Unique Pattern of Dry Eye for 25 years...

[sixeyes]

I'm a 44 year old woman who has suffered with...I believe...severe bouts of dry eye that coincide with my hormonal patterns. I've had these issues of feeling grit, dirt, soreness, redness and discomfort in my early 20's; desperately trying to see in a mirror what the hell is going on. On the colored part of my eye, if the light was right, I would see these tiny deposits of debris on my cornea that wouldn't come off.
An ENT I worked for was able to see them one day in 1990 and was baffled. His only explanation was that i could have a mild case of dry eye the the mucous coagulated creating these tiny deposits. The pain and discomfort was because they irritated my cornea. He swiped them off with a Q-tip and suggested that's what I do. So, I did...every time I had an episode. This went on for years for days at a time, then I was okay...and in a week or so, it would come back. The Q-tip changed into my finger as the problem got worse as the years went by. The duration became longer and more intense. I could feel okay and out of nowhere, I could feel the pain of these things and was unable to focus on anything until I could relieve my cornea. It was also coupled with grittiness, soreness, burning, constant blinking; the only way I felt relief were to lay still with my eyes closed in the dark.

For the past several years, the episodes have gotten worse. In the morning, I'm fine, but after 3pm into the night, this problem acts up. Since it's not constant, every day...the 2 Opthomologists I've seen have not witnessed the problem, therefore could not formally diagnose me. The other guy acknowledged my cornea is inflamed because I would wake up after a bad night with filmy, clouded vision. He wanted me to return when it was happening...which was virtually impossible because I can't drive with this.

I realized within the past few years the episodes coincide with my hormonal cycle...occurring 3-4 days before I menstruate and ovulate, peaking at the onset and slowly tapering off for the next few days. Between events, it's minimum and I have a few days of quiet. Dry eye seems to fit in every way except the link with my hormones. It's terrible and I'm afraid it will be constant once I go through menopause. Even my eyelids and skin feel "dry" when it's bad. I've used all kinds of OTC drops, changed my diet, vitamins and water intake to make a difference...nothing has helped.

I was able to try Restasis from a co-worker who could not use it because it burned her eyes. I have not had an issue in over a week...it's like a miracle and it made a difference instantly. I have wanted to try this, but I did not have insurance and did not want to pay out all that money for something that did not work. Now I want my own script for Restatsis as I only have a month's supply.
I have lived with this for so long and it makes me crazy because it is agony. Does this sound familiar to anyone?? It can come out of nowhere...and it feels like a needle going into my eye and there are tiny little deposits of something that I can see...only because of the small shadow they cast. Sometimes there's just one and other times, when it's really bad there are like 8 of them. I can push them off, sometimes with great difficulty and I have instant relief, but in 15 minutes or so they're back again when it's really bad. This can go on all night until I decide to go to sleep. It's greatly affected my life...especially in the past several years . Restasis has been amazing, but I have no idea why this is working and nothing else has.


Dani

[wetEyes]

In case you have never been to a dry eye expert, I would advise you to find one and go there. I'm not talking about a normal eye doctor, I mean a true dry eye specialist like Dr. Latkany.

[MCK]

Hi There!

My Dry Eye was also caused by hormones, though induced by Birth Control and not a natural flux in my hormones. For me, getting my cycle back in line is helping things the most, but Restasis has been the magic bullet that maintains my eye health while my body heals itself. You can read my story in Dry Eye Triumphs posted a couple of days ago, because I'm finally starting to feel better.

Restasis can take between 3-6 months to start working at its optimum level, so if you have already started, it would be a good idea to get a prescription and keep using it continuously. DEFINITELY see an eye doctor that is familiar with Dry Eye. An Opthalmologist.

I hope to someday not have to use Restasis any longer, but it has worked very well for me for 3 years, and took about 3-4 months to really get me feeling better.

Good luck!

Molly

[MCK]

Also -- Restasis is an immunosuppressant, so DO NOT put your fingers near your eyes unless you want to deal with an eye infection on top of Dry Eye. Dry Eyes are already prime breeding ground for bacteria, and by suppressing the immune response you are reducing inflammation (and hopefully feeling better!) but leaving your eyes open to infection. Take it from somebody who has dealt with five very painful corneal ulcerations in the past three years -- keep your eyes sterile or you'll regret it.

[ringo]

It sounds like you have the so-called filamentary keratitis that accompanies dry eye--- i have had that for almost 3 years now. It is very painful, and no matter how many strings of mucous you keep removing from your eyes, they keep coming back even tougher.

I have used Restasis as well, it helps clear them to some extent, Muro ointment at night, acetylcystein (orally and topically in the eye), plugs in my tear ducts, etc.

You can read about this condition plenty on the internet. I am surprised that all the doctor has done is to remove the filaments. Did he not prescribe any additional treatment for you?

It still amazes me how indifferent some doctors can be to dry eye patients.

[vman]

cyclic symptoms

Hi there..
I'm a 32yo male, but I too have dry eye symptoms (bleph/mgd-like) that are very cyclic in nature. The cycle is not perfectly regular, but it's unmistakable and with a period of about 2 weeks for me. the cyclic nature definitely makes me think sometimes that there's a hormonal cause. I've even thought about getting hormone checks at regular intervals to see if there's a correlation between the fluctuations and my symptoms (I've had tests of thryoid, testosterone, and others...all my actual levels are normal). not so easy to get a doctor to do such a 'science project'.

vman

[Summer Hater]

Not Unique!

Hi, I have scoured the internet trying to find something that sounds like my problem and it seems as though I may have!
I too get these "attacks" which start with the feeling of having something in my eye and over the space of an hour gets suddenly worse from mildly irritating, to not being able to finish sentences because all I can think about is getting "it" out of my eye. I can't describe the pain to people and the only thing I can do is lie down with damp cotton pads over my eyes and go to sleep. Sometimes I can remove some stringy white mucous from eyes and this is a temporary relief but only sleep makes it go away. (Once on holiday in Turkey a little "crust" of mucous formed on the surface - I was in agony and couldn't even wipe the mess off like normal as my eyes so dry!)
Like you, as I can't drive when I have the problem my opticians and doctors didn't take me seriously until one day I happened to be in town when it happened and so I just sat in my optician's waiting room until they could see me. They took pictures of the eye and said that there was some sort of "debris" over the surface of the eye which was causing the problem and that my eyes were trying to break down. They sent the photos with a letter to my doctor recommending an appointment with a specialist. He was useless and because my eyes were better at the time he didn't do anything.
My own local GP and opticians are far better and at least prescribe me FML steroid drops for when it's bad (I've tried all sorts of other drops, gels and ointments - antihistimine and artificial tears but they don't seem to do anything). But I try to avoid using the FML as much as poss as they say it can cause pressure behind the eye and cataracts. I'm now trying the Optrex Actimist which my doctor said I can feel free to use as much as possible and it seems to be helping but I'll keep you posted.

I'm a 30 year old woman living in the UK and I've had problems with my eyes since I was 16 and studying for my GCSEs. It normally only affects me during the summer months or if I go to certain cinemas or the underground or get dust in them at any other time of the year.
During the summer (and that's from May to September!) I try to drink more water and become tea-total as it seems that alcohol,being too hot or stressed can set it off. Just the other day it came on and the only possible causes I can think of was a lit candle (but this was a big room and not causing smoke) or the fact that I had my period. After what you said about menstrual cycle being a factor I will definitely be diarising my bad episodes so I can compare to my cycle in future - I don't know whether this would be a hormonal or another fluid loss thing but if I knew to prepare my eyes with FML around my periods then that would help.

I'm sorry to give someone with sore eyes such a lot to ready but please let me know if any of my symptons sound familiar to you. Is Restasis only available in America as no-one here has mentioned it to me and are there any side affects with it or can it be used regularly/long term?

[irish eyes]

Hi

My symptoms are not the same as yours but the frustration of trying to get the right diagnois / treatment is familiar.

Restasis is not available in the UK but consultants can prescribe in on a `named patient' basis. In other words - it cannot be prescribed on the NHS because it's not available on the NHS.

I know that some forum members buy it from internet sites and maybe prescriptions are not always necessary. Boots the Chemist came up with the figure of around £950 for 2 months supply - this was 18 months ago. I didn't go ahead with the order - even the pharmacist was shocked at the costs.

It's good that the Optrex is working.

[littlemermaid]

Summer Hater: What the ... Come on UK NHS, we can do better than this. If I were you I would show up at the specialist eye clinic of a regional teaching hospital when your eyes are at their worst, one with nice young 24/7 duty ophthalmologists supervised by a super-consultant anterior segment specialist. There is a GP or optician referral pathway to specialist eye clinics outside their region if they want it. Or you can self-refer by phoning the triage nurse in the eye clinic and saying 'inflammation, severe pain, worried about corneal erosion'. Eye docs treat what's in front of them so don't worry about aiming high if you need to. This would be for a better diagnosis and a regular treatment plan, possibly referred back your local ophthalmology service. You can see how we shop around until we find docs we like to work with long term.

Here's the NHS Choices link to search for your regional hospital eye clinic, or even your local hospital eye clinic (could be same staff on a rota if you're lucky) http://www.nhs.uk/servicedirectories...iceSearch.aspx

Another option is to track down your dream consultant on the internet, probably the same as above, and go private for a better diagnosis: again you need to go looking at your worst - phone their private secretary (who will be very helpful) and they will see you on their private clinic day that week if they are around.

Please tell me your GP is not giving you FML to self-medicate without monitoring the eye pressure and that an ophth is controlling the dose. This is a familiar scenario and it makes me hopping mad. Welcome to PM me if you want help finding regional clinic.

[willwork4tears]

Restasis is ridiculously expensive. I would suggest having it custom compounded at a compounding pharmacy. It would be a lot cheaper than paying retail price for Restasis.

See some of my older posts for more info about compounded Restasis and compounding pharmacies.

[Summer Hater]

Irish Eyes, Little Mermaid and Willwork4tears: Thank you so much for your replies. The Restasis does seem ridiculously expensive - I thought the Optrex actimist was bad at £15 a bottle but luckily I've managed to get some from Ebay for a fiver each as I've been getting through it pretty quickly the last couple of days. My eyes have been pretty bad, making it hard to search through the internet and Little Mermaid if you don't mind giving me some help with names of specialists that would be great - I will take you up on that offer of PMing you separately.

These last couple of days, as well as my eyes themselves, the bones around my eyes have been aching and my TMJ has flared up - not only have I not been able to open my mouth smoothly all the way but I've been getting pain in my left ear and left side of my jaw. As of this evening it has siezed and won't open more than a finger and a half width at all. If you can imagine I can eat with a fork carefully but eating a banana is out of the question!
I first suffered with TMJ some years back and after exercises failed a specialist gave me an injection into the jaw (I'm pretty sure it was some kind of steroid) and the problem went away. He said I might need to come back after a couple of years for a top up. Well I've been through my files so I can arrange the top up and it turns out that this was actually in 2005 and it was around the same time that I first went to the specialist opthalmologist so I wondering if there is a link and google "tmj and dry eye". Guess what, it directs me back to this site (I am so grateful to have found Dry Eye Talk ) and I see others on here have dry eye and TMJ and wierdly the problems seem to focus on the left side which is a bit of a coincidence. Well one lady on here said that helping the TMJ seemed to improve her dry eye so I'll keep my fingers crossed and if another magic injection to the jaw does help my eyes I will come back here and let everyone know.
Thanks again.

[littlemermaid]

Summer hater: So sorry to hear how difficult temporomandibular joint disorder is and hoping you find relief through next visit to the specialist (sounds like you might be slipping through the net, time to ask GP for follow up). I am thinking it's important to type up the eye symptoms and history thoroughly before you attend maxillofacial to ensure a good ophthalmology referral through them, somewhere with optical neurology. Maybe stress how it affects you so they prioritise it better.

Personally I'm a nervous wreck in clinics and have to write everything down, also up to 6 prepared written questions, otherwise I get steamrollered: can a sensible friend go with you to pin this down? Not easy to take notes if you're the patient. It really helps get answers and referrals. Don't hesitate to come right out with the simple questions like 'are my dry eyes because of TMJ?' Maybe ask the easy ones first to get the docs relaxed... Again, self-medicating on FML or Restatis not OK in UK, we can do better. Will PM you.

[irish eyes]

These last couple of days, as well as my eyes themselves, the bones around my eyes have been aching and my TMJ has flared up - not only have I not been able to open my mouth smoothly all the way but I've been getting pain in my left ear and left side of my jaw. As of this evening it has siezed and won't open more than a finger and a half width at all. If you can imagine I can eat with a fork carefully but eating a banana is out of the question!

Hi

I had TMJ disorder several years ago but the `cause' was put down to the referred pain & discomfort I had with my eyes. At the time, I had iritis as well - and the combination of the two was just intolerable. The tension in my face was obvious so it's not surprising I developed this. Not being able to eat meant I lost even more weight.......and I was already too skinny!

I do hope things get better for you. I had several bouts of physiotherapy and of course had to do exercises at home - using lollipop sticks to measure how far my mouth would open. Horrid horrid time.

Take care.