My case is different perhaps. I had no pain going to the dentist. But the dentist caused bad pain. And it only got worse from there…long horrible story. No compressions via MRI and MRA. My dx : ATN.
Does make me wonder whether the medical profession really knows much about TN and its varieties (together with facial pain, etc) or whether they are still learning. My MRI was clear and I have TN2 type pain in cheek, under eye and in teeth, yet my consultant told me I don't have TN mainly because nothing showed on the MRI. He diagnosed me with neuropathic facial pain and said the treatment was the same ie Pregabalin and the like - which incidentally isn't doing a great deal with the pain at the moment. :(
Yes, yours is atypical. Because it's not strictly TN and is, like Livinghope's, actually Neuropathic Facial Pain, I suppose that pretty much gives it free rein to be caused by everything and anything! Really, when you think about it, Classic TN is the pain caused in the Trigeminal Nerve by a very specific thing (vascular compression), it also follows fairly strict symptoms, albeit with LOTS of variations. But ATN, i.e. all the other cases of Neuropathic Facial Pain, is really all the other trigeminal nerve damage and disorders lumped in together, probably because they haven't got classifications for them all yet. The horrible thing about ATN is it's not really an official disorder, and we all know what doctors are like with things that don't have 'real' names. Plus, of course, the symptoms are so variable they must hate that. No wonder it's so tough for people to get a diagnosis!
Nomad said:
My case is different perhaps. I had no pain going to the dentist. But the dentist caused bad pain. And it only got worse from there...long horrible story. No compressions via MRI and MRA. My dx : ATN.
Hi Livinginhope, sorry, I gave you the wrong name up above; just realised you are IN hope, not a living hope! Your consultant is actually correct. Technically speaking, you don't have TN, you have Neuropathic Facial Pain, as does everyone with ATN. Some doctors and web sites are guilty of using TN when it's not strictly correct - right down to TN2 and ATN becoming popularised as terms. Personally, I don't think this does anyone any favours. While you have a diagnosis, it's actually the wrong one and I think people get upset that the MVD op, for example, is refused to them, but it's actually useless to them, and dangerous. I think it also confuses them when their symptoms don't conform, or the medications don't work. I think it would be better if docs stuck to the right name and so kept the options more open for them. That way they might get to the bottom of causes and treatment better, instead of writing it off as a sort of 'not classic TN'.
I don't think they know much about TN or Neuropathic Facial Pain simply because they're so complicated, with so many variables. Plus, of course, unlike a leg, you can't just open it up and do a bit of exploratory surgery! It's also a rare disease, which doesn't help. Until someone works out a way of dealing with a damaged nervous system, we're all in the same boat!
Livinginhope said:
Does make me wonder whether the medical profession really knows much about TN and its varieties (together with facial pain, etc) or whether they are still learning. My MRI was clear and I have TN2 type pain in cheek, under eye and in teeth, yet my consultant told me I don't have TN mainly because nothing showed on the MRI. He diagnosed me with neuropathic facial pain and said the treatment was the same ie Pregabalin and the like - which incidentally isn't doing a great deal with the pain at the moment. :(
I think these last few comments are hitting a target not discussed on this site. We all take it as a given, in light of the statements of some doctors and their popularizers on this group, that the phrase "atypical facial pain" (a neurological pain) is often a wrong diagnosis (are there cases in which it is the right diagnosis?) and in those cases should be called atypical trigeminal neuralgia, as if this were a way to save the stigma attaching to ATP. i.e, that it is an affliction of the mentally disturbed. The thinking is, we really don't know the cause, so let's call it something nonprejudicial -- EVEN IF THE MOST EFFECTIVE MODES OF TREATMENT ARE ESSENTIAL THE SAME; in my case, amitriptyline +.
I feel that these efforts to destigmatize facial pain may fall short of convincing. We don't make it so because we want it to be so. In fact, the flight to ATN can be seen as stigmatizing mental or emotional injury and so work to put those accurately diagnosed as having AFP into an even darker light. I will now publish a message I sent to Stef, who wrote the original piece on this site touting the new lingo some years ago. I have not gotten a reply (maybe Stef gets to the site rarely these days), so, after 2 attempts, I will publish it all and hope for a substantive dialogue. Look for the title "A Philosophy of Atypical Pain." My focus is on clarifying meanings and implications as oppose to giving advice or asking for help. A little wonky, but, i think, important.
Woman with the electric teeth said:
Hi Livinginhope, sorry, I gave you the wrong name up above; just realised you are IN hope, not a living hope! Your consultant is actually correct. Technically speaking, you don't have TN, you have Neuropathic Facial Pain, as does everyone with ATN. Some doctors and web sites are guilty of using TN when it's not strictly correct - right down to TN2 and ATN becoming popularised as terms. Personally, I don't think this does anyone any favours. While you have a diagnosis, it's actually the wrong one and I think people get upset that the MVD op, for example, is refused to them, but it's actually useless to them, and dangerous. I think it also confuses them when their symptoms don't conform, or the medications don't work. I think it would be better if docs stuck to the right name and so kept the options more open for them. That way they might get to the bottom of causes and treatment better, instead of writing it off as a sort of 'not classic TN'.
I don't think they know much about TN or Neuropathic Facial Pain simply because they're so complicated, with so many variables. Plus, of course, unlike a leg, you can't just open it up and do a bit of exploratory surgery! It's also a rare disease, which doesn't help. Until someone works out a way of dealing with a damaged nervous system, we're all in the same boat!
Livinginhope said:Does make me wonder whether the medical profession really knows much about TN and its varieties (together with facial pain, etc) or whether they are still learning. My MRI was clear and I have TN2 type pain in cheek, under eye and in teeth, yet my consultant told me I don't have TN mainly because nothing showed on the MRI. He diagnosed me with neuropathic facial pain and said the treatment was the same ie Pregabalin and the like - which incidentally isn't doing a great deal with the pain at the moment. :(
thehoward said:
I think these last few comments are hitting a target not discussed on this site. We all take it as a given, in light of the statements of some doctors and their popularizers on this group, that the phrase "atypical facial pain" (a neurological pain) is often a wrong diagnosis (begging the question: are there cases in which it is the right diagnosis?) and in those cases should be called atypical trigeminal neuralgia. This is a way to save us from the stigma attaching to ATP. i.e, that it is an affliction of the mentally or emotionally disturbed. The thinking is, we really don't know the cause, so let's call it something nonprejudicial -- EVEN IF THE MOST EFFECTIVE MODES OF TREATMENT ARE ESSENTIAL THE SAME; in my case, amitriptyline +.
I feel that these efforts to destigmatize facial pain may fall short of convincing and are possibly harmful. In general,we don't make something so because we want it to be so. The flight to an ATN diagnosis can be seen as stigmatizing mental or emotional injury and so put those accurately diagnosed as having AFP, if there s such a thing into an even darker light. I will now publish a message I sent to Stef, who wrote the original piece on this site touting the new lingo some years ago. I have not gotten a reply (maybe Stef gets to the site rarely these days), so, after 2 attempts, I will publish it all and hope for a substantive dialogue. Look for the title "A Philosophy of Atypical Pain." My focus is on clarifying meanings and implications as oppose to giving advice or asking for help. A little wonky, but, i think, important.
Woman with the electric teeth said:Hi Livinginhope, sorry, I gave you the wrong name up above; just realised you are IN hope, not a living hope! Your consultant is actually correct. Technically speaking, you don't have TN, you have Neuropathic Facial Pain, as does everyone with ATN. Some doctors and web sites are guilty of using TN when it's not strictly correct - right down to TN2 and ATN becoming popularised as terms. Personally, I don't think this does anyone any favours. While you have a diagnosis, it's actually the wrong one and I think people get upset that the MVD op, for example, is refused to them, but it's actually useless to them, and dangerous. I think it also confuses them when their symptoms don't conform, or the medications don't work. I think it would be better if docs stuck to the right name and so kept the options more open for them. That way they might get to the bottom of causes and treatment better, instead of writing it off as a sort of 'not classic TN'.
I don't think they know much about TN or Neuropathic Facial Pain simply because they're so complicated, with so many variables. Plus, of course, unlike a leg, you can't just open it up and do a bit of exploratory surgery! It's also a rare disease, which doesn't help. Until someone works out a way of dealing with a damaged nervous system, we're all in the same boat!
Livinginhope said:Does make me wonder whether the medical profession really knows much about TN and its varieties (together with facial pain, etc) or whether they are still learning. My MRI was clear and I have TN2 type pain in cheek, under eye and in teeth, yet my consultant told me I don't have TN mainly because nothing showed on the MRI. He diagnosed me with neuropathic facial pain and said the treatment was the same ie Pregabalin and the like - which incidentally isn't doing a great deal with the pain at the moment. :(
When you say you had your nerve "explored", Cleo, what do you mean, exactly? Did they actually open it up and poke around???
Cleo said:
I did have the nerve in my lower jaw explored due to shocking, burning, gripping, numbness that occurred during a dental nightmare. The trigeminal nerve is part of the peripheral nervous system and there is a peripheral nerve classification system... Every nerve has a purpose/function and every nerve has a specific name.
I'm going to check that out, Howard. I admit I was reticent to start telling people they didn't really have TN because it sounds judgemental and because I have seen doctors (including the UK's own advisory site) using the terns TN2 and ATN, but I had read, confusingly, neurologists saying that ATN or TN2 "didn't exist" and they were inaccurate terms. I didn't give it much thought at the time, just put it down to medical fashion, but then visiting these sites I experienced two important things:
1. My own extreme confusion and inability to get an answer to relatively simple questions because the people I was discussing my illness with did NOT have symptoms remotely like mine. Some were using opiate painkillers! It was utterly baffling, and very upsetting. I took to asking first if they had ATN, because I knew their advice would be as good as valueless to me, unless it bore a strong resemblance to my classic TN, and even then that wasn't assured.
2. The sheer variety of symptoms and causes among ATN was ENORMOUS. It also seemed to allow for a lot of what I would consider crank cures because, hey, we might as well throw anything at a disease that has symptoms from splitting headaches to a sore tongue, with tingling ears and numbness in a corresponding leg thrown in for good measure. I also noticed how many ATN sufferers had a real struggle with doctors, in everything from diagnosis to treatment, or even being believed at all.
Anyway, I'll go look for your treatise and share my thoughts there!
thehoward said:
I think these last few comments are hitting a target not discussed on this site. We all take it as a given, in light of the statements of some doctors and their popularizers on this group, that the phrase "atypical facial pain" (a neurological pain) is often a wrong diagnosis (are there cases in which it is the right diagnosis?) and in those cases should be called atypical trigeminal neuralgia, as if this were a way to save the stigma attaching to ATP. i.e, that it is an affliction of the mentally disturbed. The thinking is, we really don't know the cause, so let's call it something nonprejudicial -- EVEN IF THE MOST EFFECTIVE MODES OF TREATMENT ARE ESSENTIAL THE SAME; in my case, amitriptyline +.
I feel that these efforts to destigmatize facial pain may fall short of convincing. We don't make it so because we want it to be so. In fact, the flight to ATN can be seen as stigmatizing mental or emotional injury and so work to put those accurately diagnosed as having AFP into an even darker light. I will now publish a message I sent to Stef, who wrote the original piece on this site touting the new lingo some years ago. I have not gotten a reply (maybe Stef gets to the site rarely these days), so, after 2 attempts, I will publish it all and hope for a substantive dialogue. Look for the title "A Philosophy of Atypical Pain." My focus is on clarifying meanings and implications as oppose to giving advice or asking for help. A little wonky, but, i think, important.
Woman with the electric teeth said:Hi Livinginhope, sorry, I gave you the wrong name up above; just realised you are IN hope, not a living hope! Your consultant is actually correct. Technically speaking, you don't have TN, you have Neuropathic Facial Pain, as does everyone with ATN. Some doctors and web sites are guilty of using TN when it's not strictly correct - right down to TN2 and ATN becoming popularised as terms. Personally, I don't think this does anyone any favours. While you have a diagnosis, it's actually the wrong one and I think people get upset that the MVD op, for example, is refused to them, but it's actually useless to them, and dangerous. I think it also confuses them when their symptoms don't conform, or the medications don't work. I think it would be better if docs stuck to the right name and so kept the options more open for them. That way they might get to the bottom of causes and treatment better, instead of writing it off as a sort of 'not classic TN'.
I don't think they know much about TN or Neuropathic Facial Pain simply because they're so complicated, with so many variables. Plus, of course, unlike a leg, you can't just open it up and do a bit of exploratory surgery! It's also a rare disease, which doesn't help. Until someone works out a way of dealing with a damaged nervous system, we're all in the same boat!
Livinginhope said:Does make me wonder whether the medical profession really knows much about TN and its varieties (together with facial pain, etc) or whether they are still learning. My MRI was clear and I have TN2 type pain in cheek, under eye and in teeth, yet my consultant told me I don't have TN mainly because nothing showed on the MRI. He diagnosed me with neuropathic facial pain and said the treatment was the same ie Pregabalin and the like - which incidentally isn't doing a great deal with the pain at the moment. :(
That's an interesting link, Cleo, although I'm not sure if you're pointing something out to me specifically here???
Cleo said:
Very interesting, no need to worry about squicking me! So how did this come about? Was your lingual nerve damage a result of an attempt to cure your ATN or was the lingual nerve damage caused by dentistry and it's then gone on to become ATN? (Sorry, I'm assuming it is ATN - do you have or prefer another category for your condition?)
Cleo said:
I have lingual nerve damage and the best way to explain surgery for this is to show you. WARNING not for weak. mine is comparable to # 4.
http://www.exodontia.info/files/J_Oral_Maxillofac_Surg_2010._Retros...
I read recently that most dental nerve damage heals itself within 30 to 60 days - yours must have been severe.
I have always believed that my TN was caused by dental procedures, but something in my head has always wondered what if ?
What if I did not have that 2nd tooth extracted ?
What if I had just left the pain to see if it would subside instead of having another tooth extracted.
Did the 1st root canal cause the TN ?
Was it the 2nd, 3rd root canal ?
Did all those fillings I had cause the TN ?
.........or was it the 1st extraction ?
Why didn't any of my pain go ? why did I have grinding intense pain 24/7 for well over 60 days ? Why am I stuck with TN pain 8 years later ?
Dallas, do you have classic TN or ATN?
Dallas said:
I have always believed that my TN was caused by dental procedures, but something in my head has always wondered what if ?
What if I did not have that 2nd tooth extracted ?
What if I had just left the pain to see if it would subside instead of having another tooth extracted.
Did the 1st root canal cause the TN ?
Was it the 2nd, 3rd root canal ?
Did all those fillings I had cause the TN ?
.........or was it the 1st extraction ?
Why didn't any of my pain go ? why did I have grinding intense pain 24/7 for well over 60 days ? Why am I stuck with TN pain 8 years later ?
My GP and dentist diagnose me with TN years ago.
But! only 2 days ago I saw a new dentist who said its ATN I have.
So did your TN pain drive you to the dentist, like most TN sufferers, or did your TN come on after a visit to the dentist?
Dallas said:
My GP and dentist diagnose me with TN years ago.
But! only 2 days ago I saw a new dentist who said its ATN I have.
TN pain came on after a visit to the dentist back in 2007, it was a failed root canal and the tooth had to be extracted.
Woman with the electric teeth said:
So did your TN pain drive you to the dentist, like most TN sufferers, or did your TN come on after a visit to the dentist?
Dallas said:My GP and dentist diagnose me with TN years ago.
But! only 2 days ago I saw a new dentist who said its ATN I have.
Ah, well I can see why you have doubts. So have you had an MRI? If so, what did they find?
Yes, had MRI and all came back fine, no abnormalities.
Maxi-facial said TN is a chronic condition and I would have to keep taking the meds which I hate. Also said not to have any more teeth out. Seems a bit silly to say when you have a mouth full of root canals and old fillings which in time will need treating,
I've lost several teeth since then due to old fillings and old root canals, the first TN pain from first extraction made all my other teeth hurt. Dentist love old fillings because they want to re-new them or say they need root canal work done, its all the dentistry that has caused my TN.
My neurologist said its stress, hah! what a joke he was, its all the pain that is causing me the stress and the OCD.
Yeah, I'm due to get an MRI a fortnight from now. Perversely, I'm dreading them not finding anything because it makes it so much harder to do something concrete. I'll be in the same boat as you, on meds all my life. I could just about cope with that if it wasn't for the 'degenerative' part of the illness. What do I do if it gets worse with age and the meds don't work any more, or the side effects become unmanageable? I've only had the illness a few months and I've already had to drop my dosage and replace it with a new drug because the side effects became unmanageable. Still, no point in catastrophizing - let's see what the MRI turns up first!
My thoughts are with you, the MRI is painless.
I was only 34 when I got full blown TN pain, now aged 41.
All my previous tooth extractions have brought pain relief, the TN pain was far less, no rear teeth pain conductors you could say.
No rear teeth means no support for your front teeth, this last tooth extraction I had 2 months ago due to biting down hard is giving me hell............... I actually wish I never had it out.
Woman with the electric teeth said:
Yeah, I'm due to get an MRI a fortnight from now. Perversely, I'm dreading them not finding anything because it makes it so much harder to do something concrete. I'll be in the same boat as you, on meds all my life. I could just about cope with that if it wasn't for the 'degenerative' part of the illness. What do I do if it gets worse with age and the meds don't work any more, or the side effects become unmanageable? I've only had the illness a few months and I've already had to drop my dosage and replace it with a new drug because the side effects became unmanageable. Still, no point in catastrophizing - let's see what the MRI turns up first!