Trigeminal neuralgia - advice please
Discussion
Although I haven't yet spoken with the doctor yet (tomorrow if I can get an appointment), my symptoms suggest I've been suffering from Trigeminal neuralgia for a least 10 days now. Incredible pain across my upper and lower jaw bone on one side of my face along with the occasional headache when really bad.
Other than strong painkillers, such as Carbamazepine (Tegretol, Curatil), are there any pieces of advice that can either reduce or fully make this go away?
TIA
MC
Other than strong painkillers, such as Carbamazepine (Tegretol, Curatil), are there any pieces of advice that can either reduce or fully make this go away?
TIA
MC
Retired dentist here. Do you have the classic symptoms of TN, a trigger point, pain that’s very intense but short duration, like being stabbed with a red hot needle?
Carbamazepine is the most effective treatment, it’s not really a painkiller but that’s pedantic!
The dose will have to be adjusted slowly upwards until the TN settles down, then ideally slowly tapered back down again. There are quite a few side effects when you up the dose, it’s not fun, but I’ve seen people nearly driven to suicide by TN, so hang in there.
If you’re anywhere near a dental hospital with an oral medicine department that would be the best place to get treated.
Carbamazepine is the most effective treatment, it’s not really a painkiller but that’s pedantic!
The dose will have to be adjusted slowly upwards until the TN settles down, then ideally slowly tapered back down again. There are quite a few side effects when you up the dose, it’s not fun, but I’ve seen people nearly driven to suicide by TN, so hang in there.
If you’re anywhere near a dental hospital with an oral medicine department that would be the best place to get treated.
Thank you GordonL.
Symptoms for around the last 10 days are:
Constant dull ache across upper and lower teeth/jaw line on just one side of face.
Randomly, about 3-5 times a day this escalates to excruciating pain either in upper or lower or both jawlines, almost like my teeth are being pulled out without anesthetic. Electric shocks, really painful. Along with a dull headache. At its worst my teeth are really sensitive and will hurt like hell, even just breathing in air sets them off.
I've taken paracetamol and/or ibrobrufen that I think has helped just a touch.
I'm also triying some jaw/face exercises which I think is helping just a touch.
Symptoms for around the last 10 days are:
Constant dull ache across upper and lower teeth/jaw line on just one side of face.
Randomly, about 3-5 times a day this escalates to excruciating pain either in upper or lower or both jawlines, almost like my teeth are being pulled out without anesthetic. Electric shocks, really painful. Along with a dull headache. At its worst my teeth are really sensitive and will hurt like hell, even just breathing in air sets them off.
I've taken paracetamol and/or ibrobrufen that I think has helped just a touch.
I'm also triying some jaw/face exercises which I think is helping just a touch.
Edited by technicalfoamboy on Friday 6th June 08:27
Just back from the doctors (they saw me within one hour of making the online request!) and I've been prescribed Carbamazepine 2 x 100mg tablets per day. See how I get on for the next 2 weeks and can either up the does or can stop taking if symptoms go away.
I really hope I get this sorted soon, I cannot cope!
I really hope I get this sorted soon, I cannot cope!
I have just been through a similar experience. It is good that your Dentist and Doctor were on the case quickly. Mine started the day following a Shingles vaccination on the left hand side of my head. Which coincidentally was the same side as the Shingles vax. Prior to this I had quick trip to Dentist to check as pain was close to previous dental procedure to eliminate as Dr was not available immediately. Dentist did not believe tooth related, Eventually managed to see Dr who prescribed Carbamazepine. Same dose as you. I found Carbamazepine difficult to deal with - some additional side effects similar to those in the leaflet enclosed with the drug. As a result I was anxious to get off as quickly as possible. In the end Dr gave second dose to unwind the Carbamazepine over time. As coming off quickly is not a good idea. .
Dr suggested hands on physio although I would have had to wait min 12 weeks for NHS physio so went private. Really important that the Physio understands TNA. I am now 3 weeks into physio programme and it is improving but I am not completely there yet.
I hope this helps you.
Dr suggested hands on physio although I would have had to wait min 12 weeks for NHS physio so went private. Really important that the Physio understands TNA. I am now 3 weeks into physio programme and it is improving but I am not completely there yet.
I hope this helps you.
Mrs H was diagnosed with this a long while ago and has used Tegretol with some effect, but the side effects are severe if she is on a higher dose.
Only good news I can offer is that is isn’t constant. She can go for long periods with little or no symptoms but of her collection of medical conditions it is probably the one she would be keenest to get rid of if a magic wand was offered.
Only good news I can offer is that is isn’t constant. She can go for long periods with little or no symptoms but of her collection of medical conditions it is probably the one she would be keenest to get rid of if a magic wand was offered.
I've had it 7/8 years, spent thousands chasing a fix, mri / ct scans, insisted on healthy teeth being removed, never resolved it. First few years worst now it's a flare ups every now and then but intense last a few weeks. I was perscribed gabapentin but it's strong drug. I do find medical cannabis helps alot, particularly sativa dominant strains, I'm not a pot head, I get it as an oil perscribed, lots of clinics around these days to get it legally perscribed, it's the most effective thing I've found with least side effects, gabapentin works but I felt out of it on it. Long term pain conditions can take you dark places mentally so I was willing to try anything.
Try and find a facial pain dentist, as they good at ruling out dental issues vs it actually being TN. I was seeing Dr Leigh Elias she professor at King's College, works at a few practices around London.
Good luck
Try and find a facial pain dentist, as they good at ruling out dental issues vs it actually being TN. I was seeing Dr Leigh Elias she professor at King's College, works at a few practices around London.
Good luck
Edited by PostHeads123 on Saturday 7th June 16:08
I suffered this for a year about 30 years ago. Had a couple of scans and xrays at the time but no resolution.
Felt like toothache in all of the teeth on one side at once. Would last for 4-8 hours most times and pain killers would do nothing at the time.
I found mine was triggered soon after blowing my nose, especially after a shower. Or sneezing and trying to hold it in.
Within an hour, i would start to get symptoms.
Sounds simple but I just stopped blowing my nose, for about 15 years in the end. Was reallly annoying having to just keep wiping, especially with hay fever. But i got used to it.
Seem to be fine now and can blow nose normally, but not hard, and very occasionally i feel it start after a shower, or if i have a stuffy cold.
Blocked nose tablets help keep it away those times.
The best over counter painkillers i have found for that, and for mild migraine, are Solpadeine Max, big red things.
Felt like toothache in all of the teeth on one side at once. Would last for 4-8 hours most times and pain killers would do nothing at the time.
I found mine was triggered soon after blowing my nose, especially after a shower. Or sneezing and trying to hold it in.
Within an hour, i would start to get symptoms.
Sounds simple but I just stopped blowing my nose, for about 15 years in the end. Was reallly annoying having to just keep wiping, especially with hay fever. But i got used to it.
Seem to be fine now and can blow nose normally, but not hard, and very occasionally i feel it start after a shower, or if i have a stuffy cold.
Blocked nose tablets help keep it away those times.
The best over counter painkillers i have found for that, and for mild migraine, are Solpadeine Max, big red things.
Edited by cpszx on Saturday 7th June 16:44
Edited by cpszx on Saturday 7th June 16:45
Hi,
I really do hope that you are not suffering from TN, and it's probably a bit early yet for any confirmation of this.
As I mentioned in a previous post on here approx 2 years ago, my wife has suffered from this for 14 years and I'm not exaggerating when I say that it has had an horrendous effect on our lives. She is not able to work at all, unable to drive for months on end, and pretty much missed out on her daughters teenage years. She has had numerous operations and has been under at least 7 Consultants.
Pain killers do not work, and for most of those 14 years, GPs and Consultants have given her the medication that we have asked for. Absolutely no disrespect to GPs, but they openly admit that it's beyond them. Any medications might slightly mask the pains, but they also take away her ability to think or do anything.
Probably the best descriptions of the pains are either having live electric wires shoved into her face, or having a large fish hook through her face and being pulled along.
Her current Consultant Neurosurgeon is Mr Patel in Bristol and he is the best so far.
All the best.
I really do hope that you are not suffering from TN, and it's probably a bit early yet for any confirmation of this.
As I mentioned in a previous post on here approx 2 years ago, my wife has suffered from this for 14 years and I'm not exaggerating when I say that it has had an horrendous effect on our lives. She is not able to work at all, unable to drive for months on end, and pretty much missed out on her daughters teenage years. She has had numerous operations and has been under at least 7 Consultants.
Pain killers do not work, and for most of those 14 years, GPs and Consultants have given her the medication that we have asked for. Absolutely no disrespect to GPs, but they openly admit that it's beyond them. Any medications might slightly mask the pains, but they also take away her ability to think or do anything.
Probably the best descriptions of the pains are either having live electric wires shoved into her face, or having a large fish hook through her face and being pulled along.
Her current Consultant Neurosurgeon is Mr Patel in Bristol and he is the best so far.
All the best.
Thank you so much everyone for your kind words and advice.
I had a really bad night last night, both my upper and lower left set of teeth felt like they were being pulled out without anesthetic again, and subsequently I had no sleep at all so I watched tv downstairs to not keep the wife awake.
Today much better it's only really been my lower jawline that's throbbing constantly with the occasional electric shock lasting 2-3 minutes every hour or so. I've also had a tinge of a headache that won't go away but that's the least of my worries.
I'm off to bed now, wish me luck!
I had a really bad night last night, both my upper and lower left set of teeth felt like they were being pulled out without anesthetic again, and subsequently I had no sleep at all so I watched tv downstairs to not keep the wife awake.
Today much better it's only really been my lower jawline that's throbbing constantly with the occasional electric shock lasting 2-3 minutes every hour or so. I've also had a tinge of a headache that won't go away but that's the least of my worries.
I'm off to bed now, wish me luck!
Edited by technicalfoamboy on Saturday 7th June 23:49
Hi Tech.
It doesn't sound good.
With regards to my wife, it started over a couple of weeks when she was waking up with an aching / slightly painful jaw and then on one day (the Thursday before the royal wedding of William and Kate) it hit with a vengeance. Rushed her to A +E where a young Dr wanted to send her home with Paracetamol! I argued this and she was then kept in. Over the next couple of hours she went downhill fast, being given two doses of morphine and still screaming in pain. An enduring memory was seeing a Dr standing over her, visibly shaking, and protesting that they couldn't give her any more! She ended up staying in for 7 days and our lives haven't been the same since.
I've not written this to scare you (sorry if it has), but if there are things that we have learnt that can be of help it can only be a good thing. Hopefully things don't go this far.
If it really is that painful consider the A +E. Whilst this route is abused by many, it will speed things up.
If you see the GP and at some stage are forwarded to a Consultant, as we understand it, you can insist upon seeing any particular Consultant around the country. Do your homework here and there are quite a few positive feedbacks on the Facebook forum.
If referred to a Consultant, it may take many months, if not a year to see them. I'm not saying this is right, but most do private work as well, and if you pay for the initial consultation (£300 to £400), you will be seen within two to three weeks, and can then usually move sideways onto the NHS ladder.
We found that Consultants specialising in Pain Management were not getting to the core issue and were like a sticking plaster.
Be prepared to move Consultants. There are new procedures being developed all the time and we have been given conflicting and inaccurate information.
Good luck!
It doesn't sound good.
With regards to my wife, it started over a couple of weeks when she was waking up with an aching / slightly painful jaw and then on one day (the Thursday before the royal wedding of William and Kate) it hit with a vengeance. Rushed her to A +E where a young Dr wanted to send her home with Paracetamol! I argued this and she was then kept in. Over the next couple of hours she went downhill fast, being given two doses of morphine and still screaming in pain. An enduring memory was seeing a Dr standing over her, visibly shaking, and protesting that they couldn't give her any more! She ended up staying in for 7 days and our lives haven't been the same since.
I've not written this to scare you (sorry if it has), but if there are things that we have learnt that can be of help it can only be a good thing. Hopefully things don't go this far.
If it really is that painful consider the A +E. Whilst this route is abused by many, it will speed things up.
If you see the GP and at some stage are forwarded to a Consultant, as we understand it, you can insist upon seeing any particular Consultant around the country. Do your homework here and there are quite a few positive feedbacks on the Facebook forum.
If referred to a Consultant, it may take many months, if not a year to see them. I'm not saying this is right, but most do private work as well, and if you pay for the initial consultation (£300 to £400), you will be seen within two to three weeks, and can then usually move sideways onto the NHS ladder.
We found that Consultants specialising in Pain Management were not getting to the core issue and were like a sticking plaster.
Be prepared to move Consultants. There are new procedures being developed all the time and we have been given conflicting and inaccurate information.
Good luck!
Hello everyone and thanks again for your support.
Good news! Kind of....
Had to go to A&E 0600 on Sunday morning as the lower jaw pain was horrific, no sleep whatsoever.
After taking bloods and a good check over by a Maxillofacial doctor it turns out I have an infected molar and jaw!
Gave some codine and numbing gel that I can apply onto the gum area.
Went off to an emergency dentist located in Milton Keynes Sunday afternoon and they confirmed via xray that my molar #7 was potentially cracked but definitely infected and suggested a root canal. If that identified a cracked tooth or if the root canal didn't resolve my issue then an extraction was recommended.
I have my appointment today at 1200.
What a whirlwind 3 day's I've had and I'm so sorry to hear about folk who have been affected by TN, it sounds horrific.
I'll let you know how today goes later.
Good news! Kind of....
Had to go to A&E 0600 on Sunday morning as the lower jaw pain was horrific, no sleep whatsoever.
After taking bloods and a good check over by a Maxillofacial doctor it turns out I have an infected molar and jaw!
Gave some codine and numbing gel that I can apply onto the gum area.
Went off to an emergency dentist located in Milton Keynes Sunday afternoon and they confirmed via xray that my molar #7 was potentially cracked but definitely infected and suggested a root canal. If that identified a cracked tooth or if the root canal didn't resolve my issue then an extraction was recommended.
I have my appointment today at 1200.
What a whirlwind 3 day's I've had and I'm so sorry to hear about folk who have been affected by TN, it sounds horrific.
I'll let you know how today goes later.
GordonL said:
Probably worth adding a wee postscript to this, TN is pretty rare, fortunately, it also doesn t usually cause continuous pain.
Old fashioned toothache is much more likely in most cases of prolonged facial pain.
Absolutely. That was one of the first questions the doctor asked and was suprised that I answered my pain has been constant.Old fashioned toothache is much more likely in most cases of prolonged facial pain.
TN, apprently, isn't constant. But, looking at google etc I had the symptoms but the duration of the pain was key to my personal diagnosis of tooth and jaw infection.
I hope my experiences does help others.
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