Trigeminal neuralgia sufferers - does this sound like TN or dental pain?

[Fuckinellitsme]

I was only diagnosed with TN a year or so ago so I'm still getting used to it.

For the past few weeks I've had a low level burning sensation on the roof of my mouth and twinges which range from sudden stabbing/shock type pains to a general ache on the side of my face affected by TN (mainly upper jaw but also occasionally lower). My cheek also feels numb, burny and tingly. The symptoms aren't constant and there's no swelling, discharge, heat or redness. It's not the debilitating pain I've had from 'proper' TN attacks but neither does it feel like the pain I've had when I've had a dental abscess. It comes and goes - it'll be there for a day or two, go for a few days, then return. And the severity fluctuates. All of which leads me to believe it's not an abscess - when I've had them the pain is constant and agonising. And it doesn't feel centred around one tooth either.

Do these sound like TN symptoms? My dentist is currently still closed so I can't get a routine appointment, but I'm not sure one is required anyway (I was last there in early March and all was well). Is TN always the same sudden shock type pains, or can it sometimes be like this too?

Oh and forgot to say - cocodamol doesn't help with the pain, but ibuprofen with codeine makes it ever so marginally better (I know from experience that painkillers don't help much with TN, unfortunately!).

Hopeful bump!

Who diagnosed you -GP or dentist?
What medication are you taking, apart from pain relief? Tegretol?

Sometimes a burning mouth /burning mouth syndrome can be symptomatic of iron deficiency or folate/B12 deficiency.

Sounds like TN. There's something called atypical TN which isn't the classic lightning strikes.

My TN is only 'classic' when completely uncontrolled by meds. And even then, I would have long attacks of pain that lasted minutes at a time. Even with the meds I still get a burning/numb/freezing feeling in and around the area of the nerve. Inc my tongue, under my tongue, in my jaw and teeth and on my cheek.

It's pants, isn't it?

Are you on any medications for it, @Fuckinellitsme?

Ah, thank you all!

Re meds - I was prescribed Tegretol by my GP when I was diagnosed (after a month of constant attacks, literally thousands a day). I was told to take it only while I was having attacks then to wean myself off it when I seemed to be in remission, which I did - I took it for about six months. Since then I've had a few nasty periods with it but they die down before I get back to my GP. Tbh the Tegretol had terrible side effects so I only wanted to take it again if I absolutely had to.

@DrMadelineMaxwell the burning/numb/freezing sensation you describe is exactly what I'm experiencing. And a sort of 'heavy' feeling on that side of my face. And yes, my tongue has been feeling strange too - no loss of/odd taste or anything, but sort of scalded, if that makes sense. And yes, it really is absolutely pants. I empathise and sympathise 100% - at so many points I've actually thought I was going to die from the pain and I'm not given to dramatics!

@RHRA I was diagnosed after a month or so of constant attacks - I'd been to my dentist and he could find nothing wrong, so in desperation went to my local dental hospital emergency clinic. They immediately said it didn't sound like dental pain and confirmed it with X rays etc. I was told to make an emergency GP appointment and he confirmed it. I've had an MRI and appointments with neurologists because they were concerned I had MS (I also have rheumatoid arthritis and other symptoms) but it came back clear thankfully.

Tegretol is evil stuff for some people. When I was on it, it took a while to get to a dose that had any impact on my pain, but when I raised the dose some hideous side effects kicked in.

I've read the 'may cause drowsiness' label on medication before but I've never been physically unable to keep my eyes open in a busy place in the middle of the day before.

My kids thought it funny that I had to walk them to school once looking as though I was drunk when the tegretol kicked in and I could not walk in a straight line.

And it gave me a huge twitch. I couldn't write or type without my wrists jerking violently, and when it first happened, I was driving and it made me let go of the wheel.

I went straight back to the gp and they put me on gabapentin instead and it's been a game changer for me.

I'm 6 years in with TN and find I can lower my dose on good days, but not drop it completely. I once asked the doctor how long I should take the tablets for if i thought I wasn't getting any symptoms. His answer was ...."Ages" as it's a relapsing and remitting pain issue and it takes a while for the drugs to get to a reasonable level in your system. So the advice you got to take it when you have pain and then stop is flawed, but a lot of GPs don't understand TN well.

My friend, however, had TN before me, but then has been in remission for 5 years! (Bitch! ).

I had the mri and the lumbar puncture in case it was MS and was clear, but they did find the compression in my brain that causes the TN for a lot of people.

I'd recommend going back to the gp, asking to try something else so that you can have and maintain a low dose if it gives you no side effects, then you'll be at a level that you can easily raise if and when you get symptoms.

I'm on 1 or 2 x 600mg a day, and I take the full 3 a day when I have flare ups. One big trigger for me is exercise and when the gym opens again I'll have to go back up to my 3 a day.

Good luck with it.

I'm 10 years in with TN and I guess it could be linked. Like you say, it's not like the usual TN "belt in the face" as I call it.

A simple moderate breeze or something touching my face sets me off, even the elastic from a face mask pressing on the side I have it, sets me off, I tried one the other day as I've got to go to the Doctors and they are required there, although they've now told me I don't have to.

I'm not on anything really for it now, nothing seemed to work. Carbamazepine and Oxcarbazepine did awful things to me. I was on a mixture of Tramadol and Amitriptyline, but god I was like a zombie!

Mind you, I take enough medication each day for my Rheumatoid Arthritis, I rattle!!!