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Trigeminal neuralgia- anyone know it have it?

(30 Posts)
TheMightyMing Tue 15-Mar-16 20:50:28

I started at weekend with horrific facial pain which I put down to a dodgy tooth. The dentist treated it yesterday but said on x ray and exam that it looked fine, and even removed the filling and checked underneath. I'm on anti biotics and double dose painkillers, but the pain has returned worse than ever. It comes in waves and it's in my face jaw and head, even my arms a bit numb. It's absolutely unbearable.

Having googled my symptoms, it sounds exactly like the above. The description also references a link to ms, which worries me as I had a severe visual disturbance last Tuesday and was diagnosed with a bout of optic neuritis , albeit 26 years ago now with no reoccurance since.

I'm not being dramatic when I say the pain is worth than child birth. If anyone knows anything about it , I'd be very interested and grateful.

Artistic Tue 15-Mar-16 21:21:03

Can't say about your specific problem but my mum suffered acute nerve pain after shingles. She was on specific nerve pain relief drugs for over a year before she felt any respite. Ice packs helped a lot. Sorry, no quick solutions here. thanks

StillMedusa Wed 16-Mar-16 18:39:09

Get to a docs asap. It's the worst pain ever. I developed it 5 years ago...and had two teeth unnecessarily removed before I had the correct diagnosis. Carbamazapine is the first line of treatment. That made me sick so I was put on Gabapentin which at very very high doses (3600mg initially!) stopped it . I'm still on a much much lower dose which keeps it at bay.. I occasionally get the odd shock but nothing like it was.

I was also investigated for MS, but my lesions were deemed 'age' related. However with a history of Optic neuritis you defo need a fresh MRI scan just to be on the safe side.

It is the only time in my life I have ever come anything close to feeling suicidal..the pain is like nothing else...but it IS treatable, once the meds are right,

TheMightyMing Wed 16-Mar-16 19:21:06

Thanks. I went as an emergency this morning and saw a nurse. I was actually in tears as I was having an attack as I was sat there. I mentioned Tn and she confirmed she thought that's what it was. I've been given high dosage co codamol and ibuprofen and been told to return if it doesn't help. Bit confused as what I have read indicates that pain killers don't have much effect. To be honest, it's made it much less painful but it's not gone completely. My eyesight a bit blurred on the right side too. I feel spaced out but that's probably the codeine as they are strong ones. I'm a bit resistant to the idea of taking anti epileptic meds, they scare me, but if it comes to it, I'd take crack cocaine to avoid the pain I have been in over the past few days, that how bad it was ! No ones mentioning MS and I feel dramatic enough with the tears in the surgery today, so I won't go down that route for now. The optic neuritis was when I was 19 and I am 45 now , so I'm hoping that it's a coincidence.

Medusa it's very kind of you to post and share your experience, I very much appreciate it and I'm glad you have it under control now.

TheMightyMing Wed 16-Mar-16 19:21:52

Thanks to Artistic too, hope your mum is ok now x

Mondy Wed 16-Mar-16 19:37:27

My girlfriend has trigeminal neuralgia. When she first got it (a couple of months ago, completely out of the blue) it was horrid for her - and she's very good at dealing with the pain, which shows how bad it was. I took her to the doctors (reluctantly, as she hates going to the doctors) and they prescribed a variety of tablets including some anti-epilepsy ones.

It took a bit of adjustment to tablet doses to get the right dose (she rang them and had a telephone consultation about changing doses), but she got onto a combination of tablets / doses that worked for her and, touch wood, she's been fine since apart from one short flare up one day, when she was particularly stressed, so there is light at the end of the tunnel. She was likewise scared of taking the anti-epilepsy ones, but they seemed to be the ones that sorted it out.

If you don't feel any better though, or still have some pain, don't hesitate to go back to the doctors or request a telephone conversation so they can adjust your medication.

Hope that you're feeling better with it soon.

TheMightyMing Wed 16-Mar-16 19:50:03

Mondy that's very good of you to post and I'm glad your girlfriend is managing this condition well. All i can think is that I need to get back to the gym , I usually go every day and I've not been all week! I'll certainly be back at the doctors if I need to.

PotOfYoghurt Wed 16-Mar-16 20:06:27

Dx nearly three years ago. Started on Carbamazepine but side effects at higher dosage was too difficult to manage daily tasks, then tried a combination of amitriptyline, naproxen, pregabalin and finally oxcarbazepine which I've stuck with.

I was referred to a neurologist and had MRI, MRA and CT. No obvious compression of the nerve.

In the time that I've been diagnosed I've suffered with nerve problems in my hands and feet/legs and down the left side of my body. I've had nerve conduction tests and have carpal tunnel in both wrists now as well.

I've also suffered with non-specific facial and head pain which neuro thinks is a combo of TN, ON, and migraines. I've also had post-coital migraines so have endometacin for those.

Neuro doesn't have any idea what caused it, they were originally concerned about MS due to me being young but that's been ruled out. So it's a case of wait and medicate and see how things progress over the coming years. At the moment I seem to be in a very welcome remission, fingers crossed it lasts a while!

So- go to GP, start some anti convulsants and get a referral to a neuro to have an MRI and rule out anything that could be causing it.

Good luck.

PotOfYoghurt Wed 16-Mar-16 20:07:07

Oh and work it your triggers- wind/touch/cold air/eating can all do it depending on which branch of the nerve is affected

TheMightyMing Wed 16-Mar-16 20:33:33

Goodness me Pot you have suffered ! I've had a Dx of carpal tunnel linked to thyroid but it's not too problematic so I didn't bother with treatment.

The nurse didn't offer anti convulsants as I mentioned. The painkillers seems to have dampened down the attacks and most of today it's mostly been a dull ache.

Do you think I definitely need a neuro referral as it wasn't mentioned , just to return if it didn't settle.

Thanks so much for sharing your experience and I hope your remission continues x

PotOfYoghurt Wed 16-Mar-16 22:11:04

If it doesn't get any worse it probably isn't TN, in any case you would do well with a trip to the GP to find out what it is- jaw/sinuses/ears/migraines etc can all present with similar symptoms.

If it does get worse, see a doctor and try carbamazepine. My GP started me on it straight away with the idea that if it helped it was most likely TN and if it didn't it would be something else!

If it is TN it can be caused my a compression on your nerve, or another disease like MS, or a tumour or in a lot of cases like mine there's no known cause. But it would be good to rule out anything more sinister, just in case.

TheMightyMing Wed 16-Mar-16 22:23:33

Thanks - I'm currently taking major painkillers but just having a brew and getting some pretty nasty break through pain in my mouth. Did you have any visual disturbance at all? They've pretty much ruled out sinus and ear today.

PotOfYoghurt Wed 16-Mar-16 23:03:08

No visual disturbance, but that is common with both migraines and MS. Because of your history and the vision problem I would be strongly pushing for an MRI. They can check for lesions on your brain and if it's clear you have nothing to worry about, but if it does show something up its better to treat it sooner.

Fizrim Wed 16-Mar-16 23:07:06

I have TN, symptom-free since surgery luckily. The pain is awful, and I don't think the tablets you have been prescribed will ease it sufficiently - I would ask about the anti-convulsants and work your way up to an effective dose slowly. They are not instant pain relief, you need to take them regularly to build up to an effective level in your blood and maintain it (important!) for pain relief. Good luck.

StillMedusa Wed 16-Mar-16 23:52:08

Standard painkillers help a tiny bit.. but won't sort it. But to be fair it is a pretty 'niche' disorder. Your GP can prescribe the nerve pain killers that you need.

The meds are doubt about it. When I started on Pregabalin (later switched to Gabapentin) I was zoned out to the max... I remember looking at the lino on the floor in the loos at work and seeing little mice running around in it!!!!

Carbamazapine, Pregabalin, Gabapentin are all neuroleptics that work for epilepsy and TN... they are strong meds, but they work... painkillers don't do much more than take the edge off in my experience.

I'm 48 now..have other weird neuro stuff (ataxia, strange weakness that comes and goes, numbness etc) It all sucks!

TheMightyMing Thu 17-Mar-16 19:58:00

Right... I felt a bit better today, I managed 5 hours with no co codamol but then I really needed them.the nurse was obviously concerned with treating my acute symptoms and I was out of my head with pain at the time, but I m thinking I probably need to see my GP , as I can't take co codamol long term, definitely make me feel woozy and like I have some one else's limbs, which is not an option if I need to drive and work? She seems to indicate that I should make an appointment if it didn't get better, but I probably need to either way don't I ?

PotOfYoghurt Thu 17-Mar-16 20:22:52

I really think you should, especially with your other symptoms and your previous medical history. Even though it's unlikely that it's something serious it's just not worth leaving it. Your health is too important.

TheMightyMing Thu 17-Mar-16 20:26:24

Better phone tomorrow then, might be lucky to get an appointment next week !

TheMightyMing Fri 18-Mar-16 17:42:10

My face has settled down though it's a bit numb feeling in places, but better than the grinding pain. However, I had chest pains on the night . One GP visit later and admitted to the local hospital medical assessment unit, I've had a full ECG, bloods chest x ray, turns out the hammering of pain killers has irritated my digestive tract !
On returning home, I 've managed to crack a tooth in half , the one the dentist filled the other day! Ah well hopefully next week will be better.

PotOfYoghurt Fri 18-Mar-16 19:11:15

Gosh you've had a bad run! Did you speak to the GP while you were there about a referral?

I do hope you start to feel better soon!


Wolpertinger Fri 18-Mar-16 20:31:41

MightyMing I think you definitely need to go back and see a real GP not a nurse practitioner (apologies to any nurse practitioners out there but the one you saw was out of her depth).

At the moment you don't have a diagnosis for what happened to you, which does sound very like trigeminal neuralgia, got given the wrong treatment if it was, and had a serious complication from the treatment you were given.

Also as you have rightly figured out trigeminal neuralgia is more common in people with MS and you are high risk for MS having had optic neuritis in the past.

You should ask for a neurology referral in view of your past history.

CharleyDavidson Fri 18-Mar-16 21:57:00

Hi OP. I second going to see a doctor. If there's a selection at your practice is it possible to ask if any of them have experience of TN?

I was dx 2 years ago. Like Medusa, I also had a tooth removed thinking it was dental pain when it wasn't.

If I took paracetamol or ibuprofen it had no effect. Zero. If your pain is dampened down by them then it's possibly time to start thinking about other causes of pain as they don't help with nerve pain.

If I took strong co codamol (in sympathy when I cried at the thought of suffering with the pain while they got me a liver funtion test before being able to start the carbamazepine) I still had the horrible pain, just cared less about it, iyswim.

I was able to see a GP who had experience of TN. He prescribed the right meds (carbamazepine is the gold standard and really should be the first thing that you are prescribed with. THe NICE advice for GPs online lists this and could be useful to take a print out of with you if they aren't keen to get you onto something that can help). He also set up a neurology appt. I wasn't able to stay on the carbamazepine, because it made me sick, dizzy and gave me horrible twitches. Even with the gabapentin that I can tolerate, I have shitty side effects I didn't have to deal with, but I trade that in for the amount of relief from the pain I get.

I had an MRI to look for MS along with blood tests for other systemic causes, which sounds like it could be useful for you if you have other symptoms that aren't just TN. They found no specific lesions, but did find white patches on my scans. They put them down to age related causes, but I did find a link to migraines with auras when I looked online, which is something I used to have. I've since come off the combined pill as (in the GPs words) 'In light of your migraines and your MRI scan, we don't want you having a stroke now, do we?'

If it is TN and it's not manageable by meds then there is an operation. I was referred to a neuro surgeon, but as my meds work quite well, I won't be a candidate for surgery - nor do I want it.

You have my sympathies, OP. If you want to PM me, feel free.

TheMightyMing Fri 18-Mar-16 22:38:09

Oh you are all so good to respond with such detailed answers .my plan is get my digestion back to normal ( I feel a bit yuck ) , get my broken tooth fixed ( which probably happened because they drilled out the filling trying to suss out my issue) then once all that's sorted I will go and see the gp to progress my referral , in any case I need to see why I have this residual numbness. Do you think it's weird that it has settled relatively quickly or is that normal ? Not that I am complaining as the pain was horrific . Thanks all

Fizrim Fri 18-Mar-16 23:24:23

TN varies tremendously between sufferers - some have breaks or periods where they are free of attacks because the TN has gone into remission, others don't. I hope you are getting some respite and that it continues!

MyLittleFinger Sat 19-Mar-16 19:20:21

Even if you feel much better it's essential you visit your GP for proper pain killers for TN. Co-codamol may have helped this time but it won't in the future. I take amitriptyline which helps a lot. With the cold weather outside seemingly getting colder I've had a huge flare up this week, any venture outside means I have to wear 3 hats just to keep the cold off my ear (TN migrated from my face to my ear).

Tell your dentist you have TN this will be causing tooth pain, my gums and teeth are sore with it all also my right eye twitches and feels as if it's out of place.

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