I have been dealing with what is apparently TN since Feb 2022. Initially, I had strange tingling in my scalp. Shortly after that presentation, while I was in the shower a direct hit by the water spray hit my left temple and the electric shock pain almost took me down. I then saw my PCP who prescribed 100 mg of Gabapentin morning and night. I continued to experience electric shock pain when I touched my temple but it was manageable until in March 2022 I had a horrible pain in my left temple which lasted for about 10 minutes and caused me to start screaming. My wife called our PCP and said I just took 300 mg of Gabapentin as a desperation move and was that OK. He said yes and after taking a hydrocodone and lying down I went to sleep.

I started taking gradually more Gabapentin and when I was taking 300 mg daily my symptoms subsided. A local friend who is a retired neurologist recommended that I see a surgeon at OHSU and, after a time, I was able to see a surgeon who told me that the reduction in my symptoms was not due to the Gabapentin but that TN symptoms come and go and that, within a year, I would have another episode but to go ahead and experiment with various dosages to see if there would be any change in symptoms. I reduced my dosage to 100 mg each morning and evening and my symptoms returned. I went back to 200 mg morning and night and they disappeared. In February 2023 I started getting the electric shock type pain in my left temple again.

I have since had a CT brain scan and an MRI brain scan with and without contrast. There was nothing amiss anywhere which was good but did nothing to explain my problems. However, for the moment, the pain has changed into a mild dull headache over my left eyebrow, a dull pain behind my left eye and s sharper pain in my left eyebrow when I occasionally raise it. One doctor, an ENT, said that my symptoms somewhat resembled cluster headaches. A neurologist said that it sounds somewhat like a migraine issue and I have had auras without pain for years. Just before the Feb 2023 episode started, I had a cluster of auras.

I have also had an occipital nerve block to see if that had any effect on my symptoms and it did not.

I only write all of this to illustrate how all of my problems seem to show how difficult it is to identify which nerves are the culprits in TN type pain. In my case it is clear that the opthalmic nerve is involved but what is causing it to misbehave? Hopefully, this will help others with TN type pain realize how tricky it is to make a diagnosis. I haven't given up and I have found that I can get real relief from Gabapentin but no physician I have seen pretends to know what is really going on in this very complex cluster of nerves.