Dry Eye Patient
Hi Rebecca
I came across this site when searching for information that would help me with DES. I have been struggling with getting decent medical help here in the UK and finding eye drops suitable has been through my trial and error, rather than medical expertise. I have valued this site for the information shared by you and the members. It seems far more treatment options available in the USA.
I think there should be a dry eye clinic in every city and not just New York!
Best wishes
Posie
Dry Eye Patient
Hi Paint Girl,Originally Posted by paintgirl
I too am a Paint Girl, actually I'm referring to my very small company, I am, or was an artist, until dry eye reared it ugly and painful head. But, I love people and thought I'd join the group. We're all in this strange challenge and we can learn from others. To that end, I'd like to recomment a 12 year old book by the M.Ds., Marc and Michael Rose, in California. The book is:
"Save Your Sight," and covers many eye ailments, including severe dry eye. Dr. Marc Rose, actually called me after writing him for a recommendations of a dry eye specialist in Michigan. He was very helpful, and recommended additional supplements specifically for dry eye, including Viva Vitamin A drop. He says I should see improvement in about 3 months. I'll let you know. In the meanwhile, stay well, safe, and we'll "talk", I'm hoping
God bless
Virginia Woodworth
Last edited by Virginia Woodworth; 23-Mar-2010 at 09:48. Reason: to add date: 3-23-10
Dry Eye Patient
Hi Virginia-
I'm a long time dry eyed gal. I also live in Michigan, but on the southwest side. I've been to the little berg of South Lyons. There is a drug store there that compounded my serum eye drops I had made at U of M.
I'll be seeing you here. Lucy
Don't trust any refractive surgeon with YOUR eyes.
The Dry Eye Queen
Hi, PaintGirl.
I'm also in Michigan. I hope that you keep us up to date about how your treatment progresses. Best wishes to you!
--Liz
Dry Eye Patient
First Timer....
Hi, my name is Dave. Screen name SuperDave because thats what the kids around school call me. I am a teacher/coach at the High School level. The kids think I look like a super hero in my goggels that I have had to wear dailey for the last 2 years. They have adjusted well. They have seen me go from walking into walls and doors to actually taking off my googels for a few minutes every now and then. Kids adapt well. I am a ex-pro athlete and very successful coach. I am very independent, a lone wolf type. So this experience has taken a toll on me to say the least. Ten Doctors couldnt tell me anything. My school libraian diagnosed me. Or at least cared enough to do some research and called her eye doctor son who dabbles in problem cases and refered me to someone who could help me. Its lonley out here isnt it? I beleive in this site. I have been reading and learning how to handle my situation from all of you out there. Please keep the good stuff coming. There are probably many more site stalkers out there benifiting from you than you realize. I have taken so long to write because I am still so confused about so much. It has been hard to get a handle on any one thing because the variables seem to change so much. I know that I have chronic severe dry eye. I dont know if there are any other problems. I have 4 plugs in and do restasis and just started oasis tears plus this past week. I have done many other things but have found my only improvements have come when I started my less is best theroy and quit putting so much into my eyes. By improvement I mean I can drive short distances and and have some of my independence back. Its also not so horrible to go outside. My whole story is much too long to tell here. But I will make an effort to give back to you what I can by replying to some of the postings that come up. Let me be clear though about one thing...My story is a success story!...I have come from misery and thought I would have to retire on disability to enjoying the little things like the 2 minutes my eyes stay open when I take off my googles and the colors are so vibrant and details jump out at me. Happy to be here!
Hi, SuperDave.
Nice to meet you. I'm sorry that you're sharing the struggle that many of us face, but I am glad that you made it here. Rebecca is a lifesaver for so many of us.
I hope that you find support and information here that continues to help you.
--Liz
Dry Eye Patient
Hi all,
it's quite lucky for me to find this website as I don't think there is this kinda of forum in china. I got dry eye problem right after my lasik surgeon in March last year in washington DC and came back to china last summer for work. I am still trying all kinds of overcounter eye drops that my friend help me shipping all the way from the states. Yeah, it is a life altering accidence. And I am an architect, my job is drawing in front of computer all day long. But i do belive there are lots of patient here using computer for living as well. So you can do it, I can do it too! it's quite depressing that the reason why I am doing lasik is to correct vision and toss away the glass, now the situation is just getting worse. but now, I start accepting the reality. People get troublesin their life. which more important is how you deal with your troubles... anyway, lets cheer up and make things better and better.
frank.
Dry Eye Patient
...'Eyelid Sticking to Eyeball' (lol)
Dry Eye Patient
Hi I am a new member. I am an UK optometrist studying for a diploma in Independent Prescribing and one of our lecturers recommended this site.
Dry Eye Patient
I started suffering from Recurring Cornea Erosion in Oct 2009. It started after my puppy scratched my cornea. Started treatment with artificial tears and nightly ointments, went on to anterior stromal puncture and debridement, bandage contact lens, and different combinations of all them. Finally I had laser surgery and so far I am doing well. My doctor thinks that either punctal plugs or restasis would be helpful to me (to keep good lubrication at night).
I have found a lot of good information on this site (my wife found it shortly after my diagnosis) that has helped me ask my doctor good questions and to find good products. Thanks to everyone who has contributed here!
Dry Eye Patient
My name is Paul, i live in the suburbs of Toronto, Canada.
About 3 mths ago I decided to have Refractive Lens Exchange surgery to correct fairly bad astigmatism...they opted to do monovision.
Things havent progressed very well...the distance vision is fine, but i cant read anything without reading glasses 3 ft from my nose!!!!!!!!!!!
Anyways...one of the big issues is dry eyes... apparently it is contributing to SOME of my vision problems. Im have been using Restasis (it causes burning of the eyes!) for about a week. I got it for free from my DR. They apply to get it from the States...its free.
I use "Refresh" tears like they are going out of style...Costco has the best price!!
By the end of the day my eyes are toast...like gravel in the eyes!!!
Two mths after the intitial surgery, I went back and had laser correction on my (left) close vision eye.....still no improvement and the dryness is worse in my left eye now.
Im now at a loss for what to do other than wait for improvement from healing...
Thx
Brooklin
Dry Eye Patient
Brooklin, did they give you a trial of mono-vision with contact lenses before surgery? They could have and should have.
The RLE is something they also do for high myopes. I had Lasik 10 years ago and in all liklihood, this would have worked better. They are doing different things now for high myopes and people with high astigmatism.
I wish you well. I am curious as to the cost of the operation. Would you mind PMing me if you don't want to post it here. Thanks, Lucy
Don't trust any refractive surgeon with YOUR eyes.
The Dry Eye Queen
Dry Eye Patient
Newbie
With 6,700+ vieers of this forum and only 101 posting here, where are the odds that the site is really being used by the masses?
I am a 71 year old American retired in the Philippines for some 6 years. I have warn progressive eye ware for some 31 years and the pair are 15 years old and the local eye test shows little change needed.
I am not happy with the local services being given for my eye problems!
I DO NOT understand how ~~sticky tears~~ (internet research term used, therefore NOT "dry eyes"), leads to the forum for ~~DRY EYES~~?
So far, I have recieved two different liquid drops with no benifit. Another time, three drops which included two ointments 3X a day and a liquid in the morning and an nightly oral pill.
So far nothing has removed the ~~grit~~ JUNK, (sticky tears??), in my eyes that I put up with ALL DAY and PAINFULL!!!
Therefore, trying to find what type of service I should expect for such a condition?
BTW, across the counter eye drops helps the condition, but only last a short time, sometimes only 5 minutes, before JUNK forms again during the day.
If my quest for information is better servered elsewhere on the site, PLEASE MOVE.
B-Ray
It seems like we're growing in leaps and bounds lately - several new members almost every day. I hope you are all able to find helpful information here and on our main site at www.dryeyezone.com.
I am curious to know how you are all finding Dry Eye Talk. For example are you searching on a dry eye term and the bulletin board comes up... or are you finding us through the dry eye zone or dry eye shop... or seeing links on other sites... or?
Dry Eye Patient
I'm very excited at the moment for two reasons!
Firstly, I found this forum! It's so nice to read other people's stories and know there's a community out there that understands what I'm going through. I actually know nobody else with dry eye and as all of you know it's a very difficult condition to explain.
Secondly...I've found the whole grail (and hopefully just not a dry eye induced mirage of one)...an opthamologist who actually seems to care and know what he's doing!
I've been suffering with dry eye and blepharitis for 5 years. Went to a public sector opthamologist and got shrugged shoulders and a bottle of artelac. My eye drop collection has grown into an impressive arsenal since then! However, my eyes have been getting progressively worse, and the doc had no recommendations except use more drops. At the moment I use them every 10 minutes or so.
They got so bad recently that I could no longer read...a bit of a nuisance when I'm trying to write my thesis!Desperation led me to a private opthamologist and I'm kicking myself for not splurging on a third opinion years ago.
My new doc's attitude was 'that's pretty severe; but don't worry we'll sort it'. He used more eye tests that I've seen in my life; diagnosed an underlying condition; and told me the drops I had been told to take before were actually aggravating this condition! Within half an hour he had a treatment plan for the next 9 months. I'm not expecting miracles but I've never had a treatment plan before!
Sorry for making you read such a long post...I just couldn't help myself!
Last edited by Súil Eile; 25-Aug-2010 at 20:49.
The eye altering, alters all - William Blake
Dry Eye Patient
What was the underlying condition that he diagnosed?
I'm very excited at the moment for two reasons!
Firstly, I found this forum! It's so nice to read other people's stories and know there's a community out there that understands what I'm going through. I actually know nobody else with dry eye and as all of you know it's a very difficult condition to explain.
Secondly...I've found the whole grail (and hopefully just not a dry eye induced mirage of one)...an opthamologist who actually seems to care and know what he's doing!
I've been suffering with dry eye and blepharitis for 5 years. Went to a public sector opthamologist and got shrugged shoulders and a bottle of artelac. My eye drop collection has grown into an impressive arsenal since then! However, my eyes have been getting progressively worse, and the doc had no recommendations except use more drops. At the moment I use them every 10 minutes or so.
They got so bad recently that I could no longer read...a bit of a nuisance when I'm trying to write my thesis!Desperation led me to a private opthamologist and I'm kicking myself for not splurging on a third opinion years ago.
My new doc's attitude was 'that's pretty severe; but don't worry we'll sort it'. He used more eye tests that I've seen in my life; diagnosed an underlying condition; and told me the drops I had been told to take before were actually aggravating this condition! Within half an hour he had a treatment plan for the next 9 months. I'm not expecting miracles but I've never had a treatment plan before!
Sorry for making you read such a long post...I just couldn't help myself!
Administrator
Hello and welcome! Glad you're here (though sorry you need to be). I'm so glad you've found a more sympathetic, confident doctor. That's such an important step.
Rebecca Petris
The Dry Eye Zone
Dry Eye Patient
He reckons I probably have allergic conjunctivitis, which has been reacting to preservatives. His approach is to start treatment again from scratch. Currently I'm taking Vividrin for the next 3 months (and switching to SDU versions of everything). His hopes being that changing the ph balance of my eyes may help reduce the levels of bacteria. So in November he's going to take another look, see if the conjuctivitis has settled down and see if there's anything else lurking behind the scenes.
He's not convinced at all by the general 'blepharitis' diagnosis, but wants to treat one thing at a time to eliminate possibilities. I like his attitude so so far so good!
Last edited by Súil Eile; 26-Aug-2010 at 12:12. Reason: Spelling
The eye altering, alters all - William Blake
Dry Eye Patient
Thanks Rebecca! I'm trying not to get my hopes up too much, but it's nice to see a bit of light at the end of the tunnel...even if it is a bit blurry.
The eye altering, alters all - William Blake
Dry Eye Patient
Sorry, hit the enter button twice. Kind of hard to see the screen today. The irony of the best information being in a format that challenges dry eyes has probably occurred to everyone here ;-))
Cheers,
Polly
Last edited by FearlessTearless; 30-Aug-2010 at 01:15. Reason: Oops, hit the button twice.
Dry Eye Patient
After I edited my repeated post, the other one disappeared? I am not so good at this!
I found the site in a search for 'dry eye diet', after the ophthalmologist suggested eating more walnuts. I was curious if walnuts were better for eyes than the fish oil I already take on the suggestion of my rheumatologist. I also eat ground flax seed if anything I am cooking will suit it. And yes, I eat all varieties of nuts.
After I found the site, I proceeded to challenge my dry eyes by trying to read everything at one sitting! This site is such a great resource, Rebecca, thank you.
I looked at the forum and found the questions and answers useful and the people polite and friendly (not as common as it should be), so decided to apply. Thank you for accepting my membership.
Cheers,
Polly
Dry Eye Patient
Hello everybody ... glad I've found you. I'm not sure whether what I have been experiencing for the last 3 weeks or so is "dry" eyes or something else - but I just wondered how safe it might be to be using Polyethylene Glycol "tears" very frequently (at least every hour) throughout the day ? - I'm having to do this just to get through at the moment!
Sorry if this is a silly question - and I know lots of people here are probably having to use far more serious stuff - but I don't want to make things worse than they already are!
Dry Eye Patient
I've been told by one of my doctors that when using artificial tears that often, it is best to use preservative free ones. But my case (post refractive surgery) may be totally different than your situation.
Administrator
Welcome GT43, and Perception.
That's true for everyone. Not all preservatives are equal (benzalkonium chloride for example is harmful even if only used a couple times a day on a regular basis, while preservatives used in artificial tears are considerably less toxic) but nobody should use a drop hourly that's got a preservative. - Now I know some will disagree but there is plenty of reason to believe that too frequent dropping can be harmful in itself even without preservatives. It's good to get some additional tools in the arsenal for managing eye pain/discomfort from dry eye.
Rebecca Petris
The Dry Eye Zone
Dry Eye Patient
Yeah - it really doesn't seem sensible to be using so much. But this problem has really only happened in the last 2-3 weeks, and it's only through reading posts here that I've wondered whether it might be DES, so I started trying a few things. I bought Tranquileyes and raided the chemist for over-the-counter drops ... both of these help, the artificial tears in particular - but only if used frequently. That's what's getting me through the day at present.
I have an eye hospital appointment coming up next month - I had thyroid eye disease a couple of years ago and, having gone the two years of being more or less OK after the usual chemo, I think they are probably going to say it's resolved and discharge me - I suspect they're going to be dismissive of these new symptoms even though, in their way, they're causing me almost as much trouble at the moment!
Sorry if this is a total novice question then - what sort of drops are OK to use? If any ... ?
I started using the drops yesterday, and to be honest was expecting them to have little or no effect. The fact that they have helped quite dramatically, is a bit of a revelation, so I haven't done much research yet into what's best to use: I just hit the chemist and bought three different sorts!!!
(sorry not to be able to quote from reply - haven't worked out how yet)
Last edited by gt43; 16-Sep-2010 at 13:06.
Dry Eye Patient
Ah! Just found the Lubricants FAQ ... will read ...
Administrator
Best of luck with your appointment. What kind of symptoms are you having?
Rebecca Petris
The Dry Eye Zone
Family member, friend or advocate
gt43:Oh no, we don't tolerate this kind of dismissal any more in UK eye clinics. Hopefully things are better this year, the information is available to them in recent journals and NHS doc websites have dry eye treatment guidance. There is no excuse for discharge without treatment or advice, or ignoring it until it's chronic inflammation, as they used to. Especially not in London. Especially not when you have to use drops every hour.I have an eye hospital appointment coming up next month - I had thyroid eye disease a couple of years ago and, having gone the two years of being more or less OK after the usual chemo, I think they are probably going to say it's resolved and discharge me - I suspect they're going to be dismissive of these new symptoms even though, in their way, they're causing me almost as much trouble at the moment!
Search on dry eye in NHS websites, print out clinical guidelines if needed. Make detailed notes of symptoms and self-medication, stress how it affects your life. Any probs, you can ditch 'em and move on to a sympathetic doc through Choose and Book with your GP. There might be someone better at your current clinic you could request personally through Appointments. Maybe even ask the optometrists which ophthalmologist interested in dry eye.
Best wishes for finding a wonderful up-to-date ophth. with good follow-ups. Private message me anytime if you want to chat about local NHS.
Last edited by littlemermaid; 17-Sep-2010 at 11:32.
Paediatric ocular rosacea ~ primum non nocere
Dry Eye Patient
Thanks, Rebecca.
What I’m left with after the thyroid eye disease, are eyes that tire easily, and are are sometimes a bit sore. They can be quite uncomfortable in the mornings: the right one, that was the worst affected, is quite often hard to open (not gunky, but sore and draggy); it takes that eyelid a while to “get going”.
To help with that, I occasionally tape or bind my eyes shut at night. My eyelids close fine, but somehow no longer have that comfortable feeling of being securely shut. I’ve noticed that as I begin to relax, a gap sometimes appears in my closed eyelids. I get the impression that my eyelids are looser-fitting than they were before – although not to any degree that registers with the ophthalmologists.
I have a little blob of excess conjunctiva in my left eye that never goes away. It's a nuisance outdoors in windy conditions and makes that eye run. I wear sunglasses in anything brighter than overcast conditions and have an impressive set of eyebags but other than that, compared to how it could be, I think I’m lucky.
That was how things were until about three weeks ago when, I woke up one day with eyes that were very sore indeed, damn sore, and red like beacons. I thought I was having a bad day, or else had some sort of infectious conjunctivitis, but there was no gunk. The outside parts of my eyelids were fine, just puffy.
This went on for several days. My conjunctivas were very swollen, my eyes streaming, and worst of all, my vision was shot to pieces. To say I struggled at work is an understatement, and I bought a sports visor to enable me to watch TV at home – the living room lights were agony. I wore sunglasses at work. Nothing had been this bad since the TED, which had started almost exactly like this, so I worried that it might come back.
Thinking about it, my eyes had been getting progressively sorer over the previous weeks, which had been a difficult time, and stress of any sort seems to go straight to my eyes now. And I’d been working intensively on the computer, trying to finish stuff for work.
The blob of conjunctiva in my left eye swelled partly over the bottom lid, and a similar blob appeared in the other eye. Blood vessels in the left blob burst repeatedly over the next few days – as soon as it started to get better, it bled again, so I looked like I had a pool of blood in that eye (sorry for gory details!).
Reading all this back, I’m wondering why I didn’t do something about it sooner, but I suppose that, having put up with quite a lot with the thyroid thing, maybe my idea of what to expect from “normal” is a bit skewed. I also didn’t feel great in general, and probably wasn’t thinking straight.
I had no idea what was happening, thought maybe I was overtired. I got some earlier nights and bound my eyes closed at night (slight improvement). I started to look around on the Internet, but, not finding anything specific that sounded like what I had, assumed it was nothing major and would probably go away.
I eventually went to see my GP, who was sympathetic, but gently pointed out that she isn’t an eye specialist. I looked some more on the Internet, began to wonder whether, as this didn’t seem to be about to go away on its own after three weeks, I might have developed DES, and bought some Tranquileyes. I got eyedrops, not expecting either of these things to work, but thinking that, if they did, it would tell me something about what was wrong.
And in fact .... things have been improving for a couple of days – I haven’t needed to use the drops so much today. Tonight will be my third night with the Tranquileyes, which I think have made the most difference. Not the most comfortable things, but more than worth it for the improvement!!
My eyes are more of a normal colour, although I think most people would still say they look sore. My conjunctivas are still very swollen and hot, and I now have a twin “blob” in my right eye. Vision is much better, although not back to normal. I’ve been very down about the whole thing, but today I felt able to go upstairs to the tea room at work – I’d been avoiding meeting anyone other than my immediate colleagues.
I’m sure this isn’t an infection. Equally, I’m almost certain it’s not an allergy. I think (fingers crossed) if it was the thyroid thing, I’d have other symptoms by now. My gut feeling, partly because of the way I felt generally just before this developed, is that it’s another autoimmune thing – but that’s just how I feel about it, and I could be wrong. If I get stressed or upset or a bit overtired, or if I do more exercise than normal, my conjunctivas swell and my eyes get a bit red – but nothing like this has happened before.
I apologise for a marathon post – it’s just that I have no other way to describe it, than just to describe it!
Dry Eye Patient
[QUOTE=littlemermaid;55931]gt43:
Oh no, we don't tolerate this kind of dismissal any more in UK eye clinics ... QUOTE]
Thanks, Mermaid. : )
I think I'm lucky(!) in that I was treated at a major specialist eye hospital. I can't really complain about the treatment for the TED - OK, I detested taking the drugs and no idea what effects that will have in the future, but I have a (comparatively) great cosmetic result, which in part I have to thank them for (the other reason being, apparently, that I have small eye sockets, which did not allow the eyes to move forward as much as they might otherwise!!). I couldn't have eye irradiation because (apparently, again) I have very fine optic nerves which wouldn't stand up to it well. I changed hospitals from one that routinely uses radiation as a primary treatment - they were insisting I must have it, but hadn't spotted that at all.
My only complaint, really, is a typical one for the NHS - the senior consultant is great, she knows her stuff - but I see a different student every time I go, and some of them are more understanding/interested/just better doctors than others. The clinic is always full to bursting, consultations invariably rushed to a few minutes and I guess that, once they decide that they've cured you, they just want you out the door! Oh, and once they put that yellow stuff in your eyes and you can't even see them, it's very hard to argue!
Thanks for the suggestions - you're right, we shouldn't put up with it.
Last edited by gt43; 18-Sep-2010 at 05:04.
Family member, friend or advocate
Warmest hugs for a very difficult time. What worked for us recently: 'I am Mr/Ms [consultant]'s patient. Don't you think s/he would want to check this now it's worse?' This implies the scary consultant had a special interest in you and they better not muck up. I innocently say to someone new 'We have history with Mr/Ms [consultant or your favourite clinician]but I don't know what's in the notes about it', ie not much probably. Then, hopefully, they nip out and get them from down the corridor and you get a better assessment and decision. A relief to see someone you know and like, even for a quick look.
See what Rebecca says about symptoms. Sounds like you needed to go back to [major specialist eye hospital] when it looked bad. GP could have 'phoned them up for you. Or 'phone eye specialist nurse helpline.
Lord, I know it isn't easy, especially when you feel terrible and need help. I am so sorry that you are suffering and hope you have a very kind and useful eye appointment.
Paediatric ocular rosacea ~ primum non nocere
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