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Trigeminal neuralgia- sorry, a bit long!

(98 Posts)
Draylon Mon 02-Nov-15 22:21:13

Am I right in thinking that if 2 x ibuprofen stop the pain, it isn't TN?

Brief, boring background: About 4 months ago I developed a cold sensitivity in my lower 6th tooth; and, seemingly unrelated, grinding toothache in that area. The latter came and went with no apparent pattern and neither pain triggered the other.

Dentist struggled to localise the pain, and sort of guessed it was that 6th tooth. 6,7 and 8 are filled. The xray revealed nothing; but I know they don't always, so she took out and refilled the filling in 6.

But both pains continued in the same pattern. So she referred to to max fax who were similarly vague, and thought '8'. By this time, interesting, the cold sensitivity went away entirely.

Back to the dentist who took out and refilled 8 (4 days ago) but I'm still getting this grinding deep 'toothache', 3-4 times a day sad. Incidentally, the dentist found nothing untoward in my cavities, saying the root of 8 appears to be alive, too. The next plan is to remove and refill 7's filling. Followed by extraction of 8!!

I have been reading a bit about TN.

I read that people can have up to 6 teeth removed before TN is diagnosed, that the GP should be my next port of call; that TN pain is like a shock, which mine absolutely isn't! Mine is a deep, grinding, Ooooooooow! pain. Nothing 'triggers' it (cold wind, eating etc); I can touch my face happily, there's no 'point' of extreme pain when I'm having an attack, and, 2 Ibuprofen or paracetamol 'cure' the pain. Only now and then do I have to re-dose as one dose wears off. Normally the pain goes and that's that- til maybe 6,7,9 hours later when back it comes.

So, what do you think? Could it be TN with those symptoms, or is it more likely to be a tooth?

But, come what may, I cannot be taking 6 ibuprofen every day, week in, week out, can I?!


Fizrim Mon 02-Nov-15 22:28:44

I have suffered with TN, and there is no way ibuprofen (or paracetamol) helps with the pain unfortunately. I hope you don't have TN! You can get the shocks or a more constant, burning type of pain. Does it always go when you take the meds? I used to get attacks that lasted about 40 mins, does the pain have a particular pattern when it goes away?

I would go to your GP and see what they say. Also, if you get a referral to a consultant generally you'll get a better result from a neurologist or neurosurgeon than a max-fax.

Draylon Mon 02-Nov-15 22:33:59

Thanks. I did get the impression that if over-the-counter med 'fix' it, albeit temporarily, it probably isn't TN. The meds do sort it, every time, for that attack, at least! The pain isn't burning, or shock-y, just sort of deep seated, draggy and rather all-consuming at its worst.

TBH I couldn't tell you how the pain goes as I no longer let it 'go' naturally as the idea of potentially several hours of agony means I head for the ibuprofen as soon as it starts, which it does often quite quickly, for no apparent reason.

I am thinking I must see my GP as much as anything before I start getting teeth pulled unnecessarily!

Hexenbeast Mon 02-Nov-15 23:36:03

Hi Draylon.

I recommend seeing a GP before returning to the dentist. I had a tooth pulled before my TN was diagnosed. It wasn't 'typical' TN, but has responded well to the TN medication. My dentist pulled the tooth, then seemed really confused when I went back with the same pain. She removed and replaced a filling in the next tooth, but I walked out of the surgery completely numb from the anaesthetic, yet in agony all down my jaw.

To answer a few of your points...

No, no painkillers did anything for my pain. Not even that injection at the dentists. I was desperate for something to help with the pain, which would wake me up at night at first before I started getting pains in the day. (Lying with my face on the pillow seemed to be the trigger).

I did have some clear triggers of horrible, shocking pain. Water on my teeth when brushing my teeth would have me on the floor in pain. Most of my pains were more like labour pains though. THey'd build and build and then go after a few minutes. That's not classic TN pain, but it is what I got. If my face gets cold then I got an attack of pain.

They can try you with a TN medicaion as part of diagnosis. If your pain does respond to carbamazepine then it can help them agree that it's TN. It's not a great drug to take though, you need blood tests and personally I couldn't take it at all as it made me dizzy, sick and sleepy. I'm not on gabapentin instead and after building up my dose I have good pain relief.

I still get grinding dull pains, like toothache or earache, daily. I have side effects from the meds which drive me crazy, but I'll put up with them to avoid the amount of pain I was in. Mid-attack, I couldn't concentrate on anything, couldn't move my mouth to talk to anyone and would hold my breath as the movement of air across my lip and teeth was agony.

Facial pain is complex. I hope you haven't got TN because it's not something I'd wish on anyone, but I'd def be chasing a second opinion before going back to the dentist.

Draylon Tue 03-Nov-15 07:44:04

Thanks hexenbeast.

Ironically, having just started posting on here about this pain, at 5am this morning I got the worst attack ever. It came on pretty quickly, but I wondered whether to put up with it and see if it subsided by itself. It didn't. The half hour between taking ibuprofen and it working was the worst I'd had since a post-LP headache I suffered 25 years ago. Like you say, it's all consuming. Nothing apparently set it off, I could touch any part of my face; you know (obvs!) what a sensitive tooth pain feels like: a crescendo of pain that jags for a few seconds with hot or cold stimulus- well, this pain was that jag, continuously for 30 odd minutes.

I have come to the conclusion that I need to see a GP today as frankly, I'm not lying if I were to say I can see why someone might get suicidal either suffering the pain or waiting for the next attack.

Right now I have a dull ache like you do a few hours after a dental anaesthetic has worn off, a sort of 'bruised' pain, but I'm 2.5 hours post Ibuprofen so sometime in the next hour or two... I sort of know that the pain is raging right now, iykwim, it's just the Ibuprofen is disabling the receptors, for now!

Draylon Tue 03-Nov-15 08:22:06

Earliest GP appt in next Tuesday shock

Hexenbeast Tue 03-Nov-15 11:22:02

Good luck with your gp . I came straight put with what I thought with mine and he agreed it was TN.

If the ibuprofen isn't working quickly then it could just be that the attack is subsiding anyway at that time instead of it being the meds.

I ended up phoning for an emergency appointment as I couldn't wait too long. Every day (night) was getting worse and worse. I had grumbling aches that then would become attacks if I tried to eat or drink or if I got a cold face.

It could still be something else and I would see the fact that you think the ibuprofen is working is a good sign that it is something more treatable.

I hope your appointment brings you some answers.

TweedAddict Tue 03-Nov-15 11:44:12

Doesn't sound like TN to me either. The pain is so unbelievable that before mine was diagnosed I went to the doctors 4 times in one day, then the out of hours, I ended up overdosing on purpose to get seen in the hospital. Then I was in for 2 weeks as they couldn't control the pain. It's the worst thing ever, and even now the odd one is so painful, lucky is has mostly gone. It's just fires off for a few seconds every now and then but that's enough to floor me.

TweedAddict Tue 03-Nov-15 11:46:52

Sorry just saw your last post, looks like it maybe increasing and sounds like your getting more TN symptoms. I feel for you, good luck, and make sure the GP listens

Draylon Tue 03-Nov-15 12:00:10

Thanks both. And genuine sympathy. I am thinking it probably isn't typical TN although the distribution is right. Re Ibuprofen, I guess I'd expect it to take 25-30 mins to work, anyway? But I am also hoping that the fact it does sort the pain out as being a good sign!

It would be fair to say, though, that the pain has become genuinely excruciating; rocking gently, face buried in a pillow, sobbing style pain, on and on. Last night's was definitely a turn for the worse which has made me very nervous, as you can imagine. BUT I haven't had another attack since 5am; that's almost 7 hours, although I am mindful of gradually increasing, mild, low grade grumbling in the area concerned. I have Ibuprofen beside me right now, ready to pop! I am not generally one to reach for the pills as a first resort as I get a fair bit of 'normal' pain, as in chronic back-pain, (HCP!) currently just out of a 3 weeker; sinusitis 3 times a year, that sort of thing; but I have more or less been constantly on the ibuprofen for 3 odd months now! I mean by that, at least one dose a day; often 3.

Re a diagnosis, still obviously in the dark, but as stated before:

There are no triggers (eating, touching, breeze etc)
Attacks are random, any time day or night
Always and only affecting the left side
I can touch any part of my face during an attack, none of it painful in itself
The pain grows in intensity and stays like it for at least half an hour (til the drugs kick in!)
It feels for all the world like bad toothache in the angle of my jaw, at worse covering from the tragus of my ear to about my 4th tooth; I couldn't localise it with one finger
It's a deep, grinding, constant dull ache, not electric shock-y or 'burning'.

Draylon Tue 03-Nov-15 14:04:34

9 hours now! Still a bit 'threatening' but not happening yet. Thank god.

Hexenbeast Tue 03-Nov-15 18:46:36

Not localised to one tooth, but following the line of the jaw could be TN.
Random attacks, same.
Only limited to one side, yes.

Touching my face - rarely a trigger.

Half an hour sounds like a long attack. Mine lasted max 5 mins.

There is 'atypical TN' which is more aching and burning feelings.

Can you move your jaw normally? Do you clench or grind your teeth? TMJ (tempromandibular joint disorder or something) is also a major reason for facial pain.

There are lots of reasons and kinds of facial pain. Lots are treated in a similar way, so if they are happy it's not dental in nature, they may prescribe something that helps.

TweedAddict Tue 03-Nov-15 21:42:28

I did have a thought, my best friend is a dental nurse, sadly she started after my TN started. But she has told me that dentist can do referrals to max fax clinics, plus they can mark them as urgent. Our local one is currently only a few days wait for TN. Maybe worth a try, I've always gone though GP but it's another door to knock so too speak.

Hexenbeast Tue 03-Nov-15 23:47:38

That's a good point, Tweed. Max facial specialists are far more knowledgeable about facial pain than your standard GP.

I hit lucky with the gp I went to because he had actually diagnosed a friend of mine (massive coincidence) with TN just months before.

Then I saw another one at the same practice who assured me that I wouldn't have the pain for long. Well, 18 months later I am heavily medicated, putting up with annoying side effects but still having low-grade pain every day.

I got a referral to a neurologist which, if they think it might be TN, is worth pushing for. He gave a good second opinion on my medication and titration levels. I also had an MRI to look for the cause of the pain. And following that, a lumbar puncture (bloody OUCH) and a meeting with a neurosurgeon about what could or couldn't be done. I had to go private to see him faster than 6 months, but it was well worth the eye-watering cost to do so.

If the pain is becoming worse then it's not worth sitting and waiting for appointments to roll around if you can get a quicker one. I remember telling the chocolate teapots on the NHS helpline that I would rate my pain at 11 out of 10 'And I've given birth to 2 children!!' They told me I could have a blocked saliva gland and to call my gp in the morning. smile

Draylon Wed 04-Nov-15 07:13:33

Thanks all- well, I went 11 hours before the pain kicked in (around 4pm yesterday afternoon;) then again just now this morning- I woke with it.

I've already been to max fax- my dentist sent me. I wasn't that impressed, sadly. Lots of fannying around with badly maintained tech; a can of the cold stuff they use to detect if a tooth was alive was more or less empty and the nice but ESL doc didn't explain what I was supposed to feel so it was a bit of fiasco with her finally deciding it was 'probably the 8', hence last week's filling removal and replacement.

I am 99% certain it's not my TMJ, though. The pain is more at the angle of my jaw. And I am wondering whether I may need to pay to see a neurologist sooner rather than later!

Hexenbeast Wed 04-Nov-15 10:55:46

I had that cold spray stuff. It didn't set anything off, but when I went to do school pick up later in the day I was in agony when my face got cold.

It was PS250 to see my neuro. I was lucky because I knew who I would be referred to on the NHS and then looked to see if he did private which he did. I had a good chat with him and then he transferred me straight into his NHS list bypassing the 6 month wait. And he fast tracked my mri.

iamaboveandBeyond Wed 04-Nov-15 13:35:53

I have TN and EDS (causing tmj) and maybe have an idea? I was speaking to someone in america who has th same as me and she said her (many) doctors had finally figured out her tmj was causing her atypical tn. My tn is also right in the joint and a few doctors have said its the wrong place to be caused by the tmj. Anyway...

She said that at some point in the past, her jaw had dislocated and settled back in the wrong place. This then led to her jaw leaning on the trigeminal nerve where it wouldnt normally. This sounded likely to me as my jaw is out of line and has been as long as i remember

Meds wise, morphine doesnt touch mine but max dose of gabapentin has helped. If i try to drop my daily gabapentin down though, it flares right back up.

iamaboveandBeyond Wed 04-Nov-15 13:40:47

(I already take anti inflammatories daily for something else. One othr thing though, if you are taking them daily yu need a proton pump inhibitor alongside)

(Oh another thing. Seen you get sinusitis often. Its possible this could also be neuro pain, i get it as far as my nose and also as far back as my ears)

Draylon Fri 06-Nov-15 13:44:47

Sadly, as of today, really, ibuprofen no longer cutting it at all. First dose 1 am; second 8am, third 1 hr ago but more or less constant pain sad. GP on Tuesday- it's gonna be a long weekend!

Hexenbeast Fri 06-Nov-15 18:15:35

I'd suggest out of hours if there's one that you can get to. My pain when I was first diagnosed did develop over a few days, getting worse each time and having more pain.

Fizrim Fri 06-Nov-15 20:35:40

Gabapentin was one of the things I took for TN, so they may be able to raise the dose a bit if you go and see the OOH (or A&E, if it's really bad). I also took amitriptyline and carbamazepine (all at the same time!).

Hexenbeast Fri 06-Nov-15 22:39:41

I love my gabapentin. Without it I'd be in daily agony.

Hexenbeast Fri 06-Nov-15 22:42:55

Even though it makes me forget stuff

And twitch

And sound like an idiot when it makes me say the wrong word

And has ruined my spelling (my brain knows how to spell the word but the wrong message gets through to my hand)

Not great side effects for a teacher!

But I don't care!

RoseDore Fri 06-Nov-15 23:22:40

I've just been diagnosed with TN, caused by inflammatory arthritis in my tmj. My GP didn't suggest any treatment for it as I am already on various things. My dentist put me on three courses of antibiotics and wanted to redo a root canal and possibly remove a tooth as he thought there was an infection. He didn't seem to think the pain (which is my forehead and chin, as well my TMJ and teeth.) was caused by my arthritis, in spite of real soreness in the joint. I made an appointment but wouldn't let him do it. I've no idea if this is helpful to you, Draylon, but it sounds similar to your experience. Have you seen your GP?

Draylon Sat 07-Nov-15 13:44:06

NO, GP is in Tuesday,*Rosedare*. This morning's 9am ibuprofen took 30 mins to work and wore off after an hour.

I read somewhere that you can end up getting up to 6 teeth unnecessarily filled and /or removed before a TN is diagnosis is made sad which is a bit depressing. This has been going on since late April; my first dental appt was in early May; I saw max fax end of August (who were a bit non plussed but certainly didn't suggest TN).

I think I will ask my GP for a neurologist referral, but in the mean time I am stumbling through with this horrible pain!

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