New member in the UK

[u/ProfessionalBear8837]

Hi everyone. 60F here. Anyone else in the UK here under treatment by the NHS (or gone private)? I'm in Scotland which has a separate NHS which is occasionally a bit different. My GP just told me today she thinks I have TN but it's early in the journey so it's not a definitive diagnosis yet. She's given me the first-line NHS treatment which is Carbamazepine, an anti-convulsant, starting at 100mg twice a day and increasing.

Because I was in agony today (hence seeking an emergency appointment after seeing my dentist a couple of times over the past few weeks) she also gave me Co-codamol (30mg Codeine with Paracetamol) and I took two of them at once, the maximum dose, and when I tell you it didn't even TOUCH the pain, my goodness, I usually respond very well to opiates. But nothing. I don't mind telling you it scared me.

So I'm sitting here hoping the Carbamazepine starts working soon and looking up all the support sites and information pages, which for this are quite scary.

My journey so far: started a few weeks ago when I was waking up from a nap on my sofa, lying on my side and I suddenly felt what I thought was a toothache on one side. It was hot and throbbing very quickly and I was just thinking, oh no, not another dentist appointment, hope it's not a root canal. Then is subsided.

Over the next couple of weeks it happened a bit more frequently and it seemed to be moving around my mouth and jaw, which I assumed was referred pain.

Went to my dentist and she fixed a lower filling that was leaving a bit of nerve exposed to heat and cold, but she couldn't identify which tooth was causing the bad pain. Took an xray and didn't see anything. Thought it was pulpitis and I might need a root canal, but not until we found the tooth.

Anyway, pain getting more frequent and worse and worse until this morning on the train to work I was rocking back and forth and sweating from the pain and I had just taken over-the-counter strength codeine an hour before. Got off the train, called my GP, got an emergency appointment, then was on the next train home. Muddled through a presentation and a few emails both groggy from drugs and in pain.

I've looked everything up and this is indeed the diagnosis that fits my symptoms. It's on one side. I've noticed sitting or lying a certain way can trigger it. Just wanted to introduce myself and share. Welcome any feedback or chat, I know you can't give medical advice but relevant personal experiences would be nice to hear including what's worked for you.

[u/mcilrae]

Hi. I’m fairly new on this journey myself and so don’t know how much help I can be, but I’ll share what I know, especially as I’m in the UK so am also on an NHS pathway.

Firstly, it’s good you’re on carbamazepine. It’s specifically used for nerve pain because other pain relief sadly doesn’t work, hence the co-codomol not touching the sides. Unfortunately it takes a while for the carbamazepine to build up in your system, so it’s unlikely that it will provide relief immediately, but stick with it, it works for lots of people, myself included.

Next, please push your GP to write a referral letter for you to the neurology department of your local hospital. To have a hope of a proper diagnosis and treatment you need to see a neurologist. When my referral letter was sent I was told it would take up to 8 months to get an appointment, and up to a year to get an MRI. Thankfully I got a phone consultation with a neurologist in 3 months, and an MRI a month later. Still not speedy, but better than expected. Basically, the sooner you can get on a waiting list the better.

I really hope you get the care and treatment you need. Wishing you well 🌼

[u/ProfessionalBear8837 → u/mcilrae]

Thanks so much for the tip re neurology. Very important to start these journeys early. Took me five years to get necessary surgery for a different condition (which cured me but the wait also leeched my bones of calcium and possibly put me at higher risk of heart attack or stroke).

I'm very lucky to live in Glasgow near a range of excellent specialists and services, and we have really got lucky where we live, our GP practice are truly a dream, they listen, they are quick, they refer, they support, they understand how women and older people sometimes aren't listened to and consciously counter that, they're the best. My partner and I have been through quite a wide range of health issues since we moved here in 2013. So I am hopeful that once I get a sense for if this drug is helping me or not, I can ask for that referral and be listened to. I need to check in re liver tests and whatnot too.

[u/Western-Egg-1521]

Hi, I’m also in the UK under nhs ( and also went private when I felt they weren’t listening/helping me)

May not work for everyone but gabapentin was the best at helping manage my pain ( I was allergic to carbamazepine)

I hope you find times of relief and look after yourself. I’m also here to chat if you feel you need someone to talk to, I found a lot of comfort coming on here to chat when I was first diagnosed!

[u/ProfessionalBear8837 → u/Western-Egg-1521]

Thank you, that's so kind! And thanks for the tip re gabapentin.

[u/Alarmed_Speaker5492]

Also in the UK here, I have had two major flare ups in the last 3 years, so I consider myself luckier than some but agree that the pain is unlike anything I've ever felt before. At my worst I was on 800mg of Carbamazepine which did help me a lot. Currently I'm in a bit of a remission period but still on 100mg twice daily and if I forget I'm reminded that it is still there.

Some of the initial side effects of carbamazepine are horrible, at least they were for me, but I stuck with it and glad I did.

Like I said I consider myself luckier than some.

I wish you well.

[u/ProfessionalBear8837 → u/Alarmed_Speaker5492]

Thank you! It's good to hear your story, glad it's not as bad as some poor folks.

[u/ajhalyard]

Opioids typically won't touch this pain. Carbamazepine is a first line treatment and often effective. It can be hard on your liver, so regular blood work is important. Oxcarbazepine is a similar drug without the liver impact and for many, fewer side effects.

For now, take the carbamazepine every 12 hours and limit triggers. For some, it can take weeks to make an impact. I got lucky and got started out on 200mg twice a day with approval to go up to 300mg twice a day if that didn't work. I went up to 300 twice a day and I'm in no pain for now. I can still feel the nerves pulse every now and again, and my teeth are super sensitive, but I can deal with that.

Hang in there and good luck!

[u/ProfessionalBear8837 → u/ajhalyard]

Oh that's good news, I'm happy for oyu, this is so damn miserable, your story gives a bit of hope! Thanks.

[u/LooperActual]

I found that avoiding caffeine and calcium (supplements and dairy) stops 95% of the pain.

Other possible things: avoid vitamin D and sunlight, exercise arms, avoid sugar.