demodex, my opth laughed and said i've obviously done some reading but that they wouldn't be causing the problem. I haven't had any testing for bacteria.

Some days my eyes are sore/dry but I can manage to work (just about) but other days I have to keep them closed most of the day. I haven't worked out what is making them worse and I keep being told at the eye clinic that MGD/dry eye shouldn't be causing me this much pain despite a Schimmer's of 0 and 1 and a TBUT of 3 to 4 seconds.

[spmcc]

... my GP thinks I'm "hyper-sensitive" and that she hasn't heard of it causing dry eye. It's frustrating because I know my own body but she thinks if she told me something won't make my eyes worse then I would take it and be fine. I wonder if I can find a GP with dry eyes?....

I think I'm hypersensitive to drugs too. So whenever I have/need to take something, I take half or even a quarter of what is prescribed. Also, instead of increasing the dose after a short time (which doctors usually recommend with, for e.g., antidepressants), I remain on the low dose. If I notice it helps (even a little), I stay there - never increasing. If it does nothing or makes me more dry, I quit. But at least I can tell them I tried what they recommended.

BTW one of my ophthalmologists has minor dry eyes due to rosacea. I hate to say it, but I LOVE IT!

[patrick]

Lizlou,

I really haven't very much to say,but so many things you say in your thread sound so familiar!
I've gone through a lot of things exactly as you describe here. And I'm sure the're many,many others here on the forums who recognize the situation you're currently in. You came to the right place for support.
Just wanted to let you know you're not alone and i want to wish you all the best.
Things will absolutely get better. Its a dark place. Been there myself. Its downright horrible,but please keep the faith. Things don't stay the way they are right now.

Also want mention that the way all others,and especially saag of course are trying to be of any help here is just extraordinary!...

Patrick.

[Faith1989]

LIzlou, have you tried any prescription eye treatments.. Sorry if you already mentioned this, I can't find it in your previous posts. I.E. Restasis or serum tears, even Steriods for now?? there are so many treatment options.. Ppl usually find what works best. I haven't yet.. But my lids aren't as bad as they used to be. It's very hard, I am on,y 24 and have been struggling.