I know it doesnt make sense.... When i had deeeep pain in my cheek..... It seemed dumb to put lidocaine patch on the surface....BUT
it quelled the nerve ....deep up to 12 hours.....
So i would not discount the possibility that different lidoocaine
......it may work in the mouth AND on the face.
: )
Cherri said:
I see people talking about the mouthwash but I dont think that will help me :( The pain I get in my tongue is not surface pain and feels deep within the muscle. I am interested in the lidocaine creme for my face though.
Thanks for that Cleo. I am learning a lot today! It is pretty difficult for me to pinpoint the tongue pain. It moves around a bit--definitely towards the back, mostly on the side, sometimes more on the top, sometimes more in the middle. The sensation also changes--sometimes a dull, deep ache, sometimes numb and sometimes tingly.
I am also experiencing new TN symptoms on the right side on the roof of my mouth, in my jaw, teeth top and bottom and a little under my lip.
This is all so confusing! I joined the GPN site as well to get some feedback from their members. Trying to educate myself as much as I can before seeing a new specialist.
Cleo said:
The tongue has several different sections controlled by different nerves. Knowing which part is abnormal can help diagnosis.
Just read your question Jane, and everyones replies. There is a video on here that Dr. Casey is in. He talks about "sprouting" and that after a nerve injury happens it can expand to near by areas as well. It is probably a matter of time before I get tongue numbness and pain as well. That sucks... You would think if the amitriptyline is working so well on one side, it would work well to keep your entire face calm as well, but I guess it doesn't work that way. Evidently even though the meds are covering up the symptoms and pain, it doesn't mean that the underlying process has gone away, it can continue to make more and more sprouts, which is not good, and in his video, he says that is why he recommends , if it is possible to get surgery and the sooner the better.
I will check out that video. Yeah, this is scaring me because my left side symptoms are under control with the Amitriptyline. Unbelievable! I know my left side symptoms are still there. I get little reminders almost every day.
I also tried to reduce the Amitriptyline in November from 40mgs to 30mgs to see if the pain was still there. It was so I went back to 40 and have been good since...until this week :(
My TN has always been on the right side and when the " unbearable strikes hit " my tongue would go numb and stay that way for several minutes after pain subsided. Tongue is def in play with TN. Carbamazepine has worked for me although side affects truly suck.
HI just...246 replies..wow..the community is rapidly growing..so you may have already heard this but ask you GP for a neurology referral..let us know..good luck, actually don't ask but politely insist.
yeah, I went from 50mg of noritrytpline to 25mg , and wow, I forgot how bad the pain was... So I experienced the severe pain in my teeth again, and told myself to remember this pain, the next time I am thinking about decreasing the meds again...I wish I had 10mg doses, I could go up in a smoother way... I had to go from 25 to 50mg and that's why I hated it, it was a stark difference from going from normal Elvera to zombie Elvera , lol....Hang in there Jane, we are all rooting for you :)
Sorry u have this right now… when my tongue burned I ate some hot pickles. It burned of course… but I think a day or two later it went away.
I had heard something about people taking cayenne or something to help with it… so that’s why I tried it. Also cuz I was soo tired of the burning pain…I thought --; tounge I’m going to give you something to burn about!!!
Sure sounds familiar. I get the tongue issues too, but they come and go and are nothing like as painful. More irritating, itchy and tingly and sometimes numb. I most often notice it after eating, or if I've been talking more than usual. I think it is the TN. See if you can figure out what your triggers are. Meds didn't help me, so I can't say much there, but I do find practising mindfulness techniques helps me manage the symptoms and the pain. Check out The Centre for Mindfulness Research and Practice, there may be something there to help you
My initial pain was totally on the left side of my face then I went into remission for 6 years. When my TN came back it now seems to be concentrated mainly on my tongue, teeth and the roof of my mouth and I haven't had Any relief for about 2 years. Sometimes my lips go totally numb and I have to watch when I'm drinking or eating something hot (just like visiting the dentist). I have Type II, but I'm also starting to get a few 10/10 shocks kicking in, which is rather unpleasant!
I'm not sure of the next plan of attack as far as meds go as I'm reaching the end of the line and nothing has worked so far. Just have to keep soldiering on and seeing what we can try next. Good luck with it all it's a bugger!!
Hi there,
I’ve had tongue issues in the past that include rightside pain and feeling like I have a hair in my mouth. Needless to say its delightful! I’m sure its related to the TN and ear pAin. When I’ve told the drs I don’t get a definitive answer but they write it down. I make the assumption its related.
I also have tongue pain. I recently told my neurologist about it and he just says i's part of my TN. I told him the way it feels to me that if when he was a child did he ever stick a 9 volt battery on his tongue and that well it feels like I have a thousand 9 volt batteries on my tongue all the time. It is quite annoying and is usually followed with teeth pain. I'm so tired of feeling like I have a mouth full of rotten teeth and have no bad teeth. This is the 1st time I went to the neurologist and I felt like he couldn't get rid of me fast enough even though I was crying and telling him i'm not the same person I used to be and that I need to talk to someone. It's been 2 weeks and his office hasn't contacted me about any referrals. He wants to send me to pain management doctor which i'm scared about because a friend told me all they'll do is get you addicted to narcotics which is something i've tried my best not to do. I feel so lost right now. I feel like I just exist in a world of pain by myself that no one else in my life understands. They don't see a wound so they just don't get it :'(
Thank you to everyone for all your replies! I guess the tongue being involved is not a rare thing at all! I can relate very closely to many people's comments and descriptions of their pain.
I am wondering what medication has helped with this issue???
I am experiencing numb, tingling pain or sensations on the right of my tongue, roof my mouth and around my jaw.
I am on Amitriptyline which has helped completely with the other side. I am considering going to the hospital later. I am going to ask for Lidocaine mouthwash to start with.
Since I’ve been on Effexor my mouth pain has been controlled. But…everyone is different. What works for one doesn’t always work on another. It’s trial and error, unfortunately.
Do NOT be afraid to go to pain management. They will NOT just get you addicted to pain meds. If fact, their goal is for you to NOT be addicted.
Aunt Nicki said:
I also have tongue pain. I recently told my neurologist about it and he just says i's part of my TN. I told him the way it feels to me that if when he was a child did he ever stick a 9 volt battery on his tongue and that well it feels like I have a thousand 9 volt batteries on my tongue all the time. It is quite annoying and is usually followed with teeth pain. I'm so tired of feeling like I have a mouth full of rotten teeth and have no bad teeth. This is the 1st time I went to the neurologist and I felt like he couldn't get rid of me fast enough even though I was crying and telling him i'm not the same person I used to be and that I need to talk to someone. It's been 2 weeks and his office hasn't contacted me about any referrals. He wants to send me to pain management doctor which i'm scared about because a friend told me all they'll do is get you addicted to narcotics which is something i've tried my best not to do. I feel so lost right now. I feel like I just exist in a world of pain by myself that no one else in my life understands. They don't see a wound so they just don't get it :'(
Yes, mine is in that back section that is dark grey :( It will also go along the side of my tongue and in my bottom lip as well as the back of my throat (tonsils?) as well as down my throat/neck. It is a horrible aching, deep pain. I suspect that my flare ups will at times cause both of these things to flare up and together I am in agony and it is when I will run to the ER begging for help. Of course I also have the TN pain... I am a very literal minded person, left brain oriented. It helps me to understand things..the fact that I cannot make sense of this (bi-lateral TN and possibly GPN left side) leaves me very anxiety prone and stressy :(
Cleo said:
The tongue has several different sections controlled by different nerves. Knowing which part is abnormal can help diagnosis.
KC I will definately ask my neurologist about this, thank you. I guess it is easy for me to disregard something that doesn't make sense to me but when someone else explains you think more about it.
Kc Dancer Kc said:
I know it doesnt make sense.... When i had deeeep pain in my cheek..... It seemed dumb to put lidocaine patch on the surface....BUT
it quelled the nerve ....deep up to 12 hours.....
So i would not discount the possibility that different lidoocaine ......it may work in the mouth AND on the face.
: )
Cherri said:
I see people talking about the mouthwash but I dont think that will help me :( The pain I get in my tongue is not surface pain and feels deep within the muscle. I am interested in the lidocaine creme for my face though.
Aunt Nicki, a good pain management doctor wants anything BUT to have you become addicted to a substance. My pain doctor is also an addiction specialist and he pays close attention to his patients to be sure they do not develop a problem. Realize also that addiction and dependence are very different things. Addiction is when you abuse a medication to get high and are addicted to the euphoria, dependence is what happens when people take a medication and the body becomes dependent on it. If you take your medication as directed there is rarely an addiction problem, with certain medications though you will develop a dependency and they will have to wean you off of them comfortably. Hope that helps :)
Aunt Nicki said:
I also have tongue pain. I recently told my neurologist about it and he just says i's part of my TN. I told him the way it feels to me that if when he was a child did he ever stick a 9 volt battery on his tongue and that well it feels like I have a thousand 9 volt batteries on my tongue all the time. It is quite annoying and is usually followed with teeth pain. I'm so tired of feeling like I have a mouth full of rotten teeth and have no bad teeth. This is the 1st time I went to the neurologist and I felt like he couldn't get rid of me fast enough even though I was crying and telling him i'm not the same person I used to be and that I need to talk to someone. It's been 2 weeks and his office hasn't contacted me about any referrals. He wants to send me to pain management doctor which i'm scared about because a friend told me all they'll do is get you addicted to narcotics which is something i've tried my best not to do. I feel so lost right now. I feel like I just exist in a world of pain by myself that no one else in my life understands. They don't see a wound so they just don't get it :'(
Nicki, don't be scared about the pain clinic... in my experience the last thing pain management doctors want to do is get you hooked on narcotics. They are all about getting you off drugs and managing the pain through mind/body techniques. I am off all meds now because they were doing nothing for the pain, and ruining my life into the bargain. With a few strategies and techniques, I can manage the pain. If you want to cry and talk, do it here, honey... few neurologists are much good for support emotionally.
Aunt Nicki said:
I also have tongue pain. I recently told my neurologist about it and he just says i's part of my TN. I told him the way it feels to me that if when he was a child did he ever stick a 9 volt battery on his tongue and that well it feels like I have a thousand 9 volt batteries on my tongue all the time. It is quite annoying and is usually followed with teeth pain. I'm so tired of feeling like I have a mouth full of rotten teeth and have no bad teeth. This is the 1st time I went to the neurologist and I felt like he couldn't get rid of me fast enough even though I was crying and telling him i'm not the same person I used to be and that I need to talk to someone. It's been 2 weeks and his office hasn't contacted me about any referrals. He wants to send me to pain management doctor which i'm scared about because a friend told me all they'll do is get you addicted to narcotics which is something i've tried my best not to do. I feel so lost right now. I feel like I just exist in a world of pain by myself that no one else in my life understands. They don't see a wound so they just don't get it :'(
When I saw this, I had to reply. My TN pain started with a burning sensation on the right side of my tongue. I went to the dentist because every time my tongue touched my teeth I had pain. It wasn't until I had two healthy teeth removed that I realized the pain was coming from my tongue and not my teeth. The pain would come and go. Sometimes it really hurt to eat because of the food temperature setting off the pain in my tongue. Eventually (about 6 years later), the pain was unbearable. I had my MVD about a year ago and the pain disappeared immediately after surgery.
As you can tell from all of the stories on this site, TN manifests itself in many ways, depending on which branch of the nerve is involved. Hope this helps.
