u/Joyride0

Hi everyone, I’ll cut a long story short. In 2022, I self-studied Levels 2, 3 and 4 of AAT, gaining Distinction, Distinction and Merit.

At the time I suffered with a debilitating condition. I wanted to work for myself, as I wouldn’t have been able to sustain employment. I quickly realised you really need years in the job before that becomes even the remotest possibility. That wasn’t possible, so I left it there.

I’ve recently had surgery and it’s much, much better and it might last forever. 🤞 Can you see a pathway into the industry for me, what that might look like? I’m 41, male, living in Shropshire, was a teacher before my condition put paid to that. I really like the idea of being an auditor. I found that area of study most interesting and feel I could be good at it.

Had an MVD with nerve combing two months ago. The neurosurgeon was really happy with how it went and said that on a scale out of 100, the compression was 70-80.

I woke up pain free. The day after, I had electrical sensations when eating for the first time. Not zaps. Not panic level pain but it got my attention. It was a one-off. The neurosurgeon clarified they weren’t the same as before the op.

A week later, rubbing my face produced pain. Not particularly intense or sharp, but pain, like before the op. Just reduced. Like on a dimmer switch. That’s persisted on and off for six weeks now.

Over the last few days, my face is behaving how it used to. Lots of little zaps/twitches/twinges, triggered by movement. The difference is the intensity. They’re maybe a 2/10 compared with what used to be. They get more frequent when I’m tired and when I’m on edge, just like TN did.

Could this be a part of the healing process? Something like the nerve is restoring its shape and lightly pushing on the Teflon, and that it might settle? Or an effect of the combing? Perhaps some inflammation that might settle?

I don't want it to auto-renew but also don't want to lose access until that time.

There's an idea that the pain is caused by essentially exposed wiring on the trigeminal nerve, after the myelin sheath has become demyelinated. In classic TN with compression, the sheath is worn away. In MS, the sheath is worn away.

Doesn't it make some kind of sense that repairing the myelin sheath if possible might fix the issue?

I read about a supplement regimen of taurine, lion's mane, multivitamin, turmeric and ALA, which anecdotal evidence suggests could be really helpful.

In terms of why isn't this mainstream...these items don't cost much money. They aren't patented as far as I'm aware. The pharmaceutical industry is never going to push things they can't make money from.

What do you think?

Was written down as anxiety in 2012-14. Ended up on carbamazepine which took the worst away. Been on it ever since. Worse this year to the point where I need help. Going to see a neurosurgeon tomorrow if I'm well enough to travel (it's a few hours each way). Hoping for diagnosis and just more info about what might be possible. Feel really scared. Scared of making it worse in some way or if nothing can be done (that bit doesn't feel likely). Did you feel like this?

I had dental work before my symptoms began in 2012. I'm not sure how long before. But extensive amounts between 2008-2010/11/12. Not looking to sue anyone, just trying to get an idea of whether my TN might have come from there.

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The pain is sharp jolts and electrical pain. Sometimes spasms. It can be in the cheek, high and low, along and above the upper lip and below the bottom lip.

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I read that that means it likely does not stem from bad dental work, as bad dental work usually affects only a specific location.

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Please comment if you know anything about this.

I'm looking for experiences with Botox and they're quite scattered. I think it's worth bringing them together to give a proper overview. It's something I've got down as a treatment I might be able to try.

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What are your experiences with it? Please give us a little context. Maybe whether you're TN or aTN, approx cost, how often you have it done, what it feels like during and for the first week or two after appointments and what it feels like when it starts wearing off.

It seems a good solution. Costs on google vary wildly. Do you have a semi reliable ballpark figure?

As the title states really. When the pain isn't severe, I find myself touching my face in some way to provoke an attack very often. I'm always moving it slightly to check and make it come. I find the unpredictability one of the hardest parts to cope with & this helps with that, a bit.

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I'll often hold my face when I talk, and always when I eat and brush my teeth. It feels like it slightly reduces how shocking the jolts are when they arrive. Idk if that's just psychological in some way. It's more to cope than anything else.

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When it's full of tension and ready to spasm, I'll usually try to make it spasm, to release the tension, if only for a minute or two before it builds back and needs to go again. I'll sort of push my lips together hard to try to reduce the movement in the face and that seems to help most the time, especially if it's in the lower cheek or lip. This year it hasn't spasmed lots but it's been in the upper cheek and above the lip, which is much harder to manipulate to find any relief. Spasms have massively reduced over the years. It's mostly very little tension and just unpredictable jolts right now.

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I'll often sleep on the bad side too, idk if the gentle pressure stops it going wild when I move it maybe.

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What's your experience with this?

As the title states really. When the pain isn't severe, I find myself touching my face in some way to provoke an attack very often. I'm always moving it slightly to check and make it come. I find the unpredictability one of the hardest parts to cope with & this helps with that, a bit.

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I'll often hold my face when I talk, and always when I eat and brush my teeth. It feels like it slightly reduces how shocking the jolts are when they arrive. Idk if that's just psychological in some way. It's more to cope than anything else.

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When it's full of tension and ready to spasm, I'll usually try to make it spasm, to release the tension, if only for a minute or two before it builds back and needs to go again. I'll sort of push my lips together hard to try to reduce the movement in the face and that seems to help most the time, especially if it's in the lower cheek or lip. This year it hasn't spasmed lots but it's been in the upper cheek and above the lip, which is much harder to manipulate to find any relief. Spasms have massively reduced over the years. It's mostly very little tension and just unpredictable jolts right now.

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What's your experience with this?

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I'll tell you why I'm asking. I've suffered with this since 2012 and it was written down as atypical facial pain (no known cause), and I was put on carbamazepine after indescribable pain during spasms in 2014. I'm starting to go back through medical channels to get a proper diagnosis. I'm sure it's TN. Everything fits. But I'd have thought that with neuralgia you'd do almost anything not to touch your face. So I'm wondering how my experience fits with yours. 🙏🏻

Hi.

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In 2012, I began to get sharp electrical pain in my face. It would strike suddenly when speaking and eating and became really disruptive to daily life. In 2014, my face began to spasm and that relieved tension for a couple of minutes until the next one. I could feel my face moving in and out and I'm sure I could see it in the mirror if I looked closely. By July 2014, I believe my trigeminal nerve went into spasm. The pain was indescribable. I started taking carbamazepine right away & that particular pain has never returned.

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For years my face would bang/twitch and as tension built, it would spasm. This became normal life. I worked a bit, ate as I wanted (timing chewing around spasms) and could talk to people properly again (again, timing it and taking pauses).

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From 2023-2025, spasms were rare events. My face would bang for a while and then it would stop. Sometimes I'd rest a lot, lying down as often as I could, when the pain was severe.

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This year, it's been heavily banging for months. It keeps moving and changing every few days but the pain is strong. It doesn't seem to want to spasm. There's almost no tension. It is just quiet and then all of a sudden, bang, usually when I move my face a little bit. Usually I'd just ride this out but it's been months and it's not going, or reducing in intensity. I still take carbamazepine.

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I seem very affected by stress, pressure and anxiety. I can't cope with them these days & it's getting worse. I've tried hard to simplify my life. Identifying triggers & reducing my exposure to them. I'm surprised by the severity and duration of the current bout.

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I explored this medically in 2014 and had an MRI/MRA which showed as clear.

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Carbamazepine seems to only affect me when I'm in spasm and when the nerve is involved. My face has hundreds of bangs every day. I read that CBZ usually stops the pains, full stop. It balances activity and blocks the nerve sending repeated pain signals. This is super specialist and I'm hoping people here might have some insight for me.

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What do you make of this? Any and all thoughts welcome please.

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I've asked my doctor for an appointment today because I feel I need to get somewhere with this. I feel like I'm losing the battle this year and it scares me.

Edit: idk why but fruit sends my pain to panic level within a day or so of eating it. I wondered if it was psychological in some way but discovered I'd accidentally been eating raisins in a curry after a my pain got a lot worse, fast, so that couldn't have been psychological if that makes sense.

Any reason to keep them?