Not a dry eye in the house

September 11, 2015 1:29 PM

'Dry Eye' Has Ruined People's Lives — And Stumped The Medical Community
Some people suffer eye pain so excruciating they feel suicidal, yet ophthalmologists see nothing wrong. Meet the 82-year-old doctor whose radical idea about the real source of this pain is turning heads.
posted by Pfardentrott (42 comments total)

ugh god that headline picture

hashtag: effective
posted by SmileyChewtrain at 1:34 PM on September 11, 2015 [1 favorite]

hashtag: effective

Eyes are the only thing that really give me a super-strong body horror reaction. I had to nope out of this article pretty quick because I'm at work and I was going to start flailing at my seat and everyone was gonna look at me and wonder why I was shooing away invisible bats.
posted by EmpressCallipygos at 1:41 PM on September 11, 2015 [8 favorites]

I have eye issues. You know that Chien Andalou eye thing? Imagine wincing like that when they put mascara on your face for the school musical. Having had a scratched cornea from wind blowing mulch in my face was not pleasant and certainly reinforced that feeling (along with having had a rubber band snapped into my eyeball one time).

So...

This article. NOPE! (Even though I am very very curious about this, I don't know how much I can stand to read).

I'm with Empress. Maybe not quite as bad, but... ugh...
posted by symbioid at 1:46 PM on September 11, 2015 [1 favorite]

Anybody got a tl;dr for us ocuphiles (visiophiles? ocupainphobes?).
posted by symbioid at 1:46 PM on September 11, 2015 [2 favorites]

May I suggest NOPE as a tag for this?
posted by symbioid at 1:47 PM on September 11, 2015 [1 favorite]

I'm very touchy about eyes, Very touchy. Once, my optometrist tried fitting me for contacts. She put the first lens on my eye, and I passed-out cold on her. That was the end of my ever wearing contacts.
posted by Thorzdad at 1:49 PM on September 11, 2015 [3 favorites]

ugh god that headline picture

Lest anyone be put off from reading the article because of that: the headline picture is off a bunch of Mylar balloons that look like slightly cartoonish eyeballs. One of them is partly deflated. There are no pictures of actual eyes, diseased or otherwise.
posted by jedicus at 1:50 PM on September 11, 2015 [12 favorites]

....You know what I was saying about me and eye body horror?

When symbioid said "that Chien Andalou eye thing", even just reading that phrase alone made me flail a bit.
posted by EmpressCallipygos at 1:50 PM on September 11, 2015 [8 favorites]

FTFA:

Rosenthal likens this system to a faulty fire alarm that’s been set to go off at a certain temperature. Based on Belmonte’s research, he believes damaged nerve sensors can become so hypersensitive that they send pain signals to the brain even with a normal surface temperature and an intact tear film. In other words, they continually raise a ‘false dry-eye alarm’ that results in chronic pain.
...
With this type of centralized pain, in fact, many patients cannot tolerate scleral lenses at all: “The eyeball itself is tender,” he says. The unusually sharp, burning sensation, he believes, may originate from abnormal signals in the brain’s pain-control centres that radiate out through the three branches of the trigeminal nerve supplying sensation to the head and face. “Even though they feel it in their eyes, it’s not coming from their eyes; it’s projected to their eyes,” Rosenthal says. Or put another way: just as nearly one in four Danish patients in a 2010 study felt phantom pain after having their eyes amputated, some patients with oculofacial pain might still feel the intense cutting sensations even if they were to have their own eyes removed.

posted by the man of twists and turns at 1:52 PM on September 11, 2015 [5 favorites]

tl;dr -- Some people have searing, stabbing eye pain to the point where a few have taken their own lives because it was so unbearable. Often, doctors don't believe the patients (accuse them of lying to get disability, etc.), and when they do believe the patients, they don't know what's causing it. The conventional wisdom is that it's a symptom of dry eye (i.e. not producing sufficient tears), but many patients don't have dry eye when examined and yet still have intense pain. Doctors are largely stumped. One doctor, Perry Rosenthal, is proposing that the pain is neuropathic; that is, the pain isn't caused by a physical thing (no one's sticking their finger in your eye) but rather your nerves freaking the hell out. (This is what causes pain when you have shingles, for example.) His theory has for some reason made him an outcast in the medical community, including in the foundation he started, for reasons that are kind of unexplained, but some doctors are on board with his explanation. There are a couple of things people have tried (e.g. special contact lenses) that have worked for a while but then stop working. The end.
posted by Ragini at 1:55 PM on September 11, 2015 [60 favorites]

I used to work at an agency for older people with sight loss. People with dry eye can be in great pain and it really affected their quality of life. If Dr. Rosenthal's research can help alleviate that, lots of people will be better off.
posted by Kattullus at 1:56 PM on September 11, 2015 [2 favorites]

If mine eye offended I might consider plucking it out before offing myself completely.
posted by StickyCarpet at 1:57 PM on September 11, 2015

StickyCarpet -- the article mentions that it's possible that removing the eye wouldn't help, kind of like when you have an amputated limb but still have phantom pain.
posted by Ragini at 1:58 PM on September 11, 2015 [2 favorites]

Doctors have real problems with idiopathic pain -- if they don't know why you should be damaged, the assumption is that you aren't (or, at least, that they need to focus on the problems they do understand, and maybe the mysteries will resolve over time).

It's a real issue, and the recent obsession with reducing opiate malingerers is not helping.
posted by effugas at 2:00 PM on September 11, 2015 [29 favorites]

Thankfully I don't have dry eye like described in the article, but my eyes do feel extremely dry in the mornings after I wake up. It's worse the longer I've been asleep. I don't know what the issue is. It started in my mid twenties. It's not necessarily painful, but it just makes it that much more unpleasant to get up in the mornings.
posted by pravit at 2:10 PM on September 11, 2015

OK - even that FTFA pull was too much - clearly gotta bail from this one. Have fun all you courageous non-eyefreakout people!
posted by symbioid at 2:12 PM on September 11, 2015

OMG THIS IS ME
This is 100% me.
Punctal plugs/cautery, Restasis, a small fortune in preservative-free over-the-counter products applied morning, noon, and night, and no relief.
Three ophthalmologists have literally, no-fooling, no exaggeration LAUGHED at me for being certain there was more wrong than what they were seeing on the surface of my corneas.
Missed an entire week of work once because my vision was too blurry to read - doctor shrugged and advised a different brand of overnight ointment.
I was sure I was crazy. Thank you, metafilter!
posted by The Underpants Monster at 2:30 PM on September 11, 2015 [40 favorites]

But Rosenthal believes years of heightened pain and light sensitivity can rewire the brain, unplugging some connections and reinforcing others. Although his treatment may have initially disrupted her pain signals, he suspects her brain gradually reset its faulty connections and overrode the dampened alarm.

This isn't a belief, it's verified. It's called central sensitization, which was mentioned in the next paragraph without going into detail. I'll link to this article as I have a number of times here for a big overview on our current best knowledge of how pain works. It's written by a former massage therapist who is well versed in modern neuroscience.

Bottom line - pain is not something that exists in tissues, it's an experience created by your brain, in your brain, and presented to your conscious self within your brain, with a very effective illusion that it's happening in out in your body. You can be injured and have no pain, and you can be uninjured and have no pain. Pain does not correlate well with injury at all, actually.

The doctor/patient interaction described in this article - "I'm the expert, there is nothing wrong with your tissues therefore you are crazy" is tragically still very common, despite this knowledge being around for about three decades in various forms.
posted by MillMan at 2:52 PM on September 11, 2015 [16 favorites]

I was hoping this was a cure, I'm no where near these scary stories but my eyes are too dry for contacts and I'd sure like to use those again.
posted by sammyo at 3:00 PM on September 11, 2015

Prior to his current difficulties, Rosenthal was a prominent and respected clinician and researcher:

Rosenthal founded the nonprofit Boston Foundation for Sight in 1992 to help get the expensive scleral lenses to patients who had run out of other options, regardless of their ability to pay. He was featured on The Oprah Winfrey Show in 2003 and lectured at medical centres around the USA. The dome-shaped Boston Scleral Lens, as he initially called it, acts like a reservoir for artificial tears and rests on the relatively insensitive sclera — the white of the eye — instead of the hypersensitive cornea. At the charity, some of Rosenthal’s patients had such severe eye damage that the lenses couldn’t restore their sight. But with the lenses on, they were no longer in agony
...

But as portrayed in the article, he seems not to be aware of what I would guess is the real source of all the pushback he's getting:

After his initial study on chronic eye pain, however, Rosenthal says the ophthalmology community largely censored his views. Even his own charity, the Boston Foundation for Sight, was roiled by internal conflicts. When the foundation fired his son, Bill, in 2011, Rosenthal was briefly arrested for trespassing in Bill’s office to gather up some belongings, according to a police report of the incident. Bill sued over his dismissal and recently reached an undisclosed settlement with the foundation. Then in 2012, after a 20-year tenure, Rosenthal was forced out of the foundation too — an abrupt firing that he alleges was linked to his focus on eye pain and what some at the charity referred to as his “off the wall” treatments.

“Boston Foundation for Sight has had numerous disputes with Dr Rosenthal over the past many years, some of which involved his son,” responds foundation spokesperson Karen Schwartzman. “All disputes were settled to the satisfaction of all parties in May 2015.

“With respect to Dr Rosenthal’s ideas about the neuropathic origins of severe and lasting eye pain, we hope his work will encourage research on this paradigm to the benefit of patients suffering from severe eye pain.”

Based on his clinical observations at the foundation, Rosenthal wrote a paper describing 21 patients who underwent LASIK or similar laser-based surgeries and subsequently had severe eye pain lasting more than two years. After two ophthalmology journals rejected the article, he published it himself on the website of the Boston EyePain Foundation, another nonprofit that he launched in 2013 to continue his work. Since then, he has regularly posted patients’ stories and railed against what he alleges is the medical community’s willful suppression of mounting evidence that much of what is considered dry eye disease is instead a broken alarm mediated by faulty nerves and circuits in the brain. [my emphasis]

Which is that his work casts doubt on the safety of LASIK, a source of vast revenue and huge profits for its practitioners.
posted by jamjam at 3:10 PM on September 11, 2015 [16 favorites]

Wow, digg publishes original stuff? This is surprisingly good science writing. Ever since that Radiolab on colors I feel like rods and cones and the retina got all the attention. That is except for brief couple weeks after the white/blue dress when the visual processing got some long over due love.

BUT god-damn if the sclera and cornea aren't super cool as well. No blood vessels? Oxygenation by direct diffusion? Un-epithelized tissue on the most forward facing part of our face? Lubricated to well enough to tolerate thousands of tiny movements a day?

Anyways: the lede is likely somewhat bogus. The ideas as presented in the article are decidedly not radical. Neuropathic pain has been accepted fact since before antibiotics, and pain disorders not linked to any observable neuropathy aren't really even controversial any more. Even the staid old Institute of Medicine published a report that was basically "yeah Fibromyalgia is real, this isn't really a debate any-more guys." I doubt that Perry Rosenthal and his son ran into trouble with his charity due to his theory. There has to be some type of interpersonal conflict, ethical concerns, increasingly unsafe therapeutic practice or some bad outcomes that prompted them getting drummed out.

"Rosenthal says the ophthalmology community largely censored his views." Really? You just published a review in the British Journal of Ophthalmology. Like within the last year. I have a feeling at least a few ophthalmologists had to sign off on that article summarizing the data that you feel supports your view.

Sammyo: " I'm no where near these scary stories but my eyes are too dry for contacts and I'd sure like to use those again.."

So, this was a little difficult to follow in the story, but Dr. Rosenthal's research isn't concerned with dry eye. It's a "chronic dry eye-like pain" in people with no shortage of tears. The problem he encountered is he saw several patients with dye eye pain, but did not have any problems with lacrimation, any secretory duct disease like Sjorjens, or any physical or chemical trauma to the eye. As for expecting a "cure" any time soon, so far his research is basically: I've seen some cases of this, there are some other case reports of this, here is some background science that might explain it. I don't even think there's an idea how rare/common this is. Even though the idea isn't exactly what I'd call radical there's a lot of collecting evidence to be done.
posted by midmarch snowman at 3:11 PM on September 11, 2015 [6 favorites]

That's a good article. If anyone wants to read it but is worried about the images, I made a plain text .pdf and stuck it in my Dropbox.
posted by salishsea at 3:17 PM on September 11, 2015 [1 favorite]

midmarch snowman: "Wow, digg publishes original stuff?"

Nope -- they republished it in full from Mosaic.
posted by Rhaomi at 3:25 PM on September 11, 2015 [2 favorites]

After all this Un Chiens referencing, might I suggest "Debaser" as the soundtrack to this article?

It kinda helped, kinda didn't help with my eyes involuntarily watering like crazy while powering my way through.
posted by quadbonus at 3:40 PM on September 11, 2015 [1 favorite]

"Which is that his work casts doubt on the safety of LASIK, a source of vast revenue and huge profits for its practitioners."

So, I am very suspicious of moral hazard and profit motive in largely autonomous professional groups (see, for example, my loathing of the AMA). But the reason his 2013 manuscript was rejected is because it's not good. Like, seriously not good. The entire premise of the manuscript is begging the question, the methods are haphazard, and while there is tons of "results" written down as percentages, there's no attempt at statistical rigor... or even a comparison cohort.

Also, it was only rejected from two journals* and there's no documented significant attempt made to re-write it or submit it to smaller journals. Honestly, having been through revisions, I can guess the main reason it remained unpublished is that it started as something he simply found mildly interesting but didn't come out right as initially written. And 80 years old Dr. Rosenthal didn't feel like completely re-writing 2,000 odd words for something so low powered as a case series.

Also, if you search pubmed, there are literally hundreds of papers documenting late complications of Lasik surgery. There are plenty of morally bankrupt doctors out there, but examples of entire specialties banding together to suppress reports of complications in direct disregard a dozen oaths are pretty rare. Also, ophthalmologists were rich before lasik.

*In case you were wondering: Journal of the American Academy of Ophthalmology and The Journal of Cataract and Refractive Surgery
posted by midmarch snowman at 3:44 PM on September 11, 2015 [17 favorites]

So, as someone with chronic pain that theoretically (maybe) is much worse than the biological cause, is there a reason we're seeing so much on pain sensitization? Is it that we just called them malingers before? Is it a case of previously mistaken identity, an uptick in pain sensitization disorders, or our new favorite theory being applied to everything? Asking in earnest; I don't know I've run across a history of these types of disorders and I'm genuinely curious. It does make a lot of sense that the eye would be susceptible to the same pain disorders the rest of the body is. Then the question is, is this unique or is it like other pain disorders and it is just being seen by a different subset of doctors who aren't necessarily on the same page yet about the possibilities of a neurogenic pain disorder?
posted by [insert clever name here] at 5:20 PM on September 11, 2015 [1 favorite]

That was a lot of words to say, "You know those chronic pain disorders people have? In some cases, those disorders affect the eyes." Pain management is a niche medical field whose practitioners are commonly suspected of being money-hungry drug dealers eager to get their patients dependent on them for medication.

These cases are not ophthamological, they are neurological and are the domain of pain management experts. That said, this is an interesting example of how knowledge can be silo'ed, isolating experts in one field from the expertise in another field they need to find a solution.
posted by deanc at 5:44 PM on September 11, 2015 [2 favorites]

This is unbelievably topical - just today i ordered two pairs of wind shield goggles from zennis to try to deal with dry eyes
posted by canoehead at 6:56 PM on September 11, 2015

"Brooks talked to doctors around the world. Finally, one realized that his eye drops contained a toxic preservative known as benzalkonium chloride. The preservative, which is widely used in artificial tears and eye drops for glaucoma, has been linked to dry eye symptoms, inflammation and cell damage in multiple studies; only some manufacturers have replaced it with other chemicals or preservative-free solutions, however."

So, in the past month I've learned I'll be using eye-drops (day and night) for the rest of my life. (It's better than going blind!) One of my prescribed drops (lumigan) has this (apparently) toxic preservative in it. Can some explain to me whether I should be concerned (the wikipedia entry backs up the toxicity claim with this pubmed essay: https://www.ncbi.nlm.nih.gov/pubmed/20302969 )? To clarify I'm not going to stop taking them right away or anything like that.

I will certainly contact my eye doctor on Monday, but I'd rather get some more info before then. Also, are there alternatives to Lumigan that I can ask for?
posted by oddman at 7:26 PM on September 11, 2015 [2 favorites]

This is an interesting article (and discussion!), but this isn't the dry eye that I've developed so late in my life. In my case, after I've been asleep for 3 or 4 hours, my eyelid will actually adhere to the surface of my eyeball and lock shut like the lid was glued or something. I'll wake up from the pain of my eye trying to free itself, damaging the cornea and causing me weeping, blurred vision for hours afterwards. Then, in the course of the day, moderate use of otc eye drops (usually composed of some kind of glycerine compound) or not, my eyes will feel perfectly fine, only to repeat the cycle after going to sleep. An effing nightmare, and one I've come to understand is most people's dry eye experience. This article is not even in the neighborhood of my dry eye.
posted by Chitownfats at 8:04 PM on September 11, 2015 [1 favorite]

FUCKING BONKERS

Three days ago, I was drinking beer with a friend at Mikkeller Bar in Karosu-gil here in Seoul, and two random American dudes sat down next to us, Harry and Ed.

They were in town pitching their product: Lubricin, a recombinant endogenous protein used to combat Dry Eye syndrome.

Oh, and Harry, from Boston, is the brother-in-law of one of the members of A-ha. And the last man his wife dated before marrying him? The other member of A-ha.
posted by Joseph Gurl at 8:32 PM on September 11, 2015 [2 favorites]

I had a friend who picked up the dry eye diagnosis, while also slathering her face with products rich in retinol anti wrinkle substance. Reading up on this, which is in a lot of products, it causes dry eye. Many lotions and creams irritate my eyes. I generally go commando face because of it.

Wouldn't it be amazing if emotional pain got stored in the eyes; never seeing what you want to see, or seeing too much?
posted by Oyéah at 8:58 PM on September 11, 2015 [2 favorites]

I'm amused by the.... histrionic gush of the writing, when twice some of the worst outcomes possible for people with chronic pain of unknown etiology is that they may be assessed psychiatrically. Or that being "psychiatric" is somehow on a continuum between "lying" and "wasting" doctors' time.

hyperbolic, narcissistic or even psychiatric
being accused of lying, of having psychiatric issues, of wasting their doctors’ time

I treat chronic neuropathic pain and central desensitization syndromes occasionally. If there's no clear indication for it, I will not tend to use opioids, for which there is no evidence of long-term benefit here. Instead, I might try gaba, serotonin and norepinephrine modulators. Occasionally dopamine. Experimentally glutamate. Some people also call these "antidepressants" and think they are "just psychiatric". But you know what? Sometimes they work, even if people don't have a diagnosis of "MDD".
posted by meehawl at 9:05 PM on September 11, 2015 [3 favorites]

oddman I doubt they're anything that could help you given the serious-sounding nature of your condition, but when my optometrist instructed me to get eye drops for dry eyes and discomfort while wearing contacts, she made it a point of telling me to get OTC ones that contain no preservatives. They come in individually sealed little vials and are supposed to be used only one time and then thrown away (if there is any fluid left).

As to why she suggested them, after having no real issues with contact solution (or contacts) apparently my body chemistry and eye health/shape changed enough that solutions and contacts have really begun to irritate me. She suggested the preservative-free drops to decrease the odds of me negatively reacting to them.
posted by sardonyx at 9:41 PM on September 11, 2015

Bottom line - pain is not something that exists in tissues, it's an experience created by your brain, in your brain, and presented to your conscious self within your brain, with a very effective illusion that it's happening in out in your body.

If it's possible to find sciatica amusing, this is why. What's that excruciating pain going through my testicles and down the back of my leg? It's a complete illusion caused by nerve compression in the spinal column! Which is kind of humorous, when you think about it. Yes? Ok, but it's better than talking about eye surgery, and I've only had cataracts removed.
posted by sneebler at 11:23 PM on September 11, 2015

Interesting. I have dry eye, though mine isn't so terribly painful, and I have a sensory and motor neuropathy. It's my understanding people with some types of advanced neuromuscular diseases are particularly prone to dry eye, but I always thought it was due to poor circulation resulting in clogged glands. This makes a great deal of sense to me.
posted by Soliloquy at 12:28 AM on September 12, 2015

My eye doctor told me my eyes are dry, and for me that's just an occasional annoyance. I had no idea things could get so bad for some people. But now I'm with oddman and want to know if that 0.01% of benzalkonium chloride that's allegedly safe really is safe.

... patients who tell remarkably similar stories about being accused of lying, of having psychiatric issues, of wasting their doctors’ time.

Ah, the memories that brings back. This is what having fibromyalgia and chronic fatigue syndrome has been like for so many of us. There's one doctor back in Indiana I'd still like to punch in the snoot some 20 years after the fact. Look, I know there are hypochondriacs and fakers and malingerers and other bad actors out there. But is it too much to ask that a physician extend a patient some benefit of doubt? We can't all be liars.
posted by bryon at 12:38 AM on September 12, 2015 [4 favorites]

My mom, with a plethora of eye issues, gets eye drops made out of her own blood.

I guess that skips the preservative issue.

Still makes things like 1000% more creepy.

You are welcome.
posted by AlexiaSky at 9:20 AM on September 12, 2015 [3 favorites]

My mom, with a plethora of eye issues, gets eye drops made out of her own blood.

My ophthalmologist mentioned that as a possibility for me if preservative-free eye drops and Restasis didn't work out. I shudder to think of the cost, though, even on insurance.
posted by immlass at 9:58 AM on September 12, 2015 [1 favorite]

Chitownfats, have you tried putting an oil-based ointment (one example) into your eyes at bedtime to keep them from sticking to your eyelids at night? If not, it might help.
posted by artistic verisimilitude at 12:07 PM on September 12, 2015

artistic verisimilitude: I have not tried Systane, and I will give it a shot. Thank you for the recommendation. I did try another goop for a while, Muro128 ointment, and another I can't remember. They worked for a while, but eventually I would start waking up with the pained weeping deal, with the added detail of greasy goop all around my eye.
posted by Chitownfats at 5:31 PM on September 12, 2015

So, as someone with chronic pain that theoretically (maybe) is much worse than the biological cause, is there a reason we're seeing so much on pain sensitization? Is it that we just called them malingers before? Is it a case of previously mistaken identity, an uptick in pain sensitization disorders, or our new favorite theory being applied to everything? Asking in earnest; I don't know I've run across a history of these types of disorders and I'm genuinely curious. It does make a lot of sense that the eye would be susceptible to the same pain disorders the rest of the body is. Then the question is, is this unique or is it like other pain disorders and it is just being seen by a different subset of doctors who aren't necessarily on the same page yet about the possibilities of a neurogenic pain disorder?

This book offers a proposed answer. Basically that "psychosomatic" (which by definition isn't faking) or "mind-body" or "neurologic processing disorders" have always existed, but they take on different manifestations for cultural reasons.
posted by kevinsp8 at 9:24 AM on September 13, 2015