Trigeminal neuralgia

[surlycurly]

Hi there, I've recently been diagnosed with this but the atypical type which presents as a constant pain like toothache in my cheek, ear and jaw. Has anyone had this too? I'm pretty miserable and have only been given amitriptyline. I'd love to talk to someone who has experience with this. TIA

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Yes, I have trigeminal neuralgia type 2 (atypical TN), I’ve had it for more than 20 years. I don’t have pain all the time, it flares up, lasts for about 6 months then vanishes again for a year or more until the next attack.

I’m on carbamazepine when I have flares. I understand it’s usually first line treatment for TN, although my GP tried me on Gabapentin first but it didn’t work. In general the carbamazepine works for me, but the side effects mean I can only manage a low dose. Happy to answer any questions!

@Pushkinia thank you so much! I had a facial injury earlier on in the year as a result of a ruptured ear drum and they think it's that that's triggered it. It's mainly in the area around the top of my jaw near my ear, and in my cheek. It's a throbbing pain that flares up and seems to be set off my being cold, tired or crying. Although that's not 100% conclusive. It seems to be worse late in the evening and in the early hours of the morning. Do you ever take pain meds for it? I'm tired and miserable all the time at the moment!

surlycurly I’m sorry you’re having to deal with this nasty condition. Mine is affected mainly by temperature and makes it very hard to eat. During a flare I mainly eat lukewarm soup, mashed veg with gravy and fruit purée. I only take carbamazepine (also known as tegretol). Normal painkillers just don’t work. I have heard of other people on Amitriptyline though and it works for them. Have you heard of the Trigeminal Neuralgia Association? I’d strongly recommend having a look at their website and joining if you think it would help. They run lots of webinars - the last one was how to survive dental appointments! There’s also a Facebook group (I’m a member) which is very supportive.

Oooh I will definitely check out the society and FB group. I'm at a bit of a loss as to how to move forward with it. Between that and lockdown, I'm fed up beyond words.

And may I add, yours sounds horrific. I can't believe you've managed 20yrs with it! You deserve a medal x

Thanks surlycurly but I think I’m lucky - I can cope with the pain, mostly. Some people on the FB group have much more severe symptoms. There is a lot of information on the website and lots of support in the FB group. You’re not alone!

Yes I have it too - 30 years here and counting. I actually don't take any drugs for it. Pain killers don't touch it and I do tend to over react to many drugs and get every side effect going so I've refused the preventatives so far.

I worked out quite quickly what my trigger was ( in my case it's wind) and avoid them as much as possible. I'm "lucky" in that an attack only lasts a couple of hours of shooting stabbing/electrical jolt pain and heat will take the edge off it for me.

It's a horrible condition

Normal painkillers don't work but there are several meds to try if the amytriptilene isn't working. I have good results with gabapentin. My pain is mostly atypical in my cheek and teeth and jaw with a grinding ache and an icy sensation. The main triggers are cold, stress and exercise, because mine is caused by an artery rubbing on a nerve in my brain. So if my heart rate rises I get more pain.

I may have had something like this earlier in the week - nowhere near as bad as other posters or yours OP but I googled and I found that holding my tongue to the roof of my mouth gently pressing actually released my jaw to it's natural position of that makes sense?

Also applied Omaprizol ointment for mouth ulcers to a painful area and it reduced a lot of the inflammation.

Hot water bottle in a fluffy cover also helped.

I'm not sure if it was related but my jaw stress and pain in my face is often worse in the week of PMT symptoms so there could be a link to this which could cause it for flare up? Unqualified to confirm this medically however, I'm going by what usually happens to me.

Much sympathies to you OP, it is very painful to have any prolonged jaw facial pain

Comfort, if it felt like your jaw wasn't quite right and was also stress and hormone related it is more likely to be TMJ

@DrMadelineMaxwell that exactly how mine presents. Blooming miserable situation to be in. I've been on gabapentin before and genuinely thought the world was ending so I can't risk being on it again. I'm feeling slightly better today which is a massive relief as I've had a bad few weeks. I can't believe how exhausting this is. I'll need to phone the GP back but I don't know what they'll actually do for me.

I get this with my ms. Heat really helps - hot camomile tea, and also a heat pad pressed to it.

Hi. I've been diagnosed since sept 2020. Am on carbamazepine which has helped but it didn't until I reached 1600mg a day. Have now weaned myself back down to a dose of 800mg which seems to be controlling it.
Mine is caused by pernicious anaemia and my b12 not being managed effectively causing nerve damage.

Anyone have tinnitus as a symptom of TN?

I get tinnitus, yes. It was driving me nuts yesterday. This all started with an ear infection and a burst eardrum do I have constant ear and sinus issues too. How does it affect you?

It's great to hear all your TN tips. My GP thinks I may have it after a painful few days of dentist and A&E visits in Feb, and I've been on Carbamazapine for a month and half while I wait for a neurology appointment.

My attacks which were really bad for four days, but since then - and going on medication - I haven't had any pain. I do have some slight sensitivity around my left bottom teeth (the side I had the attacks). I recently had a checkup and the dentist couldn't see any signs of decay or infection.. I was wondering if anyone else experiences low level sensitivity during their periods of remission? It's not painful, just feels like having a sensitive tooth..

@Shameeen10 Sorry to hear you have this too. My pain first presented as toothache. For over a year I was back and forward to the dentist, who could find nothing wrong. In the end, my wisdom teeth were all removed because the dentist couldn’t think of any other reason for the pain. Unfortunately the pain came back, so in the end, it took 2 years to get a diagnosis.

My pain still sometimes starts as vague tooth pain that jumps from tooth to tooth before the waves of pain start up.

@surlycurly hi!! Just wondering did the amatriptyline work?
My gp isnt sure! Ive had mris all clear. Oral max thinks its tmj! But the deep ache is 24/7! Dr prescribed me amatriptyline to try first. Hope your ok xx

@Comfortzone mine is my jaw! Started at a very stressful time. Then got pregnant with covid. Stress got worse! The pain hasnt ever really left. My consultant thinks its tmj but not sure tmj can go on everyday! X