Anyone know anything about trigeminal neuralgia?

[Scootergrrrl]

I went to the doctors this afternoon because I'd had a dreadful pain in and around the left side of my face fo a few days. It came and went but was possibly the most painful thing I'd eve experienced, with the exception of giving birth to an 8lb 6 baby with no time for drugs
Dr diagnosed something called trigeminal neuralgia and prescribed Tegretol which seems to have a long list of lovely side effects. Does anyone have any experience of this? Might it just be a one-off or is that it now for ever and ever?

It's excruciating.
See a good cranial osteopath.

It really was! Would a cranial oestopath sort it out?

I thought I had it, but it turned out to be shingles (of the trigeminal nerve). Horrible, imagine pain very similar. I think, from what I read at the time, no one really knows whether its likely to be a one-off or reoccur? It could be down to trapped nerves, hence definitely worth visiting a good osteopath...cranial much gentler...good luck, hope you get more info.

A friend of mine has this. She gets it on and off every now and then. I'm sorry I can't be more specific than that, I'll ask her next time I speak to her and report back. As far as I know she hasn't had an episode for about a year.

She's found that taking anti-depressants for a couple of months eases the pain, then they stop working and she has to switch to stimulants like caffine tablets and loads of coffee. It's not very scientific and probably not very good for her but it works and she now only gets it once a year.

I'm pretty sure the University of Glasgow did some work with Neuralgia and my friend went along.

As I said, I'll ask my friend when I next see her. If you don't hear from me PM me to remind me!

cranial osteopath with do bugger all.Actually not true - good placebo
Yes you might well just sort of grow out of it.
Try googling.
As a former sufferer you have my deepest sympathies.
Tegretol worked like a charm

I've had it and it's grim. Sympathy. Not sure whether cranial osteopathy will help - mainly because when I had it there was no way I would have let anyone within an inch of touching me.

I was prescribed Carbamazapine which I think is the same drug (?) I didn't take it because of the side effects. I did take whopping amounts of ibuprofen which seemed to damped it down alot.

Has something triggered it off? My triggers appeared to be stress and cold and also I think there was possibly a hormonal element. Touch wood I haven't had it for several years now so no, hopefully you're not stuck with it for ever.

as well as medication to ease the pain, you must have a referral to a Neurologist who should send you for a an MRI of your head.

If it is trigeminal neuralgia, then there is a type where the nerve and the facial artery become entwined (thus the nerve is badly irritated). You can have surgery to sort this out.

I had Trigeminal Neuralgia.. right side for me. I wouldn't go NEAR a cranial osteopath... when mine was at its worst I couldn't touch my own face let alone have anyone else near. Mine started as a sort of weird sharp pain that I (and the dentist) thought was a tooth problem.. had two teeth removed needlessly before I saw a neuro who correctly diagnosed me.

First line of treatment is tegretol but it made me hideously nauseous and didn't control the pain well. Then I was switched to Gabapentin and for me it was..and still is.. a miracle drug. In the 3 months prior to diagnosis I honestly thought I would die of pain (and I have given birth 4 times..) but the gabapentin worked sooo fast. I was on a HUGE dose.. 3600mg a day, but now only take 300mg a day. Initially I was spaced out on the meds but soon adjusted (shame, as the spaced out-ness was fab!)

It isn't for life.. there are several lines of treatment so if one doens't work you keep going back. Normal painkillers don't work as it is a nerve pain.
In intractable cases there is an op.. microvascular decompression... as usually the nerve has got kinda squished..

My triggers are cold (cold wind especially) and sometimes being unwell . I still get bouts, hence long term meds, but they are brief and a quick ramping up of meds sorts it. The side affects listed on my meds scared me but actually it was ok... and the pain is GONE.

For many people it goes away and never returns at all... and prompt treatment really helps so please DO try the meds!

:)

Highlander's right, you need to go and see your GP and ask for a neurology referal. Do you have other symptoms such as pins and needles in your feet/legs? Burning/warm sensation elsewhere? Fatigue?

Thanks for all the replies. I've got no other symptoms, I think, although I am very tired as a result of having an amazing non-sleeping baby! I'm a little bit scared of the Tegretol because the side effects sound rubbish and I can't do with being sick/spaced out with three children. I think the doctor is almost using the Tegretol as a diagnosing thing - if it works next time there's a flare-up, then it must be trigeminal neuralgia. I'm also a bit worried about taking something for ever, tbh. Are there ways of managing it - avoiding certain foods or natural stuff thats worked for anyone? Have tried googling but, like the cranial osteopathy suggestion, for everyone who says "do this, it's fab" theres someone else who says "don't bother, it's crap"!

I had this a couple of years ago. My dentist referred me to the hospital and I wasn't given a prescription. It's important that you find out what the cause is, I wouldn't rush to take medication, especially if it left me spaced out. Accupuncture might help though.

if it is TN... you will have no choice but to take meds. It used to be called the suicide disease for a good reason... it is said to be the most painful condition known to mankind. So while I'm usually polite and quiet on MN for once I'm being bolshy.. if it is TN you WILL need medication and all the natural stuff in the world will NOT fix it.

I tried (acupuncture in my case) frankly I was in so much pain that I would have drunk liquid poo if would have taken away the pain but needless to say it didn't help.

I'm NOT a fan of meds either, but again if it is TN then chances are you WILL need them and you really don't want it to get worse. Tegretol is a first line anticonvulsant which is effective in TN because it suppresses nerve activity. It has a list of side effects but that doesn't mean you will experience them! I'm on Gabapentin for my TN and when I googled it I read horror stories of people who gained masses of weight bla bla couldn't function bla bla. In the event, pain control was my priority but after two years on the meds I'm still a size 8 and function perfectly well......

It might be worth looking at the TN society www.tna.org.uk/
to read up a bit . ...

I was diagnosed after probably a couple of years of pain. My GP was adamant I had sinus trouble. A fab locum diagnosed me and put me on tegretol, bloody miracle (and I had no side effects fwiw)....I had to stop taking it after a yr as I was pg and have only had maybe a couple of flare ups in the last 7 years, after having many, many episodes before the diagnosis.

No one ever mentioned seeing a neurologist to me. Oh and btw the doctor told me that I'd know if it was TN if the tegretol worked. Let's just say that half a tab later, I managed to sleep for the first time in days. Sympathy to you, it is a hell of a problem to have....SO much more horrendous that childbirth or any other pain I;ve experienced