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Hi fellow sufferers - my story

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  • Rebecca Petris
    replied
    Hmmm.... I looked at the article and couldn't find this (but if it does say something like that it's a mistake). You're doing the right thing! I think most of us do top lids only though both contain meibomian glands.

    One of the things I like about Dr. Latkany's book is it gives clear instructions and diagrams for lid care. This is an area it's hard NOT to be confused about as there are a lot of conflicting, and confusing, descriptions out there.

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  • stella
    replied
    Lid care question??

    Why do we need to massage bottom lids only??
    (Have just read that in "dry eyes for dummies") when we have ,I understand 50 glands in the top eye lid
    I think I have been doing the wrong thing as i have been squeezing the TOP lids between finger and thumb sideways
    (cant be done top to bottom) I must say it gave me temporary relief and i often did it a lot during the day to ease prickling and burning
    Have i made things worse i wonder?
    Sorry i am sooo dumb
    Any comments ?
    Stella

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  • shoemama
    replied
    Stella

    I have tried most things that u have. Have DES since 2004. An alternative to a boiling pot of water are the facial steamers u can buy at most department stores (here one can be bought at wal-mart for about $30 in the pharmacy/cosmetic dept.) The temperature is regulated so there is less chance of scalding from water/steam that is too hot. If this works for u, great--never did for me though. Don't discount lid scrubs. It took me 2 plus years to do these with a product called "Lid Care". The first 4-5 days my lids were very irritated but after that everything started to lossen up. I now swear by them. I also did the Q-tip/saline/baby shampoo route. Found this messy and not too helpful, but of course everyone is different.

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  • skygoddess
    replied
    Stella,
    Do you wear nail polish? I have occular rosacea and blepharitis, but the one thing that sends me over the edge is wearing nail polish.
    It must be from touching my eyes since my toes seems just fine .
    I know it seems like a long shot, but I wish I had realized it was a problem sooner than I did.
    I thought it was all was make-up related, but now I can even wear make-up again

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  • stella
    replied
    steam continued

    Thanks again Ian
    Will try that - though one cant have open eyes with that method and I think it has helped at least to sooth the eyes allowing steam into them ,& who knows it may even help keep them moist!
    Also I just feel the eye lid edges prickle and itch a lot - so the steaming of the open eye method will get to the eye lid edges and the tiny ducts better than the closed eye method. Who knows - we can just go on experimenting and sharing experiences and tips - you feel less isolated and can learn a lot( Just learned the other day we have approx 50 tiny glands in upper eye lid and 25 in bottom lid-amazing!)
    Wish someone had a cure mind!
    Im still hoping 6 months down the line that mine was due to over- use of antibiotic drops (3 weeks in all) containing the dreaded BCC/BKC + antihistamines orally for 5 weeks
    combined, because of a viral infection - wrong treatment altogether(just goes to show the importance of correct diagnosis in the first place)Also Im told that a viral infection of the eyes can go on for months
    Anyway I keep hoping that the whole balance of the tear thing will rectify itself if I take the oils orally and do the hygiene and lubricate-not excessively I understand as that makes your own tear mechanism lazy
    I am a firm believer that the body can and does rectify itself in time in most conditions
    Sorry for those who have had years and years of suffering
    Management then becomes the main thing
    Maybe I too will have to "manage" this condition for ever but hope springs eternal
    Cheers
    Stella

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  • Guest's Avatar
    Guest replied
    Stella

    Another alternative to your steam could be using a rice bag (heated in the microwave with a cup of water) so it is not as dry.

    Before placing this on your eyes, place a warm, wet, face flannel over your eyes (I just fold it in half) then put the rice bag over the top of it.

    It seems to generate a lot of steam and I find it very effective.

    Hope it helps

    Ian

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  • stella
    replied
    steaming the eyes

    Thanks Ian
    Its useful to know there is an independent occular surface specialist in Edinburgh
    I live in Northern Ireland but would take a trip anywhere to get first class advise if I needed it - I must say this site is brilliant ! Thanks Rebecka for all your hard work and dedication
    I wanted to share with readers that steaming my eyes has I think significantly helped - Its early days yet but I feel a difference
    I was having problems - dry rice bags did'nt suit and wet face cloths/none fleecing eye make up pads, soaked in hot water was messy and my eye lids were drying out and getting sore After treating them I use Vasaline intensive care hypoallergic face CREAM (not vasaline the greasy stuff)on the lids, being careful not to get it in my eyes ,or even on my eyelashes
    I now use a basin of boiled H2O from kettle ,wrap a clean towel round the basin and up to my whole face - making a sort of funnel and steam for 5 mins One advantage is you can open your eyes(only once it cools a bit ) and steam your open eyesThis I have found bennificial especially last thing at night Then I do the massage thing which is easier because the lids are wet(Ialso squeeze the lids sideways-I note your point Ian about emptying the glands -but I do find that is easier than pressing against the eye ball]
    I would often do that during the day too just once or so if the lids start prickling and it can ease things temporarily
    Anyone else out there steam their eyes ?
    I hope it cant do any harm? OhI forgot to say I use celluvisc at least 3 X a day (especially at night)I get that on perscription on NHS
    I sent for theratears - the viscous one but did not find it as good as celluvisc
    Cheers
    Stella

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  • IanJ
    replied
    Hi Stella,

    I know all about the supermarket lighting, computer monitor brightness problem.......my eyes for a while were hyper sensitive also.

    Just about 2 years ago I began to get eye problems....NHS gave me artificial tears....nothing else. Suffered that for about a year then went on the hunt for non-NHS care....found a dry eye specialist in Edinburgh....David Crystal.
    David gave me a thorough eye examination and asked lots of questions about life style etc. Then he told me I had Blepharitis & evaporative dry eyes....which was blocking my glands. He showed me photos of my eyes and I could see the problem for myself. He told me how to do the eye massage thing...but get this, he also said don't do it too much or too heavily as you don't want to empty the gland sack every time....there'll be nothing left for the eye! A return visit 3 months later and more photos and the glands were clear.

    David also told me to use eye drops first thing in the morning whether I felt I needed them or not.....it's all about hydrating the eyes and setting them up for the day ahead.

    PS. I do the yawning thing as well......usually in the car on the way to work...:-)

    Ian.

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  • Rebecca Petris
    replied
    Originally posted by stella
    I found an optometrist in UK called Matheson on the net who sells them.
    They were the first to import them to the UK. I think they're available elsewhere now too. By the way, Mathesons are good optometrists - as regards knowledge and helpfulness with dry eye, at least based on the reports I've heard from many patients over the years.

    Regarding Theratears, like most drops it's worth a try I think that a common reaction to them from users on the board is that they like how they feel but they do not last very long. Anyway, hope you find them helpful.

    Also cant use any eye make up of any kind
    You may want to search the board - try a search on 'mascara' or 'makeup' and you'll find several threads discussion dry eye friendly makeup brands.

    I find the eye lids dry out terribly with all these hot compresses
    What kind of compress are you doing? Washcloth, rice bag, other? You may want to try something else... anything that is irritating your lids is probably not great long term.

    I just use hot water on Q tips
    Suggestion - you may want to try saline instead of tap water. Safer, less irritating.

    Leave a comment:


  • stella
    replied
    Theratears

    Hi readers
    Think I'll give the theratears a try since Toril and Prattstar seem to think they are OK.--Thanks for replies
    I found an optometrist in UK called Matheson on the net who sells them.
    They claim -- I quote --
    To contain a patented electrolyte balance that accurately matches those found in the human tear film
    To promote epithelial recovery(I take it that means of the eye surface)
    To restore conjunctival globlet-density
    To restore corneal glycogen levels
    To provide CUMULATIVE long lasting relief
    Non of the other occular lubricants make these claims so why not ??
    I'll let y'all know if I have good results
    Any of you gals out there find shampoos/hair colour goes for your eyes ?
    I look like i'm going deep sea diving when I wash my hair
    I have to wear swimming goggles - dare'nt let any hair products near my eyes Also had a problem with dandruff which i understand goes with the old blepharitis
    Also cant use any eye make up of any kind - cant even use most face creams I use all E45 products for hair and skin which are totally hypoallergenic
    I find the eye lids dry out terribly with all these hot compresses so I use a vaseline cream on them(Taking great care not to get it in my eyes)I certainly would not dare use eye lid scrubs - I just use hot water on Q tips
    Is'nt life complicated!!
    Bye for now
    Stella

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  • Guest's Avatar
    Guest replied
    Stella

    I wasn't aware that you are in the UK. There are a few of us from the UK here.

    The steroid I was referring to is a pres free Mimims brand - Dexamethazone or there is a prednislone (??sp). You can get both on NHS prescription.

    Unfortunately, we don't have a lot at our disposal here in the UK, it is a lot of trial and error (on both your part and that of the DR).

    I haven't had a bad experience with the NHS just a typical one - as sazy says they offer you artificial tears that you have already tried and very little else.

    If you haven't tried plugs yet, maybe that is a step to discuss wth your DR. Just be persistant, I know it is difficult when you are feeling weather beaten already but you need to be very active in your treatment plan to get anywhere here.

    I like Theratears and brought a shipment of them back from Australia as they are much cheaper there. It seems quite comfortable on installation and doesn't cloud your vision. I use it most of the day and first up of a morning.

    Take care

    Ian

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  • sazy123
    replied
    It is hard to get good specialist treatment /follow up here in UK. National health service is bargain- basement stuff
    (forgive me any UK readers who differ in opinion)
    I had to pay to go privately to see ophthalmologist so am unlikely to get follow up - unless I am prepared to go on a years waiting list or pay again
    The optician I go to is very good but obviously cant prescribe drugs
    Hi im from the UK. And yep i totally agree with you, doubt youll find any UK person on here that doesnt!
    All the NHS will give you are artificial tears, which you can get yourself and have preservatives in them and plugs which fall out! but thats the NHS for you.

    I found the private eye doctors not much better regarding this matter, they will give you steroids and cost . But thats my experiance 3 of them, if you find a good one please let us know
    Last edited by sazy123; 14-Mar-2007, 15:07.

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  • Toril
    replied
    Hello, Stella!

    I use Thera Tears lubricants now and then. It's one of the better lubricants I've tried (when it comes to how comforable they feel in the eyes). They are not very long lasting though (and the Thera Tears gel is for night time use).

    You can read more about them here: www.theratears.com

    I don't know where you can buy them in the UK, but in Norway I get them via mail from Denmark ( a company called AMWO Aps,...their e-mail address is info@amwo.dk


    Greetings from Norway, Toril
    Last edited by Toril; 14-Mar-2007, 13:15. Reason: typing mistakes

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  • stella
    replied
    Thanks for your encouragement

    Thanks for your reply to my first ever posting
    I will try rice bags - wet compresses are so messy - especially on vacation.
    I will hold the steroids in reserve - just in case it becomes intolerable
    It is hard to get good specialist treatment /follow up here in UK. National health service is bargain- basement stuff
    (forgive me any UK readers who differ in opinion)
    I had to pay to go privately to see ophthalmologist so am unlikely to get follow up - unless I am prepared to go on a years waiting list or pay again
    The optician I go to is very good but obviously cant prescribe drugs
    I am quite hopeful I can manage it and your reply gives me more hope -Thanks again
    Stella
    PS have you ever heard of "theratears" as an occular lubricant ?
    They claim to be unique - something to do with maintaining the osmotic pressure in the eye I also think they have omega 3 in them
    I found them on the net - have'nt sent for them though

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  • Guest's Avatar
    Guest replied
    Stella

    There is a preservative free steroid drop available in the UK that comes in vials similar to your celluvisc, I don't know if it is available in the US, just ask your pharmacy or DR.

    I support Neil's advice about BAK/BAC, although I am grateful that I don't have the first degree experience with these products that Neil does.

    Celluvisc is a rather thick drop and does blur the vision on installation, there are countless others to try (you could request a sample of Dwelle/Dakrina off this site) or countless of other flavours available at the pharmacy, an absolute must is to go with those that DO NOT CONTAIN BAK/BAC.

    Sounds like the compress is doing you some good, have you tried a rice bag - simple, cheap to make, very effective.

    For an added comfort, I put a wet face flannel on my eyes before I put the rice bag on, it makes it very steamy rather than a dry heat.

    it is my understanding that not all steroids are the same, I would discuss any concerns you have with your DR. My steroid program was supervised by my DR with regular testing to monitor my progress.

    Most importantly, hang in there, it does get easier to manage, control and you will learn to get this under control.

    All the other things that you are doing sound positive. Stick with what works for you.

    When you get a mo have a look around the site, as Neil says, there are lots of suggestions here.

    Regards and welcome!

    Ian.

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