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Does anyone have Ocular neuropathic pain
Hi, I am wondering if anyone has been diagnosed with ocular neuropathic pain. It seems like the condition is just recently being recognized and there are not a lot of known evidence-based treatments for it.
I’ve heard that some migraine treatments can be helpful for this condition. I’m currently in the process of trying to get Botox for migraine prescribed and approved. Has anyone tried this?
Thanks for sharing any advice, experiences, or encouragement you may have regarding this condition.
I feel alone, like I am the only person my age with severe dry eye that has led to this condition. (I’ve been dealing with treating severe dry eye for at least 5 years and I’m 40 now).
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@ashleyharris728 I am gabapentin as well. I am also sensitive to side effects. The dry mouth is what bothers me. Try the lowest dosage as possible if you are using this for your eye pain. You might have to play around with the dosage to get it right for you.
@ashleyharris728 yes I’ve tried most of those as well. Could not tolerate Meibo. Xiidra did not do anything for me and I have plugs in. I’ve had some me success with Tryptyr and the jury is still out on the eye serum. Can u appeal your insurance for Oxervate?
@edie2716 I did an appeal and they said no because I don’t have an NK diagnosis. From my understanding there is not a lot of treatment options for ocular neuropathic pain so the best hope is to try tx from other diagnoses like migraine, NK, etc. but that makes it hard from an insurance perspective.
Thanks for letting me know about Tryptyr. I haven’t heard of that one. I’ll have to ask my optometrist about that. Did you ever try Tyrvaya? Also supposed to help tear production, but it didn’t seem to work for me.
@edie2716 dry mouth is a really difficult side effect. I get it from time to time. I did get a prescription toothpaste to help protect my teeth from the effects of dry mouth.
I did a very slow ramp up to 200mg gabapentin (over the course of months) and I feel like I’m finally getting over the worst of the sedation but not seeing effects on pain yet. Maybe I need a higher dose.
@tubaozkocc how did you find the Botox experience? Did you do the full migraine protocol or a modified version? Was the treatment itself painful?
@ashleyharris728 Mine was actually more of a nerve block than Botox. It was done between my eyebrows. It hurts when they give the injection, but it goes numb immediately afterward. I had this procedure done for the nerves behind my eye, not for migraines.
@tubaozkocc oh okay, I’ve heard of those. So sorry to hear it didn’t help you. Have you thought of doing Botox? I’ve heard it may take a couple of rounds but it can be helpful.
@ashleyharris728 hopefully you can try Oxervate later once it becomes more available and possibly it will go generic. It took a while to get it and the initial price is obscene. A lot depends on your insurance coverage. Tryptyr is an eye drop you use twice daily. It Is for occular nerve pain that my Dr let me know about. It is new and does help more than the rest. I did try Tyrvaya but it was as effective as the rest.
@ashleyharris728 I hate the dry mouth. You might want to go higher on dosage. I was initially prescribed 100mg three times a day. She then double the dosage.
@ashleyharris728 maybe...btw,what is your symptoms?Is it same as dry eyes symptoms or was there unexplained symptoms?