Good Days, then Bad...Eyelids stuck !

[Smithy K]

Hiya

I was diagnosed with Dry Eye about 2 months ago. one eye started going bloodshot about 3 months ago (felt fine), then slowly it became worse and they both started to feel really tired. One over watering episode was diagnosed as Conjunctavitis, and then 2 weeks later after both eyes were as red as red, GP said i have hayfever !!!! (I knew I damn well didnt).

Anyway about the same time one eye started to go red I had started IVF drugs with HRT, so I am not sure whether this contributed but I have used them before and felt fine - no side effects at all. I wonder whether I have had Dry eye but only very slight for years as lots of people used to comment that my eyes were red (in the day) but I sit at a computer all day in fluorescent lighting - so I blamed that!

I have good days where I only need to use Viscotears twice or three times. Then some days my eyes are extremely sore.

The last couple of weeks i noticed that one eye started sucking/sticking to my eye lid during a nights sleep. This happened on and off. Then last night both my eyelids were stuck/glued ! Now this is really starting to get me down, and I am getting quite sad about it. The thought of having to live with this for the rest of my life. Dodging wind/heating/aeroplanes/hot holidays/alcholol/curries - yes I read that spicey food is a no no - bad for eyes. And my fave nights out would be a few lagers and a curry ! Grrreat NOT!

I feel as though I need to be under a specialist or something, but no one seems to seem the bothered about dry eyes. I must admit when I was first diagnosed I felt relief at first, as I was worrying about my symptoms being something more sinister. I have only seen one optician so far.Should I get a referral. I know there is nothing that can be done. I keep wondering whether its something that I am eating/drinking or are we being poisoned by a landfill 4 miles away (only kidding about the latter but you never know do you!!).

Sorry to ramble. I know there are a hell of a lot of people with symptoms and other ailments far far far worse than mine.

So eyelids sucking my eyeball at night - what can I do to stop this? Tranquil eyes????? Lots of Viscotears before sleep?

Should I see a specialist or am I wasting time/money/nhs money?????

Thanks for reading

Karen

[acarol]

hi Karen,

Ya you should see a Specialist BUT saying that i saw a private eye specialist and she said my eyes were fine (when they so obviously weren't.. why would i pay her €80 if i thought something wasn't wrong and causing me terrible distress). Anyway i left her and i got a referral from my Doctor for the local eye clinic in the local hospital and after THREE visits i was finally diagnoised with Meibomianitis (an imflammation of the oil glands in the eye lids) and this was contributing to the dryness.
Since starting doing warm compresses i have started to get some relief and i was also prescribed an 8 week course of the anti-botic Minocycline, but they take a while to 'kick in'.

I know exactly how you are feeling - it is horrible and isolating because no-one around you probably has the problem and don't understand how life altering it actually is. While my eyes still aren't 'normal' at least i'm not obsessing about them 24/7. I do feel your pain - i went through this too.
Definatley get a referral and try and get a proper disgnoises - SOMETHING has to be causing the dryness. Like me you may have blocked oil glands.
Don't let Doctors fob you off saying 'oh its just dryness theres nothing that can be done' - there IS things that can be done.
Best of luck and keep in touch. E-mail me if you need to know anything. I can send my address to you privatley if you want.

[Smithy K]

Thanks for your reply.

You are right. I will make an appointment with a GP for a referral - and if they cant justify the referral I will just have to pay.

Everyone I mention it to, just thinks oh "only dry eye". They dont understand. You cant just take a paracetomol to make the pain/discomfort go away, like you can for a headache - I dont stop thinking about it 24/7.
I used to live for my holidays/going out etc, but the thought of going on a plane (I flew 4 weeks ago) just scares the hell out of me. (The eye issue; not flying !) I cant drink alcohol anymore - one/two drinks sends my eyes into flashing beacons. (And I cant take antidepressant (never have done to date) cus I read that they can dry your eyes also !!!!!)

Even my mum made a joke saying you will just have to cry more...my boyfriend started rambling (when his was drunk, as I was still sober and darent drink), just forget about it, theres nothing wrong with your eyes !!!!

The optician just said "see you in 2 years for your next sight test"...I walked out of there feeling rather lost to be honest!!!

I see a Thyroid doctor twice a year for an overactive thyroid which I am on meds for - never ever felt any symptoms from this disorder. Yet, dry eye is a discomfort which is felt each and every day, but does not justify monitoring????

I am taking flaxseed twice a day. and TRYING to drink lots of water too. (when I remember).

Thanks for taking the time to read and reply.

Take care

karen

[acarol]

Ya i've got all those comments too from people - when we were flying out on a Hen weekend my hand bag was FULL of eye drops and i had to take them out and put them into clear plastic bags cz of the new airline laws and my sisters goes 'oh you and your eyes'... These are the type of comments that send me around the bend - people just DON'T understand.
As you say its not as simple as taking a tablet for the pain or putting it some eyedrops (they relief can last only seconds). Its an on-going, cruel process. I too used to love going out and really looked forward to holidays, now i think of my eyes automatically to see can they cope with it.

I have to be careful and not wear my contacts too often and air conditioning just KILLS them. Shopping (which i also used to love!) is a nightmare now too cz of the air con in MOST shops - they really sting and burn under air con.

Definately go back to your Doctor - i almost cried in my Doctors Surgery one day and in fairness to him he did do his best to help me. I think when i told him i had cancelled my wedding over it he started to take me really seriously

[irish eyes]

You are not alone! More than once, I have broken down in the doctor's surgery in sheer exhaustion and pain. But I wish I could shed real tears without the aftermath of even more stinging and burning.

And few people really understand - so now I rarely allude my condition at all because I can count on stupid opinions from the `experts' around me. I don't even use the term `dry eye' because that in itself can sound a little too innocuous. I live and work in the UK and made sure that I made my needs known to my employer - under the DDA (Disability Discrimination Act). It was a bit of a battle but in the end they could see that making minor adjustments made things much easier for me without costing them much at all. However, I was staggered at theri ignorance - they suggested I got stronger glasses.....and adjust my computer chair.

And when others tell you about people having worse pain than you (how do they know anyway?) think about this definition - `Pain is what the person says it is and exists whenever he or she says it does" (McCaffery 1968)

[skygoddess]

Karen,
Are you fair skinned? Ocular rosacea may be the culprit. The alcohol and curry triggers make me wonder.
I have ocular rosacea, MGD, blepharitis,and contact allergies( not the same as hay fever)

It has taken me along time to get all my problems diagnosed correctly, and an effective treatment plan in place, but it can be done.
Keep looking on this site, I found more help here than most of my Dr visits.

[lisiamc]

Hi Karen

My eyelids stick to my eyes at night too, so I can give you sympathy on that! I've been using Clinitas Ultra 3 in the daytime for several months with very good results. It's the UK equivalent of Freshkote.

At night I like Genteal gel, which I get by mail order from lenscatalogue.co.uk.

And I know this sounds completely loopy, but I've just spent several nights sleeping with a strip of clingfilm over my eyes, under a sleep mask. It's been working really well, too. I still wake up and reapply the gel, but not as often as I was doing. I need to try it for a while longer, but so far, it's working even better than my Tranquileyes.

Good luck. I hope you find some things that work for you.

Lisa

[Smithy K]

Yes I am fair skinned and freckly/dark hair/blue eyes - although not spotty? (only probably before my period arrives).

I had a good night last night - put lashings of Viscotears in before going to bed, then again at 4.30am when I woke up. I also drank lots of water in the evening. My eyelids didnt stick - hurrah! I also do a lid scrub each morning with johnsons baby shampoo/hot water/cotton bud. But I cant see any debri on my lids to scrape off???? My eye lids do get Itchy from time to time and the optician did say that i had blepharitis. when I went back 2 weeks later he said that that Bleph had cleared up???????? I am also starting to wonder whether this is due to my over active thyroid?? as my last btest was quite high???? But I have been on meds for that for 8 years now???

I have made an appointment at the doctors for next fri and will ask/insist on a referral to a specialist - I want some answers. I really cant get my head around the fact that I may be left with this for the rest of my life - I am 35 now.

I also keep getting teary and upset at the moment. Its making me depressed.
But then I tell myself to get a grip. I havent got cancer/heart disease etc etc. I should be thankful.

I am going to have a LARGE glass of wine tonight - and will end up suffering for two days after...but I need one !!!!

Thanks to everyone for reading.
karenx

[acarol]

Yes I am fair skinned and freckly/dark hair/blue eyes - although not spotty? (only probably before my period arrives).

I had a good night last night - put lashings of Viscotears in before going to bed, then again at 4.30am when I woke up. I also drank lots of water in the evening. My eyelids didnt stick - hurrah! I also do a lid scrub each morning with johnsons baby shampoo/hot water/cotton bud. But I cant see any debri on my lids to scrape off???? My eye lids do get Itchy from time to time and the optician did say that i had blepharitis. when I went back 2 weeks later he said that that Bleph had cleared up???????? I am also starting to wonder whether this is due to my over active thyroid?? as my last btest was quite high???? But I have been on meds for that for 8 years now???

I have made an appointment at the doctors for next fri and will ask/insist on a referral to a specialist - I want some answers. I really cant get my head around the fact that I may be left with this for the rest of my life - I am 35 now.

I also keep getting teary and upset at the moment. Its making me depressed.
But then I tell myself to get a grip. I havent got cancer/heart disease etc etc. I should be thankful.

I am going to have a LARGE glass of wine tonight - and will end up suffering for two days after...but I need one !!!!

Thanks to everyone for reading.
karenx

Ya you definatley deserve that glass of wine..
It makes me depressed too at times. What really gets to me is one day can be fine and then the next bad even though my routine wouldn't have changed. Its so variable.

Its bit strange the Optician told you that the Bleph had clearned up after 2 weeks - i've been told that Bleph is usually a life long thing that you have to keep under control through warm compresses and lid hygiene.

[Smithy K]

By the way, my boyfriend was working with a chap this week and just happened to say that i was suffering with an eye prob..dry eyes etc, and he said that his wife had done and that it was very very common in women, and that she had had a small operation and she is now back to normal??? I AM INTRIGUED...I WILL LET YOU KNOW WHEN I FIND MORE INFO OUT?

Probably she had plugs ??????

[acarol]

Oh please do keep us informed....

[Smithy K]

Sorry not much info off bfriend. Or probably her Hubbie doesnt know much...but he said she had a blocked tear duct, and they un blocked it and now she is fine???????????????????????????????????????????? If only it was that easy .. :O)

Just thought of another thing, a couple of months back my top long eye lashes started bending outward rather wonky !!! Thats when my eyeslids must have started going to pot !

[acarol]

Oh right - at least she got it sorted out anyway. Wish we could!
I think inverted eye lashes is a sigh of Bleph.

[Smithy K]

I went to my GP on Friday - waste of time. She was a "its only Dry eye" type of person - just prescribed what I am already using - Viscotears. I asked whether seeing a specialist would help and she said no, they would only say the same - she didnt even look into my eyes at all.

So for the time being I will battle on - I have had a good 5 days, although today my eyes are stinging for some reason - usually after a couple of days in the outdoors, then sends them into rebound a couple of days later - I am getting to know this pattern now !

Still no sign of letting up - I just tried putting two cucumber slices on lids - very cold - not sure whether this is a bad or good thing but it really made the eyes water and freshened them up (couldnt hold them on for long mind).

Bye for now
Karen

[skygoddess]

The eyelash may be a sign of overpopulation of demodex mites.
Try tea tree shampoo.