The Painful Tooth: My Weekend of Agony
I’ve written about trigeminal neuralgia (TN), which entails severe facial pain, many times. Let me count the ways. Please excuse me while I go off and search through my columns. I’ll be a while.
Well, it turns out I’ve written specifically about it only three times, although I’ve mentioned it in 15 other columns. Searching for all of it only took me an hour.
If I didn’t spend my life sitting down, that’s exactly what I’d need to do right now. So, rather than writing more, a game of solitaire is in order. Back in a while, methinks!
Oops, now it’s time for dinner, bathroom, and bed, so no solitaire for me. I haven’t even checked email today. Gulp!
***
It’s now the next day, and I’m back. Today is Wednesday, and I’ve had peace for the last two days. But this is the first day I haven’t been stoned! Let me elaborate.
On Sunday night, I had the worst TN attack I’ve ever had, even with a load of oxcarbazepine, an epilepsy drug that somehow helps TN. Doctors have told me that TN follows a unique pain path, so the relief strategy is different. For instance, opioids aren’t usually effective.
Baclofen, originally prescribed as a muscle relaxant to help spasms in my right arm, is a second-line defense against TN, but this time, it made no difference. A lidocaine patch over my jaw finally helped, but even that took an hour to work.
My TN is very specific. It attacks one of the molars on my lower left jaw. When it first began happening, it was like an electric fire in my tongue. Eventually, it settled into one tooth. I sometimes get a warning of an impending attack if I feel slight pain when my tongue happens to rove in that direction. This time, I was composing a voice message on my phone when it hit full-bore.
Think of the worst drilling pain you’ve ever experienced at the dentist’s office and multiply it by 10. I was screaming for three hours. My wife, Jane, filmed some of it, but with my low level of technical ability, I have no idea how to upload it to YouTube — I’m 63, you know. And I’m not sure I want my first post to be about me screaming.
I could go on, but I’m bored with all of these technicalities, especially after finding all of the source material. You may have skipped what I wrote above, or just moved on. I guess I’m writing for my hardcore audience.
So, what caused this? I was told to cut down on the drug gabapentin, and it sucks. Again, gabapentin is an anti-epileptic drug. Blah, blah, blah.
Anyway, I cut down on it on Monday of the previous week, and my first TN attack in months happened the following Friday. All you need to know is that gabapentin has a lag time.
On my own recognizance, I immediately returned to the original dose. But there’s that time lag. By last Monday, Jane had swiftly decided I should officially go back to my original dose.
After a horrible Saturday, I thought the worst was over. By 6 p.m. on Sunday, I hadn’t had any attacks, so I was thinking about having a beer and watching a bit of telly.
Forget that. No warning at all.
I was composing that phone message when all hell let loose. The three hours of screaming started.
On Monday, it was baby food and all day in bed for me. Bananas and vegan custard were on the menu. At least I’d recovered enough not to have the “nanas” mashed!
The big baby moniker is fair enough. Officially, I wear pads, but they are big-boy nappies.
No wonder I cry a lot!
***
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Comments
Penny-Marie Wright
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.
Jenny Orlov
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. ?
John Connor
Hi Jenny,
Yes I do.
There's also an 'adult baby' kink scene.....
Oops.
Leanne Broughton
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 Connor
Hi Leanne,
U could try oxcarbazepine perhaps. Carbazepine weakened me terribly - in those days I could walk. The pain specialist I saw claimed 'It has a better molecule'. I also use a anti-depressant Fluoxetine - which in the old days is better known as Prozac. Not for its anti-depressant properties but because it can help with pain - though no one knows why. A lot of of this I researched myself! http://multiplesclerosisnewstoday.com/columns/2021/01/06/sorry-this-is-not-a-new-year-resolutions-column-get-over-it/
Have an MRI before any op looking at the TG nerve - turns out mine is fine. It's the neurons in my brain under attack - though no one, you guessed it, is even sure of that.....
Cheers John
John Connor
TN Nerve - DUH!
Maggie O'Brien
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
John Connor
Ta Maggie,
But I'm v. reluctant to any kind of surgery. It doesn't always work! Also just had an MRI of my TG nerve & my Neurologist doesn't think an op would help.
Cheers John
John Connor
TN Nerve - DUH!
Karen Goodridge
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.
John Connor
None of that I was told to drop the dose by one of my medical professionals. Now the dose has been restored the TN finally seems to have become becalmed. After 1 or 2 near gales.
Linda Brunner
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.
John Connor
Hi Linda,
TN is most def not rare in MS patients - whoever told u that is an ignoramus! Or your source is written by one!!!!
'Recent research suggests that between four and six in every 100 people with MS experience trigeminal neuralgia which is about 400 times more often than the general population. Trigeminal neuralgia is sometimes an early symptom in MS, but it also becomes more likely the longer you have had MS.
It is rare for people under 40 who do not have MS to experience trigeminal neuralgia so, for those in this age range, it is particularly important to consider if the symptom is part of their MS.' Source MS Trust UK [https://mstrust.org.uk/a-z/trigeminal-neuralgia]
Have an MRI concentrating on the TN nerve before considering surgery!
Cheers John
Jacqueline Krarup
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 .....