In search of help - my story of sudden severe dry eye, all sorts of weirdness

[BrianH1982]

Hello everyone,

I'm happy to be here, and have spent some time perusing your stories and experiences with this horrible dry eye disease stuff. I wanted to tell some of my story, because frankly there is a lot of weirdness involved, I think, and I'm hoping to find someone who has experienced some of the same weird things or can just help me out, even if it's just with moral support.

I know the exact day this all started. August 1, 2016. That probably seems not long ago to some of you, but for me, it's been like an eternity. I woke up that day and within an hour or so, my left eye went extremely blurred. I assumed it was a migraine, until it lasted for days, and then weeks. After procrastinating for almost a month, I went to a doctor and an eye doctor. I got new glasses, and that was it.

It didn't help. Not even a little. I was in misery every day, working 11 hour shifts on a computer as a designer/copy editor at a newspaper. I could only see reliably out of one eye, and had no idea what was wrong. I'll cut short some of the middle ground here and tell you - I've now seen five different eye doctors and a cornea/eye disease specialist. They've all told me the same thing - there is nothing wrong my eyes. They've all said "you just have dry eyes" and some suggested allergies. The last doctor I saw legitimately told me, word for word, "At this point you need to think about your priorities and spending money trying to find answers. You're just going to have to learn to deal with this."

Uh... I cannot just "deal with this." I've exhausted all of my vacation and sick time at work. I had to quit my second job. I'm drowning financially, and every single day is a miserable struggle. I did explore the allergy route. I found out I'm allergic to molds, pollen, some insects, ragweed. Mold the most severe. Because of how bad my symptoms have been (more on those shortly), I did a rush protocol, which involved 8 hours of shots that would normally take almost a year to get. I've been doing maintenance shots for four months now.

The allergy shots seem to have helped... some. Not a lot. Since starting them I can go a week or two with almost no issues, and then I'll be right back where I started. My symptoms ONLY AFFECT ONE EYE AT A TIME, and it randomly switches eyes. Usually it's my left eye, but sometimes midday my right eye will develop the symptoms and my left will clear up. It's bizarre. Here are the things I'm experiencing:

-- One eye slightly blurred, making it impossible to focus (I assume from inflammation)
-- Eyes feeling sticky
-- Pain, mostly my eyelids and corner of the eye
-- Foreign object feeling in my eye
-- Itchy eye somewhat, not as frequent as most say if they have allergies
-- Discharge
-- Cloudiness or a film over my eyes after I blink
-- Eyes completely lose ability to focus, resulting in basically having to go to sleep no matter what time of day
-- Swollen eyelids

I wake up every morning with my eyes barely able to function until I take a shower and put some kind of drops in. At that point they are almost always fine until later in the day - my symptoms get SIGNIFICANTLY worse throughout the day, and get very bad by evening time. This doesn't work well for me, since I work 1 p.m. until midnight. In the past week I've missed work twice, and I've had to go to bed at 8 p.m. multiple times because my eyes have just given up for the day. Some days I wake up and one of my eyes is swollen about 50% shut, and stays inflamed most of the day.

I don't believe this is fully allergies (the allergist doesn't either). I sort of believe it's just dry eyes, but the issue is figuring out what's causing it. I've tried dozens of eye drops, and Retaine and TheraTears work the best, although TheraTears makes me sticky a lot, which is a feeling I hate. I just started using Systane nighttime gel, which is weird but a great feeling at first. I'm doing the allergy shots, taking allergy meds, and regularly taking Ibuprofen to try to limit inflammation. I am also taking Flaxseed Oil pills and have recently started drinking a ton more water. I use a steroid cream and lotion around my eyelids to help them when they are dry or sore or flat-out painful. I'm trying anything to help.

One thing I don't see often when reading about dry eyes is people experiencing symptoms only in one eye at a time. This fact has baffled every doctor I've seen, too. Has anyone experienced that? I see a rheumatologist in June (I've been waiting MONTHS for this appointment), as I have a family history of autoimmune diseases and I have several symptoms of Sjogrens (namely weird rashes all over my legs and feet that again have baffled every doctor, including a dermatologist). However, I did get a full blood work panel done when this eye stuff first started, and nothing out of the ordinary showed up. I can't count on this being autoimmune (not that I want that, obviously).

I'm just kind of at a point where I could use some help staying positive and find some more steps to take. I can't really do a humidifier or dehumidifier - if it's allergies, one will make it worse, but if it's just dry eye caused by something else, the opposite would work. I've had a ton of eye tests, and they actually found no signs of chronic dry eye, so nobody is taking this seriously enough to actually do much to help me (no offer of punctal plugs or other options).

Sorry this got rambly. I'm sure I missed a lot, too. This has been an absolutely miserable experience, and it's destroying my quality of life and greatly affecting my work - I'm at a point where I legit don't know what to do, because my eyes just don't function well enough some days to actually look at a computer screen (I have an anti-glare filter on my work PC at least).

I know many of you know, but I can't stress enough - whatever this is and whatever is causing it, and days where it's bad, it is 100% debilitating. Once my eyes start clouding (again, only one at a time thankfully), I'm done for the day. Nothing can counteract it. Eye drops will clear them for a few seconds, and then it's right back to where it was.

If you've made it through this, thank you. I look forward to hearing some other experiences and maybe getting some treatment ideas or support going forward. This sucks.

P.S. Nice to "meet" you guys!
Brian

[Dryeyekami]

Hello Brian and welcome. I too am a newbie having recently been diagnosed with mgd. You say you have dry eye. Have you been told what's causing this? Mgd? Aqueous deficiency etc?

[BrianH1982]

Unfortunately, no. None of the doctors I've seen have seemed to be interested in actually finding the cause. I'm hopeful a rheumatologist will find something. I'm seeing my family doctor again next week and going to try to push him to do... something. Anything.

[PhoenixEyes]

-- One eye slightly blurred, making it impossible to focus (I assume from inflammation)

I was told by an ophthalmologist that we need a moist smooth surface on the eye to see a clear picture, so dry eye itself can cause blurred vision.

When you say you had a lot of eye tests can you remember what they were? E.g. schirmer for basal tear volume (paper strip under the eyelid), tear breakup time (I think they just look via slit lamp with fluorescein dye to see dry patches on the eye) etc.

-- Eyes feeling sticky
-- Foreign object feeling in my eye
-- Discharge

Maybe ask an ophthalmologist to check if your meibomian glands are functioning correctly. Near the base of each eyelash you have a pore from which each meibomian gland produces oil, that oil should come out smooth and fluid so that it can spread across the eye and provide a oily protective layer that keeps moisture in the eye longer. If the meibomian glands are dysfunctional the oil can be too thick. It clogs up in the pores, sticks to eyelashes in strings etc.

Also I read that the whole "sandman" for sleep thing comes from how dried bits of meibomian gland oil can be like little sand crystals. It's normal to have a little but if you have a lot I think that can contribute to a gritty foreign object feeling.

http://scienceline.org/2012/02/the-s...strikes-again/

-- Pain, mostly my eyelids and corner of the eye

Inner or outer corner? At the upper outer of your eyelid under the eyebrow there is the lacrimal gland which produces the necessary basal tears to keep the eyes wet. For the doctor to check them they have to lift / invert your upper eyelid and ask you to look down. In my case the lacrimal gland suffered scarring due to toxic epidermal necrolysis.

The inner corner would be your punctum / tear duct where things drain out. Could have an eye doctor check them for irritation.

One thing I don't see often when reading about dry eyes is people experiencing symptoms only in one eye at a time. This fact has baffled every doctor I've seen, too. Has anyone experienced that?

Both my eyes always have problems due to the severity of the trauma but one eye is certainly worse than the other at different times. One eye can also react more to certain things than other e.g. only my left eye went blood red due to hyperaemia side effect (excess of blood in the vessels supplying an organ) from an eye drop medication. I think that eye has more meibomian gland issues since I've seen the oil get caught on my eyelashes and pull up in strings.

Keep looking for answers, best of luck.

[BrianH1982]

Talk about some great information. Thank you! My problem is I knew nothing about dry eye before seeing all of these doctors, so I asked none of the important questions and got none of the important info.

Ive had the paper strip test. The flipped eyelid and looking down test. Probably a half dozen different scans using machines. The search for dry patches. Everything came back normal. None of the doctors found anything. All five have said I have dry eyes, but have also said they found no dry patches or signs of chronic dry eye.

If what I'm dealing with isn't chronic, I'd hate to know what is.

I am nearing the emergency point of making an appointment with Mayo Clinic. I'm tired of the half-assed answers and lack of help. I need legitimate help or I'm not going to be able to keep my job much longer. I'm tired of being miserable every single day. I'm going to see my regular doctor next week, I may go see another optho soon now that I know some things to ask, and then a rheumatologist in June. From there... I don't know.

[Dryeyekami]

The only thing I can think of is that your aqueous tear component is fine. But your lipid component may not be. Surely these docs should have told you why you have dry eyes?

[BrianH1982]

The only thing I can think of is that your aqueous tear component is fine. But your lipid component may not be. Surely these docs should have told you why you have dry eyes?

You would think... except not one has. The best they've done is said allergies could be a factor but aren't the entire cause... and that's it. I'm not kidding when I say the last doctor I saw - who was excellent despite this - told me I was just going to have to learn to deal with this and stop spending time and money looking for answers.

With all of the tests he did I assume he ruled out everything you guys have mentioned. He, like everyone else, had no answers. I don't particularly want to go to a sixth eye doctor just to do the same tests and hear the same thing... but I'm wary of Mayo because of cost. What if I go there and they say the same thing?! Or say that it's just allergies, which I frankly don't believe.

All the doctors I saw mentioned autoimmune diseases, but nobody went further than saying "this would make more sense if you had X or Y."

Mom had Lupus. Sis has fibromyalgia. I have a lot of symptoms of Sjogrens, but as mentioned in my first post, I've tested negative in all normal blood work previously for autoimmune stuff.

Argggh. It's maddening.

[PhoenixEyes]

With all of the tests he did I assume he ruled out everything you guys have mentioned.

Like dryeyekami mentioned it sounds like they've perhaps ruled out the aqueous deficiency (basal tear) side of things but maybe not the lipid layer which is maintained by the meibomian glands. I think they just press on the eyelid and tell you if the pores are secreting fluid oils or if they appear clogged and secretions are thick. There's also a scan called a meibography where they can see if any glands have atrophied but I think that's rarely done as not many places have the expensive technology.

http://www.dryeyezone.com/encyclopedia/lipidlayer.html

Meibomian gland dysfunction is sometimes thought of as a major component of dry eye so worth asking an ophthalmologist whether they're functioning correctly.

In the meantime you can try warm compresses at home using a linseed/rice/grapeseed eye bag you heat in a microwave for a short duration and leave on your eyes for 10 minutes. These can be bought off Amazon or over the counter. It's typically the first thing they suggest for MGD (meibomian gland dysfunction). Their goal is to soften the oils with heat so they can flow more.

You can also try cleaning the eyelids with wipes / scrubs such as Occusoft which are also available on Amazon or over the counter. I think the goal there is to clean off any crystalized bits of oil, dead skin, bacteria etc.

[farmgirl]

Seriously, learn to deal with it, wouldn't you just love for him/her to crawl into your skin for a day or two or three. Don't give up, and don't learn to deal with it until you at least have some answers. I have Sjogrens among other things but my blood work is perfectly normal as it often is with Sjogrens. It was diagnosed with a lip biopsy. It left me with a small numb spot on my lip but was a small price to pay for an answer. It is easier to deal with the beast if you know what that beast is.

There is a Dr. Steven ****** in Tampa. Fl who has worked wonders with many, just read his reviews. Rather than the Mayo Clinic, I would head there if it is within the budget.

Above all, keep hunting and don't give up. This website holds a wealth of information.

Stay strong....Cheers....F/G

[BrianH1982]

Seriously, learn to deal with it, wouldn't you just love for him/her to crawl into your skin for a day or two or three. Don't give up, and don't learn to deal with it until you at least have some answers. I have Sjogrens among other things but my blood work is perfectly normal as it often is with Sjogrens. It was diagnosed with a lip biopsy. It left me with a small numb spot on my lip but was a small price to pay for an answer. It is easier to deal with the beast if you know what that beast is.

There is a Dr. Steven ****** in Tampa. Fl who has worked wonders with many, just read his reviews. Rather than the Mayo Clinic, I would head there if it is within the budget.

Above all, keep hunting and don't give up. This website holds a wealth of information.

Stay strong....Cheers....F/G

Thank you! Tampa would probably be out of the budget but at the end of the day could be cheaper than Mayo... Just a much longer drive.

If I may ask, how has being diagnosed with Sjogrens changed things for you? Are you able to contain symptoms decently now? I highly suspect that's what's I have based on my family history, rashes, eye symptoms, neuropathy issues, etc, but I guess we'll find out in a few months for sure.

[PhoenixEyes]

Seriously, learn to deal with it, wouldn't you just love for him/her to crawl into your skin for a day or two or three.

If only there was body swap technology like in science fiction films!
I'm sure it'd be much easier to diagnose stuff if the person experienced it themself, though I bet no-one would step up again to volunteer after trying it!

Hope you find an answer soon Brian, keep in touch on how things go.

[farmgirl]

I think that the important thing is that at the end of the day the results would be better with Tampa. I think you would have to plan on staying a week or so to complete the examination, tests and treatments if any are offered but heck, why not make that your next vacation destination.

Mine was not quite as straightforward as just Sjogren's but the Sjogren's exacerbated things. Mercifully my Sjogren's is the mild kind and I do not require any treatment for it. The Dr. prescribed a mild steroid but if that is to be a lifelong thing I said 'thanks but no thanks'. The things that have helped me most was getting quadra plugged (actually uppers are permanently cauterized), serum drops, and moisture chamber glasses plus drops (all of which I can no longer tolerate). In the end it took a couple of years to get diagnosed and find out what worked. This site was a game changer for me. Hang in there Brian and don't give up until you get answers....F/G

[Hokucat]

Hi Brian. I meant to write earlier. It is indeed frustrating trying to find answers and the right doctors to diagnose you. I suffered for several years and spent thousands of dollars on various specialists and treatments that had little impact. It seemed hopeless because my eyes continued to get worse when I thought it couldn't get any worse, was in debilitating pain, had to quit my job, and no hope in sight. But ultimately I was able to get better. You can too.

My diagnosis came down to my rheumatologist telling me he was 99% certain I had Sjogren's Syndrome, despite extensive tests over four years negative for any autoimmune disease. I agreed (and still agree with him), and asked what the treatment would be. He initially prescribed Plaquenil, a relatively benign drug, but turned out I couldn't take that so the next option was chemo, which only had a 30% success rate for Sjogren's. That wasn't good enough for me to try such a strong drug, plus medication does not usually agree with me, so I knew at that point I really had to change the way I tackled my condition.

I started keeping a daily log of what I ate and drank for breakfast, lunch, dinner and in between, and also everything else I did like medication and eye drops used, hours of using electronic devices, sleep, exercise, etc., and how my eyes or other symptoms felt that day. THE most valuable thing I got from this was fresh lemon juice in green tea daily gave moisture to my eyes, it was almost a complete turnaround for me. Somehow this was what my body/immune system needed. For others it may be something else. Over time, there were other foods and things I identified that helped too, and also what made it worst. This log may seem tedious, but really helped me methodically figure out what helped or worsened my condition in a way the medical community could not.

For background, below is a recent post where I outlined what helped me recover and manage my condition, and the original post of my journey. I hope this helps give you encouragement you can overcome this. It may just take time to find the things that work for you. You seem like you are proactive and your own advocate, so you are on the right track. Still try to find the right doctor...perhaps reach out in this forum in a new post to ask for doctor recommendations in your area. If Dr. ****** who Farmgirl recommended was not across the country from me, I would totally have gone to him, he is well known in the dry eye community. Anyways, keep asking questions, this forum is truly a wealth of information!

http://www.dryeyezone.com/talk/forum...ccumulate-info

http://www.dryeyezone.com/talk/forum...evere-dry-eyes

[BrianH1982]

Thank you all for the great information. I'm seeing my doctor in six days, and I may call a place in town that claims they specialize in dry eye syndrome. They are just optometrists from what I can gather, but it can't hurt to try them out since they take my insurance.

Slight update, I've now ordered some OverRX Goggles and a sleeping mask from the shop on this site, and I ordered hypo-allergenic pillow cases from Amazon as well. I'm going to try the goggles at home first, since they are going to look hideous, but may end up having to cave and wear them to work. The past few nights here at work my eyes have given out on me by about 9pm (and I work until midnight...), so something has to give.

I'll let you all know how it goes!

[Klee]

Ive had practically all your symptoms. I have mgd causing dry eyes. You also could have the other form of Blepharitis causing your lids to swell. I have mgd/blepharitis. The filmy blurry vision I deal with daily, if your water to oil ratio is off balance your tear film is not as it should be and you will have dry eye. Honestly really research mgd and blepharitis, i think you will see the similarity in your symptoms and how to manage it. Amazeing how inept doctors are on the subgect,also if you have dry eye allergies will make your eyes more irrtated and the symptoms worse. Another sudgestion look all the above up on youtube where doctors and people discuss the subject. My advice go to a doctor and specifically ask them to check for the above mentioned. I had to go to 3 doctors to be disgnosed. Good luck. Also,you can have symptoms worse in one eye then the other and at times in only one eye at a time.