I have ATN. I’ve had it for 2 years due to a tooth extraction…damaged nerve now. I’m in constant pain. On Neurontin…3,000mg a day and Tegretol. They help just a little. My Neurologist won’t give me anything else…said “you should not be in any pain at all with those”…WELL I AM!!! He seems to know nothing about ATN…just TN.
Oh really?? You are the first person to tell me that! That does sound logical. Thank you! I’ll check into that.
A neurologist has stood by me for a couple of decades almost. An oral surgeon did the horrific damage. Scares the daylights out of me.
Cleo, can you tell me how the nerve was repaired? And are you completely recovered now?
Did the dentist whose needle broke off notify you of the incident or did you find out on your own? Sawing the jawbone in half sounds (almost) scarier than MVD.
Cleo said:
It wasn't exactly the nerve itself being repaired. When the injection hit my nerve the needle tip broke off. It along with scar tissue was removed from the area. My jaw bone was sawed in half to locate the nerve the damage. I would have never had any recovery the way it was. It was basically the same as micro vascular decompression for vascular compression but in my case it wasn't vascular compression at the brain stem causing numb, burning, shocking, vice grip, twisted - torture... No, Im never going to completely recover. But its way better than it used to be. Only drugs I found useful were the ones that would knock me out for a good 15 to 20 hours a day.
I'm just reading your story Cleo now. WOW, what a story. So, did they find the tip of the needle via xrays, or did they just decide to do an exploratory surgery and cut open your jaw??? You are a Very brave woman Cleo...Was this on the upper or lower part of your mouth? I guess, if they cut your jaw open, the needle went into the lower part? so do you have a lot of jaw pain now as well as nerve pain?
I have nerve damage also from a tooth extraction. It will be 1 yr for me on march 25 2014. Has the pain gotten worse over time? Do you have any chronic numbness with the pain? I tried 300 mg of neurotin and that stuff made me so relaxed I literally felt like I was floating, I cant imagine being on 3000mg....I say get another Neurologist asap... How much tegretol are you taking? Can you describe your pain? in teeth, jaw, etc? Did your dentist or oral surgeon ever admit to doing anything wrong?
Well my pain has been pretty constant. Some days are wores than others but I do have the pain EVERY day. I still take 3000mg of neurontin. I don’t think I could live without it now. I don’t take the tegretol anymore. It helped the pain some but when it wore off the pain was intensified terribly. My pain in in my upper teeth. Three teeth are missing there because I kept thinking it must be the next tooth that is hurting. My pain starts out in the morning kinda feeling like I have a splinter in my gums. Then later in the day it feels like a terriable toothache. Klonipin really helps but this Neuro will not prescribe but one .5mg a day. That is not near enough. I’m trying to get into a new neuro but I prolly can’t get untill Arpil. I wrote a letter to the dentist that did this to me. He wrote back saying sorry but he did nothing wrong. How do you deal with your pain without meds??
Hi - I have had ATN for 11+ years. I went to 8 neurologists that tried their hand at helping me but they were totally ineffective. Someone suggested I go to a Pain Clinic. The doctor gave me a prescription for an anti-inflammatory and Methadone. I refused to take the Methadone because I knew heroin addicts took that so it surely couldn't be good for me. I suffered in pain and went back in and he encouraged me to take it. The combination has been life saving - I have a life again. I started out with 5mg. four times a day. My pain is triggered mostly by the barometer, especially when there is a transition. I have never had a feeling of euphoria or "loopy." I reduced my dose to 15mg/day and on good days I just take 10mg/day. This anesthesiologist has been the most helpful and productive.
Bah said:
Interesting Bah. Can I ask which anti-inflammatory you take? I hope I am replying in the correct place here. Hi - I have had ATN for 11+ years. I went to 8 neurologists that tried their hand at helping me but they were totally ineffective. Someone suggested I go to a Pain Clinic. The doctor gave me a prescription for an anti-inflammatory and Methadone. I refused to take the Methadone because I knew heroin addicts took that so it surely couldn't be good for me. I suffered in pain and went back in and he encouraged me to take it. The combination has been life saving - I have a life again. I started out with 5mg. four times a day. My pain is triggered mostly by the barometer, especially when there is a transition. I have never had a feeling of euphoria or "loopy." I reduced my dose to 15mg/day and on good days I just take 10mg/day. This anesthesiologist has been the most helpful and productive.
Hi "me": good for you for writing a letter to the dentist who did this to you. sorry he had such a crappy response. They are so afraid of getting sued. There are days, I just want to go back into that oral surgeons office and scream to everyone in the waiting room, run out of here as fast as you can because an oral surgeon here gave me nerve damage." I'm sure they would call the police , and then I would leave, but it would sure be cathartic. Just a little fantasy I go through my head from time to time,lol...Why am I not on meds? Basically, mine doesn't sound as bad as yours , however, I am wondering that perhaps in 2 yrs mine will get as bad. On March 7th, I have an apt to get an upper right molar extracted, it is on the opposite side of the nerve damage site and I got the nerve damage during an upper left molar extraction. My right upper molar started to hurt after a cavity was filled and I guess the filling did go close to the nerve pulp and although it hurts like hell and I have been putting this off since the filling was done which was late Oct....Advil takes the pain away, so I am pretty sure, the pain is coming from a bad tooth and not trigeminal pain. The dr. wants me to go on meds and I tried trileptal, got violently sick after 3 times and I took Topamax which gave me a 100 degree fever for 2 days. After the October filling I experienced mild to moderate electric shock like zingers in half my teeth on one side and also I had pain in a lot of my lower teeth on the one side as well. Super sensitive all of a sudden to just breathing. This lasted a month and then it went away. I am still getting weird tooth pain in lower teeth on one side, but it is so weird, it only starts in the evening, I shouldn't say only... mostly.....So, your pain in the upper area, is where the tooth used to be , but aren't anylonger???? so the pain is really in the empty gum area???? Do you have any numbness? I sometimes have some pain in the empty gum area where my molar uses to be and now I am experiencing more and more pain in the nearby tooth of the nerve damage extraction site. It is partially numb and then I will still get this weird pain that comes and goes, and it feels very deep and has a pressure to it as well. You can perhaps get more Klonipin from your Pcare provider, however, just be careful, Klonipin can be addictive...So, to answer your question of how I am dealing with pain without meds, my pain is on/off again, so it is bearable for now, I am just very scared that the next dental work coming up, which is another filling and this other tooth extraction... if my pain level and electric shock systems will come back with a vengeance. Did your pain get worse after each extraction??? In the book, striking back, it explains, just want you said, that if the pain was trigeminal nerve related and you pull the tooth.... then you will still have the pain...it will just move to either the gum area where the tooth was, or it will move to the next nearby tooth.... anyways, did you have this level of pain 2 yrs ago or did it gradually get worse???? thanks so much !!! Elvera :)
oh, btw, I didn't write a letter to my oral surgeon who did this to me, but I did file a complaint against him with the State department of licensing and regulation where he got his license to practice. I'm sure you still have time to do that if you want...They did an investigation and I got a small post card from them, lol, stating there investigation came up that he did nothing wrong.... yeah, its disgusting....basically in the dental and medical community it is a given that any kind of surgery you do, be it heart bypass surgery to a tooth pulling can lead to complications such as nerve damage and supposedly its not necessarily the dr's fault, just one of those things that happens from time to time that is an unfortunate rare thing, blah blah... atleast that is how they look at it...
me said:
Well my pain has been pretty constant. Some days are wores than others but I do have the pain EVERY day. I still take 3000mg of neurontin. I don't think I could live without it now. I don't take the tegretol anymore. It helped the pain some but when it wore off the pain was intensified terribly. My pain in in my upper teeth. Three teeth are missing there because I kept thinking it must be the next tooth that is hurting. My pain starts out in the morning kinda feeling like I have a splinter in my gums. Then later in the day it feels like a terriable toothache. Klonipin really helps but this Neuro will not prescribe but one .5mg a day. That is not near enough. I'm trying to get into a new neuro but I prolly can't get untill Arpil. I wrote a letter to the dentist that did this to me. He wrote back saying sorry but he did nothing wrong. How do you deal with your pain without meds??
Lots of vitamine B, lots of niacin acid
My pain is mostly in the gum right next to the next tooth. It always travels to the next tooth. Before I was diagnosed I had two teeth pulled thinking the pain must be in those teeth.
Scared & Angry gal said:
Hi "me": good for you for writing a letter to the who did this to you. sorry he had such a crappy response. They are so afraid of getting sued. There are days, I just want to go back into that oral office and scream to everyone in the waiting room, run out of here as fast as you can because an oral surgeon here gave me nerve damage." I'm sure they would call the police , and then I would leave, but it would sure be cathartic. Just a little fantasy I go through my head from time to time,lol...Why am I not on meds? Basically, mine doesn't sound as bad as yours , however, I am wondering that perhaps in 2 yrs mine will get as bad. On March 7th, I have an apt to get an upper right molar extracted, it is on the opposite side of the nerve damage site and I got the nerve damage during an upper left molar extraction. My right upper molar started to hurt after a cavity was filled and I guess the filling did go close to the nerve pulp and although it hurts like hell and I have been putting this off since the filling was done which was late Oct....Advil takes the pain away, so I am pretty sure, the pain is coming from a bad tooth and not trigeminal pain. The dr. wants me to go on meds and I tried trileptal, got violently sick after 3 times and I took Topamax which gave me a 100 degree fever for 2 days. After the October filling I experienced mild to moderate electric shock like zingers in half my teeth on one side and also I had pain in a lot of my lower teeth on the one side as well. Super sensitive all of a sudden to just breathing. This lasted a month and then it went away. I am still getting weird in lower teeth on one side, but it is so weird, it only starts in the evening, I shouldn't say only... mostly.....So, your pain in the upper area, is where the tooth used to be , but aren't anylonger???? so the pain is really in the empty gum area???? Do you have any numbness? I sometimes have some pain in the empty gum area where my molar uses to be and now I am experiencing more and more pain in the nearby tooth of the nerve damage extraction site. It is partially numb and then I will still get this weird pain that comes and goes, and it feels very deep and has a pressure to it as well. You can perhaps get more Klonipin from your Pcare provider, however, just be careful, Klonipin can be addictive...So, to answer your question of how I am dealing with pain without meds, my pain is on/off again, so it is bearable for now, I am just very scared that the next dental work coming up, which is another filling and this other tooth extraction... if my pain level and electric shock systems will come back with a vengeance. Did your pain get worse after each extraction??? In the book, striking back, it explains, just want you said, that if the pain was trigeminal nerve related and you pull the tooth.... then you will still have the pain...it will just move to either the gum area where the tooth was, or it will move to the next nearby tooth.... anyways, did you have this level of pain 2 yrs ago or did it gradually get worse???? thanks so much !!! Elvera :)
oh, btw, I didn't write a letter to my oral surgeon who did this to me, but I did file a complaint against him with the State department of licensing and regulation where he got his license to practice. I'm sure you still have time to do that if you want...They did an investigation and I got a small post card from them, lol, stating there investigation came up that he did nothing wrong.... yeah, its disgusting....basically in the dental and medical community it is a given that any kind of surgery you do, be it heart bypass surgery to a tooth pulling can lead to complications such as nerve damage and supposedly its not necessarily the dr's fault, just one of those things that happens from time to time that is an unfortunate rare thing, blah blah... atleast that is how they look at it...
me said:Well my pain has been pretty constant. Some days are wores than others but I do have the pain EVERY day. I still take 3000mg of neurontin. I don't think I could live without it now. I don't take the tegretol anymore. It helped the pain some but when it wore off the pain was intensified terribly. My pain in in my upper teeth. Three teeth are missing there because I kept thinking it must be the next tooth that is hurting. My pain starts out in the morning kinda feeling like I have a splinter in my gums. Then later in the day it feels like a terriable toothache. Klonipin really helps but this Neuro will not prescribe but one .5mg a day. That is not near enough. I'm trying to get into a new neuro but I prolly can't get untill Arpil. I wrote a letter to the dentist that did this to me. He wrote back saying sorry but he did nothing wrong. How do you deal with your pain without meds??
Bah said: Dear Scared and Angry -- the anti-inflammatory is Mobic/Meloxocam, 2/day.
Scared & Angry gal said:Hi "me": good for you for writing a letter to the who did this to you. sorry he had such a crappy response. They are so afraid of getting sued. There are days, I just want to go back into that oral office and scream to everyone in the waiting room, run out of here as fast as you can because an oral surgeon here gave me nerve damage." I'm sure they would call the police , and then I would leave, but it would sure be cathartic. Just a little fantasy I go through my head from time to time,lol...Why am I not on meds? Basically, mine doesn't sound as bad as yours , however, I am wondering that perhaps in 2 yrs mine will get as bad. On March 7th, I have an apt to get an upper right molar extracted, it is on the opposite side of the nerve damage site and I got the nerve damage during an upper left molar extraction. My right upper molar started to hurt after a cavity was filled and I guess the filling did go close to the nerve pulp and although it hurts like hell and I have been putting this off since the filling was done which was late Oct....Advil takes the pain away, so I am pretty sure, the pain is coming from a bad tooth and not trigeminal pain. The dr. wants me to go on meds and I tried trileptal, got violently sick after 3 times and I took Topamax which gave me a 100 degree fever for 2 days. After the October filling I experienced mild to moderate electric shock like zingers in half my teeth on one side and also I had pain in a lot of my lower teeth on the one side as well. Super sensitive all of a sudden to just breathing. This lasted a month and then it went away. I am still getting weird in lower teeth on one side, but it is so weird, it only starts in the evening, I shouldn't say only... mostly.....So, your pain in the upper area, is where the tooth used to be , but aren't anylonger???? so the pain is really in the empty gum area???? Do you have any numbness? I sometimes have some pain in the empty gum area where my molar uses to be and now I am experiencing more and more pain in the nearby tooth of the nerve damage extraction site. It is partially numb and then I will still get this weird pain that comes and goes, and it feels very deep and has a pressure to it as well. You can perhaps get more Klonipin from your Pcare provider, however, just be careful, Klonipin can be addictive...So, to answer your question of how I am dealing with pain without meds, my pain is on/off again, so it is bearable for now, I am just very scared that the next dental work coming up, which is another filling and this other tooth extraction... if my pain level and electric shock systems will come back with a vengeance. Did your pain get worse after each extraction??? In the book, striking back, it explains, just want you said, that if the pain was trigeminal nerve related and you pull the tooth.... then you will still have the pain...it will just move to either the gum area where the tooth was, or it will move to the next nearby tooth.... anyways, did you have this level of pain 2 yrs ago or did it gradually get worse???? thanks so much !!! Elvera :)
oh, btw, I didn't write a letter to my oral surgeon who did this to me, but I did file a complaint against him with the State department of licensing and regulation where he got his license to practice. I'm sure you still have time to do that if you want...They did an investigation and I got a small post card from them, lol, stating there investigation came up that he did nothing wrong.... yeah, its disgusting....basically in the dental and medical community it is a given that any kind of surgery you do, be it heart bypass surgery to a tooth pulling can lead to complications such as nerve damage and supposedly its not necessarily the dr's fault, just one of those things that happens from time to time that is an unfortunate rare thing, blah blah... atleast that is how they look at it...
me said:Well my pain has been pretty constant. Some days are wores than others but I do have the pain EVERY day. I still take 3000mg of neurontin. I don't think I could live without it now. I don't take the tegretol anymore. It helped the pain some but when it wore off the pain was intensified terribly. My pain in in my upper teeth. Three teeth are missing there because I kept thinking it must be the next tooth that is hurting. My pain starts out in the morning kinda feeling like I have a splinter in my gums. Then later in the day it feels like a terriable toothache. Klonipin really helps but this Neuro will not prescribe but one .5mg a day. That is not near enough. I'm trying to get into a new neuro but I prolly can't get untill Arpil. I wrote a letter to the dentist that did this to me. He wrote back saying sorry but he did nothing wrong. How do you deal with your pain without meds??
I live in a state where M is illegal. But I have tried it recently to help relieve the pain when I just can’t take it any longer. But after two years now I will have my first appointment with a pain management Dr. Now I am afraid they will do a drug test and think I’m a drug seeker. I’d rather not smoke the stuff if I don’t have to. What should I do???
if the pain management dr. is good, he or she should understand. you mentioned you didn't like it when the tegretol wore out and then you felt to much pain again.... well, I guess they have slow release tegretol as well. well, its weird the difference of a couple of days, because now I am in constant Pain as well, since about 4 days ago or so, jaw pain and all my teeth on the right lower side hurt like hell, and it seems like they switch, one day one hurts the worst, next day the one next to that one, hurts the worst...Bring along paper work to your new pain management dr that lets them know your diagnosis, etc...marijuana shouldn't be a big thing to them... they are mainly concerned if you are or want to high amounts of oxycotin, etc...
I hope this pain management doctor is knowledgeable AND sympathetic to your pain. I've had both. One doctor was like the show "House" - a horrible disposition and made me feel terrible. He had NO idea how devastating and incapacitating my pain was. Then I found another doctor who believed me, trusted me and made me feel safe. The typical medications to treat TN or ATN are incredibly harsh on the organs. I've had someone suggest I inquire about Marijuana but currently the Methadone is doing what the pain doctor thought would happen - it calms the nerve progressively so now I take less than when I first began treatment. I wish you well so you don't live with the anticipation of pain. Bah
Your story Bah gives a lot of us reason to hope!! And you are even taking less than you did originally!! I am seriously thinking I want to go the methadone route now. Two questions: 1) so, I just type in Pain management specialist or Pain clinic to find one in my area?? You mentioned anastecialogist (sorry bad spelling), is this what I should be looking for in the provider?? That he is an anastecialogist?? Will my insurance help pay for the methodone or do you pay out of pocket? Lastly, do the anti inflammatory meds give you an upset stomach? Is the methodone addictive in the sense that you would go through withdrawals (other than pain coming back) if you stopped? I am trying to be open minded when it comes to treatment because as you mentioned , the traditional meds for TN have risks as well.
I am so very disappointed. I went to my first appointment with a pain management Dr today. He will not prescribe to me what I know helps…Klonopin. He said no it is addictive. He told me to continue taking my Neurontin and he added Cymbalta to that. I don’t think that is going to help my ATN pain. I am so down, but I won’t give up. Got to find the right Dr…as I live in pain.