I have severe dry eye and CORNEAL NEURALGIA

[buntbean]

I have suffered for 5 years with severe dry eye and eye pain. The pain came on suddenly one day while shopping, 3/2005. I was fine one second and then in severe pain the next. Like ice pellets being shot into my eyes. My lower lashline felt like welding sparks or bacon grease was being splattered into them. I almost killed myself during those first 3 months. I saw over 20 eye doctors in and around Boston and they all said I had dry eye and ocular rosacea, they could not explain the severe pain I had. Several said it was psychosomatic. I was hospitalized and a neurologist suggested gabapentin 1200mg 3X/day. I also take tramadol 3X/day and cymbalta 60mg at bedtime. I use restasis, and thera tears (every 5-15 min), and celluvisc at bedtime AND during my afternoon "rest". My life isn't great. I miss out on a lot, my eyes are always dry and irritated but the pain I initially suffered is cut down enough now that I can function again. I did go to the Boston Foundation for Sight 2/2010 and I could not tolerate the lenses. The edges felt like they were trying to dig into my eyes (although the moisture was wonderful). They did a scan and told me my eyes were "hyper-sensitive" and that I have corneal neuralgia. [Not many eye doctors have accepted that this is a real diagnosis/disorder. In fact, when I was first given this diagnosis from my pain specialist/neurologist in 2006 I went to tell my corneal specialist and he laughed saying there was no such thing] They suggested a new therapy called the scrambler. I guess they place electrodes around your eyes and it's suppose to "scramble" the pain signals the nerves send. It's only for the neuralgia NOT for the dry eye. They said if it works I could cut down or stop the meds and possibly be able to use the sclera lenses. I have to admit it sounds good but when I was there only 1 other woman had had the treatment so I want to wait awhile and see where this goes.

[Rebecca Petris]

Hi there and welcome. Sorry to hear what you've been through!

Did you try good moisture chambers and if so any benefit at all?

They did a scan and told me my eyes were "hyper-sensitive" and that I have corneal neuralgia. [Not many eye doctors have accepted that this is a real diagnosis/disorder. In fact, when I was first given this diagnosis from my pain specialist/neurologist in 2006 I went to tell my corneal specialist and he laughed saying there was no such thing]

You will get similar reactions from all but a few specialists. This is new territory in ophthalmology and very few have ventured there. My guess is it will be many years before some of the BFS/Dr. Rosenthal's views on corneal pain gain acceptance from the mainstream: but it will happen when proper research is completed. Takes time.

They suggested a new therapy called the scrambler. I guess they place electrodes around your eyes and it's suppose to "scramble" the pain signals the nerves send. It's only for the neuralgia NOT for the dry eye.

It's a very new concept and as you found is just starting to be tried for unresponsive corneal pain.

[ringo]

Hi.

I am really sad to hear what you are going through. I have a similar story of pain, and it was really debilitating. In my case the pain was directly correlated with the inflammation that underlies dry eye condition. It takes a long time to bring this inflammation under control; I have been on Restasis for years without any imrovement; actually I worsened and developed severe corneal erosions.

If you read my posts, you will see that what brought me relief gradually was higher concentrations of cyclosporine in corn oil and in ointment, combined with a mild steroid drop, plus a tablet called pilocarpine that stimulates tears.

I notice that doctors are not giving you any serious treatment for dry eye inflammation which most probably is causing you great pain and this over long time may very well cause you corneal neuralgia/ or desensitization-- all related to corneal nerve damage from long standing inflammation.

Also, I notice that they are giving you medicines like Tramadol and Cymbalta, and the other one you mentioned, all of which are powerful eye drying agents. The combination of them together must be causing a major decrease in tears in someone with dry eye. I am sure that these medications are actually contributing to the worsening of your situation, and you must switch to a different kind (for ex. I use Ponstan Forte when I have pain and it helps without drying;I think it even helps with the inflammation; however Brufen for ex. dries out my eyes a lot; and of course Tramadol dries them out altogether).

I believe that if you are given a more serious and aggressive treatment for dry eye (medications that target inflammation and stimulate tears), plus stopping the drying medications you are currently taking/replacing them with something less harmful, will bring you a lot of relief, although it will take a few months of gradual improvement.

I am still amazed to see the way doctors deal with dry eye condition; it is really uncharted territory for many of them. For example, they are diagnosing you with SEVERE DRY EYE, and they never prescribe even standard treatments for that (doxy for ex.!), steroids, NSAIDS, increased cyclosporine, pilocarpin/evoxac, etc. There are standards of treatment of dry eye outlined in every ophthalmology textbook, and instead of applying that, they are giving you medicines like Tramadol, which is supposed to relieve the pain, but because it dries out your eye even more, it actually makes the cause of the pain ever more severe. So puzzling. and so sad.

Please read my posts regarding cyclosporine. It brought me my life back.

Please keep us posted what you are doing and how you are.

God bless you and breang you healing,

Dani

Please let us know

I have suffered for 5 years with severe dry eye and eye pain. The pain came on suddenly one day while shopping, 3/2005. I was fine one second and then in severe pain the next. Like ice pellets being shot into my eyes. My lower lashline felt like welding sparks or bacon grease was being splattered into them. I almost killed myself during those first 3 months. I saw over 20 eye doctors in and around Boston and they all said I had dry eye and ocular rosacea, they could not explain the severe pain I had. Several said it was psychosomatic. I was hospitalized and a neurologist suggested gabapentin 1200mg 3X/day. I also take tramadol 3X/day and cymbalta 60mg at bedtime. I use restasis, and thera tears (every 5-15 min), and celluvisc at bedtime AND during my afternoon "rest". My life isn't great. I miss out on a lot, my eyes are always dry and irritated but the pain I initially suffered is cut down enough now that I can function again. I did go to the Boston Foundation for Sight 2/2010 and I could not tolerate the lenses. The edges felt like they were trying to dig into my eyes (although the moisture was wonderful). They did a scan and told me my eyes were "hyper-sensitive" and that I have corneal neuralgia. [Not many eye doctors have accepted that this is a real diagnosis/disorder. In fact, when I was first given this diagnosis from my pain specialist/neurologist in 2006 I went to tell my corneal specialist and he laughed saying there was no such thing] They suggested a new therapy called the scrambler. I guess they place electrodes around your eyes and it's suppose to "scramble" the pain signals the nerves send. It's only for the neuralgia NOT for the dry eye. They said if it works I could cut down or stop the meds and possibly be able to use the sclera lenses. I have to admit it sounds good but when I was there only 1 other woman had had the treatment so I want to wait awhile and see where this goes.

[beatles116]

I have suffered for 5 years with severe dry eye and eye pain. The pain came on suddenly one day while shopping, 3/2005. I was fine one second and then in severe pain the next. Like ice pellets being shot into my eyes. My lower lashline felt like welding sparks or bacon grease was being splattered into them. I almost killed myself during those first 3 months. I saw over 20 eye doctors in and around Boston and they all said I had dry eye and ocular rosacea, they could not explain the severe pain I had. Several said it was psychosomatic. I was hospitalized and a neurologist suggested gabapentin 1200mg 3X/day. I also take tramadol 3X/day and cymbalta 60mg at bedtime. I use restasis, and thera tears (every 5-15 min), and celluvisc at bedtime AND during my afternoon "rest". My life isn't great. I miss out on a lot, my eyes are always dry and irritated but the pain I initially suffered is cut down enough now that I can function again. I did go to the Boston Foundation for Sight 2/2010 and I could not tolerate the lenses. The edges felt like they were trying to dig into my eyes (although the moisture was wonderful). They did a scan and told me my eyes were "hyper-sensitive" and that I have corneal neuralgia. [Not many eye doctors have accepted that this is a real diagnosis/disorder. In fact, when I was first given this diagnosis from my pain specialist/neurologist in 2006 I went to tell my corneal specialist and he laughed saying there was no such thing] They suggested a new therapy called the scrambler. I guess they place electrodes around your eyes and it's suppose to "scramble" the pain signals the nerves send. It's only for the neuralgia NOT for the dry eye. They said if it works I could cut down or stop the meds and possibly be able to use the sclera lenses. I have to admit it sounds good but when I was there only 1 other woman had had the treatment so I want to wait awhile and see where this goes.

have you tried ipl???

[nycdryeyegirl]

Hi!

I strongly suggest that you make an appointment with Dr. C. Stephen Foster who is located at the Massachetts Eye Research and Surgery Institution and if you to wish to make appointment to see him, you can contact his office at 617-621-6377.

Dr. Foster is of the best ocular immunologists (a doctor specializes in inflammatory ocular disorders) in the world. My eye doctor did a fellowship under Dr. Foster at Cambridge.

I had to do alot of research to find an excellent eye doctor because I had an acute severe inflammation of my tear glands, which required serious medical treatment because of my underlying auto-immune disorders. I had conferred with my rheumatologists about consulting with the eye doctor I am currently seeing (who did his fellowship in ocular immunology with Dr. Foster) and/or going to Dr. Foster. Unfortunately, it is hard for me to travel to Cambridge at the moment, otherwise I would have consulted with Dr. Foster.

I hope you decide to see Dr. Foster because he is an excellent doctor.

Pam

[buntbean]

Yes, I did see him. He couldn't help me and referred me to Boston Foundation for Sight with Dr. Rosenthal

Hi!

I strongly suggest that you make an appointment with Dr. C. Stephen Foster who is located at the Massachetts Eye Research and Surgery Institution and if you to wish to make appointment to see him, you can contact his office at 617-621-6377.

Dr. Foster is of the best ocular immunologists (a doctor specializes in inflammatory ocular disorders) in the world. My eye doctor did a fellowship under Dr. Foster at Cambridge.

I had to do alot of research to find an excellent eye doctor because I had an acute severe inflammation of my tear glands, which required serious medical treatment because of my underlying auto-immune disorders. I had conferred with my rheumatologists about consulting with the eye doctor I am currently seeing (who did his fellowship in ocular immunology with Dr. Foster) and/or going to Dr. Foster. Unfortunately, it is hard for me to travel to Cambridge at the moment, otherwise I would have consulted with Dr. Foster.

I hope you decide to see Dr. Foster because he is an excellent doctor.

Pam

[buntbean]

have you tried ipl???

I actually had IPL for rosacea right before the neuralgia started. It has been questioned if the IPL triggered the neuralgia.

[buntbean]

Update

I took myself off the tramadol this past summer. I also went down on the gabapentin to 900mg 3X/day. Unfortunately, I had to start taking Lisinopril for high blood pressure. The doctors had said my eyes were so dry to begin with that any 'drying' medications weren't much of a concern. Honestly, I don't know what works and what doesn't. What I do know is that prior to the medication I was ready to end my life. I can't say life is what I would like it to be. I have some very dark days still but I also have days that I'm very thankful to still be here. My biggest concern is what will happen when I go through menopause. I'm 42 now.