I hope so too - pain is not fun.
Are they looking into removal of the lesion as well?
Thank you so much for responding. I just starting looking into acupuncture for her, waiting for the Dr to call me back. I did hear Botox may also be an option. This poor child is missing so much school and just missing out on being a teenager! She is already on topamax, trileptal, and magnesium. Hoping they find the right combo of meds soon!
I am sorry to hear about your daughter. I hope someone chimes in with the same tumor. I seem to recall hearing someone post with the same but it was a while ago if I remember correctly. Unfortunately our search comes up with older posts first rather than newer ones (ugh!) which makes it harder to find recent people posting about specific topics.
I have trigeminal neuralgia myself and I am on a class of meds such as neurontin, keppra and topamax that they give for nerve pain - so I assume the docs have tried that.
Other options I have heard is botox to deaden the nerve but if the eye is effected they cannot do that. They can do a temporary try with another anesthetic to see how it will work.
I would also consider acupuncture. The needles may seem freaky at first, but I find it really works well if you find a good person and it can really reduce inflammation and pain. There is a website where you can search for "medical acupuncturists" and get doctors (MDs) that are also acupuncturists and they may be able to help you.
I control my headaches and pain using acupuncture as well as using topamax so it may take a multi-pronged approach.