The Painful Tooth: My Weekend of Agony

I hate people saying they're wearing diapers(or as you said nappies). We are adults & even the packages they come in say they're "underwear". Yes, we have to have protection because of our illness but we don't need to make it sound like we're babies. I've talked to a lady who said Botox helps her a lot but I checked it out & it said that it could make more problems later on. So I will continue wearing protective underwear.

Hi John - Very sorry to hear about the TN attack. I hope you eventually found relief.
Did you know that a number of healthy adults wear adult nappies? I know a businesswoman who spends many hours on the road and she wears them in case of traffic jams. She knows others who do the same. ?

As you, I have typed many comments about my TN. I have suffered many flares over the last 12 years. I am in a flare at present, lasting over a month. I am concerned about developing a tolerance and/or dependance on gabapentin. I am allergic to carbamazepine (drug of medical choice). 11 years ago I became tolerant to Lyrica. All of a sudden it no longer worked but I still had to go through a withdrawal. On my last neuro visit he asked if I was depressed (thats all I need-more drugs to stone me). I said I have been crying a lot. My husband said "from pain" - true. Again this is the worst pain imagineable. My meme "this too shall pass". But it will be back unexpectantly, so I am always on edge and cautious. Not that it helps.

John - I immediately zoomed in to read your article when I saw the words trigeminal neuralgia. I have suffered with it since 1999. Tegretol (carbamazepine) is the only med that ever worked. I've had 3 unsuccessful brain surgeries but upper cervical chiropractic has helped me. UCC chiros are rare and hard to find. I'd be happy to help if you are interested.

Maggie O'Brien

Sorry to hear about your TN! I can’t imagine how painful that must have been. You mentioned that you were told to cut back on Gabapentin and that had me wondering why? I take it and I’m sure many of your readers take it too. Did it stop working for you or did it give you unwanted side effects? Thanks for your column.

Hi John.
I’ve had trigeminal neuralgia for 13 years now. My first attack brought me to my knees, not knowing what was going on. My husband and I went to the dentist to see if it was a tooth issue. It was not. He told me to go to my doctor. My primary sent me to a neurologist. After an MRI, a spinal tap, and symptoms, I was put on carbamazepine. Over a couple of months, I was starting to get some facial relief. I was also diagnosed with MS even though I did not have symptoms. Eventually I needed to also go on gabapentin along with the carbamazepine. That helped for years. This past summer I was having weakness on my left side went back to the neurologist to go over this went for three different M are eyes and my neurologist concluded that The MS was active. My TN Is starting to act up, and I’m going back to the Neurosurgeon that I saw 12 years ago. All the symptoms of the TN I’ve settled again in my mouth and I’m having problems chewing, brushing teeth talking eating touching my face moving my tongue, most of the issue is on the one side of my tongue and the rest of that side of my face. I am going back to the neurosurgeon to discuss the surgeries and I am very scared. My husband thinks we should discuss things with him again. The new neurologist that I have been seeing since last summer thinks that the gabapentin dosage I am taking is very high and wants me to start reducing that. But guess what, I know a little better and I am not going to be in pain. That is why I am now considering one of the surgeries. I have done lots of research on MS and TN, and it has been suggested that a very rare symptom of MS is Tn. I believe that is true.

I so relate to this :( :(. TriGemN - a pain like no other. The feeling of total, indescribable pain and utter despair when it hits, out of the blue but on repeat for up to 5-6 days and reverberates from the upper left side of mouth. Like mosquitoes being zapped on an electric bar. All I can do is howl, motionless, clasping my face looking like like Edvard Munch's The Scream :O. Thankfully no episodes for months now, I've been taking carpamazepine amongst a cocktail of other treatments to help symptom management. Let's hope I'm not being lulled into a false sense of security. As my MS continues to gnaw (I wear 'protective underwear' whenever I venture from the house btw) who knows what next? Thanks for your candid writings .....