Here's my story...
The pain first emerged 17 years ago after I nicked my nose (inside of nostril) with my electric shaver trimmer. The pain was initially at the right side of the nose bridge, where my spectacles rest, then at the centre of the right eyebrow and up the opthalmic nerve branch on the forehead.
The first episode was the most painful. Typically an episode lasts a few months and then I get a break of a couple of years. Sometimes it is just tingling along the nerve, other times stabbing pains on nose bridge or eyebrow. Currently I have pain in the centre of right eye when blinking, and sensitivity further back on the scalp. The trigger is generally something touching my skin, but sometimes it just happens without any trigger. Until the current episode, this didn't affect my sleep. Now it's a bit painful at times to lie on my right side.
This was diagnosed as TN by a neurologist a couple of years after the pain started. He didn't suggest any course of action except as I walked out of the door he said, "Vitamin B might help." I started taking a popular B1-6-12 supplement and 8 years later developed peripheral neuropathy in my feet. That went undiagnosed until it spread to the rest of my body 4 years later. A different neurologist told me that "over a long period even small doses of vitamin B6 can be toxic to the nerves." BE WARNED. In my case this was only 5mg one to three times a day. After that I dropped the B6 and took 500-1000mcg of B12.
Around 4-5 years ago I developed pain to the left of my Adam's Apple. It became obvious last year that this is GPN, as I started having stabbing pains in my throat, lower left jaw and left ear. It was quite bad last July and then disappeared. For the last week or so it has been near impossible to sleep because of the pain. Also difficult to eat, brush my teeth or (sometimes) talk or swallow. So I am now considering seeing a neurologist and getting medication. Unfortunately, I have lived in Thailand for 30 years and my basic health insurance doesn't cover expensive drugs. Also, there isn't much expertise here with neuralgias.
I want to see how long this episode of GPN lasts, if there will be any remission at all, and how long that lasts. Then it will be a matter of whether quality of life is better with pain or with drugs.
Ultimately, I may have to consider moving back to the UK and using the NHS if the pain gets worse and expensive drugs or an operation are needed. Hopefully, the TN will not get worse and complicate matters. I wonder how common it is to have two different neuralgias?
I'd like to try acupuncture before any drugs, so any information about that would be much appreciated. There are acupuncturists in Thailand but I don't know if they'd have any experience treating neuralgia.
Over the years I have read various accounts on the web of TN sufferers and they have made me feel "fortunate" to have reached my early 60s without unbearable pain. There is always someone worse off than ourselves. My heart goes out to all of you.