Trigeminal neuralgia

[Littleelffriend]

Hi does anyone have any experience of this? I've been in severe pain over the last few weeks and my dentist now thinks this is the cause. Everything on the internet is terrifying.

[B19M]

Have you been prescribed anything like carbamazepine yet ? Or referred to the Local Oral Surgery dept?
Don't panic-lots of people manage this condition-definitely stop looking at Dr Google.

[Littleelffriend]

Yes I've been prescribed carbamazepine. Have you any experience B19M?

[TweedAddict]

I used to suffer from it. I've had a few pain free years now- thank goodness! I ended up in intensive care due to an over dose trying to get rid of the pain- I had that day seen 5 different doctors. No one took me seriously at all.

I found gabapentine works the best for me. I had it for a year then suddenly it went, just as it came.

Coping wise, keep your face warm, try to get some sleep, I use to use one of the travel pillows with the hole to not put any pressure on the nerve. See your gp and get an appointment to see a max fax consultant.

[B19M]

Yes OP, like Tweed says, you must insist on a referral to nearest Oral & Maxillo-Facial dept. Your dentist or GP can do this for you.

[MrsRyanGosling15]

Drug yourself up, join support groups. Research different ways of coping with pain. It's amazing what you learn to suffer through. It is a terrifying as it seems. I wouldn't wish it on my worst enemy. So sorry you have this.

[MrsRyanGosling15]

Obviously drug yourself up with prescribed medication from your doctor taken at the right dose! I don't mean start doing drugs!

[TheMightyMing]

I had an attack about 6 months ago or so I thought. Worse pain ever, couldn't speak or breathe when the pain was bad, it came in waves not unlike labour pain. My doctor said TN was the likely cause.

I ended up in hospital as the heavy duty painkillers prescribed gave me chest pain , I'd literally burned my insides with painkillers and no food.

Then my tooth broke and the pain went away. I have been told that this could be coincidence and that I may have another attack. I'm praying not as it was literally unbearable.

Really hope you get it sorted, advice above sounds good though horrifying to hear another poster ended up in intensive care. I was on medical assessment unit with a suspected heart attack- I'm 46 and as fit as a flea.

There's a TN website, worth reading but a lot of it is worse case scenario.

[TheMightyMing]

Interesting that we've all more or less said the same thing!

[Littleelffriend]

Thanks so much everyone it's agony

[PotOfYoghurt]

I was diagnosed about 4 years ago. Find a medication that works for you, carbamazepine gave me awful side effects at high doses as did pregabalin and gabapentin, they worked for me for a while the balance of pain relief/side effects was too difficult to get right. I've been on oxcarbazepine and topiramate for a couple of years now, with amitriptiyline if I'm having trouble sleeping with it, and naproxen and co-drydamol for pain relief if I need it (though it doesn't really do much!)

Have you been referred for an MRI, or to see a neurologist?

Work out what your triggers are and try and avoid them, i.e. It touch based (wind, your hair, a kiss can all affect it) do you have issues with eating hot or cold food, cold air etc

I also have since been diagnosed with occipital neuralgia, migraines and 'atypical facial pain' as my neuro didn't really know what it all is. TN is still relatively unknown, particularly in younger people, and you may find a lot of doctors don't know much about it.

[Whyarealltheusernamestaken]

Hi Little, yes I have this luckily I'm in remission at the moment. Maxilofacial are good but inbound pain management specialists better. Print off some info from the tn website for your friends and family as you will need support, and at your worse you will find it hard to explain

Medication can help a lot, but it can be draining, there's some great support groups on facebook though. If you ever want to pm me with questions I've been living with this over 10 years now and there is light at the end of the tunnel with a good doctor, but you may need to fight for what you need x

[Whyarealltheusernamestaken]

I found...not inbound....auto-correct!

[Littleelffriend]

Thanks for all your responses had a terrible night not really sure how to proceed. I have to phone my dentist on Monday to tell him if the tablets are helping.

[CognitiveIllusion]

I know two people who have had this - my mum and a friend.

In the friend's case, it was triggered by a virus. After several months of pain it went away by itself and she has been symptom free since then.

My mum's was caused by a vein which was pressing on a nerve in her head. After several years of intermittent pain she had brain surgery to separate the two, which cured it completely (but obviously this wasn't without its own risks).

Good luck OP.

[Littleelffriend]

Does anyone know how long it should take the drugs to start working?

[PotOfYoghurt]

What dose are you on?

I noticed a difference within a week, then as I increased the dose it improved more.

[Littleelffriend]

I'm only on 100mg twice a day at the moment.

[PotOfYoghurt]

Hopefully they'll start to help soon. When my doctor first gave my carbamazepine he said if the pills help it's TN, if they don't it's something else.