Amitrypline vs. Neurontin: Cornea Neuralgia

[bungeeye]

I started on carbamazapine for neuralgia pain in July and have now increased to 300mg and it's definitely helping me. The pain has not totally gone but it's now at a manageable level for me. I had tried amytriptyline but it made me feel sick and anxious so I didn't stick with it, good luck everyone x

[Katewest]

bungeeye-i stopped taking carb b/c I got paranoid about the side effects, mainly steven johnson syndrome. I know its rare but there was a FDA black box warning. I am on gabapentin now and my doc doesnt think it will work as well but I guess is humoring me. UGH sometimes I think I should have stuck with the carb.

[buntbean]

Faith- I've been trying to track things for 8+years and aside from certain outside factors (bleach fumes, drywall dust, etc) that exacerbate the dry eye part of my problem (which can in turn cause the nerve pain to start/increase) I haven't figured out anything. At times the nerve pain will be so intense but if I eat something, it lessens. Go figure! I also agree completely with Cali. Things can be going well and can all change in an instant. I can go from feeling good to complete desperation. It's a constant roller coaster ride.

[NotADryEye]

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.

Cali, Are you sure you don't have chalasis?

[MLE]

I most likely have corneal neuralgia based on my clinical signs, but I have never had it definitively diagnosed. I have prose lenses, and take neurontin (which is the same thing as gabapentin) daily, and use lacosamide drops in my lenses. I'm not sure how much either of these things help- my pain is very episodic, and as much as I have tried to journal potential triggers or even how good or bad I feel on days when I haven't used neurontin or lacosamide I can't seem to nail too much down. For me the pain is photophobia, lots of (reflex) tearing, and a cold stinging ache. Today happens to be a "bad" day for me, which I get about every week to 10 days. However, with the lenses my "bad" days are no longer curl up on the couch days, but days where I can still live my life, work, read, exercise etc. The pain is managable and I am able to just set it aside.

By far (and I've posted other times about this) the most helpful drug for me is Alprazolam (Xanax), which is a benzodiazepine, same as Klonopin. They are more frequently prescribed for anxiety, and have an abuse liability and other side effects. However, I take a very low dose when I have a bad day, and it very predictably works extremely well. I was fortunate that prose lenses made such a difference for me- I know they don't work for everyone. I know my eyes will never be normal again, but I'm really happy with where I am now versus where I began with this horrid disease.

-MLE

[buntbean]

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.[/QUOTE]

I emailed Dr. Rosenthal a few months ago and he didn't seem to be working on anything. He was going to open a new clinic with Dr. Hamrah but that seems to have changed. I've been on neurontin for 9+ years now for my corneal neuralgia. I started on 1600 mg 3X/day but I'm now down to 600 mg 3X/day. I also use clonazepam as needed for pain. I have mgd that is horrible right now and one doctor suggested azsite but my insurance won't cover it. Not sure what we're suppose to be doing now. I can't use the sclera lenses.