Trigeminal Neuralgia - only for those suffering or related.
Discussion
I had it for 13 years - it’s gone. Over the years I've been on many different drugs; gabapentin, carbamazepine, lamotrigine, naproxen etc.. I’ve tried acupuncture, diet changes, eating ginger every morning.
I met a new consultant this summer. I had a kinda annual review appointment. I walked in. He said “I’ve been through all your scans and can see the problem clearly in your 2019 scan”. I thought that makes a change. He showed me onscreen a nerve that was rubbing against an artery. “I can fix that, I’ll put you on the list for MVD surgery”. “We’ll put a kevlar separator around the nerve and another round the artery”. I was thinking maybe 2025 with the way NHS waiting lists are. I got the call quickly.
On the day, the anesthetic was so quick, out for 6 hours whilst he fiddled with an artery in my brain. When they woke me up in recovery I knew I was cured. I had never taken the full daily allowance for any of the drugs so was never without the pain, had it every day but kept it manageable. All of a sudden nothing!
I have a little patchy numbness in my face, forehead and the top of my head. No issues anywhere else. If this lasts my lifetime I don’t care.
I’m delighted to be pain free. I hope it lasts. If anyone wants more info, I’d be delighted to help them out, just send me a private message.
I met a new consultant this summer. I had a kinda annual review appointment. I walked in. He said “I’ve been through all your scans and can see the problem clearly in your 2019 scan”. I thought that makes a change. He showed me onscreen a nerve that was rubbing against an artery. “I can fix that, I’ll put you on the list for MVD surgery”. “We’ll put a kevlar separator around the nerve and another round the artery”. I was thinking maybe 2025 with the way NHS waiting lists are. I got the call quickly.
On the day, the anesthetic was so quick, out for 6 hours whilst he fiddled with an artery in my brain. When they woke me up in recovery I knew I was cured. I had never taken the full daily allowance for any of the drugs so was never without the pain, had it every day but kept it manageable. All of a sudden nothing!
I have a little patchy numbness in my face, forehead and the top of my head. No issues anywhere else. If this lasts my lifetime I don’t care.
I’m delighted to be pain free. I hope it lasts. If anyone wants more info, I’d be delighted to help them out, just send me a private message.
Used to suffer in the late 80s into the 90s with this. I had no idea what it was, I used to call it my 'pain in the face (not arse!). Have posted about it years ago on here. It used to come on gradually during the day, the pain getting worse as the day went on. I still recall going to lots of motor racing and driving back home the pain would just get worse. I'd been to the docs and was prescribed painkillers but nothing took the edge off. Tramadol I've been given twice in my life to date and 'pain' is almost preferable to 'being away with the fairies'.
One day I was at my aunt's and began to clutch the right side of my face and she asked what was the matter? I told her it was just another of my headaches in my face to be polite.
She looked at me and said: 'My god, you've got Gramp's old problem!'
I said 'What are you talking about?'
She said 'Can't you remember when you were a kid and Gramp used to fall to his knees clutching his face in pain?'
I did sort of recall it but thought it was down to the shrapnel lodged in his back from the war.
Then she said two words I'd never heard before: 'Tic Douloureux'.
'Tick what?' I replied.
Another doctor I saw was convinced it was simply migraines. It wasn't until my dentist later explained what it was when I mentioned the two strange words during a dental check up and examination. He explained that Tic Doloureux was another name for Trigeminal Neuralgia, a problem with the trig. nerve that some people suffer from. Again, it was put up with it or painkillers. I, like you, continued to put up with it for some years, not as long as you though.
Then luck or as I call it fate intervened. Laugh at this if you wish.
I had been out for the day at Castle Combe, again the 1990s, and stopped off in Swindon on the way home to get something in the town centre. As I was walking back to the car park I noted a gypsy stopping passers by trying to flog them something from her basket. I tried my best to dodge her, but she accosted me with 'Buy some lucky heather sir, I can see pain in your face, you are troubled, you must buy some lucky heather.'
F hell! I was bloody flabbergasted to be honest. She tugged my sleeve indicating I would regret not buying.
I'm a bloody tight sod and I mean bloody tight! She pushed the sprig of heather into my hand and I capitulated and gave her a quid. I felt so f
king annoyed I'd given in, this tiny piece of heather is some wrapped silver foil around the stems. I shoved it in my pocket and got to the car, still livid I'd paid her.
I got home, shoved it on the window sill in our hallway. My wife had been around her sister's and when she came in she shouts 'What's this on the sill?' I said 'Oh it's nothing, just some lucky heather.'
She then said 'Christ, Dan, it stinks of BO.... hang on, no it doesn't, omg, it stinks of 'stale pee', please get rid of it!'
So I went to the hall picked it up and whiffed it. Bloody hell, it did stink! I went out to the bins and lifted the lid to throw it in. Why, I don't know, I couldn't chuck it. So I opened the garage door and hid it on the top shelf where all my car tools were.
Laugh if you must. The following weekend I was at Silverstone ...bloody hell, where's my face pain gone. To this day, many years later it never returned. A mate asked me the other day who is a similar age (eighth decade) what meds I'm on. He pops loads of pills daily. I was truthful: 'I don't take any, although I just finished a course of antibiotics for an infection, other than that nothing. Although I might take an aspirin for a headache, but to be honest I can't recall my last headache.'
One day I was at my aunt's and began to clutch the right side of my face and she asked what was the matter? I told her it was just another of my headaches in my face to be polite.
She looked at me and said: 'My god, you've got Gramp's old problem!'
I said 'What are you talking about?'
She said 'Can't you remember when you were a kid and Gramp used to fall to his knees clutching his face in pain?'
I did sort of recall it but thought it was down to the shrapnel lodged in his back from the war.
Then she said two words I'd never heard before: 'Tic Douloureux'.
'Tick what?' I replied.
Another doctor I saw was convinced it was simply migraines. It wasn't until my dentist later explained what it was when I mentioned the two strange words during a dental check up and examination. He explained that Tic Doloureux was another name for Trigeminal Neuralgia, a problem with the trig. nerve that some people suffer from. Again, it was put up with it or painkillers. I, like you, continued to put up with it for some years, not as long as you though.
Then luck or as I call it fate intervened. Laugh at this if you wish.
I had been out for the day at Castle Combe, again the 1990s, and stopped off in Swindon on the way home to get something in the town centre. As I was walking back to the car park I noted a gypsy stopping passers by trying to flog them something from her basket. I tried my best to dodge her, but she accosted me with 'Buy some lucky heather sir, I can see pain in your face, you are troubled, you must buy some lucky heather.'
F hell! I was bloody flabbergasted to be honest. She tugged my sleeve indicating I would regret not buying.
I'm a bloody tight sod and I mean bloody tight! She pushed the sprig of heather into my hand and I capitulated and gave her a quid. I felt so f
king annoyed I'd given in, this tiny piece of heather is some wrapped silver foil around the stems. I shoved it in my pocket and got to the car, still livid I'd paid her.I got home, shoved it on the window sill in our hallway. My wife had been around her sister's and when she came in she shouts 'What's this on the sill?' I said 'Oh it's nothing, just some lucky heather.'
She then said 'Christ, Dan, it stinks of BO.... hang on, no it doesn't, omg, it stinks of 'stale pee', please get rid of it!'
So I went to the hall picked it up and whiffed it. Bloody hell, it did stink! I went out to the bins and lifted the lid to throw it in. Why, I don't know, I couldn't chuck it. So I opened the garage door and hid it on the top shelf where all my car tools were.
Laugh if you must. The following weekend I was at Silverstone ...bloody hell, where's my face pain gone. To this day, many years later it never returned. A mate asked me the other day who is a similar age (eighth decade) what meds I'm on. He pops loads of pills daily. I was truthful: 'I don't take any, although I just finished a course of antibiotics for an infection, other than that nothing. Although I might take an aspirin for a headache, but to be honest I can't recall my last headache.'
jimmydash said:
I had it for 13 years - it’s gone. Over the years I've been on many different drugs; gabapentin, carbamazepine, lamotrigine, naproxen etc.. I’ve tried acupuncture, diet changes, eating ginger every morning.
I met a new consultant this summer. I had a kinda annual review appointment. I walked in. He said “I’ve been through all your scans and can see the problem clearly in your 2019 scan”. I thought that makes a change. He showed me onscreen a nerve that was rubbing against an artery. “I can fix that, I’ll put you on the list for MVD surgery”. “We’ll put a kevlar separator around the nerve and another round the artery”. I was thinking maybe 2025 with the way NHS waiting lists are. I got the call quickly.
On the day, the anesthetic was so quick, out for 6 hours whilst he fiddled with an artery in my brain. When they woke me up in recovery I knew I was cured. I had never taken the full daily allowance for any of the drugs so was never without the pain, had it every day but kept it manageable. All of a sudden nothing!
I have a little patchy numbness in my face, forehead and the top of my head. No issues anywhere else. If this lasts my lifetime I don’t care.
I’m delighted to be pain free. I hope it lasts. If anyone wants more info, I’d be delighted to help them out, just send me a private message.
My brother had a similar op to you (drilled a hole behind his ear and went in the way. He suffered for about 4 years taking very high doses of the usual drugs. Now pain free. He’s a changed man!I met a new consultant this summer. I had a kinda annual review appointment. I walked in. He said “I’ve been through all your scans and can see the problem clearly in your 2019 scan”. I thought that makes a change. He showed me onscreen a nerve that was rubbing against an artery. “I can fix that, I’ll put you on the list for MVD surgery”. “We’ll put a kevlar separator around the nerve and another round the artery”. I was thinking maybe 2025 with the way NHS waiting lists are. I got the call quickly.
On the day, the anesthetic was so quick, out for 6 hours whilst he fiddled with an artery in my brain. When they woke me up in recovery I knew I was cured. I had never taken the full daily allowance for any of the drugs so was never without the pain, had it every day but kept it manageable. All of a sudden nothing!
I have a little patchy numbness in my face, forehead and the top of my head. No issues anywhere else. If this lasts my lifetime I don’t care.
I’m delighted to be pain free. I hope it lasts. If anyone wants more info, I’d be delighted to help them out, just send me a private message.
Wife has had it for almost 20 years.
She has had 2 x MVD procedures and is still on high doses of Gabapentin and Lamotrigine 3 times a day.
After the first procedure the pain returned within days,the second procedure lasted longer.
She is reluctant to have a third operation as each time the risks increase, currently she is giving Acupuncure a go---- it was working well until the current cold weather.
Awful illness i would not wish it on anyone
She has had 2 x MVD procedures and is still on high doses of Gabapentin and Lamotrigine 3 times a day.
After the first procedure the pain returned within days,the second procedure lasted longer.
She is reluctant to have a third operation as each time the risks increase, currently she is giving Acupuncure a go---- it was working well until the current cold weather.
Awful illness i would not wish it on anyone
My partner had this operation ten years ago after a long period of face pain. Then a few months before Christmas is started to re occur. Not thinking that it would be the trigeminal nerve again she thought it was toothache. The dentist removed two back teeth thinking it was from them. She had the operation again in January to fix the nerve pain which again was a success but unfortunately got an infection on the brain from the operation. Due to this shes had to have a shunt fitted as her body stopped getting rid of excess brain fluid. 11 months later and she's been off most of the year as they cant get the shunt working right. Complete nightmare!
Hi.
It's great news that some people can recover from this horrible illness, and I'm genuinely pleased for you if you have.
I have mentioned on here previously that my wife has had it for 12 years, and has had an MVD and later a Partial Rhizotomy which gave a little relief from the pain. She describes the pain as being like either a very large fish hook pulling in her face or live electric cables being shoved into her cheek. Those are in addition to the constant background pain.
After some gradual improvement, a few years ago she had a basic treatment with a PINS machine (small electric current through the scalp). Unfortunately, within hours she was again in a bad way and there's been a decline in health in the years since.
She has done many different types of medicine and has tried the same ones two or three times now in different concoctions. You know that you are screwed when the Dr turns his monitor around to us and then says, "Which drugs do you want to try next"?
A major negative side effect is the absolute exhaustion as a result of continually being in pain.
For those that don't know it's also known as The Suicide Illness!
The implications of this illness are that from the age of 39, she has had virtually no life at all. She is rarely able to drive (due to exhaustion), and is unable to work, even part time. Basic tasks around the house are often beyond her, and having a social life is pretty much out of the question. She missed out on most of the time that her two daughters were growing up before they left home. I don't know how she holds it together.
This isn't a moan, just an honest description.
It's great news that some people can recover from this horrible illness, and I'm genuinely pleased for you if you have.
I have mentioned on here previously that my wife has had it for 12 years, and has had an MVD and later a Partial Rhizotomy which gave a little relief from the pain. She describes the pain as being like either a very large fish hook pulling in her face or live electric cables being shoved into her cheek. Those are in addition to the constant background pain.
After some gradual improvement, a few years ago she had a basic treatment with a PINS machine (small electric current through the scalp). Unfortunately, within hours she was again in a bad way and there's been a decline in health in the years since.
She has done many different types of medicine and has tried the same ones two or three times now in different concoctions. You know that you are screwed when the Dr turns his monitor around to us and then says, "Which drugs do you want to try next"?
A major negative side effect is the absolute exhaustion as a result of continually being in pain.
For those that don't know it's also known as The Suicide Illness!
The implications of this illness are that from the age of 39, she has had virtually no life at all. She is rarely able to drive (due to exhaustion), and is unable to work, even part time. Basic tasks around the house are often beyond her, and having a social life is pretty much out of the question. She missed out on most of the time that her two daughters were growing up before they left home. I don't know how she holds it together.
This isn't a moan, just an honest description.
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