From TN to GPN

Here's my story:

I was diagnosed with TN about 17 years ago. Apart from the first episode, it hasn't been very painful. Typically, I have pain for a few months and them remission for a couple of years.

The TN was diagnosed 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'd like 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.

Hi Nomad,

A number of folk have both neuralgias, similar to yourself. Your warning about the toxicity of Vitamin B6 is very timely. Its always really important to consult either a pharmacist or your GP if you're thinking of taking any supplements with medication or if you've found recommendations to use alternative therapies and wish to try them. Always better to ask and be safe. As you'll see, there are similarities between the facial neuralgias and the medications and some surgical options available.

All the best,