My TN Type II began when I went in for a filling replacement in 1999. Fast forward past all the craziness, meds, ER visits, numerous specialists, two Rhizotomies, and now Disability, and not much has changed except the severity of my pain. I always thought in my deep consciousness (and prayed) that the pain would get BETTER as I got older, not WORSE. The Rhizotomies were the culprit in my Disability and rise in pain level.
My worst symptom now is a constant burning in the extraction site of the tooth that was worked on in 1999. I've had a crown, root canal, and finally an extraction. The tooth was extracted in 2004. (I went to various dentists during those five years, asking them to pull it, but none would because they didn't see anything wrong with the tooth). It's the second molar I think? I should know this! It's not my wisdom teeth, those were all pulled in highschool, and not the tooth beside the wisdom, but the very next one. It's between two teeth.
Anyways -- I was wondering if there is anything that helps with the burning pain. I've taken just about every anti-seisure med that has been on the market. Opiods such as Norco and holistic treatments from accupuncture, massage therapy, Quell Device, creams, Lidocaine Mouth Rinse etc. Nothing stops the burning.
A friend said to rub whisky on the gums. ?? I've tried Ambisol and Oragel but again, nothing takes the burning away. It's like I have Burning Mouth Syndrome strictly isolated to that one location. My tongue doesn't burn nor do any other teeth. It's like Phantom Tooth Pain or Atypical Odontalgia. Xrays, CT Scans, MRIs show nothing wrong with the tooth. My latest CTScan in July of this year, showed Mild Arthritis in my right TM Joint, which is the side my pain is on. But the doctor said that shouldn't cause the severity of the pain in which I describe in my mouth. Plus, I've already been the TMJ route with $2000 + in specialized mouth guards.
I'm at a loss as to what is causing the constant burning and if anybody knows of any treatment to help subdue it?
Thanks so much for your time reading this and for any help provided.
May we all keep fighting the good fight against pain
If this is inaccurate, then hopefully someone with more knowledge will correct me! My dentist- when I was having investigations for pain in one tooth, and like you they found the tooth was fine- told me that if there's a problem with the nerve then the pain can travel to the weakest point, i.e. where you've had work done. I have constant aching/ pressure in one particular tooth which was filled years ago, but it's okay. Amitriptyline takes the most of the pain away, but then my pain's not usually really bad. Hopefully others will have suggestions to help!
I just finished a discussion,telling what has helped ME so much,especially with the burning,boring,and shocking,but let me 1st say I do take phenobarbaital and leveled out almost a year ago.That helped quite abit with the burning and boring,but not enough to get me out of the hell I was living.It was when I started using the gallixa,I noticed it ten mins. after I put it on one spot on my cheek.I WAS LIVING A NIGHTMARE! I prayed to die,and I have a whole lot to live for. My tmj gone after 5 months of using Gallixa, the burning in my mouth unreal! After almost a year (nov27th) the boring is 75% gone most of the time,the burning about 60% better then HORRIBLE PAIN! Tonight is a very bad night,weather sucks and that is my worst trigger. I know how bad it could be without the cream.I feel I have to share what has helped me the most in 25 years of dealing with TN with others in hope that it will help someone else. I know I am starting to rattle,but just let me say,last year at this time I was still on pain pills (11 months now,no pain pills) and praying every waking moment which was most of the time,to just go to sleep and not wake up. The Gallixa has been amazing for me! I was not able to eat,barely able to drink.IT WAS MY LIVING HELL! I know now I will continue to get better,this doesn’t stop working like other things. Praying you find your answer,maybe in Gallixa,you never know. Soft hugs,Dawn
Hi Juliette, I joined this wonderful and educational site a few days ago after being told I have TN and according to my symtoms I seem to be type 2 also. So, during my 6 months of constant burning pain just as you describe, I went from dentist to other dental specialists: perio, ondo (had a root canal) back to my dentist for the crown, and I am back to square one, I am in my 7th month of non-stop pain. I have been on 300mg 3xday Neuronton which worked great for 2 days then the 3rd & 4th days it took 9 hours before I felt any relief…Thank God I am going back to see this Facial & Maxillo…(forgot the rest) where I had a cat scan of my mouth and was diagnosed with it, the next step is going to my primary physician who will see me first and refer me to a neurologist to have an MRI and hopefully there is no tumor and no MS or any other complication and just TN and less pain…I pray for all of you who are in pain, and from this site there doesn’t seem to be a real solution or a permanent relief from it, even after surgery and different procedures…and let’s hope a cure is found real soon because we are not going to take it anymore, right!!!
I was con Elavil too. It was one of the first meds I was prescribed. I didn't help much. Doctors have described my tooth area pain as being "referred pain" or simply "refractory pain from TN." ??
I looked up Gallixa and am considering buying it. I use Blue Emu Oil and it sometimes soaks into my cheek area to the tooth and soothes the burn maybe 10%. Thanks for recommending Gallixa. I have it bookmarked.
Dawn Monarch said:
I just finished a discussion,telling what has helped ME so much,especially with the burning,boring,and shocking,but let me 1st say I do take phenobarbaital and leveled out almost a year ago.That helped quite abit with the burning and boring,but not enough to get me out of the hell I was living.It was when I started using the gallixa,I noticed it ten mins. after I put it on one spot on my cheek.I WAS LIVING A NIGHTMARE! I prayed to die,and I have a whole lot to live for. My tmj gone after 5 months of using Gallixa, the burning in my mouth unreal! After almost a year (nov27th) the boring is 75% gone most of the time,the burning about 60% better then HORRIBLE PAIN! Tonight is a very bad night,weather sucks and that is my worst trigger. I know how bad it could be without the cream.I feel I have to share what has helped me the most in 25 years of dealing with TN with others in hope that it will help someone else. I know I am starting to rattle,but just let me say,last year at this time I was still on pain pills (11 months now,no pain pills) and praying every waking moment which was most of the time,to just go to sleep and not wake up. The Gallixa has been amazing for me! I was not able to eat,barely able to drink.IT WAS MY LIVING HELL! I know now I will continue to get better,this doesn't stop working like other things. Praying you find your answer,maybe in Gallixa,you never know. Soft hugs,Dawn
I was going to name my daughter Astrid. I love that name! :-)
Don't have anymore dental work done until you see the Neurologist!
You are so right in realizing that there is no cure or quick fix for this pain. I've been in pain for 16 years and was in denial for so long. I thought "There is no way this pain can last more than a few months, a year maximum." Boy, when reality hit, it hit HARD. I spiraled into depression and all that baggage that comes with chronic pain. I'm in a better place now (emotionally) but it was a long road. I'll never give up finding a cure or better treatments for my pain. It's human nature to keep fighting the fight! And like you (and Twisted Sister) said...We're NOT gonna take it anymore!!! ;-D
Power to the Pain People!
Astrid8 said:
Hi Juliette, I joined this wonderful and educational site a few days ago after being told I have TN and according to my symtoms I seem to be type 2 also. So, during my 6 months of constant burning pain just as you describe, I went from dentist to other dental specialists: perio, ondo (had a root canal) back to my dentist for the crown, and I am back to square one, I am in my 7th month of non-stop pain. I have been on 300mg 3xday Neuronton which worked great for 2 days then the 3rd & 4th days it took 9 hours before I felt any relief...Thank God I am going back to see this Facial & Maxillo...(forgot the rest) where I had a cat scan of my mouth and was diagnosed with it, the next step is going to my primary physician who will see me first and refer me to a neurologist to have an MRI and hopefully there is no tumor and no MS or any other complication and just TN and less pain...I pray for all of you who are in pain, and from this site there doesn't seem to be a real solution or a permanent relief from it, even after surgery and different procedures...and let's hope a cure is found real soon because we are not going to take it anymore, right!!!!!
Juliet,I just wanted to say that for any reason Larry would welcome your phone call,and very understanding of TN and willing to answer any questions you might have.I wish you the best and would love to know if you try it and what you think.As of this,I am sitting in my rocking,it is wet, cold and nasty out,that would normally have my TN out of control with the burning in my teeth, jaws,the whole rightside of my face,in my mouth, down my throat,my tongue,and my lips.I ate pizza a little while ago,my lips burn some and so does my tongue,but not bad.My pain tonight is where the tn nerve and the gangelion meet.That even isn’t as bad as usual but I keep putting the gallixa everywhere it hurts,it takes me weeks to sometimes know just how much the cream is helping a certain tn pain, if you know what I mean,its a little hard to explain,there are so many types of pain and in different areas of my head and face.Sorry didn’t mean to go on like this. Please stay in touch,Dawn
I understand completely! I had a compound creme once and I put on about as much as I would a moisturizer. But in the morning, I had a "chemical burn" on my cheek where I evidently didn't rub the creme in thoroughly! In the trash that product went. We just have to keep trying.
I'll let you know how Gallixa works and will definitely keep in touch!
Dawn Monarch said:
Juliet,I just wanted to say that for any reason Larry would welcome your phone call,and very understanding of TN and willing to answer any questions you might have.I wish you the best and would love to know if you try it and what you think.As of this,I am sitting in my rocking,it is wet, cold and nasty out,that would normally have my TN out of control with the burning in my teeth, jaws,the whole rightside of my face,in my mouth, down my throat,my tongue,and my lips.I ate pizza a little while ago,my lips burn some and so does my tongue,but not bad.My pain tonight is where the tn nerve and the gangelion meet.That even isn't as bad as usual but I keep putting the gallixa everywhere it hurts,it takes me weeks to sometimes know just how much the cream is helping a certain tn pain, if you know what I mean,its a little hard to explain,there are so many types of pain and in different areas of my head and face.Sorry didn't mean to go on like this. Please stay in touch,Dawn
I have a similar experience. My pain started on July 21st, 2015, with a dual crown prep on the upper left molars. I asked my dentist why I needed them done at the same time and he said "less trauma". Ha! Turns out, it was because they were done together that I have problems. He used a dual temporary crown on them, which stressed both teeth out. I've been in pain ever since. For the first month, I bounced between dental appointments and endodontist appointments, but neither could figure out why my teeth that had temporary crowns on them hurt so badly. They didn't think I needed root canals. Fast forward...I had an appointment with the endodontist but it took a month of waiting, so I found a dentist who did root canals. BIG MISTAKE. Though he, too, didn't think either tooth needed a root canal, I begged him to do one on either tooth. I didn't care which. I just knew that I couldn't sleep at night, due to the constant pain in my sinus and tooth area. So, he did it on molar 14. Turned out, 15 was the culprit. It was cracked and was messing up my sinuses. I ended up having to get that one removed, because it was cracked up at the root. But between getting the root canal on 14 and having 15 extracted (mind you, the crown prep was so that I wouldn't ever have to get a root canal or extraction on either tooth!) I developed a constant burning in my mouth. It was everywhere INSIDE my mouth. I've seen so many doctors and nobody knows what to do. In addition, molar 14 was still in agony even after the root canal. I went back and they discovered I had a 4th canal that wasn't seen, so I had a second root canal done on that tooth. It still hurts, but not as badly. I'm currently on Neurontin and Elavil with limited success. Dentist suggests getting it pulled even though it's not cracked, but I'm scared to do that, because I already don't have the back molar. What will I use to chew if I lose the other one? They say that people with TN shouldn't get dental implants because it can make it worse, so I'd be up a creek. But where the molar 15 was extracted, that gum burns badly. I was hoping it was all just a lingual nerve injury that would heal, but at 7 months out, I'm pretty sure it's ATN. My neurologist agrees. I had an MRI a couple weeks ago and will find out tomorrow what's what. I'm starting to get little twinges of pain in my jaw and cheek. I tried Tegretol and it didn't do anything but make me really, really drugged feeling.
I have had the constant burning pain with tinnitus for 8 years. I went through the years of specialists too. I had gamma knife, rhizotomy and mvd. I still have the pain. The only thing that takes the edge off is hydrocodone and baclofen. I hope one day I will be cured of this horrible condition and you too. It totally took over my life. from the moment I wake up to the time I go to bed. The only time I don't feel the burn or hear the tinnitus is when I am asleep. I would definitely try a rhizotomy if I were you. It's the least invasive I think.
It's a literal waking nightmare when we put our trust in a dentist and things go terribly wrong and our lives are changed completely. It still baffles me that all this pain and suffering I've endured over the years could have been caused by an incompetent dentist. I just hate to think that way, but it's the only viable way since my pain began with a filling. A FILLING! Millions of people get them and walk away fine. I've had them and walked away fine. What made this particular dental visit a catalyst that would change the course of my life is a mystery to me? In your case, why did the dentist deciding to perform dual crowns, a flawed decision maybe/maybe not, make you end up with ATN? There is something going on in the dentistry world. I don't think half of them can even name or label on a diagram all of the facial nerves (my dentist never even mentioned TN when I kept coming back, complaining of pain after the filling was complete. He suggested it was caused by 'sinuses'!! Seriously! This level of nerve pain caused by a sinus infection!? :-/ )and how poking around in our mouths can cause potential, irreparable damage to the nerves. Are some people more predisposed for acquiring dental pain than others are? If so, then what makes up our predisposition? Soooo many questions and not nearly enough answers to begin to scratch the surface of simple dental procedures that we should walk out of ok, but instead, turn into a nightmarish life-long pain. Let me know how your MRI results turn out. Keep fighting the pain and keep trying to find answers and relief and a cure. Know that so many of us are fighting this dental/pain relationship and that you are not alone.
govgal said:
I have a similar experience. My pain started on July 21st, 2015, with a dual crown prep on the upper left molars. I asked my dentist why I needed them done at the same time and he said "less trauma". Ha! Turns out, it was because they were done together that I have problems. He used a dual temporary crown on them, which stressed both teeth out. I've been in pain ever since. For the first month, I bounced between dental appointments and endodontist appointments, but neither could figure out why my teeth that had temporary crowns on them hurt so badly. They didn't think I needed root canals. Fast forward...I had an appointment with the endodontist but it took a month of waiting, so I found a dentist who did root canals. BIG MISTAKE. Though he, too, didn't think either tooth needed a root canal, I begged him to do one on either tooth. I didn't care which. I just knew that I couldn't sleep at night, due to the constant pain in my sinus and tooth area. So, he did it on molar 14. Turned out, 15 was the culprit. It was cracked and was messing up my sinuses. I ended up having to get that one removed, because it was cracked up at the root. But between getting the root canal on 14 and having 15 extracted (mind you, the crown prep was so that I wouldn't ever have to get a root canal or extraction on either tooth!) I developed a constant burning in my mouth. It was everywhere INSIDE my mouth. I've seen so many doctors and nobody knows what to do. In addition, molar 14 was still in agony even after the root canal. I went back and they discovered I had a 4th canal that wasn't seen, so I had a second root canal done on that tooth. It still hurts, but not as badly. I'm currently on Neurontin and Elavil with limited success. Dentist suggests getting it pulled even though it's not cracked, but I'm scared to do that, because I already don't have the back molar. What will I use to chew if I lose the other one? They say that people with TN shouldn't get dental implants because it can make it worse, so I'd be up a creek. But where the molar 15 was extracted, that gum burns badly. I was hoping it was all just a lingual nerve injury that would heal, but at 7 months out, I'm pretty sure it's ATN. My neurologist agrees. I had an MRI a couple weeks ago and will find out tomorrow what's what. I'm starting to get little twinges of pain in my jaw and cheek. I tried Tegretol and it didn't do anything but make me really, really drugged feeling.
Hi Jackie, I know what constant burning tooth pain feels like, but I can't imagine having it with a constant ringing in my inner ear as well! Bless you! Same story for me too. The pain drestoyed so many aspects of my life. I've actually been on Disability since April 2014 due to two Rhizotomies. They ended up burning the Ganglion too harshly which led to a huge increase in the pain. It went from moderate to severe after the Rhizotomies. I guess the procedure just messed with more mis-wired pain signals and they went into over-drive. I should have just left well enough alone and I'd still have my career. I thought getting the procedures would HELP my pain, not make it worse! Just like I thought going to the dentist my entire life, as a child and and as an adult, and having good oral hygiene and fixing any minor dental problems (like in my case, an old filling from highschool that needed replacing at a check-up/cleaning when I was 30) was a normal, everyday life instance. I had no reason to believe what eventually happened actually happened! I never in a million years thought that a dental visit would change my life.
I hope you get relief from both of these symptoms. Is there any medical procedures an ENT Specialist can do to help relieve Tinnitus?
littlemoth said:
I have had the constant burning pain with tinnitus for 8 years. I went through the years of specialists too. I had gamma knife, rhizotomy and mvd. I still have the pain. The only thing that takes the edge off is hydrocodone and baclofen. I hope one day I will be cured of this horrible condition and you too. It totally took over my life. from the moment I wake up to the time I go to bed. The only time I don't feel the burn or hear the tinnitus is when I am asleep. I would definitely try a rhizotomy if I were you. It's the least invasive I think.
Was wondering how you have been doing and how the Gallixa was working for you?I haven’t been on here in awhile do to the weather and helping my mom.Hope to hear from you soon. Wishing you the very best,dawn
I can't believe that a simple filling caused all of your pain! It's so scary, because we need to have our teeth protected, but at what cost to the rest of our face? Sigh. Anyway, the MRI showed no impingement on the nerve, so it would be TN type 2. I don't know which is worse. All the neurologist did was asked me what is working so far. The Neurontin keeps things in check, so that I don't obsess about the burning in my mouth all the time. The burning and "cut" feeling on my tongue are my two main issues, though I am noticing jaw and cheek pain more and more. It's fleeting pain, but it scares me that it will get worse, after reading all of these stories of it getting worse with age. I'm 54, and I can't imagine dealing with this until I'm 90!
I'm with you, in why this happened. I never even KNEW this could happen to someone, just from a regular dental appointment. Nobody told me and I'd never heard of TN before. Even when I was having trouble and kept going back to the dentist, he never said it. It was my endodontist that very matter-of-factly stated he thought I had TN, but I didn't believe him, of course. Nobody in my family has that, so why would I? But then I did sign something before I had the root canal, but that's pretty standard. I guess now I see why they make ya sign something that acknowledges injury can happen. Still, I held out hope that this is just a nerve injury and that it will heal. They say it can take up to 18 months to heal, so that's what I believed. However, it seems to be getting worse and not better. I can't imagine if it keeps on getting worse. The neurologist said that if I stay on the neurontin, it shouldn't progress, but I've read nothing that makes me think that is true. I have only read that people who get the more invasive procedures end up worse than better, and that is a good warning to me. But then, maybe it's just those who have trouble who post,and the ones it works for don't. I have a friend with TN1 and she got the nerve block for the first time recently and it worked on her for a week. Second time, it did nothing. She went from Tegretol to Neurontin and said the Neurontin works better for her. So, I do Neurontin and Clonopin, which helps with the burning. Some days, I don't notice it at all. I have ordered the Gallixa cream, and I'll keep ya posted on if that works or not. I think I'll even try smearing inside my mouth. :-)