Painful 3.5 months and counting

[Emmsy555]

I'm bawling as I'm writing this, so I'm sorry if it's less than coherent. I started wearing contact lenses at 14 and wore them constantly (hardly ever using my glasses) until about 22. Then I only wore them on the weekend (the joy of working at home, I could look like a slob). Now (age 25), I began to lose the ability to wear them. My eyes would get red and dry within minutes of putting my contacts in. I told my optometrist and he suggested trying a new brand. Ugh, if I only knew. I tried a new contact, it felt horrible. This time though, when I took the contact out, that dry, irritated, painful burning wouldn't go away. My eyes have been constantly scratchy, burning and painful. I bawl all the time thinking that this will never go away.

I've been to 3 ophthalmologists thus far. I've had a shirmer's test (I know it's unreliable, but I was told they weren't dry) and a tear stain test (I was told all the layers were in tact). So, I've been told by doctors "Some people are OCD and imagine pain." and "Some women don't take life well, like when a woman breaks a nail and cries, keep your chin up" or "Nope, there are no tests for dry eyes, and even if there was, what would be the point?" I've gotten 3 separate prescriptions for restasis, despite saying I was already on it.

I'm supposed to start graduate school for (and this is fun) VISUAL arts this September, and I have no idea how I'm going to get by. My eyes are veiny, burning, scratchy and painful constantly. Artificial tears (and I've spent about $300 on eye goops) do nothing for me, and I only use preservative free. My eyes also turn bright red if I attempt to use a gel or ointment. It's only been 3.5 months and I'm cracking up, I don't think I can live with this.

Thank you for listening to my rant.

[Debk]

Hi there. I know that this is all very upsetting, and in the beginning, when we don't understand at all what is going on, it is so frustrating too.

I have been wearing contacts since I was 11. I initially had gas perms because my eye doctor thought the rigid contact would help slow down the progression of my prescription.(I guess it didn't work because I am -7.5/-8.0 )
Anyway I switched to soft in high school and had been wearing them 16 hours a day up until one year ago. (that is 20+ years of soft contact wear) I woke up with a red, bloodshot area in the corner of my eye.

My doc gave me lotemax, and it all went downhill from there. My eyes got very red, and preservative free artificial tears (I have tried them all) did nothing or made the redness and irritation worse. One doc gave me an ointment for nighttime use and my eyes were even worse the next morning.

To make a long story short, I was finally diagnosed with ocular rosacea. I was pulled off of everything and told to do cold compresses. My redness went down substantially. Right now I am at the point where I am just trying to manage this condition and figure out my triggers. I wear my glasses most days, but sometimes wear contacts for a few hours. My eyes are super sensitive to everything....even shampoo fumes in the shower (not getting it in my eye, but just the scent in the air) can set me off.

I am not saying that you have the same condition, but I see that you are experiencing some of the same things that I was.

I know it seems so depressing right now, and believe me I was there. But this forum has a lot of wonderful people and although it might take a lot of trial and error, you will be able to get a handle on what works for you.

[Emmsy555]

Thanks for replying. I'm really feeling like I'm at my wit's end. The dry eye zone has been somewhat of a saving grace, someplace I could know that I'm not alone in this.

I wish I could figure out what my triggers are, but my eyes hurt 24/7. I hate waking up in the morning because my eyes feel so sore and scratchy. Cold compresses are the only thing that bring any relief, and even that isn't great.

How long did it take before someone diagnosed you with ocular rosacea? I've read that 20% of people with it show no other signs, and thus, dr's are very slow to give a diagnosis. I should add that I have that burning, soreness, pain and veins, but I don't have other symptoms people are saying. I don't have photophobia, or mucus strings in my eyes, or a "glued shut" feeling or "sand in the eye" sensation. However, the pain is still bad enough that I spend nearly all of my day under a cold compress. I can barely do anything.

The most frustrating thing of all is that no doctor has taken the time to listen to me. I've felt belittled and pushed aside. I probably sound quite melancholy, but this is really wearing me down.

[Rebecca Petris]

I am so sorry to hear what you're going through.

I think that your very first step might need to be getting a doctor who has some sympathy for dry eye symptoms. It sounds like you've had some on the opposite end of the spectrum. Eye doctors who "get" dry eye pain are, unfortunately, a scarce commodity! Anybody got suggestions in her area? I think we have a lot of members in Massachusetts.

Crying is making your eyes worse as it just washes everything good out of the normal tears you have. Doesn't help to know that, does it? I'd urge you to talk with your GP about considering short term depression treatment.

How often are you using artificial tears? From what you're describing I'm wondering if you're substantially over using them and leaching the surface of the eyes. Also bear in mind that while preservative free is safer than preserved, it doesn't make it work better. You need lubricants that lubricate well. And as you've found, drops aren't necessarily the best pain management tool. Have you tried goggles at all yet?

I'm concerned about the gel and ointment reaction. One possibility you should consider is autologous serum eyedrops (drops made from your blood). These are often a good solution for people who get reactions to other substances going in their eyes.

From the pain description, I do think that the others' tips about ocular rosacea are worth checking out. It seems to be a common factor amongst many members here.

[Debk]

I was diagnosed with ocular rosacea about 9 months into my eye problems by the third opthamologist (Dr.Latkany) that I saw. I think that my ocular surface was so red and irritated by a combination of the sensitivity to the drops I was using (even though they were preservative free) and the leaching effect that Rebecca mentioned.

I was initially told that my eyes were red because they were dry, and that I needed to "lubricate, lubricate, lubricate".....which I think led to leaching.

On a side note, aside from very veiny, red eyes that burned, I didn't have any dry flaking skin on my eyelids or anything like that. I also do not have facial rosacea.

[Emmsy555]

Maybe I'll mention that (ocular rosacea) to my next ophthalmologist, whomever and whenever that will be. I'd never considered the "leeching" thing, but that is definitely possible. I've tried scaling it back with the amount/times I use artificial tears, but that doesn't seem to make a difference.

I just want to get this under control by September for school. I have considered trying the goggles, I mine as well at this point, it's worth a shot.

Thank you for being so understanding. I know that crying only makes my eyes burn worse, but the outlet of emotion is sometimes worth it. I can barely keep my anger in when I'm treated like a "silly little girl," I mean, it's infuriating.

[Rebecca Petris]

I can barely keep my anger in when I'm treated like a "silly little girl," I mean, it's infuriating.

Totally understandable. Just a suggestion: Ophthalmologists are in general not touchy feely people. More like numbers nerds. Try printing and completing the OSDI form - this is a handy little questionnaire which is a scientifically validated instrument. They can't brush it off. Do this whenever you go to an eye doctor and ask them to put it in your medical record. Also to reduce the stress of the appointment, consider summarizing your concerns and goals for the appointment in a 1-page fax to send them before the appointment. Helps them prepare and keep things focused - on YOUR needs.

[Jumpy]

Anakinra

Hi, Emmsy555, I really feel for you, I couldn't stop crying either! My situation went from bad to worse and nothing seemed to work. VERY long story short, by the time it got to the worse stage I had uveitis, blepharitis, and conjunctiveitis as well as glaucoma! I was seeing Dr. Rhee for Glaucoma he suggested Dr Dana who is a dry eye specialist at Mass Eye and Ear, Boston. He has developed a new drug to be marketed as Anakinra [Kineret]. I just started my 4th month on it and my eyes are so much more comfortable, I can sleep without goggles but still use night time gel. I was using mouisture chamber sunglass all the time and now don't remember to put them on unless it's really windy. I still can not go into malls but I find some stores are OK now. So it seems to be working!!!! I am weaning off steroids drops, down to every other or every third day for the Uveitis, and I take 50mg of antibiotic daily, also rice bag or facecloth compresses am and pm. and preservitive free refresh. So far so good!!!!!! I wish you luck with this struggle, not many people or Doctors understand what your going thru.

[rooneyandfergie]

Hi Emmsy555,

I am actually the same age as you and my problems started after a bout of contact lens wearing and prolonged computer usage. So i guess i am in a pretty similar situation as you. I have blepharitis, glaucoma and what i believe to be dry and red eyes. I totally understand the frustration you're going thorugh as new sufferer as i only had this for six months myself. I'll tell you my experience. Hopefully it helps you.

Firstly, you didnt really describe where you feel the pain. Is it in your eyes or around your eyes? How bad is it? Pain in the eyes can be a sign of a more serious problem or a referred problem. Referred problem meaning that even things like sinus or certain headaches can cause pain in the eyes.

You need a new doctor as well. A doctor that doesn't understand the pain you are going through clearly isn't a very good one. My blepharitis wasn't picked up until quite some time and after i changed doctors. Instead of totally relying on the diagnosis of the doctor, you should try doing warm compresses and lid scrubs for some time to see if there's an improvement. Even if you dont have blepharitis, many people find relief from eye discomfort with warm compresses. Some people feel it soothes the eye.

Underlying blepharitis can cause intolerance to contact lens which is what you experienced. Artificial tears help only to a limited extent if you don't treat the blepharitis by keeping proper lid hygiene. In addition, not everyone with blepharitis will present with a red eyelid rim. I have the 'dandruff' kind that doesn't have very visible inflammation. It can be missed out sometimes. In addition, you should try taking omega 3 supplements. It helps stabilize the tear film, reduces inflammation and improves the Meibomian gland function.

Restasis will usually take a few months to start working properly. During the meantime, you can get the doctor to prescribe you some steroidal eye drops to keep the inflammation in check first so that you don't 'fail therapy' with Restasis. It is important that you can get checked for any possible sign of glaucoma before you start using steroid eye drops and use it only short term. Mention any family history of glaucoma to the doctor.

I don't know if your eyes feel red and dry in the morning. Some people are unable to close their lids fully when they are sleeping. This causes increased evaporation of the tear film. You can apply some Genteal gel to the eyes to keep the eye moist while you are sleeping.

As for the veins that you have, there are some amazing posts on the forum with Dr Latkany where he mentions the possibility of anti-vegf therapy in the future. It could be a possible method of reducing the redness and new blood vessels that have grown in your eyes in the future. Quite obviously you should lay off the contact lenses for a while. Prolonged use of contacts could lead to corneal neovascularization, a serious condition that could affect the vision.

I hope you feel better soon.

[spmcc]

Killing two birds with one Omega 3

I saw on the news recently (June 21, 2010) that a study out of Montreal showed that Omega 3s can help with depression (without anxiety). Here's a link: http://www.sciencedaily.com/releases...0621111238.htm.

Anyway, I upped my Omega 3 intake to ~1000mg per day (the dose the researchers studied). I'm hoping to kill two birds (dry eye and depression) with one stone!

GOOD LUCK!

[Emmsy555]

Thanks everyone I appreciate all your support!

I have pain pretty much 24/7, usually at it's worst in the morning and evening, but it's never gone. I've tried taping my eyes shut, using gel (my eyes turn red), using night time masks, etc. None of that has helped, and I've tried them longer term, not just once. I also already take omega 3's and flax seed oil, I have for months without a difference. I also clean my lids with baby shampoo and use hot compresses. I think I'm running out of things I can do at home. The pain is all in my eyes, not around them. The burning and stabbing pains are too much. Steroid eye drops control it, but my eye pressure goes up far too fast to use them much. No ophthalmologist has seen anything "wrong" with my eyes thus far, just telling me it's a "comfort" issue. I'm sure many of you have felt the same yearning to smack him/her across the face.

More than anything I want a good doctor, someone who will listen and at least test my poor, dry eyes give me some hope. I know there is no cure, but controlling the pain is all I want right now.

My GP is trying to get me into Mass Ear and Eye soon, I just worry that I won't be able to handle grad school without something to comfort my eyes. I'm nervous and scared.

Oh, and there is no way I'll ever touch contacts again, even if this eventually stopped, I decided that months ago. Vanity isn't worth my health.

[magoo]

Emmsy, I'm so sorry you're going through this terrible ordeal.
I have read here that baby shampoo isn't the best thing to use for lid cleansing. I have used Ocusoft lid scrubber pads and like them a lot. Perhaps others have some ideas about lid cleansing products that might be better than the shampoo. I was thinking... could you possibly even be allergic to the shampoo?
Maybe try warm compresses, not hot? Or even just cool compresses for a little while, just to see if that helps.
I found, for myself, that using the least amount of drops in my eyes as is possible is best. It seems that the more drops I put in, the more irritated my eyes get.
And crying.... I suffer for 2 or 3 days after I cry so I really try not to, but I know what you mean that sometimes it helps let off steam.
My best wishes to you. Hang in there and try different things, one day something will give you relief.
Lynda

[Jumpy]

steamer

Hi Emmsy and all, When I was at my worst with the pain etc. I bought a small facial steamer and used it to get my eyes open in the morning and again if the pain got to bad during the day. It worked for me, adding mouisture without touching my eyes or skin, if you try it, be very careful because it is hot and you will have to keep a suitable distantance for comfort. I couldn't leave the house at this point anyway! My Doc frowned when I told him and he told me to go back to compresses, he feels I needed the weight of the rice bag or cloths for the glands. I see no reason why I can't do both if needed but for now my eyes are close to normal so I have gone back to compresses in the morning and always forget in the eve.
I called Mass Eye and Ear myself to make an appt. and then called my GP for the referal. Good Luck I hope things improve soon, I know what you are going thru.

[Emmsy555]

Thanks again for all of the replies.

I just got back from my 4th ophthalmologist. I was super desperate so for now I just took whomever could see me today (I'm going to be going to Mass Ear and Eye soon). I was now told that I have *very severe* dry eye, while less than a month ago my last doctor told me it was mild. She said my TBUT was 4 seconds. She couldn't give me as a reason as to why my eyes are, just said they were =/. I asked if it had to do with my meobian glands (spl?) but she said that that wasn't it. She gave me plugs (I've had them before, they did nothing for me). She said that beyond restasis there was nothing else for me.

I don't think I'm allergic to the baby shampoo, it hasn't made things better or worse and it doesn't hurt/sting or anything while I'm washing.

I just wanna break down again. You guys are all very strong for getting through this, I want to just curl into a ball and quit.

[Jumpy]

Emmsy I felt the same way and I kind of did curl up in a ball for awhile. My GP wanted me to try anti depressants but I said I had a reason to be upset, I was losing my vision! I couldn't drive or read... that was Feb./March and things have turned around. Everything is better, my tests today show my sight returned to 20/20!!! My pressure is stable for 2 months. Don't give up, try as many Doc as needed and do what they tell you. I would think to myself, this doesn't work and quit it! I now follow thru at least till my next appt. You will get better! Hang in there!!