i'm not coping, i'm losing my dry eye battle

[whyme?]

i don't know what else to do.

I can't accept that i have ocular rosacea - the last two opthalmolgists seemed to think so. I agree with the diagnosis - but just don't want this evil eye thing.

I can't seem to control it either - my TBUT is 2. I have all the usual dry eye symptoms, red eyes, etc. I've had to accept a lot of changes - can't wear contact lenses, can't socialise after 6pm (it kills during the day but not as bad as evening). what hurts the most, as a young female, is the permanent red, sore looking eyes and my eyelashes are falling out. my eyes don't look like mine - the eyelashes are not growing back or if they do they grow back as short thin hairs pointing into my eyes. My appearance has changed dramatically. someone help me? how do i keep my eyelashes?

I know that there are worse things in life - but i am weak and wish i had any other chronic disease - just one that you don't feel 24/7 and one that does not affect your face.

I have fallen into a deep depression and the song 'the drugs don't work' springs to mind. I've been put on antidepressants - they don't make my dry eye worse but are not helping my mood. I'm so sad - and can't sleep - i've tried diazepam, ambien(zolpidem), temazepam, stilnoct, amitriptyline and counselling. I'm happy for like ten minutes; but the when my eyes hurt or i look in the mirror or see more eyelashes everywhere - i retreat and behave like a child - i don't want this.

I've called in sick from work for the last 14 days. I've drawn the curtains - its so sunny and beautiful in London, but I don't want to see the sun, it reminds me of last summer when i'd be sat carefree in a summer dress enjoying myself. I sit in my room everyday - trying to pass the hours.

i'm 29, i wish i had got married and had kids, then maybe i'd have someone to share my heart with. i don't think i'll ever meet anyone - my eyes look weird without eyelashes and the spring in my step has gone. i'm miserable company - all i do is covet other peoples' eyes.

i've changed - i've never focussed so much on ill-health and the internet. i now worry about getting all these illnesses. I keep reading that ocular rosacea often precedes facial rosacea, and i don't know if i can face that. i want to get married and have kids, but i doubt i'd be able to do that - not with dodgy eyes and skin, that is too much!

at the moment, all i do is plan my death -with the help of the internet again.

i feel like such a weak character -esp when i see that there are younger people affected by this - how do you all cope?

I'm failing. my symptoms seem progressive, they are getting worse with time.

i've tried - lots of different artificial tears, I have been on tetracycline antibiotics (same family of drug as doxycycline) for years - for acne, tried pataday for one month, fml, prednisolone, eyelid scrubs, warm compresses - but Dr.Latkany said stop, use a cold compress because the heat will make my inflammation worse. he really is good at diagnosis and shows great empathy. but my eyes are still like hell.

how can i change my mindset? and any advice or similar experiences with eyelashes will help.

[SuperDave]

Whyme?.
I feel your pain...it wasn't long ago that I too experianced the range of depression and emoition that you are going through...I am a coach , so I have always been a pick yourself up by the boot straps kinda guy! Although I see from your own words that you are not this type...I understand that...we are all different...the only thing we do have in common is that we do all get 24 hours in each day to be the best we can be....what do we do with this time? I will not tell you HOW to overcome your situation...I can however tell you how I got to where I am at....to sum it up in a word.....? ATTITUDE....I had to change mine...I made it a goal that every time someone ask me about my eyes I would say...I am better today, not where I wanna be , but getting closer every day!..I said this even when sometimes I couldnt get my eyes open to see them....I started the change inside....I started noticeing a change so then I went to my less is best theory....I quit with all the meds and different drops and just stuck with the fish oil, flax oil Restasis and Autologuos drops...I felt like I was just putting too much into my eyes...I couldnt tell what worked or didnt.....This and a positive attitude with a realization that life was a gift and should not be taken lightly helped me make the turn....I am not even close to the same person I used to be...I dont care what people think about my googles or my running into things....I have found a way to enjoy life!...I am better today...not where I wanna be...but getting closer everyday!

[msienkiewicz]

Amen Superdave! I'm right there with you. I love how you put it...

"I am better today...not where I wanna be...but getting closer everyday!"

I couldn't have said it better!

Melissa

[FWM]

I have been there.. I understand you..
you have to eliminate those negative thoughts of your mind, learn from the disease.., we cannot choose the diseases..

you are not weak, YOU ARE STRONG, you have to find inside your mind, deep inside, some peace, strenght.. cry all you need to have some relief if necesary..

of course you are not the same, you have changed, conscience has grown up in you.., you know now that real pain exists, the pain is due to our ideals of life..
You have to talk to yourself, gently, with patience..

The little voice coming from your ego will vanish some day.. that day you may be cured, you maybe not, you maybe in the process to solve the problem, you can never know or predict the future..

but you will know by then that you have knowledge of life and emotional inteligence, that you are a valuable person that deserves to love and be loved in return, but you have to truly love yourself first, you are not doing that at the moment. i am 23 by the way.., so i am younger than you, if i can think this way.. you can do it too. Just dig within your soul.

[cristiandryeyes]

whyme? I just wanna say your post really touched me, I just can say get an ocular surface specialist, do not visit any average doctor because it is out of their hands to help you, trust me, all they can do is to diagnose a disease, but they won't go further. You need someone who actually cares to find the underlying disease that is causing so much trouble to you.

And you are not weak at all, this disease can directly or indirectly put our life at risk, we all go through a deep black hole of depression. I thought I was a strong person, nothing could really affect me...I was so wrong, I got so vulnerable after this disease...I always live with fear, I fear things can get worse, so my advice.... get focused, what you need now is to get some relief, we are not talking about finding a cure, maybe you don't need that, i don't think that is something unreachable. And quit anti depressants, me as many others have tried them...they gave me nothing but more problems.

[whyme?]

thank-you all for you kind words!

i feel a bit embarrased! i just want to say thank-you for taking the time to read my post and replying. i know it can be hard to read negativity when you are trying to stay positive!

i've had two good eye days - and it truly is amazing how good you feel when you are not feeling your eyes!

i've learnt that rosacea responds to stress and emotional well-being.i feel that i can help my condition by staying well and sleeping well. with a good nights sleep - i'd say they are 50% better.

in addition - i have a fantastic opthalmologist - i've seen him twice - he has been so thorough, compassionate and just so pro-active - he keeps saying we are going to get this inflammation under control. Fingers crossed! I think positivity in a doctor can have such a profound effect on a patient's response to a chronic condition. thank-you dr.john dart!

and a big thank-you everyone on dryeyezone! hopefully - i will be able to post on the triumph sections soon - (i know there is no cure but my triumph will be acceptance and reaching a comfortable level with my eyes and facial rosacea!)

[irish eyes]

i
i've had two good eye days - and it truly is amazing how good you feel when you are not feeling your eyes!

I agree that it is truly amazing when you don't have to think about eyes.

Virtual hugs being sent in your direction!

[EllMitcho]

Hi - just to second Irish Eyes - not 'obsessing' over your eyes (how they feel, felt will feel - what is in the atmosphere, drops youve used amounts etc etc etc) definately helps.

Its very easy for it to take over your life otherwise! It happened to me.

Whyme - I am really pleased youve had a couple of decent days - I PROMISE you they will become more frequent once you figure out the best method to treat your eyes - hang in there.

It sounds like you have a found a good doc as well - I have yet to find one that even remotely understands

But on the plus side I am doing ok eye wise and have more good days than bad now

Great to hear you have had some success - keep going!

El

[sazy123]

i feel a bit embarrased! i just want to say thank-you for taking the time to read my post and replying. i know it can be hard to read negativity when you are trying to stay positive!

i've had two good eye days - and it truly is amazing how good you feel when you are not feeling your eyes!

i've learnt that rosacea responds to stress and emotional well-being.i feel that i can help my condition by staying well and sleeping well. with a good nights sleep - i'd say they are 50% better.

in addition - i have a fantastic opthalmologist - i've seen him twice - he has been so thorough, compassionate and just so pro-active - he keeps saying we are going to get this inflammation under control. Fingers crossed! I think positivity in a doctor can have such a profound effect on a patient's response to a chronic condition. thank-you dr.john dart!

and a big thank-you everyone on dryeyezone! hopefully - i will be able to post on the triumph sections soon - (i know there is no cure but my triumph will be acceptance and reaching a comfortable level with my eyes and facial rosacea!)

Im glad Dr dart has helped you and been compasionate. He was the opposite with me, he said not to come back and there was nothing he could do.

Has he got better with treating dry eye these days?

What treatments does he do for you?

I also have ocular rosacea, but he didnt diagnose it, he said allergies which its not.

If you have rosacea i would try IPL, im seeing a nurse in london www.intensepulsedlightclinic.co.uk shes good and shes doing an offer of 4 for 500 pounds at the mo.. she does the periocular area, getting close to the eyelids while aiming the light away from the eyes.

[Philipp_from_Germany]

Hi sazy,

I am curious... Is this nurse aware of your prior IPL endeavours with Dr. Toyos? Did you ever suggest her to contact him and receive training with the intention to apply IPL for MGD-treatment???

Might be interesting for a lot of people to have someone trained in the UK...

TX

Philipp

If you have rosacea i would try IPL, im seeing a nurse in london www.intensepulsedlightclinic.co.uk shes good and shes doing an offer of 4 for 500 pounds at the mo.. she does the periocular area, getting close to the eyelids while aiming the light away from the eyes.

[irish eyes]

Hey Philipp

That's a really good suggestion.

Last year I contacted a clinic in the North West of England - they dealt with eye conditions - plus facial treatments like IPL. They hadn't heard of it being used for the eyes.

[whyme?]

hi

to be honest, dr john dart has not offered anything new in terms of treatment. its simply his optimism and he keeps saying "we'll get this under control so that your eyes feel better" - his word keep my hopes high. he has also been quite good at allaying any fears i have about steroid eye drops. most other docs have said this is chronic and that is life, here you go try some lid scrubs and pataday good bye. he has been a bit more pro-active. i must admit, the 1st consultation was a bit cold and the usual, but when i went for the follow up he was more interested. i can see where you are coming from.

he gave me prednisolone eye drops for 1 month - but they irritated my eyes. i'm now on fml - for a month, they worked for a couple of days - the redness subsided and i felt better, but i've been on them 10 days now and my eyes are super dry and a bit irritated. he is also given me good suggestions for a dermatologist who is good with rosacea and has also written to my gp for me to see one on the NHS. he did also say that ocular rosacea sufferers respond quite well to restasis - maybe better than most. i've got that to try.

he is expensive and no different to others, but he just makes me feel better.

thank -you for the info on the ipl in london - is it for the ocular rosacea or the skin? I am definitely going to do it for the skin, my skin symptoms are really mild at the moment, but you never know, my eyes were mildly dry to start with, and in the space of a year have gotten so bad, so I'll do anything to halt the progression.

i am really inspired by the success gretchen had with ipl in the states and might be making a trip to the US again, i know it didnt help you much but i'm going to give it a go.

thank again for the IPL rec - i was going to post a thread for some advice

[sazy123]

Hi sazy,

I am curious... Is this nurse aware of your prior IPL endeavours with Dr. Toyos? Did you ever suggest her to contact him and receive training with the intention to apply IPL for MGD-treatment???

Might be interesting for a lot of people to have someone trained in the UK...

TX

Philipp

Hi,


yes she is aware.

No i didnt ask but she isnt a opthmologist, so i didnt think she would be able to express the oil glands and she doesnt have the eye equipment (microscope) etc that optitions and opths have to see the oil. So i dont know how she would be able to take his whole treatment on.

My idea for having her do IPL on me is just for the IPL side of it, im not getting the expression, i can do some light expression my self in the mirror afterwards. I like the fact she does the preiocular area thoroughly, so im just going off that.

My glands arent 'that' blocked, but if your glandas are really blocked you may need the harder expression that DR T does.

I feel my eyes are more bearable since IPL, not taking into account the worsening of my left eyelid my a hot compress a few months ago but i think IPL has had a bennifit so i want to carry on with it, even though the bennifit hasnt been significant like many on here.

When i mentioned restasis to him three years ago he dismissed it saying it wouldnt help me and hes been on trials and it wasnt that effective. I now believe him because it doesnt help MGD. Since most people with oculaur rosacea have MGD i dont understand his point, but i know there are some with ocular rosacea that it does help, maybe when ocular rosacea effects the eye surface and lacrimal gland?