Chronic, Debilitating Eye Pain Eluding Diagnosis!

[sandanperry]

I have suffered from indescribable eye pain for years---somewhat intermittent at first, but it has been a constant part of my life since about 2005.  The pain is there 24/7, but is at its worst whenever I've had to actually USE my eyes for reading or focusing on objects.  After about 5min of reading, the pain alarms go off.  If I ignore them, even "louder" alarms go off.  If I still don't stop reading, within a period of 1/2-1 hour the pain reaches a fever pitch level, and is accompanied with severe nausea and often vomiting.  The pain will then remain at that highest level for anywhere from 5-24 hours, making sleep all but impossible.  At one point last year I had a 3 month cycle of ultra-sensitivity----if I so much as read a street sign, the pain shot up to the highest extreme (along with the nausea and vomiting).  I then went to a new opthamologist, who determined that my vision had dramatically worsened since my last check up, but that was the only real clinical findings.  A stronger prescription, along with Progressive lenses, did seem to bring the pain syndrome back down to its "normal" presentation.  I have never found relief with traditional analgesics (OTC or prescriptions), narcotics, or migraine treatments.  I HAVE, however, found relief (very near 100%) when put on low-dose steriod packs by my neurologist (for chronic migraine episodes).  The pain itself is a dull ache at best, and a piercing/penetrating/radiating pain at worst.  It is also accompanied by other, inexplicable, feelings when at it's worst-----the best I can describe it is as if my eye is being pushed forward, or simply altered in shape, and it somehow results in pockets of air being trapped behind the eyeball and beneath the eyelid itself.  Obviously there aren't any air bubbles under there, but it literally feels like there are (and that if I could just let the bubbles escape I'd feel some relief!)!  I do suffer from chronically dry eyes, but the degree of dryness seems to wax and wane, and the feeling I'm trying to describe is quite different from the usual grittiness of dry eyes.  I have sought answers from my Internist, Neurologist, Optomatrist, and two or three Opthamologists.  Each one ended up suggesting that it's ocular migraines (especially since I also have photophobia), or that it's just severe eyestrain.  But what I'm experiencing doesn't really seem to fit the description of ocular migraine symptoms.  The eye strain theory was quite believable several years ago, when I worked long hours reading,etc.  But I ended up quitting the work force two years back because there isn't a job out there that doesn't require reading, at the very least.  And since then I've also had to limit my personal reading/computer time to (preferably) less than 20 min a day.  So the "Eye Strain" theory no longer holds up-----unless my eyes are so sensitive that they are not only strained by vision in general, but also by REM while I sleep!  (I do have narcolepsy, so I will say that I spend much more time in REM sleep than normal!)  Reading and writing were my lifelong passions, and central to the career I was pursuing.  So not only have I been trying to maintain sanity despite the constant pain, I've had to walk away from my dreams.  I can't imagine that this phenomenon is as random and meaningless as my doctors have indicated----and I really, really can't imagine spending the rest of my life in this state!  Is there anything they might have overlooked?!  Honestly, more often than not I'd rather have my eyes removed and learn to live without sight than persisting in this condition.  (When the pain is especially unbearable I fantasize about popping the darn things out with a grapefruit spoon!  But something tells me that would only heighten the pain factor!!!!)  Any advice at all would be a miracle!!  Thanks so much!

[Chris235]

Hello - Did Sandanpeery ever provide any additional information re: treatment for her severe eye pain?  I have an adult son currently suffering  with a similar eye pain issue.

Thank you

[lyden98]

Sandanperry,

I am suffering from exactly the same condition - I could have written your first post  - especially the description of the pain and what aggravates it.

I am/(was) a computer programmer but have been unable to work for the last 18 months due to  the condition.

I have seen countless eye specialists and other assorted medical professionals, none of whom even really recognize the symptoms.  

How has your condition progressed since you posted. How did your appointments at  Emory go?

Thanks Alex

[John C Hagan III, MD, FACS, FAAO]

Be sure to mention that to the neuroophthalmologist. Interesting an perhaps important observations.

JCH MD

[sandanperry]

Dr. Hagan,
I'm in the process of getting the necessary referrals for a neuro-opthamalogist at Emory, but in the meantime I had a sort of "AH-HA!" moment that I'd like to get your opinion on!  I decided to try and massage all around my eyes in case the pain is associated with nerve pressure points or something.  When my fingers began working on and around my eyebrows I realized they were triggering the exact same type of pain and pressure in my eyes that I get from reading, etc!  My fingers were on my brows, but the pain was radiating to the area of the sockets and behind them.  All of the sudden I started thinking about the fact that, due to a combination of low-lying eyebrows and droopy eyelids (on both sides, but esp. problematic on the right) the muscles around my eyes are never able to relax.  (If I want my eyelids to be relaxed while still also open, they will only be open 2-3 cm, and I then have to tilt my head way back to see anything!)  Not only that, but because I also have narcolepsy I'm always struggling to keep my eyes WIDE open in order to avoid the hypnotic sleepiness and micro-napping that is quickly induced by half-closed eyes!  Interestingly enough, my narcolepsy symptoms were just beginning to present a real problem for me around the same time that I first noticed the frequent eye pain.  It also bears noting that my eyes have steadily increased in droopiness over the last decade (in fact, the left eyelid didn't initially droop at all), which also coincides with my ever-increasing astigmatism and difficulty maintaining focus!  I looked around on the web and it does mention ptosis as a cause of eyebrow/eye strain, etc.  Is it possible that my chronic pain is "simply" the result of long-term brow and eye strain, or does my pain get too severe to qualify for that explanation?  While researching the ptosis I also happened across another potential explanation for my symptoms:  "trigeminal neuropathic pain."  That diagnosis could also potentially fit my history, but once again I don't know if it fits my symptoms or not.  I'd love to hear your opinion on the subject----especially since this is the first time I've come across ANY possible explanations!            Thanks, again, for all of your help and insight!
Sandy Perry

[John C Hagan III, MD, FACS, FAAO]

Thanks and good luck. I did my ophthalmology training at Emory. Be sure you see a neuroophthalmologist.

IF you find a distinct diagnosis let me know.

JCH MD

[sandanperry]

Thank you so much for the advice.  I'll be calling the Emory Eye Center first thing tomorrow!  It's hard to believe that after all this time there's a chance I might find relief!  (It's also hard to believe that a facility like that exists just a few miles away, and none of my doctors thought to suggest going there!  So frustrating!)  I realize that it's time consuming to keep up with this forum, and I hope you know how much it means to people like me!!!  Thank you for being willing to contribute to our search for solutions!!!

[John C Hagan III, MD, FACS, FAAO]

Look at the posting today that I have reposted "Who Gives The Best Eye Care In THe World". My suggestion is to go to one of those centers. Be sure to take your old records, make an appointment with a neuro-ophthalmologist.

JCH MD