Anyone have or know anyone with Trigeminal Neuralgia?

[MistressMary]

Anyone have or know anyone with Trigeminal Neuralgia?

[alibubbles]

Message withdrawn

[MistressMary]

Hello there yes my mum has suffered with it as long as I can remember.
She started with those tablets and then they became innaffective. She then tried Acupunture which helped enormously, then that stopped working too.
She had an operation last year, which removed the problem and was prescribed a short course of tablets, which she should have ceased taking easily by now.
However it is becoming painful again.
I really thought the operation was a success and it was compared to how she was before. She was in agony and reduced to tears often.
Not like my mum at all.
But now it is returning. She has seen a specialist again and he has advised that she has an injection which will deaden the affected side of her face. she has to have these injections every 18mths or so.
One side effect is that she could go deaf in one ear. Very small chance of that, but has to be considered nontheless.

I just hate seeing it return and worry.
Do you suffer now alibubbles?
I also have a cousin who has it too, and think that was caused through anti Ds.
It's not genetic is it?

Sorry waffling on, just concerned.

[Miaou]

My granny has had it for over 30 years now - she is in her late 80s. I'm sorry to say that over the years she has tried everything (including chinese herbal cures and acupuncture), but nothing has helped significantly.

She is one of those people who is permanently cheerful but it does get her down. She avoids certain foods that make it worse, but other than that nothing works for her.

Sorry I can't say anything more positive about it or her experiences .

[Caravaggio]

I had it after the birth of my second daughter at 26. It was absolutely agonising - far far worse than childbirth. I was on tegretol (carbemazepine) for over a year and it went away completely after that. For years I lived in dread of it coming back - every twinge or cold wind would start me worrying.

I was told that it was a very rare in condition in a young woman and was probably due to a combination of pregnancy/childbirth/stress.

I went on to have three more children and have also had my wisdom teeth out and touch everything going have had no further problems.

[Caravaggio]

I am/was ggglimpopo by the way. Fancied a change

[Weatherwax]

i had this at the end of last year. It is really nasty! I was given large doses of steroids to take in orange juice and some tablets (Carbamazepine sounds vaguely familiar but I cant be sure). Because things got a lot better after the steroids it was decided that this was part of my MS. May come back again but now they know how to treat it etc etc. I did have an MRI scan earlier this year because they wanted to check my brain out and there could have been something on the nerve that caused this and one other thing I cant remember, but it was the MS. I still have my hats at the ready if it does come back. Sympathies to all who are suffering

[Weatherwax]

I'm a thread killer again oh dear.

MistressMary I was really worried about the request you put out and hope we have not scared you. I'm very open about my MS diagnosis because I am well and I know how bad the reactions were of the people around me.

[Listmaker]

My Mum had this and it was awful. She was given some tablets that were actually for epilepsy and as a side effect they cure this. It was a few years ago and she can't remember the name of the drug but a Dr might know? It worked a treat for her.

[MistressMary]

No don't worry weatehrwax, you haven't scared me just higlighted the problem of this disorder.
It is a truly nasty thing.
I am greatful for all repsonses.

[Weatherwax]

Good