Meds For Neuropathic Pain?

[stella]

I am constantly on a tricyclic antidepresant -a low dose of dosulapin 75 mgs and also constantly on the NSAID naprosyn +cytotec for spinal arthritis
I have to take these to control my back pain

I have my eyes well under control -even taking these
I have no idea how i would be re- eyes without these drugs,and will probably never find out as they are non-negiciable in my case

I would say to anyone out there to take antidepressants and NSAIDS if you need them
THey will help you to control your pain - I dont know if they dry my eyes -they cant be doing too much damage or i would not feel as good about my eyes as i do

[Jade]

Rosenthal, et al wrote a good article on this called Corneal Pain Without Stain, Is It Real? He's from the Boston Foundation for Sight.
Belmonte, et al from Spain wrote Neural Basis of Sensation of Intact and Injured Corneas. Both covered what happens at the cellular level when nerves are cut and try to regenerate and end up producing more pain than if they were never cut.

[Raginator]

...We have Doctors dismissing the pain since they don't have the answers. I actaully had an opthamologist shout at me and tell me to get a psychiatric evaluation. I left his office in tears.

Chemia, I read this article and thought of you:

http://www.eurotimes.org/09October/Besttreatment.pdf

I quote the article:

In rare cases, patients experience eye pain long after surgery despite having nothing in terms of corneal staining that indicates they have a problem. He commented that surgeons tend to “write off” these patients as “crazy”.

The article then mentions complex regional syndrome and what not.

We're not crazy!

[buntbean]

I have corneal neuralgia

I was shopping in March of 2005 when suddenly I felt as if tiny ice picks were being driven into my eyes. I saw over 21 eye doctors, corneal specialists, neuro-opth., etc. They found that I had some dryness but nothing that explained the pain I was in. They agreed it was probably psycosomatic . I lived in agony for 3 months. I was seriously contemplating suicide so my doctor gave me percocet for the pain which put me in the hospital because of side effects. Once there, I had CAT scans, MRI's, etc. and they didn't show anything. A psychiatrist came in and he prx me an antipsychotic. My primary wouldn't allow them to give it to me though. Then a russian neurologist came in and said he believed it was a form of neuralgia. Then I was prx Cymbalta 60mg(because it helps with nerve pain and the depression), gabapentin/neurontin 2 600mg tabs 3X/day, I also take 1 tramadol 3X/day, restasis, and lorazepam (anxiety med) 1X/day because I have to lay down every afternoon to rest my eyes and everyday it's a struggle for me to do it and I still suffer with alot of anxiety. I know that might sound like alot of meds. I NEVER took anything before I got this. I hate medicine but when it literally became a life or death thing I didn't care anymore. This regimen lets me enjoy my life somewhat. I still have a day or several weeks at times when the pain gets worse for ??? reason and then it subsides again. It was 5 years for me in March. I met a pain specialist who told me I had corneal neuralgia but my corneal specialist told me there was no such thing. Then I met Dr. Rosenthal at the Boston Foundation for Sight and he confirmed my diagnosis. I've heard other people have tried Lyrica without alot of success. Yes, the meds have made my eyes drier and I have to deal with that discomfort but that's a hangnail compared to childbirth when you've felt nerve pain. I was a very happy, upbeat person prior to this but when you live with this kind of pain how can you possibly not become depressed and anxious??!! My faith in God has helped bring me through but everyday is a struggle. I just have to remind myself that yes, it could be worse. I just heard of an 8 year old girl who got the flesh eating bacteria in her hands and feet and had all 4 limbs amputated just last month. I live 2 hours from Boston. I've been to the best of the best and even they assumed I was just crazy. I went to see the doctor who invented a certain plug and he didn't even want to deal with me. His assistant was very sympathetic and told me that the doctor had seen several people just like me over the past week and he didn't know what to do with us, so, he sent us away without any help. Sad! God bless all of you! I'm so sorry any of us have to suffer with this.

[cristiandryeyes]

How is neuropathic pain like ? What I feel is like a muscular pain in the back of my right eye. They've checked my optic nerve and everything is fine. It feels like some sort of pressure. It's really annoying and drives me crazy. Thanks god it's not constant and occurs me when I'm working on the computer or I look myself in the mirror at a very close distance.

[presh]

I've thought alot about neuropathy for my new eye pain as well. When you are constantly "focused" on your eyes (and how can you NOT be?) then you could, in theory, get kind of a "pain wind-up" where your nerves don't recognize the fact that you aren't in pain anymore, etc...

I am currently taking Elavil (Amitrypteline sp?) and increasing the dosage by 10 mgs every 2 weeks. This was suggested to me by my sister who is a nurse practitioner. I was already on 10 mgs of Elavil for migraines.

It is helping. I just quit all drops, etc 2 days ago. I've had it and I'm going this route for now.

[buntbean]

so discouraging

I was so happy to get a letter from Dr. Rosenthal explaining that I had corneal neuralgia. I went to my regular corneal specialist in Boston for a check-up. I figured he'd finally believe me after reading the letter. He smirked at me and said, "yah, he believes in that stuff", like we were talking about UFO's!! I've had this for 6 years now and I too wake up in pain and go to bed in pain. Some days I just crumble, cry, and pray. I have ocular rosacea as well.

[Rebecca Petris]

That pretty much always happens to doctors on the cutting edge, I think. In ten years corneal neuralgia may just be a 'household name' among cornea doctors. It's a process that takes time.

Looking at the bigger picture, it is pretty much routine in dry eye that the more doctors you ask, the more different answers you will get. Each has their "niche" that they are very attuned to. Who is actually "right" may or may not be a meaningful question. The same patient may go to 5 doctors - all highly reputed specialists. One thinks they have moderate to severe MGD. One things that conjunctival chalasis is causing all the pain. One thinks it's all about allergies. One thinks it's all about demodex. One may think it's corneal neuralgia. Don't forget... they might ALL be right, and yet all wrong... as in, you may have any or all of those conditions but what is actually causing your discomfort? No one can really know that to a certainty, unless and until they can deduce it by what removes the discomfort, and even then, it may remain a great big question mark.

[jimi51]

Hi,
I am two and half years post lasik, I too am in terrible pain, especially at night but like many of you, I can't do anything without Panoptix and many drops, never a "comfortable" moment. I was recently dx with cornea nueralgia by Dr. Rosenthal. I went in to have a sclera lenses fitting and the pain was excruciating, thus the dx. My question is, does it ever go away, is there any documented evidence that it can get better on it's own? And why are they still doing LASIK????

Brad

[needhelp640]

Hey everyone,

I was wondering if my problem was also neuropathic pain after LASIK. Do any of you have pain that alternates eyes during the day? like a couple hours in your right eye, then a couple hours in your left eye, then back to your right? and almost never pain in both at the same time?

[jimi51]

Hey everyone,

I was wondering if my problem was also neuropathic pain after LASIK. Do any of you have pain that alternates eyes during the day? like a couple hours in your right eye, then a couple hours in your left eye, then back to your right? and almost never pain in both at the same time?

I have pain in both eyes most of the day, some times one hurts more than the other but I think that is part of the dry eye as well. The only time and am "comfortable" is in the morning, in the hot shower, it is downhill after that. By evening, if I am trying to watch TV, I usually end up with ice packs to calm the swelling, then Genteal and bed. They were not kidding when they told me that LASIK would change my life!

[Guest]

They were not kidding when they told me that LASIK would change my life!

Haha! Sooooo true... too bad we never knew ahead of time just HOW it would change our lives!!

[buntbean]

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.

[grandmamac]

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?
Thanks

[rosye]

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.