Trigeminal Neuralgia

[jimmydash]

Any other sufferers out there? I’ve had it for 11 years since I was 55. I’m on Gabapentin, it makes me feel slow, lethargic but kinda pain free. I think I need to have the Gamma knife or MVD. I’d like to hear how others are doing, what they’re thinking, what they’re taking etc etc.

[mkjess123]

Hi.

I posted the below last December when there was a thread about tooth pain.

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"This! I suffer occasionally (usually in winter) - and it is extremely painful. Caused me to give up going skiing."

I can assure you that you can think yourself lucky!

My wife has had Trigeminal Neuralgia for 11 years and it has had a terrible effect on her life and to a lesser effect both of ours.
She has had brain surgery twice, takes a daily handful of tablets (that have to be changed every few months and have their own effects) and has been told by a number of consultants that there is nothing else that can be done. She is aged 50 today.

She is in constant pain (to the facial area) ranging between moderate and severe, and for those who are not aware, painkillers don't touch it. She is unable to work, even part time, and unable to undertake tasks that people take for granted. This includes driving any more than a couple of miles, or doing anything strenuous at all.

It's commonly known as "the suicide illness".

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The first op that she had was the MVD and the second was a Partial Rhizotomy. I'm afraid that both didn't really work.

Knowing what we do now. if you are virtually pain free, but are suffering the side effects of the medication, I would settle for that. Any procedure will potentially cause more nerve damage.

Experience has taught us that you can play around with the medication, however (and this is not a criticism of GPs at all) we have found that knowledge of what drugs to take in relation to TN is quite limited. We have fought to remain under the supervision of a Consultant (currently Derriford Hospital in Plymouth).

My wife just exists each day and as touched upon above, is able to do very little. Walking up the stairs, a slight breeze on her face. or anything else can make the pain worse. There are different pains that she suffers, but the two worse ones she describes as either having live electric cables shoved into her face, or having a large fish hook through her cheek and dragging a large weight from it.

A side effect is complete exhaustion most of the time. We eventually found that when suffering constant pain, your body is wound up tightly and this results in exhaustion.

I hope you are able to find some relief.

[jimmydash]

I am truly sorry for your wife (and you). I know exactly what she's suffering from. My own diagnosis took about a year to be resolved. I was lying on an operating theatre table just about to have an apicoectomy when the consultant started asking questions (I hadn’t seen him before!). I told him I had a very high tolerance of pain, he asked how painful my condition was, I said 10/10. He said no surgery then. That was the first time any of the 3 or 4 doctors and dentists I saw over about a year mentioned TN. Before Gabapentin, the pain was so severe I usually ended up on the floor unable to move, speak or do anything for up to 15 minutes. The “mental scars” of that intense pain meant I was terrified of any repeat and my blood pressure would go through the roof when the slightest twinge occurred, I still have that. My consultant is -

https://www.spirehealthcare.com/consultant-profile...

Maybe another opinion would yield another approach. I hardly ever pray or ask for help from “above” but I will for your wife.

[mkjess123]

Thanks for your kind words. It sounds like you have been through the mill and it certainly is a horrible condition.

In a nut shell;

It started with my wife waking up in the mornings feeling like she had been grinding her teeth during the night, and then after about 2 or 3 weeks, one day it hit with a vengeance. Off to A and E and then a week in hospital. It took about 6 months after this to get a proper diagnosis. The first consultant was very unprofessional and very dismissive (we later found out that he'd had some form of break down). A friend of a friend was a GP, who'd only ever seen one other patient with the condition, recommended Southampton Hospital.

We were informed that approx 17 of the 30 odd Consultant Neurosurgeons in the country were based there. Two lots of operations and 2 Consultants later and no real progress. Care at the hospital was really good.

Thought we would try elsewhere so went to Plymouth (we live in East Devon). Saw another Consultant there who wanted to try a PENS procedure. We were told it might help but probably wouldn't. It actually negatively put my wife back 4 or 5 years with a massive increase in pain etc.

Saw another Consultant there (Mr Davies) who didn't do any procedures but was the first to understand the pain management side. He has now retired and she is due an appointment with his colleague (Mr Green).

It's really a case of managing the pain and getting through each day.

Thanks again for your kind words, and we understand and can relate to everything that you have said.

Good luck!

[rob_golfgti]

I don’t know much about the procedure but my Mum I think was the first or one of the first to have the operation about 20 years ago. It was a success and only recently had a pain back but I think it died down again.

[dandarez]

I may have answered in some old 'tooth' threads. TN is a dreadful pain and condition.

In the 80s I used to suffer from an increasing as the day went on pain in my face. For example I spent a lot of time going to motor races and the pain would be gradual until driving home it got worse and worse. Just like my whole face was one big ache and getting electric face shocks.

I have to say mine was bearable as I seem to have a high pain tolerance but still needed painkillers and I've always hated meds, predominantly because of side-effects. Some people can pop pills others can't. I was put on Tramadol once (not for TN) but ended up away with the fairies for the first time in my life (and I'm a 60s teen!). I think I managed half a doz Tram, then gave them to a mate (I know, I know) who took them after hip removal - his reaction was simply to sleep, that was his side-effect.

I digress.
GP was pretty hopeless and I continued putting up with it (I reiterate my TN was not in the same league as above, nothing like).
One day I was at my aunts and she asked why I was holding my face? I mentioned the TN.
She said 'OMG, hope it doesn't run in the family.'
I said 'What runs in the family?'
She said you remember Gramp when he used to drop to his knees in agony when you were little?'
I said 'Yes, I do recall - that was something to do with his shrapnel war injuries wasn't it?'
'No' she said, 'he had Tic Douloureux.'

I was lost until she said 'It's the same thing, Tic Douloureux 'is' Trigeminal Neuralgia!'

I know this sounds f crazy, but fortunately it got no worse, just a constant aching face worsening as the day got long.
I even had a chronic pain wisdom tooth drilled out (which needed to be removed anyway) that my dentist thought might be interfering with the Trig nerve.
Oh, I was meant to have the wisdom out in hospital, but a stroke of luck (fate) a specialist dentist whose patient had not turned up, looked at my x-rays and said she'd be prepared to remove it (by drilling it out!) if I was ok with it. Oh boy yes, who wants to go to hospital and have a wisdom out?

I don't know if this is fate or coincidence. Well, I do, it's coincidence but I'm grateful!
In the early 90s I was walking through Swindon and noted a gypsy seller ahead so I veered away from her. No luck, she cornered me and said 'You look like you have suffered, I can see the pain in your face. Buy some lucky heather.'
Christ! Of course, I took a sprig - in return I gave her a new shiny one pound coin.

When I got home my wife said 'what's this?' as I she took the shopping I'd got out of the bags.
It was the sprig of heather wrapped in silver foil.
She went to smell it and said 'Bloody hell, it stinks of BO! Go and bin it.'

I went out to the bin but instead of binning it, I hesitated (what a wimp I am!) I went in the garage and put it on the top of a shelf with a load of car bits.

About a couple weeks on, I'd forgotten all about it.
Then I realised something - my face pain disappeared totally. Ah superstitious nonsense.

Again, my sincere thoughts to anyone who has TN (or as once more commonly known - Tic Douloureux).