Hi all,
I met with a specialist today. He said that I have Atypical Neuropathy and not Trigeminal Neuralgia. I am confused about the difference between the two.
I have Bilateral Atypical something? This was not brought on by a dental injury and my second MRI was clear. I have pain in the second and third branch on both sides.
Can anyone explain the difference please.
Thanks
Hi Jane -
Glad to hear that your MRI was clear ! my neurologist also called mine trigeminal neuropathy because he thought there was a possibility it may go away after time and healing from the extensive dental work. He never even said atypical. The words pathy and algia differ only slightly in that one means disease and the other means pain. So who really care what the name is we know it is both. Did you get some other meds and more importantly do you feel hopeful ? BTW mine came back last week, so frustrating , but its so different this week... Feels like i have had anesthetic - tingly numbness in the far corner of my mouth. I started back on the amitriptyline.
The distinctions between trigeminal neuralgia and trigeminal neuropathy are sometimes unclear. However, in general terms, neuralgia refers to a condition of inflammation, and neuropathy is a reaction to some discrete mechanical nerve injury. Many neurologists tend to use "Type II TN" and "Trigeminal Neuropathy" interchangeably. They both refer to a presentation of pain that tends to be burning, tingly, and throbbing in character, and to last 24/7.
Trigeminal Neuralgia, on the other hand, in its most typical and usual form, is characterized by hour to two hour long volleys of 60-90 second electric-shock stabs which seem to die out when the nerve temporarily exhausts its capacity to transmit impulses. Both forms of face pain can be associated with trigger zones where light touch can "set off" the initiation of the pain. There is speculation that the underlying neurological mechanisms of these two forms of face pain may be substantially different, with neuropathic pain having a more "distributed" or "central nervous system" character than classic trigeminal neuralgia. But the micro-level neurochemistry is not yet well understood, and even the vocabulary is imprecise.
I hope this lends some clarity.
Regards,
Red Lawhern, Ph.D.
Resident Research Analyst, LWTN
So sorry that you are having pain again! I hope the Amitriptyline helps you soon. And yes I am very glad that my MRI was clear.
The terminology is confusing. The specialist I saw yesterday is a neurosurgeon. He has referred me to a neurologist that specializes in facial pain. That is what I mostly wanted from the appointment--someone to manage me full time. Whether it was him or someone else it doesn't really matter other than the fact that I have to wait again. I do feel like I am on the right track with care. I increased the Amitriptyline about three weeks ago and it is helping me again.
The only thing that I don't understand about "neuropathy" is that mine was not from an injury. I did have an unnecessary root canal last year but the pain was there first. And this year when I started having bilateral pain that came out of nowhere.
golfgirl said:
Hi Jane -
Glad to hear that your MRI was clear ! my neurologist also called mine trigeminal neuropathy because he thought there was a possibility it may go away after time and healing from the extensive dental work. He never even said atypical. The words pathy and algia differ only slightly in that one means disease and the other means pain. So who really care what the name is we know it is both. Did you get some other meds and more importantly do you feel hopeful ? BTW mine came back last week, so frustrating , but its so different this week... Feels like i have had anesthetic - tingly numbness in the far corner of my mouth. I started back on the amitriptyline.
Thank you Red.
It is confusing to me. I don't really care too much as long as my pain is being managed. I think he was saying that because it is Atypical and "neuropathy" rather than "neuralgia" that he doesn't deal with it. He is a neurosurgeon. So because I have "neuropathy" he is referring me to a neurologist that specializes in facial pain. That I would only fall under his care if my pain was Type 1 in nature.
I consider the appointment a success because of the referral.
The only thing I do not understand with the "neuropathy" is that I did not get neuropathic pain from any type of injury. I gather that they use it to cover neuropathic injury and anything that they are unclear about the source of?
Never a dull moment with all of this!
Richard A. "Red" Lawhern said:
The distinctions between trigeminal neuralgia and trigeminal neuropathy are sometimes unclear. However, in general terms, neuralgia refers to a condition of inflammation, and neuropathy is a reaction to some discrete mechanical nerve injury. Many neurologists tend to use "Type II TN" and "Trigeminal Neuropathy" interchangeably. They both refer to a presentation of pain that tends to be burning, tingly, and throbbing in character, and to last 24/7.
Trigeminal Neuralgia, on the other hand, in its most typical and usual form, is characterized by hour to two hour long volleys of 60-90 second electric-shock stabs which seem to die out when the nerve temporarily exhausts its capacity to transmit impulses. Both forms of face pain can be associated with trigger zones where light touch can "set off" the initiation of the pain. There is speculation that the underlying neurological mechanisms of these two forms of face pain may be substantially different, with neuropathic pain having a more "distributed" or "central nervous system" character than classic trigeminal neuralgia. But the micro-level neurochemistry is not yet well understood, and even the vocabulary is imprecise.
I hope this lends some clarity.
Regards,
Red Lawhern, Ph.D.
Resident Research Analyst, LWTN
Jane, as you surmise, the nature of neuropathic "injury" is very often obscure. Sometimes not at all specific. So it's common for people who have neuropathic pain *not* to recall any specific external "event" or "contact" which might account for the pain. In some forms of neuropathy (e.g. diabetic peripheral neuropathy), the injury is of a distributed and incremental or progressive nature rather than discrete and all at once. ATN pain seems to have this character, even when it emerges relatively rapidly.
You are also correct that a neurologist is a more appropriate practitioner to assist you in managing constant burning pain, versus a neurosurgeon who may not have good options to offer you. Surgeons are "get in and get out" practitioners, where neurologists often manage a patient for years.
I know this beast is no fun. I wish you wellness.
Red
I agree with what you are saying and am just trying to figure it out as I go along. All of the unknowns with this experience are difficult to take.
I am feeling like things are moving in the right direction. I am very glad that my MRI was clear of MS and cancer, especially because my mom has MS.
And I am also thankful that I now have a referral to a neurologist that specializes in facial pain.
I was actually not surprised with how things went with the neurosurgeon. Based on what I have read and what other people's experiences have been I figured he may not be able to help me. And even though he is unable to help me he was actually incredibly nice, gentle, and had a great bedside manner. Why not start at the top right?
Richard A. "Red" Lawhern said:
Jane, as you surmise, the nature of neuropathic "injury" is very often obscure. Sometimes not at all specific. So it's common for people who have neuropathic pain *not* to recall any specific external "event" or "contact" which might account for the pain. In some forms of neuropathy (e.g. diabetic peripheral neuropathy), the injury is of a distributed and incremental or progressive nature rather than discrete and all at once. ATN pain seems to have this character, even when it emerges relatively rapidly.
You are also correct that a neurologist is a more appropriate practitioner to assist you in managing constant burning pain, versus a neurosurgeon who may not have good options to offer you. Surgeons are "get in and get out" practitioners, where neurologists often manage a patient for years.
I know this beast is no fun. I wish you wellness.
Red
I've heard it used both ways from various doctors. As well as idiopathic pain.
Good luck finding a cause, in 2.5 years I'm no closer than I was the day it started to knowing why. I was 27, in perfect health, no dental work, no injuries, no reason.
Sorry you are going through this. That is one description I do not like--"idiopathic pain"!
You are right about not finding answers and it seems the more questions I have the fewer answers I receive.
No wonder we are labelled "Atypical". No one has a clue what to do with us.
Shindig said:
I've heard it used both ways from various doctors. As well as idiopathic pain.
Good luck finding a cause, in 2.5 years I'm no closer than I was the day it started to knowing why. I was 27, in perfect health, no dental work, no injuries, no reason.
It's estimated that 12 to 20 new cases are detected per hundred thousand population per year, where the culprit is a facial neuralgia. So we're dealing with maybe 70,000 new cases per year in the US. That makes all TN patients somewhat atypical or at least unusual... and dentists badly need to be trained better to recognize these unusual cases and discriminate them from TMJ or abscess problems.
I completely agree Red. Since I have joined this forum I am shocked by all of these people's stories and how so many of them are intertwined with dentists and dental work.
There is a huge lack of knowledge by dentists and doctors when it comes to pain in the mouth from anything other than rotten teeth. And then when something out of the ordinary does come up they immediately jump to the "TMJ" diagnosis. I was "diagnosed" three separate times with TMJ problems.
And in my case I had a history of facial neuropathy or neuralgia and the dentist still did a root canal. At the time I was in so pain that I desperately wanted to believe what he was saying. I would have let him do anything. In the back of my head I knew that if it was neurological then I was about to have a very big problem on my hands.
Jane. :’(