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

Anyone

Hard to say really what it is as you can't test for it, its diagnosed by ruling out other causes. Do any of your teeth react to anything? Pressure, hot, cold etc?

If not then it could well be neuralgia. Or possibly TMD. I have trigeminal neuralgia and the main thing that the doctor picked up on was the fact that it could start up and I'd be in agony in seconds and then when it stopped, it would be gone as quickly as it started with no residual tenderness, no sign it was ever there.

Exactly the same here ..did you get any tingling in your lips

Are you on carbamazepine,..where there any side effects

My dentist sent me to the dental hospital where I was examined multiple times, saw a reconstructive surgeon and had a gazillion x-rays. Teeth all fine. Sent for an mri, sent to neurologist and now I’m waiting for the next lot of results. I’ve been given access to a pain management clinic and I can have meds - but so far I’m not using them. My neurologist is talking surgery - not teeth. It was a long path to diagnosis and I’m thankful my usual dentist saw it was a real problem as I’d not mentioned it to her but when she touched my tooth I went through the roof.

(Just had second mri sorry - it wasn’t clear in my post)

The best pain relief is codeine and paracetamol neurology is a good call good luck

What surgery..is that to damage the nerves to stop the pain

Im so dosed up ,I’m half cut trying to cook the dinner ..I can’t go on like this ,untill the pain killers kick in ,I just want to scream
I didn’t even scream giving birth ,so it’s really painful

The surgery is to move the nerves in the brain so they’re not spaghetti-like.

Did nothing else work meds wise

Pregablin is prescribed for nerve pain. I find a hot water bottle helpful to ease the pain, it is often trail and error working out triggers and what helps you. I find the cold, spicy food and sudden changes in temperature excruciating, at times I have begged my dentist to remove 3 teeth where the pain seems to be coming from, the pain can vanish for weeks so i presume it isn’t my teeth but when the pain is bad I’d do anything. I see a neurologist every 6 months, no surgery plans as yet.

I suffer with constant nerve pain (not Trigeminal Neuralgia) and have had success with Amitriptyline, Gabapentin and 30/500 co-codamol (which I take every day), plus doses of Oramorph as needed.

I went from wanting to chop my legs off on a daily basis to actually being able to participate in life a bit.

This is a very debilitating condition. I am sorry your are experiencing it. I am not medically trained but have a family member with the condition.
There are a variety of treatments: medication; Radio Frequency injection (heat damages the nerve); glycerol injections (to damage the nerve) or surgery. The least invasive approach is used initially, i.e. medication, then other options can be used if unsuccessful.
You should speak to the neurosurgeon to see which is the best option for you. These treatments and procedures are going ahead. You can go through the NHS, or privately if that is an option. You need to do some research and get treated asap. Hope you get the help you need.

Thankyou ...it’s massively effecting my life ,I’m scared to out Incase it starts

No, no tingling but I hear its common. Mines a bit weird anyway because it switches sides, it isnt always the same side. Anything can trigger it but 8ts mostly stress. I strongly suggest you do not attempt to wear headphones btw because they make it worse.

Carbamazepine did work for me but only for a couple of weeks then I seemed to get used to it. I'm not on anything now except painkillers when it kicks off. Best I've found is rapid ibuprofen lysine 342mg you can buy them over the counter, Wilkos is cheapest. Take two with two paracetamol. It kicks it down a few notches for a couple of hours so I can at least sleep. You can take that dose every 4 hours as long as you eat with them. If you can, get the GP to give you omeprazol to protect your stomach.

I’ve not heard of that ,lysine nurofen ...I use nurofen plus and co codamal .ive took 6 so far today ..I’m going over the recommended dose every time I have an attack ,I just can’t take the pain

Its this. Taken with paracetamol it really helps. Only thing I've had any relief with. Codeine, naproxen, nothing touches it.

I think its pretty similar to feminax if you have any of that?

Thanks I will buy that tomorrow,totally appreciate that x and totally appreciated all the replies

As you've already discovered OP, over-the-counter painkillers don't make a dent on TN pain. Codeine may help a bit, but you need something from the GP like the carbamazepine. Start with a small dose, take it regularly (it needs to build up to an effective level in your bloodstream, it's not an instant-acting painkiller either) and see if it helps.

Is your GP going to come back to you about the meds?

I’ve just had my order from amazon cancelled for the pain killers ,they won’t let me order ..I’m running out of chemists where they don’t know me
I actually feel like a desperate junkie ,I’m terrified of this pain .idont go anywhere without a bag of painkillers ...
I’m terrified the doctor won’t belive me ,or help me

I had to do an on line form for the doctor ,I put all the information on the form ,and I said I’m going over the maximum doses for over the counter pain relief ..I’m praying they contact me in the morning

I was diagnosed 5 years ago aged 27. I sometimes get tinkling in my face, burning like sunburn, ringing in my ears, shooting pains down my nose. I have both type 1 and 2 and on both sides of my face. It’s progressive but goes into remission.

Constant aching lasts about 3 weeks. Nothing touches it. Disappears for about 3 months and recurs.

Sharp shooting pain continues is relentless for about 2 hours. So bad I can’t open my eyes. I can barely breathe through the pain. That occurs yearly and lasts daily for about 2 months.

I am on carbamazepine. It’s a low dose as when I increased it, I got double vision. It lasted for weeks.

I was diagnosed by a dr but sent to a neurologist who confirmed diagnosis.

Awful condition. I hope you don’t have it. It makes life so difficult. Triggers are eating, talking, change in temperature, washing, brushing teeth wind and sometimes just breathing.

I’m all doom and gloom. I’m sorry

Oh god .sarah .thats awful ..I hadn’t even thought if this was long term ..is there nothing the doctor an do ,like an operation to cut the nerve