A shout out to all of the mnetters with TN. And a few questions...

[2kidsintow]

Because there seems to be lots of us going on the outcome of a few other threads I've read.

Out of interest,
how easily was your TN diagnosed?

what were ypu prescribed and do you have effective pain relief?

how long have you suffered from it and gave you had any periods of remission?

have you been referred to a specialist or given any other tests?

and finally, have you been offered or had surgery?

TIA x

Good idea:)

I was dx 5 years ago. Though in retrospect I think I had it long before, in my 30's when I had a tooth removed in extreme pain.. but the tooth was fine. That episode resolved by itself but 5 years ago it came out of no where... excruciating... the shock pains and an underlying burning pain along my jaw line.. exactly where the trigeminal nerve lies.

It took 4 months and the loss of two more healthy teeth (at the back thank God,...can only see if I really grin) before my bewildered dentist referred me to a neuro.

In the meantime I saw my GP..had a million antibiotics and meds before I saw a different one.. who had just come back from a conference on nerve pain! She quickly realised what it was and started me on Carbamazapine. Unfortunately it made me vomit so we switched to Gabapentin. HUGE dose.. at the peak I was on 3600 a day!!!! But it worked. The neuro confirmed it was TN and since then I have been on gabapentin continuously.

I now take a lower maintenance dose, but at the first sign of a flare I up it massively. I have been told not to stop taking it.. I DID stop (I'm stubborn and hate meds) and recently had my first huge flare in about a year :(

Generally I can go months without a squeak and then something will set it off. For me, any dental work is a massive trigger and needless to say my dentist tries to avoid any!

Mine started on my right side, but unfortunately, as can happen I now have it both sides.. but never at the same time.

At its worst I was actually suicidal with pain.. I couldn't imagine how the pain would ever go away and allow me to live a normal life.. but for now, it is controllable and ok.

I have other neurological problems and was checked for MS but no lesions were found and I refused a lumbar puncture for diagnosis cos I'm a chicken.. I have ataxia and nerve pain and weakness on my left side.

I have not been offered surgery at this point, as mine IS controlled with meds.

It is a bastard of a condition and I wouldn't wish it on my worst enemy!

Hi medusa.

Mine also started with toothache and a tooth being removed. But it didn't stop the pain and I went to an emergency dentist who x rayed and said all was clear and he wouldn't t do anything. Then I went back to my own dentist who was mystified. She removed and replaced an old filling to see if ti would help. It didn't. As I walked put of her surgery numb from the anaesthetic but in agony all down my jaw, I knew it wasn't toothache.

I had a friend who has TN and she asked me if I thought it could be that. I saw the gp the next morning, I described my symptoms and asked of it could be TN and he said it was and put me on carbamazepine. It was ok but when I raised my dose I started to struggle with the side effects. I couldn't walk in a straight line, couldn't stay awake and had a big twitch in my hands.i forgot my words and couldn't type.

They swapped me to gabapentin and I'm glad. The gp made me wait 2 days in between stopping carb and starting gaba and it was the most agonising 2 days of my life.... A constant attack for over 16 hours. I done know how I put up with it. But then the gaba worked. I still have a small twitch but nothing else and I can live with that.

I've had no remissions yet and have had TN for 8 months. I am mostly pain free but I ache or have little niggles every day. I know when I need to take my next dose. And I try to avoid the cold weather, or even the cool breeze on a warm day as it sets me aching.

I've had an mri, been through the tests for ms after my mri showed possible indications and got the all clear an my lumbar puncture results.

I've seen a neurosurgeon who asked me of I wanted brain surgery. Then said it was a lot point until I've had my LP results which I hadn't then.i go back in a few months to see them again. I expect to be told that the medication works ok so forget it though.

I am indebted to another mnetter, partygatecrasher, who is my friend with TN who has given me lots of advice and been a step ahead of me with appointments most of the way. She's even taken me to mri and neuro appointments for the company. to her.

In answer to questions:

Fortunately my GP knew what it was straight away and even if she hadn't the I was going to suggest it - thank you Google. Prescription was Nortriptyline which I take when needed before bedtime. They used to make me really sleepy but not so much now, however by the morning the pain has gone. My ear sometimes aches afterwards.

I've had it about 8 years with no real remission, summer is better sometimes nothing for 4 or so weeks, but the first breeze of autumn for instance and off we go again. Having said that it can really be random and unpredictable.

I haven't been referred to a specialist but by chance did see one about my teeth (totally unrelated) and he was more interested in the TN lol. Haven't had any tests or surgery. Whilst I can manage the condition I will do so, there's still different drugs I could try if the current medication doesn't work in the future. An operation is effectively brain surgery so if I can avoid that I will.

Tips to help someone else:

Take medication at first sign of pain, it will only get worse and you may be able to stave off an attack.
Wear a hat on cold and windy days.
Turn your face away from the fridge when opening.
Warmth helps - a wrapped hot water bottle on your face, washing your hair gently, and sleeping on the affected side.
Codeine helps a little, paracetamol not at all.

So you just take the nortryptilene when you have pain? I'm on a steady dose of the gabapentin, aimed to prevent the pain in the first place. But then it takes ages to build up to an effective dose so you can't just stop and start taking it.

Yes I only take it when the pain starts, not constantly.
I also can't wear earrings because they are a trigger, and my hearing isn't what it should be, but I can't wear a hearing aid as the TN would instantly start. I can just about wear glasses for a while moving them about so as not to hurt.

That would scare me. Now my medication has got to a level where it prevents any attacks from ever occuring (just aches and niggles on a cold day, but no proper painful attacks) I am scared of going back. I thought the idea of most TN medications was to prevent attacks, not lessen them when you start to have pain.

You must be braver than I!