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  • my story

    hello to everyone. this is my first time to post.

    first of all, i would like to say thanks so much to the creators of this website. it's such a tremendous resource. tonight, as i've browsed the site for the first time, it feels like i'm much closer to finding some relief for this thing.

    my hope is that in sharing what's happened to me, you might be able to offer some insight or new approaches to try. so here goes...

    about 7 weeks ago, i woke up with a tension headache behind my eyes and in my temples. my eyes felt swollen, extremely sore, and dried-out.

    i have tmj disorder which causes me to clench my teeth at night. i thought possibly that i could have actually strained the muscles in my eyes as i slept.

    it was an extreme sudden onset. i've never had headaches before in my life. but since that day, i've had a non-stop tension headache of moderate degree.

    the pain got a little worse behind my eyes during the first week. i was nauseated while driving a couple of times. as my eyes continued to hurt and didn't get better, i became concerned that something serious had happened to my eyes...or perhaps even a tumor. i could tell that there was inflammation behind my eyes, in my jaw, and my temples.

    i made an appointment with an opthamalogist who basically told me that my eyes were in fine shape but that i had a dry eye syndrome of some sort. he gave me 'systane free' and told me to come see him in 2 weeks. during that time, i used systane pretty consistently.

    as i used the drops, i really began to notice that my eyes were almost crying out for moisture. immediate relief came as i put drops in my eyes. but the most disconcerting thing about what has happened to me is that the drops felt like they were evaporating out of my eyes in seconds, literally. i tried other drops like 'theratears' but the water-based artificial tears seemed to evaporate even more quickly.

    i saw the opthamalogist again and told him that my eyes still hurt and that they felt bone-dry when i would wake up in the morning. i also told him that i had been living with a constant headache since the initial onset. he suggested 'lacrilube' for sleeping at night and told me to see my GP for the headaches.

    using the lacrilube made my eyes feel better, but when i woke up in the morning my eyes still felt completely dry as if i hadn't even used the lacrilube the evening prior.

    i saw my primary doctor, and he seemed to think that i had a massive allergy attack. he prescribed a 5-day round of oral 'prednisone'. during the five days i was on the 'prednisone', my headaches went away. i could still feel the inflammation in my head, but the steroids were enough to take the painful edge off of it all.

    once i finished the steroids, the pain came back. i called my doctor and he put me on 'prednisone' eye drops which i've been doing for about 3 days now. so far, none of my symptoms have changed. honestly, i was very excited when he mentioned an allergy attack, and it made sense. i have a history of allergies. but when i didn't get better, i started questioning if that's what it realy was. it honestly doesn't feel like any kind of allergic reaction i've ever had.

    i do alot of work with computers in my vocation. now, it hurts to look at a monitor, or to watch a movie or tv. it hurts to use my eyes in general. even though my eyes are very dry in the morning, this is the time of least discomfort for me...this is when my headache is at it's lowest intensity and my eyes don't hurt. but by the end of the night, my eyes are killing me. they feel strained, like they're trying to focus but cannot. this is an enigma to me because i've always had 20/20 vision and still do based on my recent visits to the eye doctor. it feels like i need some glasses, but it appears that it is not the case.

    today, i actually put lacrilube in my eyes during the day. it has been the best day i've had to date. my eyes still hurt and it feels like someone is blowing a hairdryer in my eyes all day, but the lacrilube has much of more a sustained effect...lasted for a few hours today. since the attack, my eyes have also been very sensitive to light, especially sunlight. i'm wearing sunglasses religiously now.

    i'm 33 and i'm worried about the notion of having to put product in my eyes for the rest of my life. i'm worried about my headaches. and i'm worried about what would cause my eyes to stop making tears overnight.

    but i'm encouraged by the fact that i'm not alone in this journey. and i'm excited to be on this site where we can support each other and get some help and share advice.

    i appreciate each and everyone of you who has taken the time to read this (even though it probably hurt your eyes!). any advice, questions, comments, observations, etc., are completely welcome and encouraged.

    i have to fight this thing. i come home at night and have no energy for my wife or kids. this is not acceptible. i cannot accept what's happening to me without resisting it with all the resolve i can muster.

    and if i can encourage somebody with this:

    it's going to be a passion for regaining your life that helps you find your answers. don't give up. i'm a pretty tenacious person when it comes down to it. perhaps it will be one of us that helps find a cure. if not a cure, then at least our shared experiences may help others better manage what's going on with their condition.

    i look forward to hearing back from some of you. take care and we'll talk soon.


  • #2
    Welcome to the site. It is bitter sweet in that we all meet great new people because of this affliction. I too thought my DES appeared overnight. Now that I think back, I suspect it was brewing for some time, and it just got to the point one day that I could not compensate for it any longer. It may have been the change in the weather, it may have been hormonal, who knows. Interesting, about the same time the DES surfaced I had a flare of my severe headaches and neck pain. Call it coinsidence if you will, but I was diagnosed with TMJ syndrome about one month after being diagnosed with DES. I am convinced there is a connection, but have not yet figured it out. I have found some references that suggest DES is a rare symptom of TMJD. I am anxiously awaiting completing treatment for the TMD to see if there is any change in the DES that I might be able to attribute to that. The TheraTears in the bottle did not help me either. However, I have found relief from the TheraTears in the vials, both the liquid and the gel. The gel says it is for use at night. I had the worst night ever using that. I find it comforting when I am having a very bad day. I find the most relief from GenTeal severe Gel at night. The ointments just make my eyes feel more red, dry and irritated. We are all different. Just keep trying different products until you find something that gives you some relief. You might ask your PCP to work you up for an autoimmune disorder or for some other systemic cause of your DES. If you are taking any medications, there are some good posts on this site about those that can cause or worsen DES. Take fish oil caps at least twice daily, cut out caffiene and alcohol, and if you smoke, stop. You will need to find ways to change your lifestyle. I too work at the computer a lot, and have found that I must take frequent breaks and limit the total number of hours a day I spend in front of the thing. I have rediscovered the telephone. It works nearly as well as email! I think the hardest part for all of us to deal with is coming to accept the fact that DES is managed, it is not cured. Keep going to your eye doctor and be an active participant in your care. Find out the cause of your DES so you can learn how best to treat it. And don't hesitate to seek out a second opinion.
    Last edited by kitty; 01-Apr-2006, 22:15. Reason: Forgot something
    Every day with DES is like a box of chocolates...You never know what you're going to get.


    • #3
      Welcome to the party, Brenton ... I guess.

      A couple of things come to mind:

      - The eye doctor told you that your "eyes were in fine shape." Did he do a cycloplegic exam (where they put in drops to dilate your eyes)?

      - did the ophthalmologist evaluate Tear Breakup Time (how long it takes for your tear film to break up/evaporate), Schirmer's (how many tears you make in five minutes), and use either Rose Bengal or fluorescein dye in your eyes, looking through the blue lamp (slit lamp) at your ocular surface afterward??

      - When you say "fine shape," does that mean 20/20 vision, UNcorrected, both at near and at distance?

      - After a day at work--primarily where you spend a great deal of time on the computer--do you have any issues with seeing at a distance ... say: on your drive home?

      - Have you had any sinus troubles in the past? Infections?

      - Systemic Prednisone? Wow. I'm anything but a doctor, but ... this is pretty strong stuff, usually given in cases of systemic inflammatory conditions. Most systemic inflammatory conditions can be verified with blood work like "c reactive protein" and "sedimentation rate." Have they done any blood work yet??

      This sudden onset thing is weird. I would be concerned, too, if I were you. I'd probably ask for a referral to a neurologist just to rule out anything major (as you mentioned).

      You may want to (while you're pursuing this) try the warm compress/gland expression treatment that many of us do to help with meibomian gland dysfunction (use the search function). You may also want to see a second ophthalmologist for a consult.

      All the best,


      • #4
        Originally posted by brenton
        i've never had headaches before in my life. but since that day, i've had a non-stop tension headache of moderate degree.
        Other than dry eye: Sometimes eye headaches can start suddenly due to astigmatism, or when eyes are not working together. Even tho' your vision has always been 20/20, it is not uncommon to develop accommodation spasms when doing a lot of close work. Dry eye can cause lid and corneal edema/swelling, which can also strain the vision and cause tension headaches.

        I agree with others' responses: if you get no relief, go get a 2nd opinion (opthalmologist), go to a regular doctor or neurologist.
        But your symptoms sound like they're due to severe inflammation--the steroids make that feel better. I can't understand the doctor saying your eyes are in "fine shape."

        I also recommend Genteal Gel "Severe" for nighttime instead of the petroleum/mineral oil ointments. Just before you go to sleep, put a bunch of drops in and Close Your Eyes. Your vision with be awfully smeared if you keep them open--the gel feels funny at first and sometime stings--but just keep your eyes closed and try to relax them. In the middle of the night, put in more gel, or put in preservative-free tears if your uncomfortable eyes wake you up. Use a hot, moist washcloth on your eyes for 15 minutes first thing in the morning, and whenever your eyes are feeling awful.

        I sometimes use the Genteal Gel Severe in the daytime, if my eyes are really dry. But I use a smaller amount than at night. It takes my eyes at least 20 minutes before the smeariness goes away, but after that the gel sort of "liquifies" and gives my eyes more long-lasting relief than the watery eye-drops do.



        • #5
          I noticed you guys mentioned neck pain and I will throw my two cents in. Whenever I have neck pain/headaches/sinus my eyes flare up. I find going to the chiropractor for the aches and pains also helps the dry eye. Some connection going least for me.


          • #6
            Originally posted by jcorbett
            I noticed you guys mentioned neck pain and I will throw my two cents in. Whenever I have neck pain/headaches/sinus my eyes flare up. I find going to the chiropractor for the aches and pains also helps the dry eye. Some connection going least for me.
            I suspect stress is a big factor. I know my eyes flare when I am under additional stress, good or bad.
            Every day with DES is like a box of chocolates...You never know what you're going to get.


            • #7
              thank you

              hello everyone.

              thanks so much for the support and advice thus far. and thanks for the inquiries as well. i will try to clarify as much as i can because i'm really interested in what you all have to say. i really appreciate you taking the time to read this. here goes:


              thanks for your response. i have since picked up some 'genteal' gel and i really like it. i've actually been using it during the day b/c everything else seems to evaporate in seconds. my second choice right now is 'systane free' gel.

              please keep me posted on your tmj progress. my initial response to all of this stuff that happened to me was that i had a massive tmj episode one night while i slept and popped some muscles in my eyes. i honestly still haven't totally ruled that out.

              i also can agree with what you said about it only appearing to be a sudden onset. when i had long days on the computer prior to this attack, my eyes would be bloodshot and cranky at nights on occasion...but it was never anything that concerned me or made me think something was wrong. but perhaps these were actually warning signs. i'm honestly not sure. i'm still really puzzled about the sudden onset nature of this. it seems out of the ordinary with most onsets of DES. what do you think?

              as far as the stress factor. it's funny...i've had much more stressful times in my life. i don't feel stressed. my big question is there some inflammatory process going on in my head (tmj or otherwise) that's setting off this dry eye thing. or is this dry eye thing setting off an inflammatory process in my head?

              as far as your other suggestions: i don't take any scripts and i don't smoke, drink alot of caffeine or alcohol. never had lasik. but i do know that my eyes are very sensitive to environmental factors (allergies especially).

              thanks for your response kitty and i'm looking forward to hearing from you again.



              thanks for all of your feedback. when i woke up that first morning, i seriously thought that i had a massive eyestrain. at night, it feels like my eyes are hurting really bad from trying to focus. it's funny though, b/c everything is in perfect focus. my eyesight is 20/20 uncorrected.

              maybe this is another clue. about midday, everyday since the incident, i notice that my eyelids are in spasm when i take the time to close my eyes for a moment. my eyes still feel tweaked, like the muscles are pulled. espcially when i look hard left and hard right.

              it does feel like an accomodation issue to me. if that's the case, is that symptomatic of DES or is DES a symptom of eyestrain? i assume that it can go either way. my eyes hurt much worse at night. and after i've rested...even though my eyes are dry in the morning, there's really no pain or discomfort for the first hour, approximately.

              as far as my eyams. the doctor did dialate my eyes. he also performed a slit lamp exam. he did not do a Schirmer's test, though...which i question. i will probably seek out a 2nd opthamoligist...he seemed to shrug off my questions. actually, my GP is offering much more of an attempt to help me figure out what's wrong.

              i probably misled when i said that the opthamologist said my eyes were 'in fine shape'. what he said was that my eyes looked good...which i assume meant no damage...but he did say that my eyes looked stressed and fatigued.

              i have had sinus drainage and nasal allergies since i was a teenager, but no chronic sinus infections though.

              i plan on doing a full blood work-up and going ahead and getting tested for auto-immune disorders just to be on the safe side. probably an MRI as well. will keep you posted.

              and i'm doing the warm compress/gland expression treatments as you've suggested in the meantime. thanks for taking the time to respond. talk soon.



              thanks for the info. i have been using the 'genteal' severe even in the daytime and have put the lacrilube away. there seems to be alot of advice against using mineral oil/petroleum based products for DES. i appreciate the heads-up.

              i do feel like i have an accommodation/muscular issue...and that it could possibly be the root cause of what's going on with me. what can i do to work on that? i have seen several sites that talk about visual exercise regimens. is that the way to go?

              i'm not certain but...wouldn't the opthamologist have caught astigmatism if i had it? my wife has it and that's what she's been telling me this whole time...that perhaps i need glasses. but i tested 20/20 and he didn't mention anthing out of the ordinary with my actual vision.

              so yeah, i'm really uncertain as to what's going on. still trying to gather info and get some answers.

              i really appreciate the time you took to answer my post. if you have any more thoughts about any of these issues, i'd love to hear back from you. take care and i hope to talk to you soon.



              wow, yeah...i second what you're saying. i've been to a chiropractor, neuromuscular densist, and a kinesiologist. i've been going yoga (which has had a marked effect on the intensity of my headaches and how i manage the pain). and i've been trying to work out on a consistent basis, as well.

              you know it's weird...and i stated this already tonight...but i don't feel stressed out. the kinesiologist told me that some people are just tense for no reason (cat-types). i guess i'm a cat-type, so i'll have to take more time than the average person to keep stress out of my neuromuscular system. yoga has been the best thing for me overall and the most cost-effective as well.

              and even with the yoga, i've never been able to totally relax the musculature in my eyes. they're just locked up.

              with this sudden onset, i'm still trying to determine if DES has set off all of this tension and tmj flare-up...or if something else has triggered this and this DES is an outcropping of some other underlying thing.

              thanks so much for your input. good luck with everything on your side as well.


              thanks again to everyone. i wish you all the best and look forward to the future posts. take care and we'll talk soon.



              • #8

                you wrote "...I have seen several sites that talk about visual exercise regimens..."

                I'm deeply familiar with the Natural Vision Improvement movement--became interested in it in 1999 and worked on that for about 3 years.

                From what I've learned, accommodation stress in adults whose jobs require them to do close work may develop permanent acuity problems (typically mild myopia), binocular focusing problems (one eye may be "doing all the work"). What starts as an intermittent problem can progress to becoming physically permanent. Any imbalance and accommodation stress at the near point may cause headaches and eye aches (which is what I get).

                Some advocate using "computer glasses"--these are simply weak reading glasses (called "plus" lenses) --the kind you can buy in a drugstore for $10-$20--to reduce the accommodation strain. I think this would be a good choice for you--just buy some weak reading glasses (+1.00 or +1.25) and wear them whenever you're at the computer and also when reading.

                The "eye exercises" topic is off-topic for this forum, and we can correspond privately about that ("Private Messages"). It gets into the Bate's Method--often seen as quackery--and today's "See Clearly Method," also seen as quackery by some. Simply put, both methods emphasize relaxing the focusing parts of the eye--which is a good thing. The methods also increase our awareness of how we treat our eyes--and "mistreat" them.



                • #9
                  I tend to agree with much of what Cali said.

                  The reason I asked about a dilated (cycloplegic) eye exam is: if you have a bit of farsightedness, but your accommodative mechanism is taking care of it for you -- especially if you do a great deal of near work, or are approaching presbyopia age (late 30's +) -- you may be feeling the strain of accommodation.

                  Forgetting for the moment that you saw the 20/20 line ... when they dilated your eyes, did they tell you that your refractive error was 0 (you were neither nearsighted nor farsighted)?

                  Either way, a pair of reading glasses for a few weeks sounds like a pretty good idea to me. Blink a ton when you''re on the computer (force yourself) and take frequent breaks.

                  If a few weeks of reading glasses doesn't help, and if your GP doesn't have any good ideas, then I would also recommend seeing a pediatric ophthalmologist. They specialize in alignment/binocular vision disorders that may not show up during a quick evaluation.

                  Best of luck...



                  • #10

                    hey neil and cali.

                    i have a few questions based on your responses.

                    have either of you had trouble with eyestrain or what i've seen called 'computer vision syndrome'? does a significant amount of the DES population correlate eyestrain with onset of DES?

                    i'm wondering if computer eyestrain can bring on DES. or is it the other way around in most cases? or are these traditionally regarded as two separate issues?

                    i honestly still don't know what's going on with me but i'm going to see an optometrist. i'll give the 'computer glasses' a shot.

                    if that yields no relief from the strain, then i'll track down a pediatric opthamalogist based upon your suggestion, neil.

                    thanks again for the advice from both of you. take care and i'll talk to you soon.


                    • #11
                      Brenton-there are several problems stemming from long hours of computer use. Reduced frequency of blinking (direct result is dry, irritated eyes), and the other is accommodation fatigue (computer eyestrain). I think any visual strain can irritate your eyes and irritation aggravates dry eyes. Even though the link may not be direct, they are probably not "separate issues."

                      Everything IS connected to everything else, and the complexity of causes/effects/remedies is difficult to understand. I can think of many factors: the office environment (assuming that's where you're using your computer) is dry; has perhaps pollutants (buildings have been shown to have unhealthy levels of indoor pollution); you're not getting enough variety of physical and visual stimulus to promote eye health; you're perhaps stressed (which reduces your body's ability to regulate and correct for these factors); you're perhaps seeing early signs of presbyopia (not really likely at your age, but possible).

                      The sudden on-set is what concerns you, and I'm sure you've gone the route of "what changed," "what am I doing differently."

                      My experience with computer eyestrain is two-fold. When I am learning new software or concentrating on some particular task, I tend not to blink as much. Then my eyes burn, and I squeeze them, trying to get some tears. BUT--worst of all, I keep going ON and ON, even after I "get the message" that my eyes are getting wrecked. Bad--but like most people, I get drawn in--and have little will-power to stop.

                      Several years ago, when I was finishing my college degree, I experienced the "accommodation" strain. I would spend 10-12 hours at a time writing papers. Then, when I got up from the computer, I couldn't "see straight." Not only could I NOT focus well in the distance, I was actually "seeing double" in the distance. My eyeballs were sort of "locked" in the converging position, and I couldn't relax my eye muscles enough to adjust. It was sort of laughable, really. I jumped up from my desk, grabbed a video that had to be returned, jumped in the car, and "whoa!" couldn't see straight. I had to cover one eye, just to get down the road. This happened several times that semester, and each time I KNEW I was really over-doing it, but just kept on straining my eyes.



                      • #12
                        I like this Cali character ...

                        Yeah, Brenton ... my story:

                        Born crosseyed and very farsighted, but loved to read (well, not in utero, but shortly thereafter!). Fat glasses with prisms, eye surgeries to straighten (three, eventually), but... the focusing muscles eventually developed a deep, deep cramp--like a charley horse behind the eyes. Ouch. Between that and the vision issues (seeing double, blurring), I couldn't work x 5yrs.

                        Eventually, I theorized "ciliary spasm". Based on my hypothesis, a doctor prescribed nightly cycloplegic drops. One morning--some 4-6 months later--I woke up ... no pain ... and much better vision.

                        Did my third alignment surgery and ... back to work. Unfortunately, it was long hours of reading and computer work and the spasm started to set in. We gradually increased the strength and the dosage of the dilating drops, but eventually, specialists said the drops (actually, the preservative IN the drops: benzalkonium chloride) was toxic to corneas. They pulled me out of work and declared me permanently disabled (WOO-HOO!).

                        Thought I'd go live a life hiking, biking, traveling, running, windsurfing, skiing ... whatever ... just no near work ... but then ... severe dry eyes ... likely from the drops.

                        It's very hard to tell with certainty whether what I'm feeling on a given day is accommodative/ciliary stress or ocular surface stuff. I can't use (won't use) the dilating drops any more, and the dry eye stuff doesn't seem to do quite enough, so it's difficult to parse out the discomfort.

                        To Cali's point, though: that protracted computer work CAN and does induce both issues. WHILE you pursue another ophthalmologist (whether pediatric or not), make sure you're doing everything right:

                        Computer Vision Syndrome

                        Good visual hygiene


                        • #13
                          what's next

                          hey guys.

                          thanks for sticking with me on this post. i'm going to see a therapeutic optometrist in the dallas area that specializes in computer vision/strain disorders. Having a few more weeks of good days and bad days has led me to believe that my issues are most likely rooted in an eyestrain problem.

                          i will post back when i've seen the optometrist. hopefully the computer/reading glasses will ease the tension and allow my eyes to rest and heal.

                          i wish i was more knowledgable about what is going on with my eyes. it definitely is an inflammatory condition. it feels like the tears are repressed because of swelling. when i really squeeze my eyes shut, i can get some extra tears to come out.

                          cali, i'm just like you with respect to computers. i'm a film and video professional and i spend most of my time editing. film editing is much different from most computer work because you literally don't take your eyes off the screen for hours on end. i never look away. i never take breaks. i know i don't blink. i'm really intense and passionate about my work and i just get so engaged in what i'm doing.

                          so i've got to modify my work habits. i saw the 20-20-20 rule. and i'm trying to do that. every 20 minutes, look 20 feet away, for 20 seconds. trying to take more breaks.

                          i've also noticed that my life revolves around close-quarters. i'm either at my house or at the office editing. my eyes don't get much of a chance during the day to have longer range distances to focus on.

                          so anyway. trying to take better care of myself and limit my computer time. i'll definitely post again when i've seen the doctor. it may be a week or so before i can get in.

                          and again, i can't tell you how thankful i am to have your advice and input. take care and we'll talk soon.


                          • #14
                            back again

                            hello to all.

                            just wanted to give everyone an update.

                            i had my appointment with the optometrist this week. i really like him. he's a dry eye sufferer as well so he stays on top of the new research and he also is a CVS specialist.

                            anyway, he was able to marry what both the opthamologist and my GP said. It was allergies that put me over the top and caused this dry eye condition. he also fitted me for computer glasses which i will get next week.

                            i'm on allergy drops (patanal) and i'm still doing the steroid drops (pred mild).

                            my tear film breakup time is approx. 5 seconds. i'm doing the warm compresses am/pm, gland expression, eyelid scrubs, artificial tears, and wearing a moisture chamber to bed each night.

                            my focus (not literal!) is shifting now to the inflammatory nature of this condition. maybe it was more dramatic for me than what commonly happens, but i woke up one day and i could tell that my actual eyeballs were swollen. and the tissue around and behind my eyes were inflamed as well.

                            here's where i'm concerned. it feels like the inflammation has 'squeezed' my tear factory out of commission. and when you don't make tears, you're bound to continue to have the inflammation. it's a vicious cycle that is probably never broken for some.

                            i would be interested in hearing what you guys are doing to control the inflammatory element of DES. do cold compresses work? any naturopathic/herbal things working for people?

                            here is a list of things that i've seen so far in the way of natural things to try for DES and natural anti-inflammatory ailments in general.


                            Omega3's - already doing that (3000mg/day)
                            bilberry extract
                            aloe vera
                            cucumber slices on eyes

                            Herbal eye drops:



                            in my particular case, if i can get the inflammation down (without staying on steroids or NSAIDs for the rest of my life), i think i'll be able to get much more relief. even with the steroid/allergy drops i'm still having chronic symptoms including headaches. hopefully the glasses will help with some of that.

                            and if any of this is off-topic, please let me know. i'm new to the forum and definitely want to stay within range and scope.

                            thanks so much for all of the advice and information thus far. looking forward to hearing back. take care.


                            • #15
                              While I believe the Omega 3 has had minimal benefit, the only thing so far that has gotten on top of my severe inflammation is steroid eye drops. I have been on them for 2 1/2 weeks. I dread the day when I have to go off of them. I'm happy to hear that you found a doc that you can trust. Hopefully you will get some relief soon.
                              Every day with DES is like a box of chocolates...You never know what you're going to get.


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