Any help for pain?

[Roe72]

I have ocular rosacea, MGD, severe dry eye, blepheritis etc. Currently I am using Restasis 2 x daily (7 months), Lotamax, scleral lenses, Minocycline 50 mg, hot compresses 2 x daily, preservative free tears and erythromycin ointment prn. Usually I have good mornings, OK afternoons and miserable evenings. The sclerals help with the pain but my eyes get tired and want them out. When I take them out the pain can get really bad. I haven't found an opthalmologist that deals with the pain issue at all. Before I got my sclerals I was in so much pain one evening I had a full blown panic attack. When I went to my eye dr the next day she suggested I take an Ibuprophen! Gee! I wish I would have thought of that! My regular dr gave me some Tramadol but that makes me really depressed, as if I wasn't already! Also, doesn't help pain much. Tylenol helps some...for about 15 or 20 minutes. I read on dry eye zone that some people are trying Lyrica and Neurontin. I asked my corneal specialist (at a major teaching hospital) about that and she looked at me like I was a monkey that escaped from the zoo! She said she never uses them in her practice. I don't want to take systemic drugs but I would like to occasionally go out to dinner or maybe do something besides sit in a dark room! I also don't feel I need antidepressants. I just need my eyeballs to stop hurting. Any help or ideas would be appreciated.

[Katewest]

Ok I just wrote a paragraph and deleted it somehow so here are the cliff notes....Same boat, OR, MGD, Bleph but not "Severe dry eye" at least not in the signs. Confocal Microscopy showed nerve damage and Dr. Jacobs at BFS suggested systemic pain meds, serum and/or steriods. My local corneal spec. said "no way" to all but serum and said try artificial tears for 6 weeks and come back. I was soooo frustrated!! Called Dr. J who suggested a neurologist. My appt is Fri and I'm hoping he will rx systemic pain meds. Dr. J said its not a long term thing, a few months maybe just to get ahead of the pain. I dont want to take them either but I am willing to try b/c i know its not forever.

[MLE]

My two cents- find a new ophthamologist- someone a little more experimental in nature who is willing to learn with you. I think if you look around you can find someone. Can Dr. Jacobs just Rx that stuff for you and officially become your "primary"?

For those of you living in Mid-Michigan, I give Dr. Matt Yeomans (Corneal Specialist at Lansing Ophthamology) two thumbs up for his willingness to listen and to try new therapies. He was willing to learn how to perform probing for me (I was "patient one" and it went fine), and he has prescribed Neurontin and Lacosamide eye drops for my PROSE lenses (again, "patient one" for him). He views the process that we are learning together and he gets just as much knowledge from me as I get from him. His bedside manner is wonderful. So- those guys are out there. You just have to go through the very annoying and time consuming effort to find them.

-MLE

[Katewest]

I asked Dr. Jacobs that b/c I hate explaining my eyes to every new doc but because she is across the county she cant. MLE- has nuerontin helped you?

[MLE]

Roe 72- Also wanted to add something that works for me for pain. My background: diagnosed with DES and MGD in September 2011. No cause has been identified, but I suspect some retinol cream I was using around my eyes to get rid of melasma (sigh, vanity causing a debilitating illness. . . something for others to think about). After a VERY long journey of drops, trips to experts, allergy testing/hyposensitization, punctal cautery, probing, CCH surgery in both eyes, I was still in misery- until I got fitted for PROSE lenses. They have helped tremendously, but even with them in place I still get weird corneal pain- photophobia, sometimes stinging and tearing, but mostly a cold ache. It comes and goes. I use lacosamide drops in my PROSE lenses, and i take neurontin. I also have back pain with numbness/tingling down my arms which is exacerbated by heavy computer use at my job (started long before the eyes). So in general I think I have a CNS that likes to "scream" at the littlest insult.

In any case, when the eye and back pain gets really bad I find one of two things help greatly: 1) ONE glass of wine or 2) a low dose benzodiazepine (xanax, atavan, valium etc). Now at first this makes me sound like some kind of addict, until I went on medline and did some research. . . both alcohol and benzodiazepines act on GABA pathways in the CNS, which regulate pain. At least in my case, this makes me think I have some GABA related aspect of both my corneal and my musculoskeletal pain. The only reason benzos haven't been further developed for pain are their side effects (sedation, abuse liability). I'm going to see if my doc is willing to carefully put me on xanax for those particularly bad days, which with the sclerals in place only happen about once every few weeks. Just something to explore.
-MLE

[MLE]

Hi Katewest-

Maybe yes maybe no for neurontin- my pain is so episodic that it is hard to tell. I can tell you that lacosamide seems to help in my PROSE lenses. The biggest shift in pain for me was just getting the PROSE lenses. Before them the pain was enough to derail my day and have me spending all of it at home in fogged up goggles. Now a "bad" day is uncomfortable, but in no way limits my activities. The pain is at a level where I can set it aside and continue with normal life. What a difference!

However- I want to add- I didn't feel relief from my lenses right away. The burning/stinging was relieved immediately, but a lot of the other pain wasn't. It took me taking them home and wearing them for a few weeks for full benefit. I'm saying this so those of you who were discouraged by no quick response to PROSE may reconsider and try again- I wasn't super encouraged in my first visits.

-MLE

[Katewest]

I tried the PROSE and didnt get relief. They said because my eyes were not clinically that dry. Unfortunately, the trip to Boston can not be repeated for a while. Is lacosamide a rx drop?

[MLE]

Mine weren't clinically that dry either on the day I started- they are usually about a 2 or 3 in each eye, but they were a 5 and 6 then. . . go figure. . . the principal thing causing my pain was MGD and very rapid TBUT (or so I thought). They still helped me because they got rid of those small spots of exposed cornea that happen with a quick TBUT- with PROSE you have a blob of saline over your eye that isn't going anywhere- but there is some unexplained pain component with my disease also. I am one of those cases that "never looks that bad" under the slit lamp, but hurts like heck.

Lacosamide is an Rx drop, that is compounded by Leiter's Pharmacy in San Jose. They will ship it to you. My ophthamologist prescribed it.
-MLE

[Roe72]

Thanks everyone for the suggestions. Will ask for the lacosamide drops. Just wondering, what is the difference between the Prose lens and scleral lens. I mean I know u get them in Boston and they are really expensive but I don"t know the difference.

[DCRdryeye]

It's not surprising all these array of treatments and the pain and misery is still there! That's because we are not supporting the top researchers who hold answers. The cures or at least significant better treatments exist to almost totally eradicate the misery of Dry Eye and MGD/Blepharitis. These researchers lack funding, and part of the reason is the trivialisation of Dry Eye. But my colleague and I are working on fund raising to speed the process. You'll hear further on this in the near future.

Furthermore, Scleral Lenses don't work for everyone and is only a band aid fix. I wrote a blog recently on Scleral lenses and highlight some of the short comings and why some patients don't comply well with them, read my blog titled "SCLERAL LENSES FOR DRY EYES" at http://australiandryeye.webs.com/app...-for-dry-eyes-

[Cali]

Find another doctor. A neurologist or pain specialist willing to work with you. They are out there. I saw 10 cornea specialists and finally found one who took me seriously. I am on 20mg of Amitrypline nightly. I had my choice of Amitrypline, Neurontin and Lyrica. Neurontin is the one most prescribed for cornea neuralgia. I chose to start with Amitrypline because it is an anti-depressent, but at doses of 25mg-100mg a day. My low dose helps with neuralgia. A side effect is dry eye but I was told by the pharmacist that at my low does it shouldn't be an issue, and it isn't. I think it's helping a bit with my depression. So, I'm killing two birds with one stone, cornea neuralgia pain and depression from my cornea neuralgia pain.

[Katewest]

Nice Cali! I'm seeing a neurologist tomorrow. Did your doc say how long you should be on it for?

[Jade]

Have you looked into conjunctival chalasis? It causes pain and can happen as a consequence of dry eye.

[Katewest]

Is that what you have Jade? Symptoms?

[Fitch]

i second the lacosamide drops and blood serum drops especially when used in conjunction with scleral lenses. This has given me the most dramatic relief from pain taking me from a 10 to a 3 on the pain scale with my corneal neuralgia. Get a practicioner that is not afraid to let you try new things like lacosamide. Everyone is different and had i not changed opthamologists i would never have been able to get better like this since my other doc said no to the lacosamide and only would do blood serum after i pleaded with him. Using the two treatment regimens in conjunction with sclerals has been my saving grace but you can still get results with the drops even without sclerals; i just believe because it sits on your eye all day with the sclerals that you get better faster relief that way.