TN Pain Moving Around Face As It Improves?

Been on 600 mg Gabapentin daily for about 2 weeks now. I'm taking it as a pill under the tongue. Less pain in left eye and in cheeks. BUT - as it has improved it goes in stages - this is post-herpetic TN. Virus doesn't act up much in left eye unless too much sun, wind, or other light. I have noticed that it has pretty much decided to fester in my right eye - the one damaged by an eye exam. Do those of you with PHTN, or even regular TN, notice as you start to get better, it focuses on one place in your face, gets better, then gets bad again, and basically, for me, it feels as if the virus is saying, like Arnold, "I'll be back!" In a few days I want to up the medicine to 750 mg, I tried that one day but I can't do it at 3 hrs apart, I felt awful, I'm going to try it at 4 hours apart. I know it will take time to get used to that increased amount, but I want to space it out as much as possible, I do 150 mg at a time. By the way, NO STOMACH PROBLEMS WITH THE SUBLINGUAL PILLS!!! If only my two neurologists had said the pill was available last fall, it would have saved me a lot of pain. We sure do have to research on our own and be assertive about what we want. Anyone going to the Irive conference? So looking forward to meeting some of you!!

Susan

Hi Sue,

Many TN and ATN patients and not a few PHN patients report that the sites where they experience pain tend to "shift around" ... pretty much whether the pain is improving overall or NOT.

As another avenue to explore if you continue to have sensitivity problems with Gabapentin, be aware that some physicians are willing to work with a compounding pharmacist to prepare a topical cream as the vehicle for delivering Gabapentin or other anti-seizure meds to the areas of the face which are most affected by pain at any one time.

Thanks Red for the comment. I tried a compounding pharmacist and he said that since my pain is mostly in my eyes a compounding cream wouldn’t work. As long as I can keep the Gabapentin out of my stomach I should be OK. If it gets bad in my cheeks again I would try the cream. Right now I’m just keeping my fingers crossed, and toes, and maybe even my eyeballs.

Richard A. “Red” Lawhern said:

Hi Sue,

Many TN and ATN patients and not a few PHN patients report that the sites where they experience pain tend to "shift around" ... pretty much whether the pain is improving overall or NOT.

As another avenue to explore if you continue to have sensitivity problems with Gabapentin, be aware that some physicians are willing to work with a compounding pharmacist to prepare a topical cream as the vehicle for delivering Gabapentin or other anti-seizure meds to the areas of the face which are most affected by pain at any one time.

Regards and best,

Red Lawhern, Ph.D.

Resident Research Analyst, LwTN