Trigeminal Neuralgia

[LilyAnn13]

Does anyone else have this? 🙁

Yes I do. I’ve lived with it for 30 years now.

I used to have this and it is the worst pain in the world. I believe people used to have the nerve cut and some have been known to commit suicide because of the pain. I no longer suffer from it but do get severe migraines. I hope it helps you to know that you are not alone.

I have had it for about 20 years but with long periods of remission thank goodness. It’s the worst. Someone told me it stopped for them when they went through the menopause so hoping that will be the case for me.

Yes, for 11 years now.

I had it for about 12 years. Mine stopped after I had 2 double teeth and roots removed (though the experts said it was a coincidence).

Yes. Currently in the start of a flair up

Yes, I’ve had TN for more than 25 years.

Nearly 20 years here... under control but get flare ups. Dental work is an awful trigger (on the affected side) and cold winds. It's hideous.

Hi everyone. Thanks so much for responding ❤
Did you find a reason for your TN?
Mine is due to a benign tumour :(

No.

My nerve seems just irritable. Like a PP cold winds are a major trigger for me. If it’s windy and I have to go out, then I’m so wrapped up only my eyes show!

Are they managing the pain for you and is surgery planned?

Hey Elphame 👋
I'm on 3 different meds 3 times a day (tegretol, gabapentin and lioresal) and I've had radiotherapy to stabilise the tumour.
Next year I'm having a procedure called balloon compression to try to help with the TN pain.
And you?

Welcome to Hell.

Hopefully your procedure will work. Are the meds doing anything for you? They did nothing for me. But then I'm a weird one.

I have what they call bilateral atypical trigeminal neuralgia. Totally neurological. No mass, no vascular loop, no nerve compression. Nothing to treat surgically, unresponsive to medication.

Literally nothing they can do.

Carbamazepine is the drug of choice for me but I choose not to take it.

I have TN mildly by some peoples standards in that if triggered, the attack settles down within a couple of hours. I do live in fear that each time, this will be the attack that doesn’t. It is taking longer to resolve than it used to. I am pretty meticulous about avoiding my triggers but the weather in North Wales makes it inevitable that I’m occasionally caught out.

Have you joined the UK TN support group on Facebook? There is plenty of advice and support on there as well as medication options. Sadly many GPs and A&E depts are not very well up in TN and there are drugs available to them which can help if things become unbearable. You need to know what to ask for if necessary

That is a tough diagnosis to live with. Do you get any respite?

I am ok between flares thankfully. I have it bilaterally in that either side can kick off and very occasionally it’s both. Nothing has shown up as a cause for mine either.

I'm also from North Wales!
And yes I am on a couple of support groups on FB.

Between flares it's mercifully quiet. I can go a few months, even a year once, without a peep. Then I'll have an episode where its just constant pain. It's not even the zaps, they're bad enough but I get it where its waves of constant pain like someone's pressing an accelerator. Feels like chewing a cattle prod. I think my record is 15 days of nonstop. Then it's just gone like a switch being flipped.

Is yours the same presentation? Never met anyone else who gets it both sides before. I'd be interested to know what you use to control the pain during flares as I've had so many doctors telling me what will and won't work for it and never been right.

My DH has it. Controlled with oxcarbmazapine, baclofen and lamotragine.

@Balloonhearts

It used to be just on the one side but about 10 years ago I started getting the shocks on the other side occasionally. Now it is about equal. I can also go months between flares if I'm careful. I get a baseline throbbing pain and zaps over the top which sounds similar to you. I was told just TN but I've had it so long I don't think my current GP has even noticed it way back in my medical notes!

Mine hits across the roof of my mouth and the lower jaw so the bottom two branches of the nerve.

I find hot drinks and heat pads give me the most relief but my attacks only last up to 6-8 hours. I have a constant unpleasant residual sensation for the next day or two which is really hard to describe but almost like a shock is waiting to happen but doesn't quite? I cannot begin to imagine how I'd cope with 15 days of it. My heart goes out to you.

This is not a condition I would wish on anyone.

I've never had both sides together before. Hope not to, that sounds awful! Mine goes through my nose and eye socket too but mostly through my teeth. I've had so much dental work thinking it was an infection or something.

Really similar with the throbbing pain plus zaps. Mine took years to diagnose. Told me it was everything from being fat (yes really, the head is the heaviest part of the body apparently) to TMJD to migraines. Neurologist diagnosed it in the end.

I get limited relief from heat pads too. Best pain relief so far for me is Diclofenac in suppository form.(my stomach is less tolerant of large doses of painkillers than it used to be) I take those and then I take paracetamol and codeine at the same time which gets it under control and repeat the paracetamol and codeine every 6 hours. Diclofenac can be repeated every 24h at 100mg.

Most doctors are a bit hesitant to keep prescribing it as I'm pretty sure its on its way to becoming a controlled drug but thankfully my usual GP just does it if I leave him a message.

Heat is always my friend when I'm in pain. Doesn't particularly help but it's psychologically soothing I suppose.

I've had my 10 yo MRI repeated this year after having a bit of a painful flare up - I'm normally pretty well controlled with medication.

The report said that there's a nerve compromised on both sides, although I currently am only symptomatic on my left hand side. That could mean it starts on the other side at some point, but I'm hoping not.

My pain is mostly on my lower jaw and into under my tongue. Although it can track up my face, and if I exercise I get a dead-cold feeling in my cheekbone and into my ear.

They have discussed the nerve compression treatment, but cautioned that it came with a risk of the dead-cold feeling as a side effect of the treatment. So I've said no to that straight away as I already have that on and off and find it v unpleasant.

So otherwise it's the MVD for me if I still fail to get prolonged pain relief from my gabapentin. I think they also were going to write to my gp to offer an additional medication when I was having the breakthrough pain, but it's settled down again so I've not asked them about that.