How do you cope?

[Emmsy555]

I've had constant eye pain for a bit over a year now. I can't seem to find anything that brings the pain into a manageable level. I can accept that I will have to live with chronic pain, I can hopefully find the strength for that, but this level of pain is just crippling. I leave the house only a couple of times a month, the pain is just too much. I haven't been able to work and constantly (except for sleeping) have what feels like a deep horrible aching with burning, something akin to a constant migraine. If topical and systematic medications have failed you, where do you turn? How do you find acceptance that your life will no longer be what you hoped? I'm only 25 but I feel like a career and a family are out for me. How have others found a way to emotionally handle this?

I know many of you are suffering too and it's preaching to the choir to listen to me, but my family is jaded and my friends seem to have gone away, I need a sympathetic "screen" to vent to. =)

[dianat]

I saw a local pain doctor when I was at my worst.

[Margaret]

I'm sorry to hear what you are going though. There are pain clinics, as Dianat has mentioned, that might help. There is acupuncture (expensive but might be worth it)? What have you tried? I know you are describing your eye pain like a migraine, but have you tried migraine meds? List what you've tried and lets see if there is something else out there (Lyrica perhaps?) Acuvail?

Margaret

[Emmsy555]

Thanks for the kind words. I may have to look into a pain clinic, my life has really entirely stopped due to this.

Since the beginning I've tried, at various points: Steroids (I'm a steroid responder), every artificial tear (including dwelle), hot compresses, cold compresses, many supplements (still take flax, omega 3-6-9 and multivitamins), stopped birth control (about 9 months ago), gabapentin, exovac, lyrica, nortriplyene, doxy, goggles, night mask, ointment, prose lenses, plugs, restasis and blood serum tears (the last one being the only thing to help).

Again, that's a long list, but they were tried at various points individually, and the pills were given an appr. trial period before ended. =/ (adding in- I still use some of the above, in fear that it could be worse if I stopped, like goggles, compresses and supplements).

I'd say my eyes burned like acid for about 6 months straight, could barely open them, until I tried the blood serum. Now, they still always burn and ache, sometimes it's more an ache, sometimes it's more intense burning (the pain changes little with my eyes closed), but enough pain at any point to keep me in bed with ice over my eyes. My tbut is still about 3, despite my best efforts. My lids look and feel normal, I'm told my oil glands are open and my lids never stick. I'm told I must have intense neuropathic pain.

Um... you're all kind for listening to my little tirade.

I hope to try the pain scrambler at BFS in the future, but honestly, if nothing works, I don't imagine I can live much longer like this.

[buntbean]

this is Dr. Rosenthals email: prosenthal@bostonsight.org

[buntbean]

Have you considered going to New York to see a doctor named Dr. Latkany? I just learned about him and got his book (although it takes me forever to read with my eyes in pain). Sjogrens? Have you been to a rheumatologist.

I've been in your shoes many times wanting to give up and just kill myself. Please hang in there. My 1st year was the worst and I certainly go up and down still but don't give up right before our miracle happens!!

[Andrey]

Have you considered going to New York to see a doctor named Dr. Latkany? I just learned about him and got his book (although it takes me forever to read with my eyes in pain). Sjogrens? Have you been to a rheumatologist.

I've been in your shoes many times wanting to give up and just kill myself. Please hang in there. My 1st year was the worst and I certainly go up and down still but don't give up right before our miracle happens!!

that's the most ironic/tragic part of all this. you do want to read to get a better understanding but then you will have to pay for it, bigtime.

what a mess