Anxious, I'll try to respond to your specific questions where I feel confident that my information is current and constructive:
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You mention that some physicians now call ATN or trigeminal neuralgia type2 a neuropathy rather than trigeminal neuralgia type2... if trigeminal neuralgia type 2 is a neuropathy then it should be more common than what they claim it is online, no?
<<<<Though Type 2 TN is more common than many physicians are aware, the neuropathic nature of the pain is probably not the reason or cause. At one time, Type 2 TN was also called "pre-trigeminal neuralgia" because doctors observed that it might emerge as the first pain syndrome and then later morph into the more familiar volleys of electric shock spikes. If I'm reading trends correctly, the main reason for the re-naming of Type 2 TN is that it frequently requires different medications than Type 1, and the character of the pain itself is more that of neuropathy than neuralgia.
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A lot of sites make it sound as something very rare, basically a rarity inside the rarity of TN, but if it's rather a neuropathy then I think just about anything from cold, to tmj, to bad posture, to muscle tension, to a bad tooth can cause a neuropathy on the face, am I wrong?
<<<<I don't think anybody is entirely certain of all the causes for trigeminal neuropathc pain. Almost certainly, a number of DIFFERENT causes can contribute to its emergence. Bad posture and muscle tension most likely aren't on that list of causes. But dental abscess or careless over-use of anesthetic during dental procedures definitely can. There is speculation but no firm data that the Herpes Simplex I virus may also cause some cases of Type 2 TN (the virus involved in cold sores).
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What I understood by reading your valuable input is that Type 1 trigeminal neuralgia is the actual proper trigeminal neuralgia where the nerve is often squeezed by something else on the face (right?) and that is relatively rare and it is often extremely debilitating and painful.
while Type 2 TN is more of a symptom of something else that causes the nerve to get irritated causing all sort of symptoms on the face.... and the pain/discomfort varies on intensity depending on the cause, from mild you can ignore it, to extremely painful.
<<<<I think you have the outlines right. The best demographics we have indicate that Type 1 TN may first present as a new case in 12 to 20 people out of 100,000, per year. This compares with an earlier estimate of 4 per hundred thousand per year. The stats aren't as reliable on Type 2 TN because it is often mistaken for other types of pain and few physicians have deep training in recognizing it.
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Regarding patients, Some patients have TN1 with the stabbing pain, on top of the burning discomfort of ATN, while other patients just have the discomfort of ATN, while others just have exclusively TN1 symptoms. Is that correct?
<<<<that's pretty much the way it sorts out. One addition, though: BOTH types of facial pain tend to intensify over time, and there is limited evidence to suggest that in Type 1 TN if pain is allowed to persist without effective treatment for seven years or more, then the effectiveness of MVD surgery tends to be reduced.
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Let me ask this directly. It's the intensity of pain the same for all patients? or for many TN is just a nuisance that comes here and there for a few seconds and then goes away? I was under the impression that TN sufferers have constant stabbing of pain that is progressive, but the more I read the more it seem that many actually have it for a few weeks and then goes away, while others have just a minor thing they can ignore, while others are completely affected by this, I guess it all depends on the cause and the intensity of pain.
Do I understand the difference correctly?
<<<<No, the intensity if highly variable between patients, and nobody is entirely sure what distinguishes the most severe cases from the more manageable. Pain can go into remission spontaneously, especially in the early stages of the disorder, and a few patients report being pain free for up to two years before the return of pain. But the remissions tend to shorten and the pain "comes to stay" if not managed effectively. It's important to seek effective pain management early, and to stay with it, even if your pain evolves and requires different medical or surgical solutions later. If the pain is allowed to stay uncontrolled, it appears that the nervous system develops changes which may make later treatment more difficult.
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By the way, Neuropathy is pain, discomfort or numbness along a nerve path, while neuralgia is stabbing shocking pain.... am I right? if I am right then my pain seems to go along the lines of neuropathy rather than neuralgic.
I have a neurologist appointment on the 7th of may at 11AM
Thank you for your help!
<<< Welll... "sort of" Neuropathy and Neuralgia are both characterized by pain, discomfort, numbness, tingling (parasthesia), but the character of the two kinds of pain is somewhat different. Neuropathy tends to be more constant, more burning or throbbing in character. Neuralgia can cause cascades of intense electric-shock pain. Both are sometimes mistaken for TMJ by inadequately trained dentists -- and some TN patients ALSO deal with TMJ or other secondary pain-related disorders such as MS. So there are a lot of factors in play.
I hope this is constructive for you.
Best regards,
Red