I didn't have lasik but I can SO relate with everything else. For me, the pain changes. Everyday I suffer, just some days (or weeks) are worse than others.
I did read once (where ?) that someone did have their pain just stop. I figure if the pain "lightswitch" got turned on so suddenly maybe (dear God PLEASE) it will someday turn off just as suddenly.
Hi, I'm new to this forum, but 2 1/2 years with miserable dry eye, and after trying everything, I'm looking into neuropathic pain options. And yes, my misery alternates between both eyes, but sometimes it is both too.
Have you tried any of the meds that have been mentioned and have you had any success?
Early this year I was so desperate and frustrated with my eyes that I pratically gave up on ophtalmologists and decided to look for a neurologist/pain specialist. That was because I realized that my biggest problem was the pain itself, since according to all opthalmologists I came by, my eyes were dry, but not significantly different from any other post-lasik eyes, so I should not have the amount of pain I said I had. The neurologist was puzzled, since he never had even heard about chronic eye pain, and didn't know what to prescribe. I suggested amitriptyline, since one ophthalmo once told me this drug would help. He opposed at first, because it should dry my eyes even more. I told him I didn't know what else to do, so we decided to give it a try. I started with the minimum possible dose (25mg) and it was magical - the next day my eyes almost felt normal!! Since then, we progressively increased the dose to 75mg and also associated with Topiramate 25mg (I'm not sure why, since I felt my pain controlled with Amitriptyline alone).
After about one month after I started taking Amitriptyline, my eyes went bad again. I was worried the medicine was losing effect. Then I noticed I had a small stye. Went back to the ophtalmologist and treated the stye and ceratitis. Some weeks later, I was better again. And it has been like this since then. I realized that all along I suffered from 2 kinds of pain: neuralgia, wich is now controlled by Amitriptyline/Topiramate, and inflamation, that can come at anytime, from anything (too much computer, wind, air conditioner, scratching my eyes, allergies, etc). I imagine lasik left my eyes too sensible and prone to inflamation. When this happen, Amitriptyline has no effect and my eyes will hurt. But now I'm sure it will pass eventually and I'll be ok again. I'm not cured, but now I can tolerate my work and my life better. In that sense, I can say that Amitriptyline gave my life back to me.
I also continue treating my eyes as before. Using Vidisic Gel and Tranquileyes to sleep (I have lagophtalmos), taking flaxseed oil, cleaning my eyelids with baby shampoo or Blephagel, using non-preservative drops every two hours or so, using protective goggles at work or outside when it's windy. Basically, trying to avoid any nasty thing that can trigger an inflamation that the drug won't have any effect on.
But it's not all roses. Amitriptyline has preety much annoying side-effects too. I don't feel my eyes dryer than they were already, but my mouth is dry all the time. I have to carry a water bottle with me everywhere I go. At first, I felt very drowsy and couldn't function at night (the doc told me to take the pill at 6pm). When I started taking it later (before going to bed), this problem was solved. The major problem right now is constipation. I can go for days without any bowel movement whatsoever. I have to take laxatives so I can relieve myself at least once a week. And I also gained 7kg since the treatment begun (it makes me want to eat, even if I'm not hungry). >
I imagine I would ask for a lower dose if I was working at home or in any less aggressive ambient (I'm a webdesigner/programmer, 8.5 hrs a day in front of a computer, under air-con), so I wouldn't have to bare the side-effects so much. But this is my career for now, and I absolutely need this drug to continue working. I plan on taking it for as long as need.
Rosye, Thanks for the informative post and for sharing what pain relievers are working for you!! My symptoms are similar to yours in that my my eyes look healthy in relation to the pain I am having. My dry eye pain is always there in both eyes but this other deep pain is only in my left eye and it comes and goes. No one can figure it out and it does not seem to correlate with the dry eye pain...at least I cannot tell. I had the deep pain this am and took 100 mg Neurotin along with Excedrin and it seems to be doing the trick. It might be back tomorrow or I can go for days w/o the pain. I also started an antidepressant Monday so I am hoping things will improve!!
Abby, I wish this meds work well for you! I think every patient is a patient, and we have to try everything before turning any treatment down. If neuralgia is not your issue, the meds won't work and you can try another thing. But maybe it's the answer, as it was for me, at least partially!
I took Gabapentin (Neurontin) for about one month and it helped a little to lower the pain, but it wasn't too effective and I stopped taking. I also was prescribed an antidepressant 2 years ago (Paroxetine) and hated it! I became litterally numb, slept for hours a day (thak God I wasn't working, because I could not function at all), wasn't feeling too depressive anymore, but also wasn't feeling too great, in fact, I wasn't feeling anything, as my life went by my eyes. Obviously didn't have any effect on my eye pain. And when I stopped, I became dizzy for almost 2 weeks until the drug cleared my system. I never want to get close to those pills again! :P
Because of this experience, and also because of my mom, that was depressed, treated with tryciclics (the same drug class as Amitriptyline) and ended up tooking her life anyway, some 15 years ago, I wasn't too excited about having to take any similar drugs. But I was at my wits' end. I was working for 6 months and my eyes were destroyed. It was either try that, ask for resignation, or spiral down on depression and I don't know what could have happened.
I don't feel any antidepressant effect from Amitriptyline (I read that it takes higher doses for this effect to be achieved). That is, it doesn't interfere with my emotions, I don't feel numb and I don't feel sleepy as long as I take it before going to bed. Many doctors won't want to prescribe it for DES pain, as it dry eyes, but I never felt my eyes drier while taking the drug than they were already before. Most importantly, it lowered my pain literally overnight, so I knew it was the right drug for me!
I also found Amitriptyline was the only thing that worked for me, literally a life saver. Very small dose taken at bed time, didn't cause any unpleasant side effects, and was the only thing that gave me a full nights sleep after months and months of waking every few hours. I haven't taken any for a long time now, but keep them close by just in case.
My doctor gave me gabapentin instead of Amitriptyline because the corneal specialist told her that the Amitriptyline is very drying to the eyes. Has anyone on Amitriptyline found that it causes further dryness?
I'm on cymbalta and gabapentin. I was told they wouldn't cause dryness in my eyes. I'm also on clonazepam and tramadol so I am wondering what is contributing to the dryness.
So I just got back from BFS and they are of the belief that my eye pain and dry eye symptoms are completely due to neuropathy. Was fitted 3 times with new lenses that were all supposed to fit well but seemed to have more eye agitation with them in then without, due to this and the fact that my eyes were only mildly dry in appearance they decided to try looking at my corneal nerves with the confocal microscope. The results showed that my nerves were inflamed and showed signs of branching so from this its believed that they are overly sensitive or excited.
While there I tried:
One week of light therapy which may have helped but i'm not sure.
Naltrexone drops 2xday - again not sure if itmade a difference but will continue.
Fisher Wallace device - seemed to give temporary relief of my symptoms - eye pain and headaches.
Just put an order in for the Fisher Wallace device and will be continuing with the naltrexone drops. Dr. says they it may take a month before i really notice a difference - Fisher Wallace should help to dull the pain temporarily and the naltrexone drops should helped to reduce the inflamation of the nerves.
My eyes felt fairly decent during my stay in Massachusetts, maybe it was the air not sure - now that I'm back home they feel much worse and i'm not sure why but figure its environmental - its dry here at home.
If i don't end up getting much relief with the drops or device in the next couple of months i figure i may have to try something like amitriptyline which seems to have helped out a number of people who have posted in this thread. Thanks
Wow....what a traumatic experience. Did you wind up leaving with the Boston lens? I have not ever heard of the Fisher wallace device but I looked it up and it looks like a Tens unit. Naltrexone..I looked that up as well...holy moley! Serious stuff.
Can I ask just one really simple question. Lord knows you look like you have been to the end of the world and back. I know this is going to seem really stupid given you have probably tried everything. But here goes...have you ever tried a simple bandage soft lens. There I said it...a really simple thing that most folks assume won't help. If you haven't tried it, you should. It appears you have tried everything else.
You might also try some of the Bromday I have alluded to. Its a non steroidal anti inflammatory great pain stuff.
Well, I am unfortunately not a sufferer..is that a word...but I am a doctor who really is interested in seeing what all of you are trying to get relief.
Aaronn, when I was @ both the Mayo Cliunic and Duke Medical, I was diagnosed with neuropathic pain. I have tried all sorts of treatments and the lastest IPL and Lipiflow and no progess at all. It is definitely worth trying some tricyclic antidrepressants and you sgould probably locate a good pain center or a neurologist who can help you find a suitable medication that could reduce some of the pain and where your life becomes close to normal.
Eyemech, I am currently wearing daily disposable silicone hydrogel lenses and they are great for the pain. I can actually cut onions, stand outside in windy conditions, and other irritating enviroments and my eyes don't react or go crazy. They work so well for me when nothing else did. I have a very understanding eye doctor who immediately understood my condition and never hesitated to offer me the lenses.