So, I saw my new neurologist today, finally! He was very kind and spent an hour going over my history and asking questions. MUCH better than my last neurologist!
He was puzzled because I only had the lightening-striking pain for 3 days last March, then have had the constant burning and such pain ever since. He says that I didn't have the striking pain long enough for it to have evolved into the constant pain. I asked him about ATN vs TN and asked him what his thoughts are on those. He said that TN is the striking pain and that ATN only comes about after having TN for a long time. This really, really doesn't fit what I've been reading around here. It might have mentioned that it was a theory? Any thoughts?
He wants to try me on Tegretol again. He wasn't sure the other neurologist gave me the right medicine and he wants me to try it for more than a week or two along with the Cymbalta that I've been on. He told me that most of the time, people with TN feel improvement in the pain within the first dose of Tegretol. Is that true?
I was hoping he would start me on a tricyclic anti-depressant since I've heard those work really good for people with the constant burning kind of pain. He said he will try that if the Tegretol doesn't work.
I guess I was just hoping for something more from the appointment. A magic wand, maybe?
Nope, it was only for those 3 days... several attacks during the 3 days. At the time, I figured something had gone very wrong with the root canal that I had done the previous week. What bothers me about what he said is that he is saying that no one can have ATN without first having TN. Does anyone know if this is true?
He was really great about answering my questions and seemed to genuinely care. He is ordering a stronger MRI for me, to check out a white spot and also to see if he can see any veins near the nerve.
I guess maybe I'm just sad he wasn't able to make any quick improvements, which I knew there is nothing quick about all of this. I was still hoping for things to be a lot better right away, lol.
Thank you for the responses! My x-rays have all looked great. It's my uncle-in-law that did my root canals, then my dad did 4 extractions. I've had my x-rays looked at by numerous professionals this past year. The root canal that came right before the lightening strikes was one of my lower-left molars. The burning and aching pain is throughout the teeth and gums on my lower and upper jaw. I get some jabs of pain here and there, but NOTHING like those lightening strikes!
The neurologist made it sound like if I don't respond to the Tegretol he is going to conclude that I have atypical face pain instead of TN or ATN. I know I've read here that it can be used as a diagnostic tool to confirm TN, but not to rule it out. Very frustrating!
I sure hope this starts to feel better within 3 days! Thank you for the glimmer of hope!
This is an issue that really frustrates me too. It's a great deal of semantics going on in categorizing ATN or TN2 or atypical facial pain. What is the difference? Some nuerologists don't make a distinction while others do. What will the neuro do if the Tegretol does not help? What will he do if it does help? Sounds like he will not do any of the surgeries that work for TN1 on you if the Tegretol does not work, such as gamma knife, rhizotomy or MVD. (Just make sure you get an MRI of the trigeminal nerve and brain.) I am sorry to hear about the tooth extractions not helping. I think it is a good idea to take the Tegretol to see if it works and then report back to the neurologist for further instruction.
They've checked my bite many times. I saw a TMJ specialist that is a friend of my dad's to see if there was anything going on that way, just to be extra sure. I've been cleared as having no dental problems left by an oral surgeon and a pain specialist at the dental school. It's just been a really long year! I can't believe all the specialists I've been to and the pain still gets out of control too often.
Yes, I suppose it's just a waiting game to see if the Tegretol helps. And hope the MRI that he is ordering shows more than the last one did.
Feafee, I think I have found something that you could take to your neurologist. It’s from a book published in 2010, Trigeminal Neuralgia, edited by Peter J. Jannetta, pg 43:
"In some patients, the duration of the typical lancing thing pain (typical TN) is brief, and is replaced early on by a constant (burning) pain."
This is from chapter three, Typical and Atypical Symptoms, and is a real eye- popper. I’ve read so many stories on this forum and it seems no two are the same. There is also “mixed TN”.
You sure have a complicated situation with your Dad and Uncle. I really hope you get some relief but with ATN sometimes gabapentin and amitriptyline or nortriptyline is more useful. So sorry for all your procedures and pain.
It has been one of the most valuable tools in my ATN war chest. I take it to all of my appointments. It’s not the last word, but it’s sure better than a lot of words that have come out of the mouths of some of the specialists I’ve seen. Very glad to be of some help.
3 more things -- put dental or root canal in the search box above-- should be hundreds and hundreds of hits here
For the inside of mouth pain instant relief for many - RX lidocaine mouthwash ----For topical face help -rx Lidocaine patches worked for many - me 12 of relief for strikes - there is also a prescription cream
For us, MRI is only sometimes a compressed nerve showing up -- I had 2 and they did not show up. So that is NOT a definitive test. Mostly only good for checking for MS and to rule out tumor.
I was prescribed tegretol and got relief from jabbing pain almost immediately with1 day of starting but the burning pain continued for 1 week now I just have numb feeling on cheek. But I think everyone is different..
Thanks again everyone! I am hoping that at least the smaller jabs will stop and that will be an indicator for whether the Tegretol is helping. I'm very, very hopeful that the Tegretol will help the burning pain!
Kc, I have a really cool mouthpiece that was made to fit my teeth. The pain specialist dentist in SF made it for me and had a lidocaine compound made to spread into it. Since you are so very awesome about promoting lidocaine help, I thought you should know about it, lol. It only helps the top section of my mouth for a little while, but it is SO nice to be able to get even a little bit of relief! It helps the bottom sockets considerably!
I had a 3d cat scan done at my dad's office and at the endo. Both of them turned up normal. If fact, the endodontist warned me that it might be a neuralgia and that I shouldn't have any teeth pulled. Oh how I wish I had listened to him!!! We pulled the first tooth a couple days after seeing him. I think my dad just couldn't stand to see me in so much pain and was really hoping it would help. Guess that is the downside to having dentists in the family...
The whole TN classification system is a big problem, a lot of outdated info in circulation.
I’ve copied something from a TNA newsletter for you to consider:
Often it proves difficult for the physician and patient to determine the fine differences between classic trigeminal neuralgia and trauma induced trigeminal neuropathic pain. IN ORDER, to decide on the proper treatment plan it is imperative to recognize these differences. A destructive procedure used for classic TN could make neuropathic pain much worse.
Thanks Bella, as much as I would love a surgery to make this all better, I sure don't want to make it any worse! At least this new neurologist seems to want to be sure if it is classic TN. The other neurologist diagnosed me within 10 minutes and barely asked me any questions. That book you quoted from is super expensive! I'm going to have to see if I can find it at a library, or just show him the quote from what you wrote, if I need to. I guess it doesn't matter what he diagnoses me with, as long as he finds some medications that really help.
Yes, I think I read quite a bit of that book on Google.books before I finally broke down and bought it. It is a medical book, written for doctors and surgeons, not laypersons. But I have been studying the medical stuff for so long now I can follow along well enough. A lot of things I have to keep looking up. I also bought two brain colouring books for anatomy and medical students that really help in my quest to understand as well. The first one I just happened to see at a university bookstore when shopping with one of my daughters. My other daughter knew I was so excited about this she sent me the other one. I do not have classic TN so while my doctors were trying to figure out what was wrong I did quite a bit of looking just by words that got used like dysphasia and dystonia which in my case were merely vague ways of saying things. I had a lot of confusion. One day I left my GPs office pondering a report from a pain clinic and thinking, “seasick neuropathy”, I don’t get seasick even in huge waves. Then I realized I had misheard, and what she said was “C-6 neuropathy”.
I think I the last bit I sent that what they were getting at is not to have the destructive or ablative procedures done if the Tn is from surgical or dental damage. However, if the damage simply pushed the nerve into overdrive when a contact point from a blood vessel was already present, that would be a different matter. MVD is not a destructive surgery.
I have never really figured out how to get those PubMed reports. Even still, lots of free PDFs on Google scholar, I clicked the translate button on Spanish one about a month ago, quite recent paper, and it was the most compassionate thing I had read from medical people by far.
If he needs visual evidence and does not find it -- you may have to change doctors. Many very longtime wise MVD doctors know that MRI is not the defining tool.... you might have to find one that knows you cannot always see them - even with the super- duper - state of the art MRI - doesn't matter.