SEVERE, SEVERE eye pain (would gouge out eyes if I could)

[achyeyes]

I really need some help about such severe pain in both of my eyes that, honestly, I've thought once or twice today, just to myself, "I wonder if the pain would stop if I gouged the darn things out?" It's sickening pain, nauseating pain that *out excells* neuropathy from degenerative disc disease and rheumatoid arthritis so severe I'm just waiting for the Enbrel to be approved.

Here's what I know:

I'm severely photophobic, cripplingly so. I can't leave the house without double eye-dialating sunglasses under my regular glasses. *Inside* the house, when I can't live in dark rooms, I constantly wear said sunglasses as well as 6" wide-brimmed hats (as light from above is most painful.) I don't go out in the daytime unless I *absolutely* have to. This computer monitor, to me, is so sickeningly bright that I keep taking breaks to hold my hands over my eyes.

The Cornea specialist I've seen since Sept. At first he was *insistant* that I have plugs put in all 4 punctal ducts for severe, severe Sjorgren's. He also diagnosed damage to the left lens and retinal damage, likely pigmentation. I asked to confer with my rheumatologist, meanwhile, he had me start twice daily Restasis (which, as of a week ago he declared a complete success, completely ignoring all other symptoms. When I asked him for help for the above problems, everything, he said none of these things were his issues. When I said I was worried because early on he was very gung-ho, but now seemed lackadasical, he said he was offended and dropped me like a hot coal...but *not* before he pitched a fit and thrusted at me two samples of an eyedrop that is **strongly** contraindicated in the general precautions section for both people with RA as well as people with dry eye problems. A very bad move on his part. Luckily, I saw the warning just before I was readying to put in the drops and haven't used any. The bottles remain sealed.)

The Retina specialist has dialated my eye, performed a fluoresce angiogram as well as measuring the first 5 layers of my retina. He sees a small spot on the left side which he told me to remember for the future, but says it doesn't warrent treatment currently. Nevertheless, he wants to see me in 3 months (thank heavens he really is a good guy!,) but that I still can't get new eyeglasses until then (even though these, at present, are 5-6 years old. I've tried, over the last 2 years, to get new glasses, but something odd *always* happens: every newly cut pair of glasses look *exactly* like I'm looking through a fun house mirror where images are stretched and squished. It's sickening, so I haven't been able to accept/buy new glasses.) The retina specialist was interested to hear about the severe photophobia, most esp. light from above, and advised that I find sunglasses to fit over my prescription glasses at a low vision store. (Only the absolute darkest tint called "dark plum" brings any relief. I've checked everywhere and they're legal for me to wear/drive in. They are *quite* bulky and heavy. Think "glaucoma" glasses, but I'm thinking I need to buy them, probably.)

My regimine: Restasis, warm washcloth eye packs, Genteal for severely dry eyes, dark sunglasses over dark sunglasses, a bevy of hats and, when the sun or light is coming in side-wise, I'll drape a towel over my head to avoid the agony.

My only hope so far: I'm praying Enbrel, should it be approved, might help in some way...particularly if it's some sort of yet-to-be-identified autoimmune disorder (as I'm fighting close to 10 autoimmunes as is.)

I know I'm in a lot of trouble when the pain medicine for the severe RA and the medicine for the severe nerve damage doesn't touch this *at all*. Tested, my vision (with glasses on) is only minorly marred. But there's something going on, something I don't understand, neither do the drs, that could easily drive me mad--quite fast, quite easily--it would take almost nothing to do. The pain drives me to distraction, sickens me, and really, and around family only, just when the pain's way too much, it makes me more snarlish that I really am. I'm just lashing out in SEVERE, SEVERE PAIN that I don't know how to resolve or be rid of. The drs., when at a loss, try blaming it on an unknown autoimmune---what now? The Rheumatologist says he won't rule out Lupus. Is this Lupus? I never thought I'd be at a point where I'd pretty well be ready to trade something as invaluable as my sight, just to take these terribly painful eyes out for a while, just to get a break from the pain.

Help

[ringo]

Dear Achyeyes,

I am certain that your severe photophobia and pain is due ti severe dryness of the eyes....the underlying cause of autoimmunity is not very important, as dry eyes always involve autoimmune unflammation, with or without underlying autoimmune disease.

There are several things that owrk in cases like yours-- first, the topical medications: you have to ask your doctors about using steroid drops (there are very good ones called Durezol without preservatives); also for the pain you might want to try drops pain killers like Voltaren or Akular, they also help with inflammation.

My doctors have put me on a compounded higher concentration of cyclosporine drop and ointment (considerably higher than restasis). Other patients with severe dry eyes have had significant success with oral steroids/ immunosuppressants.

I also think that punctal plugs will help in your case. If your eye condition is so debilitqating, your doctor should prescribe something faster acting and more potent thatn simply restasis and genteal gel...sounds like you have severe dryness and inflammation. You must go to another doctor, preferably an corneal disease specialist, and discuss with him other treatment options.

Please do not despair-- many people have been through the severe pain phase of dry eyes, and have pulled through with the proper treatment! Hang in there and see a good specialist... keep us posted.

Good luck!!! God bless you

[Rebecca Petris]

I am so sorry for what you're going through!

I really need some help about such severe pain in both of my eyes that, honestly, I've thought once or twice today, just to myself, "I wonder if the pain would stop if I gouged the darn things out?"

I understand this. I've heard the same thing from a lot of acoustic neuroma patients... some of whom DO have the eye out rather than deal with the pain. However, I think there's much better hope than that.

I'm severely photophobic, cripplingly so.

My immediate response to that is... Boston sclerals, because I've known so many cases of crippling photophobia that have instantly resolved (literally) that way. (Slight caveat for retinal involvement in the photophobia - but based on your pain level, it sure sounds corneal.) Photophobia is poorly understood by corneal specialists in my opinion, probably even more than pain. So my suggestion would be, assuming Houston is an easier trip than Boston, call Cullen Eye at Baylor in Houston and see if you could get in for an evaluation where they do a trial lens to see if it will help. If it does, they can tell you the next steps to get fitted with lenses - Based on the pain you describe I'd be really surprised

Meantime, outdoors I'd be wearing a really snugly fitting Panoptx or Wiley-X if possible so there is no peripheral light at all, and the lenses of course whatever type is giving you relief. Screen-reading software for the computer.

The pain drives me to distraction, sickens me, and really, and around family only, just when the pain's way too much, it makes me more snarlish that I really am. I'm just lashing out in SEVERE, SEVERE PAIN that I don't know how to resolve or be rid of.

Sclerals, sclerals, sclerals. Pain is something the folks at BFS really understand. I was just there a couple of weeks ago and Dr. Rosenthal is working on a very interesting theory about why the pain in some of these cases is so bad and why certain solutions work and others don't.

Hang in there. You WILL get a resolution for this.

[Keymaker]

I am praying for you. Every time I feel sorry for myself I read of an experience like yours which makes my issues look small. Follow Rebecca's advice, she is right on the money most of the time.

[odydnas]

I am so sorry to hear what you're going through.

I definitely second what Rebecca said about looking into Boston sclerals. I remember hearing a story about a patient with extreme photophobia who got significant relief from Boston sclerals.

Please, do not despair. Hang in there, it sounds like you haven't tried everything yet, so there is hope!

[Tempestuous]

Hi,

I'm a bit late to this thread but maybe if you get this it may help to know you're not alone. I've sharpened, sterilised and rested my penknife on my eyelid twice now trying to focus and believing I would make an improvement to cut my worse eye out.... At least that would be easier to treat right?
But swapping the problem wouldnt solve it and in some respects make it worse.

Tell the docs this and get better pain killers. Pain management is something you have to work at but will make a difference.

I'm in the same place as you with light sensitivity. Its depressing and the eye specialists dont seem to understand it in my experience.
I wrote about light sensitivity and what has helped me here
http://www.dryeyezone.com/talk/showt...7957#post47957
perhaps you can find something of use.

Does it ever get better?
Everyones different, but with time, rest, de-stressing, trying lots of different meds and adequate nutrition... I think yes.
For me, I last had the knife to my eye about 3 months ago then I got just a simple new lubricant and now I am no longer on any painkillers.

So dont give in!

Now it looks like I also need to find out about these sclerals... Thanks Rebecca for the info.

[Lucy]

Those with debilitating pain in their eyes might want to try Lyrica. It has helped the pain in my eyes quite a bit. Have Sjogrens along with old Lasik mess.

The med would be something you could try without much trouble if your doc would cooperate. I really had not noticed too much until one day I realized that my eyes were not on my mind all day long. I also have numb lips and other areas of my face and the Lyrica takes care of that.

Lucy

[achyeyes]

I'm still trying to ge by : )

Hi everybody,

(((Hugs))) and so many great big thanks!

I've emailed a couple times trying to get the sclerals but have recieved no replies. Oh, but they do sound like Heaven!

My retina dr. saw me last in Dec. He ran all kinds of test, fluorescencing (sp), measuring thickness, taking all sorts of high-tech pictures. The results: he doesn't see much on the right eye, but the left eye has the beginning of something that he doesn't know *what* it'll become, so he gave me a copy of the results and told me to give a copy of this to any dr. so long as the symptoms persist (I'm also due to see him again in March.) Upon asking if we don't know what this is, is there any idea what may be causing it? He was caring but *totally stymied*, hesitantly wondering aloud if maybe it could be part of some sort of autoimmune disease, one of the too many I have. He then referred me back to the cornea dr.

The cornea dr. is an absolute nut. At my last appt. with him, he suggested I find another dr. because I wanted an answer, possibly a solution, to why the intense, sickening, not-even-the-big-RA-pain-meds-touch-it pain persists. He did the tear test again and was goofy-excited that the test came back mostly normal and he just kept going on about how amazing and wonderful this is...and he got *really* bizaarely aggitated and fiercely defensive when I told him I was glad he was excited, but i need to have something done about this extreme eye pain that nothing touches. Also, I wanted to know why at my first appt. with him he was gung-ho insistant that I have 4 punctal plugs immediately and now he was dismissing me as fine, despite the intense pain and photophobia. Then I told him that after the appt., I was going to see if I could get extremely dark over-Rx glasses at the low vision store. He snapped, he yelled, he kept saying, "Do you want a prescription or not?!!!", over and over, popping in and out of the room. It was surreal. He was throwing a tantrum and I didn't know what to do except just sit there in the exam chair and wait to see what I was supposed to do. He thrusted 2 samples of Xibrom at me and signaled for me to move out of the room, go to the front desk and get the names of another cornea specialist I could go see. His front desk woman was so cool, calm, collected--as if it were normal for her, she was entirely unruffled. (This dr. gave me 2 names and the retina guy gave me 2 names of other cornea drs.--only one name is on my insurance plan...one the nutty cornea guy suggested.)

I read the pharmaceutical insert to the samples he gave me upon getting home, just before, I figured, I'd put them in. He said they were supposed to do something to the tune of being anti-inflamatory. Apparently the drug will cause permanant, irreparable, severe damage to my eyes and loss of vision due to: 1) my anaphalactic allergy to sulphas (which he had noted on my chart,) as well as 2) salicylic acids would kill me by toxically building up in my liver (since I no longer have a thyroid or parathyroids; strange, but true,) then there's the bit under "Precautions: General: ... Postmarketing experience with topical NSAIDs suggest that patients with ... ocular surface diseases 3) (e.g., dry eye syndrome,) 4) rheumatoid arthritis ... may be aat increased risk for corneal adverse events which may become sight threatening. ...Adverse Reactions in Clinical Practice ...The events which have been chosen for inclusion ... include corneal erosion, corneal perforation, corneal thinning and epithelial breakdown."

(Sigh...) So that sucks...

I'll try more on Monday to get in to see a new cornea specialist (maybe I'll see my pcp and see if I can get her to push an appt. through due to the severity.) Meanwhile, just 2 wks ago I had my blood tested, through my rheumatologist, for Lupus before going on Enbrel (I've been having the butterfly-shaped mask/rash daily now; add that to the Sjorgren's, anemia, RA, photophobia, etc. ... it'll be interesting to see how it pans out. It might help diagnose/treat in the case of my eyes, but...it'd throw my RA therapy *way* off. I've already been on DMARDs and found out I'm highly allergic to quinine. From what I understand, DMARDs are the standard Lupus treatment, whereas Biologics are supposed to bring on--the blessed, much pined for, anticipate, prayed for temporary alternative reality--the Heaven and ultimate bliss-- called Remission. I'll find out the results and see the rheumy Feb. 18th. Besides, I have to hope the rheumy might have a further suggestion about the eyes so bad that my jaws are eternally tight from compensating for the pain. I already have the RA pain, Fibro pain, the Neuroalgia pain--the discs in my spine are degenerating and will fuse together, we don't know when or how--then there's these eyes...)

So, for now, it's just the twice daily Restaisis and Genteal for severe symptoms and I don't go out for anything...anything...until sunset or nightfall (the only painful exceptions, drs. appts or bloods. ...Speaking of bloods, the hemetologist wants me to make another appt. to see him, too.)

***I will try anything safe that anyone can think of to relieve this in the meantime.*** (It's just agony. The only relief I seem to get is during the first 4-5 hrs of sleep. I wake up from the pain, usually the severe pain from the neck degenerating, then, like the cruelest Poloroid, as conciousness gives way every nerve wakes and almost instantly begins screaming. The *one* comfort I do have is that at least I'm able to take medicine now so that I know I'll be able to breathe when I wake up, instead of waking up, frantic, unable to breathe. You'd think with all this mess going on some really good dr. would want to study all this, provide care and hopefully help others with what he/she learns (and maybe get to write a research paper, glorifying him/her.) But I haven't met a one yet. Just the opposite is true. There's so much going on that *no one* wants to touch it beyond their limited comfort zone.

(Tempetuous--I get what you're saying, 100%, and I ache that you should find a cure, too...even sooner than mine : ) I wonder if, like phantom limb, there's something like phantom organ/phantom eye syndrome? I sure hope none of us ever have to find out. I fear too many drs would rather have high success rates with a limited number of techniques/treatments/proceedures than, emapthizing with the patient and with curiosity, try figuring out something NEW and end a bit of suffering. I'll stay strong and definitely won't give in. I'll get *very* tired, but I'll strive to get back up again and again until, hopefully, someone intelligent dr. will come along with, if not a cure, then a treatment that works : ) )

(Hi Lucy! : ) Thank you. I was tried on Lyrica a little over a year ago for the Fibro--it must just be me, but it amplified my symptoms to an emergency level instead of allaying them.)

Thank you guys
(p.s. I'll keep my eye on the thread and post any updates)

[Lucy]

Something that should help although it's obviously temporary is ice packs. In the 10 years since Lasik, I've had the dry eyes caused by Lasik and was found 3 years ago to have Sjogrens and Fibromyalgia.

I've had trigeminal neuralgia in my left eye since Lasik. The only thing that helps is Lyrica. I'm also numb in the lips and face area and the drug helps with this too. I only discovered Lyrica about a year ago. It's not perfect, but it keeps the pain to a level that it's not on the front burner all the time.l I can do things sometimes that I actually forget about my eyes for awhile.

The gel packs are small and soft and kept in the freezer. I've always had several handy. When I can't handle it any more, I head for the gel packs. I, too, asked doctors at a U hospital ophthalmology to take out my painful eye. Of course, they laughed at me.

[ringo]

The scleral lenses must surely help....and may be systemic immunosuppressive therapy will help together with topical applications? I have heard from people on this site and my own doctor that with such recalcitrant debilitating cases like yours only a combination of systemic immunosuppressants works, though it might take a ew weeks to see the full effect. Please consult a doctor about this.

Meanwhile there is a new invention -- a subconjuctival/episcleral sustained release cyclosporine implant. It could help along with the oral therapy and the sclerals. Pls hang in there, you are far from having tried everything!

[Ariel]

Subconjuctival/episcleral sustained release cyclosporine implant

Dani,

Can you tell us more about this? How can a steady flow of cyclosporine make a difference? I'm taking cyclosporine 1% now and the pain in my eyes is unaffected by it.

Achyeyes,

My understanding is that "Embrel" rather than a cure can be a cause of dry eyes so why do you want to use it?

[Ariel]

Dani: I haven't been able to find a whole lot on "subconjuctival/episcleral sustained release cyclosporine implants" but I wonder how helpful it can be if the tears being produced have an sebum or mucin insufficiency.

[eyecansee]

Possible Solution

I don't have much time right now, but quickly I will tell you that I was a "bag lady" -- I was so light sensitive I had to wear a black bag over my head even though I was on 20 prescription pills (including high doses of Lyrica, Carbomezipine, Gabapentin, Baclofen, and Hydrocodone) a day. I was helped through new machine called scrambler therapy - I am off all pills and no longer a "bag lady". Contact Boston Foundation for sight, because early treatment is essential for success. This treatment is for severe light-sensitivity caused by corneal neuralgia. Most opthomologists have not even heard of this disorder, but the Boston Foundation for Sight knows it and treats it.

Because of them
eyecansee