Amitrypline vs. Neurontin: Cornea Neuralgia

[Cali]

So I just found out I have cornea neuralgia in my right eye (in addition to MGD). I have a choice between a low does of Amitrypline or Neurontin.

Has anyone had more success with one of these drugs. Amitrypline seems to have provided a number of people relief. I haven't see any posts on success with Neurontin.

What's the scoop out there for people trying these meds?

I've read Neurontin has significant side effects, but the low dose Amitrypline may cause dry eye and be better for deep throbbing nerve pain. I have that foreign body sensation.

I guess I could do a month on Amitrypline then switch to Neurontin if necessary. Amitrypline seems to be a milder med.

Any input is appreciated.

[Fitch]

hi cali. I too have corneal neuralgia. I know everyone responds differently based on their chemistry but these are my experiences so far with the meds for this. Tried low dose amitypline 5mg to start with. Even with that small dose it made me very tired and also emotional where i would swing from sad to mad with no warning. It did help with the pain but i couldnt put up with the other side effects so gave up. Was going to try pamelor which is the cousin to amitrypline but before i could i was given low dose klonopin and it has really helped with the pain. I have only been on it 2 weeks but these have been the best 2 weeks in terms of pain that i have had in the last 7 months. I take .5 twice a day and it makes me a little tired but nothing like the amitrypline did where i could hardly function. Tried tegretol and while it helped with the eye pain it gave me unbelievable headache pain that was worse than what i was feeling in my eye. In addition it also made me very lethargic and moody. I have read that amytrpline and tegretol work good for some people with corneal neuralgia but unfortunately it wasnt for me. Tried lyrica and it was great for overall feeling better but did little for the eye pain specifically. It also made me crave sweets and carbs and i am a fitness freak so that was not working out well for me. However lyrica has much less side effects than gabapentin or neurontin so i did not even try those. After 7 months of pain and having to basically diagnose myself since all the "experts" say my eye looks great and the pain shouldnt exist i have found that Dr. Greg Gemoules' sclerals, 50 percent blood serum drops, and klonopin have been the best combo i have found so far for me in dealing with this horrible pain. Mine is from lasik so it is hard not to blame myself for doing elective surgery but i feel like i am getting a little better every day. I may also try the 1 percent lacosamide drops that dr. rosenthal at BFS has used with success for corneal neuralgia. They make them at leiters pharmacy and it is $50 for a 5 ml bottle and $100 for a 10 ml bottle plus $35 overnight refrigerated shipping. They do not need to be frozen and last 30 days once the bottle is open. In his studies he found that applying the eye drop once every 4-5 hours gave significant pain relief. The patients that used 1 drop mixed with saline solution in their scleral lens had all day relief with just the 1 drop. You can find info on his case studies at "http://www.faqs.org/patents/app/20110071631" Just scroll to the bottom of the page and he has 5 different case studies regarding the therapy. I know this is alot of info but i hope it helps you and others out and i hope that i too can learn from your shared experiences with what works for you.

[DCRdryeye]

Amitripline can actually cause dry eye, I was offered it recently by my shoulder surgeon and refused. Lyrica and Neurontin are in a class of drugs called Anticonvulsants. They work for some people and not for others. It's difficult for an oral drug to reach the cornea due to the lack of blood supply in that area. Perhaps that's why we always here about "drops" and it's interesting studies Dr. Rosenthal has done on Lacosamide, which is also an anticonvulsant (same as Lyrica/Neurontin). He uses it as a topical solution rather than oral.

[Cali]

So in both cases it look's like best bet is the scleral lens is being used with a drop, lacosamide. I wonder if the neuralgia can ever resolve. Meaning, if you disrupt the pain signal long enough to re-wire the brain? I'm also on serum so I'm wondering if that can help at all with neuralgia.

[Fitch]

i wonder the same thing cali about it ever being resolved. My doctors tell me with time it will continue to heal but i am not so sure. I believe the serum drops help but the lacosamide would probably be the most effective in conjunction with the scleral lens so i will probably be trying that in about a month or so and i will let you know how it is working. I believe the blood drops have helped heal the surface of my eye but not so sure if they are healing the nerves since i am not being regularly looked at with a confocal microscope but i can tell you i have less pain since using the blood serum drops with the scleral and the improvement for me was fast; i was feeling relief within the first month. My vision is still not the best in the bad eye but has also improved slightly with the blood serum drops.

[Faith1989]

I have never had LASIK or any other type of eye procedure minus lipiflow. My specialist thinks that I may have some type of nerve problem as my tear production isn't to bad, and tbut is bad but not horrible. He believes I am in pain but my "test scores" show mild dry eye, he said pretty mild. I feel horrible though and do have redness in my right eye. This is the only eye that hurts.

For those of you who have been diagnosed with corneal neuralgia, what does it feel like? Just am wondering if I am feeling the same thing...

[Fitch]

hi faith. I have no redness in fact my eyes look fantastic. I have tears and no gunky buildup and my eyes are almost always bright and white. Unfortunately despite its appearance the one eye never feels fantastic. The feeling of corneal neuralgia for me is a pulsing sharp pain that is pretty much constant and feels like it is coming from the middle and/or back of the eye. It also frequently will be in conjunction with a headache around the temple area on the same side as the eye. I feel fortunate that i only have it in 1 eye as well. Scleral lens, blood serum tears, and medication have saved me. My pain was a 10 and is now around a 4 most days. I also have increased light sensitivity and tv really aggravates the pain and the computer too but not as much. I hope you can find relief because most of the eye "experts" dont know what to do with people like us and think the pain is all in our head. No one took me seriously until i went to see Dr. Gemoules in Dallas and got scleral lenses which helped immensely. Best wishes for your continued healing

[hosanna13]

Hi, I'm also wondering how other people experience their corneal neuralgia. Does it have to be sharp? I have a dull, pain sensation in the inner corner portion of my sclera in the right eye only. Does the pain have to be constant? Mine comes and goes, and I don't feel it while I'm sleeping. The pain usually gets worse towards the end of the day. Do cold or hot compresses help your pain? Is the pain different from the general burning sensation of dry eyes?

[Cali]

Mine rotates between quadrants, in my right eye only. If that eye gets a tiny bit dry, I have a chafed feeling in the upper right quadrant. It then moves to the lower right with a foreign body sensation. If I don't saturate with drops, it will move to the upper, inner left and ache. It will continue to ache then turn into a headache. So, for me the pain can be all types and change depending on the environment, situation, circumstance.

[hosanna13]

Thanks, Cali. Isn't it crazy? Every single day is a new experience with DES. You just don't know what you're gonna get. Some days are good days and others are so painful you wanna curl up into a ball and cry.

[Cali]

Yes. You do want to curl up and cry. I sometimes go a month or so feeling OK then sink into a 1-2 week depression. I swing between hopeful and hopeless.

[Faith1989]

I am the same way as both of you. Some days my eyes are clear with no inflammation and i want to just jump for joy... others i want to die. I am still trying to figure out what i have done/not done/ate on those days that make me flare. i keep a diary and have found some triggers but nothing major. I thought my red eye was coming from Restasis but I stopped and my eyes didnt really clear up any, in fact my lids got worse..so i am on it again just once a day for now. Guess you just gotta try a combination of different things until you find "what works"

-feeling frustrated!

[Katewest]

I went to a neurologist on Friday who prescribed carbamazepine for the neuralgia. im only taking 1/4 of a pill 2x daily because of the risk of reaction to the med. I'm hopeful b/c he thinks he can treat me.

[Cali]

Kate, can you keep me posted? Please PM me with any updates. I know others had success with "carbamazepine."

I went to a neurologist on Friday who prescribed carbamazepine for the neuralgia. im only taking 1/4 of a pill 2x daily because of the risk of reaction to the med. I'm hopeful b/c he thinks he can treat me.

[Katewest]

Cali-
I will. He said it was the "first line" in treatment. Like I said I'm on a low low dose to "see how I handle it" for 2 weeks. Even the doc said I probably wouldnt notice any difference. But this drug has a very very slight/rare chance of causing TENS/SJS in some people, especially with Asian ancestry.