Trigeminal neuralgia

[Veganfortheanimals]

For the 4th time in 2 weeks I’m in horrendous pain again .
Dentist took an X-ray ,can’t see anything wrong ..I’ve lost 2 teeth already to this pain ,I don’t want to loose any more .
Dentist has suggested a root canal, just to see if it helps ...
The pain is in my jaw bone ,my teeth all feel fine
So I’ve been looking up on line what the pain could be ,and this TN fits the bill ....
I’ve done an e consult to my doctor and asked for carbamazepine...
Will they give it me?? Or will I need some test .
I’m in agony when it starts ,I have to lie down and concentrate hard to not scream ...I’m taking well over the recommended dose of nurofen plus ,just to get through it ..it says it’s common in women over 50 ,I’m nearly 50
Anyone had the same ..be so glad to chat to someone who understands

My FIL had it, he had an operation to sever the nerves, took a while to get to that point so you will need to be persistent.

Have you been to your GP? I was so lucky that mine diagnosed me straight away whereas people I know had several teeth removed for no reason. I was given a course of epilepsy meds (can't remember the name) and the neuralgia has never returned. I feel your pain, I'm so sorry.

@Veganfortheanimals

For me, surgery is not an option at the moment. The condition is progressive so the periods of remission will become shorter and the amount of time I’m in pain will lengthen. I might consider it when I’m at a point where I can’t continue working or caring for my children. Surgery has lots of risks attached and lots of people get pain recurring after so many years. As I may, hopefully like til I’m in my 80s, I’ve got 50 years for things to get worse.

Although I am very sad about my condition, majority of the time, I am unaffected by it and it doesn’t stop me leading an active lifestyle. I still work and have 2 children and I am like any other person. When I’m in pain, I’m helpless.

If I was in your position (and I was 5 years ago) if the over the counter meds aren’t helping, stop taking them and try to work through the pain. I know that’s not helpful but if it’s trigeminal neuralgia, they won’t work. That’s one of the diagnostic criteria. Anti convulsion medication usually works. If the pain is too much, phone out of hours as they might be able to help.

Hi OP.

Definitely try and pinpoint whether you get any relief from the pain killers. If you do, it could be something else. If they make no impact, then it could well be TN and you can stop taking them. They are like popping smarties if it's nerve pain. Pointless. I remember the fear of the pain and wanting to take SOMETHING for it, but it doesn't help.

TN often is described as a relapsing and remitting disorder. It can (for some people) come and go. My friend had it before I did. But then went into remission. ANd has mostly been in remission the entire time. Me, on the other hand, am very grateful that my gabapentin is effective for 95% of my pain 95% of the time, yet I still get breakthrough pain, especially if I exercise. If my heart rate rises, the irritation on the nerve increases and my pain and an ice-cold sensation in my cheek also increases.

My MRI (it's worth chasing one if your gp will refer) showed a compression on the nerve and there is an op called an MVD (microvascular decompression) where they cut a hole in the base of your skull, find the compression and put a pad of teflon between the nerve and the artery that is rubbing on it.

But it carries a relatively high risk of death or meningitis. I know someone who had 2 procedures. The first, he had a heart attack on the table and they had to stop. The second was successful but he then got meningitis and was ill for a while. It can also risk your balance and your hearing in that ear.

It can also fail. I have another friend who has had 2 MVDs and is still having pain as it keeps coming back.

So, despite seeing a neurosurgeon in Walton they won't operate as my medications mostly give me pain relief.

Out of hours were pointless for me when I first called. They 'diagnosed' a blocked salivary gland and pointed me towards the gp the next day.

It's not a really well known problem.

THere's a great book called Striking Back that's worth getting hold of. But I think it's only available in the Trigeminal Neuralgia Association, unless you're lucky enough to get it from your library.

I have had several bouts of neuralgia. I would much rather be in labour! The only thing that helped for me was carbamazepine. I was eventually on the highest dose and I stayed on that for several months with regular check ups. In the first few weeks I had a lot of nausea and as the dose built up I was so, so sleepy. I was so sleepy I couldn't function at all. I would be in the middle of a conversation and wake up and find my friend had covered me with a blanket and gone home.

But it was better than spending my time crying in pain, pacing the floor and pressing my face against the tiles in the bathroom to get some relief for the pain.

Alongside the carbamazepine I took antidepressants and cocodamol.

My lips would tingle and even now, 10 years since I last had an attack my lips will tingle as part of an aura before a migraine.

It is a horrible condition and I really feel for you. I was frightened of taking carbamazepine but in the end I was faced with the prospect of not functioning, not eating, sleeping, seeing friends because of pain with no end in sight or not functioning because I was so sleepy but pain free. I chose to be pain free. And I would say it took a month for me to get used to the medication to the extent that I could have a nigh on normal life.

My mum had trigeminal neuralgia, hers was caused by a vein pressing on a nerve. Eventually she had brain surgery to separate the vein and the nerve which sorted it out.

I remember a Radio 4 programme about this. It was a few years ago so not sure how useful it would be now, but worth a listen maybe:

www.bbc.co.uk/programmes/b03gbxnd

Oh I remember the uncontrollable drowsiness with the carbamazepine.

I sat fighting drooping eyes and falling asleep when taking my dd to the dentists once. The receptionist was one of the parents of one of the kids in my class. I had to explain as I must have looked stoned.

It made me travel sick even in the front of the car.
It gave me such a large twitch in random parts of my body every ten seconds or so. Big enough that I would drop my phone when texting. Drop my pen when writing. And, memorably, when it kicked in unexpectedly when driving, big enough to make me let go of the steering wheel with both hands while driving. It left me unable to remember the word I wanted to use. It also ruined my spelling. I knew what I wanted to write and how to spell, but I'd skip letters or write the beginning of the next word in the middle of the previous word. And I often said a similar-but-not-right word. So a different colour to what I wanted to say.

All of which were pretty crap and really noticeable in my job as a primary teacher.

So I had to come of that, but it was the best thing I ever did as gabapentin really suits me. My side effects are there but so tiny that they aren't really noticeable except to me.

I've had it for 30 years - it's a horrible thing. Luckily I do get periods of remission and I know my specific trigger ( letting my face get cold with wind) . Heat is really the only thing that eases it but I'm going to try the ibuprofen lysine recommended by a PP.

So far I've managed to hold off the prescription meds as I understand they only work for a short while. I'm keeping them in reserve.

Mine have successfully worked for 6 years at the dose I first got relief for.

I did find heat therapeutic. And rubbing in peppermint oil. It hurt like hell when rubbing it in during an attack, yet it was still strangely soothing.

Oh god ,why do dentists not know about this ..it’s not fair I had to loose 2 teeth ,and when the pain is bad I’d agree to loosing another if a dentist said it would stop the pain.
I’d rather give birth any day than have this pain

I’m going to try to find the Facebook groups for this today

I know it's not helpful when the pain is terrible, but please please don't overdose on anything with paracetamol in it. (IE co-codamol). The dangerous dose for paracetamol is really quite close to the maximum permitted dose, so do be careful.

I hope the doctors can help today. My relative with trigeminal neuralgia can help prevent an attack by wearing a headscarf outside to stop the wind blowing against her face. She also finds heat can help if she is having an attack.

For a small glimmer of hope, my DH had an acute bout of TN. He used to get the awful attacks - I remember being in restaurants with him and he used to just zone out during one, as the only way he could get through the pain. He was given carbamazepine, took it as prescribed and over the next few weeks the attacks got less severe, and then stopped altogether. He stopped the carbamazepine and has never had an attack since (2 years ago)

I can't remember what the doctor said I had but years ago I used to get what I can only describe as contraction like pains in my face. It was so, so painful. After much trial and error and pointless dentist appointments I was described amitriptyline. It worked wonders and I was so relieved.

I’m sat just waiting for the doctor to phone ..I’m suprised At how many people also have it ..and sad ,because it’s horrid .
I’ve not yet worked out what sets mine of ...it seems so random .twice it started in the middle of the night ,once at teatime ,once in afternoon

Mine was random too. It could also be triggered by eating or drinking. Or touching my face. Or lying to sleep on that side. Just mostly it just came out of nowhere.
Fingers crossed the doctor helps.

Have a look at the TNA-UK website as well for more information, OP. I hope the GP rings back today (if not, press them!).

I have the acute form of TN called Anesthesia Dolorosa. Basically TN all the time. After 2 unsuccessful radio thermal thingys , I had major brain surgery ( not the surgery OP have mentioned above ) but deep brain stimulation. It has worked. I still take a dose of gabapentin but now function normally . Before surgery I was contemplating ending things.

I've been refused surgery. They took an MRI and said that surgery wouldn't help and may actually make things worse. Its just a case of managing it really. It will pass though, attacks don't last forever. Once it settles, you may go months without a flare up. Sometimes even years.

I cannot guarantee this will work for anyone else, but mine is kept in check by myofascial release. It's a kind of massage, and I went initially because I thought it was tmj problems.

I've looked up the UK, and you do have an association there.

Given that for most of us it's a pain that makes us want to drive off a cliff, I couldn't not make the suggestion.

I had a couple of treatments in the first 2 weeks, and now I go about every 3 months. It doesn't cure it, but I don't get it for several weeks at a time, and for me it's priceless. Very occasionally I take the nurofen lysine and that takes the edge off till I get in to another appt.

Good luck.

I echo what people have been saying about paracetamol etc not helping.
My TN was diagnosed several years ago I had 12 years of pain then it went into remission, and has been for the past 4 years. Sometimes there is a twinge so I just have to be careful not to trigger it. What happens when you open the fridge door does the icy blast start it off? Even my hair had to be shortish as just half an inch over would start the pain. I couldn't wear my hair in a small bun as the pain would start when I scraped it up. All my teeth ached, and my right eye would constantly twitch. Mainly the pain was behind my right ear, a hot water bottle helped.
Medication for me is Amitriptyline it really works well, if you are prescribed this it does make you sleepy until you get used to it.
Hope you get some relief soon.

Hi Op.
I was diagnosed early this year and actually posted on chat about it( under old username) and got loads of helpful advice.
Firstly I'm really sorry you're suffering with this, it's the most horrendous pain I've ever suffered in my entire life, the only way I described it to people is like having electric shocks on the right side of my face with a hot poker burning sensation in my upper jaw...like contractions of the face! I'd rather give birth any day.

In fact, it's impossible to convey just how painful it is. Like others have stated, over the counter pain relief did nothing for me, the pain started just as lockdown started so I couldn't do my usual trick of running to the dentist for a check up and ( as it's turns unecessary) dental work. Dr originally diagnosed Sinusitis, but it wasn't until my husband came home and found me shaking on the floor and literally screaming into a pillow did we go to OOH.
I was diagnosed straight away and put on carbempazine.
It took a while to find the right does,and for a while I really struggled with the side effects.

I almost didn't want to tempt fate by saying how I'm feeling now! I'm off my meds for a while but am absolutely rigid with what I know triggers my attacks.
For instance brushing teeth.....I rub sensyodnne toothpaste on the right hand side of teeth, brush with a soft toothbrush warm water.
I keep my face loosley covered in the cold with a scarf or hood
Don't chew excessively. I even try not to make any sudden movements on that side of my face.
That helps me anyway, it might just be a trick of the mind but I find it helps
I kept a diary of my attacks to find mine.

My next step was referral to MRI but my Dr seems keen not pursue that, not right no anyway, while I'm keeping it at bay.
There's also a Facebook group which I also found brilliant

Best of luck feel free to PM me

Thankyou everyone
Well I saw the doctor and he diagnosed TN ,as expected,and I’ve been prescribed carbamazepine...I pick it up later today .
He took a full history,and because I’m vegan wants to run some blood tests for vitamin defiency..that’s ok ..happy to do that .
He said to lay of the nurofen though,so I hope this carbamazepine works ..every twitch now has my anxiety through the roof