I am so thankful for finding this website. I am a new member...My Story-May 2012 I had 3 dental procedures done, cleaning, 2 crowns and a tooth reparied that broke. This was all done within a 3 weeks period. The pain was slight at first, then after visits to my dentist, periodenist, 2 ENT's and a GP the pain got worse. Every Dr had a different opinion of what I had from TMJ, Acid reflux, sinsus problems to this is mental! I was finally sent out of town (live in a very small town) to a Neurologist who did lots of blood work and an MRI. All of which came back normal. This Dr. told me about TN and believed from what I was feeling that I have this. I have been on several medications and now trying acupuncture. None of this working very well. Right now Gabapentin (sp?-sorry) which I take twice a day. It does nothing for the pain. My Dr now wants to try Cymbalta ..which my insurance is fighting. I sit here in pain everyday while an insurance company decides whether I get to try this for relieve! I'm so frustrated and to be very honest depressed. I have not done a full day at work in months. I try to explain the pain to my family but I don't think they get it because I look normal. Nothing on the outside can show them how I am feeling. For 6 months I have had dull, burning pain on the left side of my mouth in the gum area where a wisdon tooth would be, neck, jaw and shoulder pain. I wake up feeling somewhat ok but after a shower and brush my teeth the pain is back. I am scared that someone is missing something and I actually have some sort of cancer because that is the only thing I would think can hurt this badly. I take vitamins - tons of them mostly B's, Gabapentin, aleeve and when I just can't cope Lazapam. I don't know how to deal with this pain anymore...does anyone have a suggestion on something that can help give some relief to the gum pain..? Thank you again for the site...Jacquie
Im sorry for your pain! Its awful I know…try an icepack for 20 min I do mine on the back of my neck if gabapentin isnt helping ur pain tell the doct. It made me worse so I got off the jaw pain is the worst I feel like I wana rip my teeth out…my ativan(lorazapam) seems to help some of the pain
gabapentin did not help me until I increased the dose. then it began to help. if you’re taking it twice a day (w/o side effects) see if your dr will support increasing your dose. you cc an take pretty high doses 3-4 hrs apart (as long as no side effects). I take it 4x/day & most of the side effects wore off quickly. make sure you have a dr that knows how to manage this stuff: they need to have experience. guesswork is not helpful for this disorder. it took me months to find a dr who had experience & I had to travel 5 hrs to find him.
I agree with mrl you really have to find the right Doctor Neurologist that works with you, is sympathetic to your pain and tries different meds and dosages. It took me a long time to get the right mix it is just trial and error. I am on Carbatrol, Lyrica, Nortriptyline, Clonazepam, and Pristiq for depression. Also had the Gamma Knife Radiation done about two years ago (with no success). I am now on morphine too but I would only suggest that as a last resort I have had this condition for about 5-6 years now. Now I am getting break through pain and I know I do not want to go up on my morphine so my next place to look is another procedure probably the one where they go through your scull behind your ear and put some kind of material between what ever is hitting your nerve (Decompression). So it is a process as you will see by most others that have this ATN or any type of TN. I hope this helps. And I hope you start feeling better. Monica
Hi Jacquie,
I'm really sorry to read about your pain. You mentioned acupuncture, actually I find that it helps my ATN, but I had to find the right doctor to do it, thi first time I tried acupuncture it acually made my condition worse. If you want to continue in this direction I'd suggest that you ask around for recommendations, try to find someone who's treated A/TN patients before. I also realized that when I have a pain attack the muscles in my jaw and neck are really tense. My physiotherapist taught me how to release the muscles, which also helps - actually, any kind of massage, or just holding a couple of fingers against the spots which are in spasm for a few minutes and breathing deeply while at it helps. Lyrica and antidepressants is my combination of meds, they help althought not 100%. Good luck with your treatment!
Oli
It definitely sounds like you have TN and it is hard to treat...Mine also wasnt started by dental work...I have had a prcedure where they cut the nerve...please..please do not have this procedure done....There are too many things that go wrong...as has happened to me....I take Lyrica...Triliptal, Amaltryptaline, and I also have morphine for when it gets really bad...Now Lyrica is less harmful and you dont have to take as much of it...I found this last year after suffering from ATN for 6 years...This site saved me from drastic measures...There are some amazing people on this site...and all have helped me considerably.....I know its early days for you...trust me...I know....but try these other drugs and see if they help...good luck....we will all be thinking of you xxx
Hi Jacquie. I have 24/7 pain in my upper right teeth, and the only thing that has really helped me is Amitriptyline at 100mg/day. It is well known for its abilities to help with neuropathic pain. Of course if you're getting the shocks, you should tried Tegretol.
Also, Klonopin is a med in the same family as your Lorezepam. It helps with "burning mouth syndrome", and I find it helps with the burning aspect of the pain. Plus, it helps with anxiety, and you only have to take it as needed. (though I take it every day)
Hi, I am sorry for your pain. My pain started in the gum and I know how painful it Is . I went into depression because the pain was so excruciating and no medicines seemed to work. Eventually I was diagnosed TN. I had also tried acupuncture but unfortunately, it didn’t work for me . However, it is very strange every individual reacts differently to the medicines and other cure. You may have to keep trying until you get the right combo. Lyrica, Clonazepam , Amitriptiline , lamoTRIgine and carbamazepine work for me.
Your family and friends may not understand how you feel because you don’t look sick, just tired. I remembered when my pain level reached 8, I refused to open my mouth and I looked sulky and moody, just like a naughty girl. I was always frowning .I answered in monosyllabic and embroiled in all the misunderstanding and wrath. Therefore I came to this site and made friends here. At least , the members here understand and have kind words and we don’t feel so lonely.
I went for a MRI a few months ago and the film reveals a nerve compression. I hope our experience helps you to find an answer.
Warmest regards,
Seow
Hi Jacquie,welcome to this awsome sight.I am so glad you found this site early in your diagnosis. Your story is sadly so very familiar to me, it is my story as well,starting 6 years ago. I have tried the meds you have mentioned and many more. I hope the accupunture works for you,it did for me a short time. I will tell you straight, spare you a lot of grief and years of pain Be firm with your GP or your neurologist.If your mri was normal as many of us ATN people are, insist on a referral to a neuro surgeon or an otolaryn neurologist as soon as possible. See of you are a candidate for Cyberknife radiostatic procedure.
I had ATN for 6 years and it is so very difficult to get to the right place people just don't know what to do with us because we "look fine" but we are screaming inside.
My procedure was successful,I am ;pain free! I can hardly believe it some times.
good luck and my prayers are with you
Latte Lady
Hello Latte Lady,
The procedure you state Cyberknife radiostatic is that the same as Gamma Knife Radio? I am so happy that the procedure worked for you Congrats to you. Where did you have it done at? I need some help my Gammaknife procedure did not work for me. I had it done at Burrows in Phoenix AZ.
Thanks to someone that found relief!!
Still waiting Monica
(I just had another great moment my dog laid his head on my foot it seems he knows I am down)
Is the Gamma knife the same as cutting the nerves??? If it is please be careful...because a bad surgeon cut my nerve and left me with Anesthesia Dolorsa and believe me that is far from fun....and .....to add insult to injury I am finding that the TN is returning.....and I had this procedure done in Feb this year.....wont into details....but my surgeon back in Spain did say that it was banned in Europe....apart from France...which is where I had this done...I have found out...to my deep cost...that getting the right surgeon is 50% of this dreaded affliction....My surgeon down here in Spain is fantastic...and helps me no end...Sadly because of the butcher in France I cannot even be considered for a MVD for at least 2 years.....the MRI scan shows where the nerve is tangled in arteries and veins...so it makes me so very sad that I had this procedure done in France and didnt come home to Spain....but I was in so much agony...more than in the 6 years Iv had this ATN...and for the first time had to go to A&E.....the rest sadly is history....If I hadnt have been like a wounded animal screaming in pain...I would never...EVER agreed to having anything done in France....let alone cutting my nerve....amnyway too late now its done...but please please ...get the right surgeon....it will help you no end...and remember this group...they saved me....good luck xxxxx
Hi,
I don't think the Gamma knife is the same as cutting the nerves. Gamma knife is not banned in the Czech Republic, although neuro surgeons prefer to do MVD if the patient is youngish and generally healthy (or so I read), my guess is it is the same in the rest of Europe. I'm really sorry for what happened to you in France, Carol, I know a man in pain will do/agree to just about anything to relieve the pain. I can imagine that it's extremely hard psychically....the fact that you had something done and you can't go back in time and think it through again. I kept torturing myself for months thinking of different scenarios of what I could have done...it was so tiring. I still have my moments now, but they're more scarce. I really wish that you and everyone else who suffers with AD, TN or ATN will get some relief soon.
Take care xxx
Carol Harmer said:
Is the Gamma knife the same as cutting the nerves??? If it is please be careful...because a bad surgeon cut my nerve and left me with Anesthesia Dolorsa and believe me that is far from fun....and .....to add insult to injury I am finding that the TN is returning.....and I had this procedure done in Feb this year.....wont into details....but my surgeon back in Spain did say that it was banned in Europe....apart from France...which is where I had this done...I have found out...to my deep cost...that getting the right surgeon is 50% of this dreaded affliction....My surgeon down here in Spain is fantastic...and helps me no end...Sadly because of the butcher in France I cannot even be considered for a MVD for at least 2 years.....the MRI scan shows where the nerve is tangled in arteries and veins...so it makes me so very sad that I had this procedure done in France and didnt come home to Spain....but I was in so much agony...more than in the 6 years Iv had this ATN...and for the first time had to go to A&E.....the rest sadly is history....If I hadnt have been like a wounded animal screaming in pain...I would never...EVER agreed to having anything done in France....let alone cutting my nerve....amnyway too late now its done...but please please ...get the right surgeon....it will help you no end...and remember this group...they saved me....good luck xxxxx
Thank you.....This site has been a lifesaver for me...I read through what different people say...especially when Im having a bad day....The thing that hurts me the most is that I actually did this to myself....I agreed to a procedure in a foreign country...with a surgeon who could not speak english..or if he did...he didnt speak it to me.....The ATN was done by the dentist....nothing I could do about that....but severing my nerves....that was down to me...My only...and I mean my only thing in my defense is that I was in so much pain...and even the morphine they put me on took 48 hours to numb the pain...I would have agreed to anything in that hospital....too late for me...but I hope if people know about the nerve severing procedure they will please please think twice because it dosnt always work...and the outcome can be worse than the ATN...and I NEVER EVER thought I would say that....take care xxxx
Welcome Jacquiea! It’s crazy how we all have different “stories” but they are all so much the same! I’ve had ATN since Feb of 2010 & still feel exactly like you. Just keep trying different meds & try to find someone that at least acts like they understand. Lol!! Also remember that everyday is a new day. U will have bad pain days & bad depression days but u have to try ur best to keep ur head up!! (Can u tell that I’m having a good day so far?) I know it might/will change as the day goes on but I’m trying to stay positive which I think is the hardest thing to do. 
at least we have found this web site with people that do understand. I hope u have a great day today!!
So sorry for what you are going through. I was like you wondering if I had face cancer or something weird like that. I took me a few trips to different doctors and ER's before someone finally figured it out. I could not believe pain like this existed, I was depressed, angry (still am there) and every other emotion I could think of. It does get better, I have atn and found relief with some meds, but ended up having an MVD and am pain free. You will get relief at some point, it just takes time to find what is right for you.
I understand your frustration with insurance , I work for an insurance company. I am lucky that my company is very liberal about paying claims, but some can be downright awful. I am not in the medical end, because I couldnt take it, I agree that an insurance company shouldnt be determining treatment...pisses me off big time. There are things you can do, call them, state your case, and if necessary they do have appeals boards in the US that can help as well.
Hope you feel better soon
Wendy
Hi Jacquie and welcome to your new House of Pain! It's always awful to learn of another joining this ( select ) group. Of course you have my profound sympathy and I don't say that lightly. It's a difficult thing (ATN ) to deal with. What helps one will not help another. The best thing, besides the unqualified non-judgemental support &underdstanding, this site provides is the number of approaches that peolple have tried.. it gives you something to suggest to your doctor and perhaps try.
I've had ATN for I guess 7 years now, on the LH side. Like you thru relatively normal dental work. I had a minor filling in Sept his year and bingo! Yes now I have it on both sides.. if one side is not hurting the other side is. I have the pain with moderate nausea, pretty well continuosly. I don't know which is worse, nausea or pain. I've tried various drugs ... so far no help.
A point on pain relief, I tried the morphine / oxycotin route..... yes it helps BUT as time goes by, say every 4 -6 weeks, you have to up the dose...... you end upon a high dose and still needing more to stop the pain. Then you have to get off the stuff!!! And that is misery!!! So now I take a little Endone ( oxycontin) when I've finally had it with the pain nausea... usually for 2 days or so a week. I struggle thru the week just holding out until I can take some more Endone... I put it off as long as possible and use a little as possible to preserve its effect. It's almost like recreational use because frankly it is the only time I feel normal, which, when your usual "normal " is pain/ nausea, is because it feels so good to be relatively unburdened from this damn thing for a few hours!!
I sincerely wish all the best for you and will follow your adventures in this exciting new environment you find yourself in!!!!
Hi Jacquie..
As Craig said...welcome to the website....I agree with everything said...How can a minor thing like a trip to the dentist have such devastating effects on your life...and I was worried about a toothache....God I would have let mine fall out of my head if I knew what was in store for me this past 6 years....I think the most devastating for me ( apart from the pain) is that no one can understand just how bad you are...Its a bizarre situation...If we had cancer....something tangible that our family and friends understand...I am sure we would get more support....I find myself so much less patient with people these days who moan about stupid things like a cold...cough or even flu....I want to shake them....and scream ...LOOK WHAT IM GOING THROUGH....I dont obviously....I say nothing.....People think Iv got a migraine...I dont care what they think anymore...I tried to lead a normal life until surgery in Feb this year....The surgeon mucked up...and now Im left with a more dibilitaing form of this that ATN....I never thought I could ever say that....AD...never even heard of it...who would think that anything was worse than ATN....well now I know different....so before you go down any route of surgery research research research....you can never do enough of that...Sadly by the time I found this site...I was out of my mind with breakthrough pain that really didnt respond to any drugs...This was the first time in 6 years that the meds didnt work..Now reading your blog it seems that you have TN only....Now MVD does work better on TN...not so great for ATN....Im on Lyrica.....Triliptal......Amaltriptaline.....Lexatin......this taken 3 times a day.....I cope...I know I will never be pain free...I know this is for the rest of my life....Its daunting....but what my choice...Suicide to get away from the pain...NO........we have to carry on....Once I knew this...I handled it better....but there have been times when even I have thought about leaving this planet.....only for a brief time.....common sense then brings me back...I try really hard to get through each day/week....and you have to understand that there is no cure for ATN....AD..but there is TN....If you really find that you cant cope and drugs are not working...try and see if you can have MVD.....Then hopefully your friends and family will realise just how serious this illness here and will hopefully give you a bit more support.....you take care...x
latte lady said:
Hi Jacquie,welcome to this awsome sight.I am so glad you found this site early in your diagnosis. Your story is sadly so very familiar to me, it is my story as well,starting 6 years ago. I have tried the meds you have mentioned and many more. I hope the accupunture works for you,it did for me a short time. I will tell you straight, spare you a lot of grief and years of pain Be firm with your GP or your neurologist.If your mri was normal as many of us ATN people are, insist on a referral to a neuro surgeon or an otolaryn neurologist as soon as possible. See of you are a candidate for Cyberknife radiostatic procedure.
I had ATN for 6 years and it is so very difficult to get to the right place people just don't know what to do with us because we "look fine" but we are screaming inside.
My procedure was successful,I am ;pain free! I can hardly believe it some times.
good luck and my prayers are with you
Latte Lady
To latte lady: I am glad something worked for somebody. Did you ever have MVD? Did you have nerve blocks first? Which ones and did they work? You had Atypical pain. Did that include ear pain and temple and check pain also? Sorry for the questions but it seems from what I have read we are all a little different. Wind helps me while others it causes more pain. Just trying to find out what is next for me.
Oh Hell Carol, that ( your write up below) is just awful. I do feel for you and I trust you know that being a fellow sufferer ( ATN, now both sides for about 7 years) I really mean it and can empathise. Every day is a bloody struggle. Each night you sit down and think, "One more day done... ". I hear you on that suicide comment. Every morning you get up and wait to see how bad you feel.. sounds like a negative attitude, but when you've had it for many years like you it becomes the way you function, like brushing youe teeth every morning.
And psychologicaly it screws you up. This unending pain / nausea. It changes how you look at everything, it changes your personality as you observe. You were once a nice fully functioning woman, and now you've become angsty and intolerant, having to control strong emotions generated by dealing with an uncomprehending "public' & friends. In my case I know I've become a bit of a reclusive nutter. The odd hour or so when I use pain relief ( Endone- oxycontin or something like that) off I go like a mad man quickly & manically squeezing as much as I can into the few moments of ease in my head. This is living? Ha! But it is the game we now play... up in the morning, struggle all day, bed at night...
A question if you don't mind. what is the AD you refer to? Pain from sections of face where the nerves are supposedly dead? Al the best to you!! Craig.
Carol Harmer said:
Hi Jacquie..
As Craig said...welcome to the website....I agree with everything said...How can a minor thing like a trip to the dentist have such devastating effects on your life...and I was worried about a toothache....God I would have let mine fall out of my head if I knew what was in store for me this past 6 years....I think the most devastating for me ( apart from the pain) is that no one can understand just how bad you are...Its a bizarre situation...If we had cancer....something tangible that our family and friends understand...I am sure we would get more support....I find myself so much less patient with people these days who moan about stupid things like a cold...cough or even flu....I want to shake them....and scream ...LOOK WHAT IM GOING THROUGH....I dont obviously....I say nothing.....People think Iv got a migraine...I dont care what they think anymore...I tried to lead a normal life until surgery in Feb this year....The surgeon mucked up...and now Im left with a more dibilitaing form of this that ATN....I never thought I could ever say that....AD...never even heard of it...who would think that anything was worse than ATN....well now I know different....so before you go down any route of surgery research research research....you can never do enough of that...Sadly by the time I found this site...I was out of my mind with breakthrough pain that really didnt respond to any drugs...This was the first time in 6 years that the meds didnt work..Now reading your blog it seems that you have TN only....Now MVD does work better on TN...not so great for ATN....Im on Lyrica.....Triliptal......Amaltriptaline.....Lexatin......this taken 3 times a day.....I cope...I know I will never be pain free...I know this is for the rest of my life....Its daunting....but what my choice...Suicide to get away from the pain...NO........we have to carry on....Once I knew this...I handled it better....but there have been times when even I have thought about leaving this planet.....only for a brief time.....common sense then brings me back...I try really hard to get through each day/week....and you have to understand that there is no cure for ATN....AD..but there is TN....If you really find that you cant cope and drugs are not working...try and see if you can have MVD.....Then hopefully your friends and family will realise just how serious this illness here and will hopefully give you a bit more support.....you take care...x