Trigeminal Nerve Damage

Hello to all sufferers. Used to be happy, outgoing, adventurous and PAIN FREE until March, 2004. I had a root canal done by a dentist that must have wanted to milk my full coverage dental insurance. All I had was a tooth (#3 back upper molar) that was sensitive to cold which started in the 1990’s after a dentist re-did a filling. All I had was a tooth that was sensitive to cold, NO PAIN, or infection. The root canal caused pain that I never had and was supposed to be normal afterward. It never went away. The pain escalated and became unbearable at times. Been to several dentists for second opinions. Everyone said there was nothing wrong with the root canal. Then had a young dentist drill through a porcelain crown to see if there could be a hairline fracture, I was in the chair for 3 hours. Eventually had the tooth pulled and pain became much worse. It spread to all other areas of face, teeth, head and ear. Went to countless doctors of every kind. My story could be 10 pages long. Since then I am still suffering and my life is totally changed. The first 2 years were the worst. All the doctors say I had a pre-existing condition and I don’t believe this. I have been diagnosed with trigeminal neuralgia, trigeminal neuropathy, centralized mediated pain, pre-existing migrane condition and so on. Wish I knew what, why and how this happened. How many other people get nerve damage from a dental procedure.
I am now being treated for trigeminal neuropathy from a neurologist that gives me drugs. Started with tegratol and then switched to a gradual increase of 3600 mg. Neurontin. Been on 1800 mg Neurontin for 4 years and now I am down to 1200 mg. (Hate the Side Effects), but pain is getting worse now. Never wanted to try any of the other antisiezure drugs or antidepressants they use. I also take darvocet, ultram, klonopin for sleep and anything over the counter as needed. Also use natural alternatives which I think are very helpful. Now my pain is off and on and everywhere with all different types. My teeth, upper jaw, sinus, eye, head and ear and can go from level 2 to 9. I learned to live with the pain, but I can’t stand the numbness and what it is doing to my facial appearance. I get strange swelling, redness at times and I am losing muscle tone in my face. Seems to be getting worse over time. I am very often unable to move my face and lips normally. It affects, chewing, smiling, laughing, and talking. This makes social situations and eating difficult. Is anyone else with neuropathy experiencing this? Could I have some other diagnosis?
I have good days and bad days though. Sometimes more good and sometimes more bad. I think the weather affects this also. I would be scared to get a nerve block or Botox or any other kind of surgical treatment because I am afraid it would just create more trauma to the nerve and make me worse. Any feed back, answers or suggestions would be greatly appreciated. Good luck to everyone. It has been 5 years for me.

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68 replies. Join the discussion

Hi neversame, I also have experienced pain following a dental procedure but I was fortunate to find a wonderful dentist who specializes in orofacial pain who has helped me tremendously.

There's a discussion of issues similar to ours here:
http://www.inspire.com/groups/rare-disease/discussion/trigeminal-neuropathy /

Hope this is helpful.

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Have you tried acupuncture? I had pain in my face, arms and legs and tinnitus from CNS nerve damage from meningitis and acupuncture helped tremendously.

Cathy

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I like your screen name. I did try accupuncture years ago for one treatment. It is hard for me to tell if anything is helping because my pain is constantly off and on. Nothing seems to cure me. I never went back because it is too expensive for me. I would like to try it again if I could afford it. Thanks for replying.

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Hi to you ,I have a very similar experience as you are having ,,, I have refused the antidepressants also,I was told we cannot stop your pain , we can only make you more comfortable mentally ,(my personality won't accept those pills ) I am afraid of systemic effects from many drugs ,,, I take three drugs and that is very difficult for me , your symptoms are also as mine are ,,, pain free until my dental procedure ,,, Nov, 13th 2007 never have recovered ,,, very scary to hurt all the time and not make your family suffer too ,,, so much help is not out there ,, and the looks on professionals faces ,when I tried to explain what I was feeling ,,, One neurologist I was referred too ,, cut me off when I tried to tell what had happend to me ,,, she said "well you knew this could happen when you had your teeth worked on, "I was devistated , and just stared at the floor ,,, she said you need to start waking up every day and enjoy the sunshine , and decide how you want to live your life ,,, the appontment lasted about 20 minutes for 325.00 dollars , she wrote out a prescription for 10mg, of amitriptline and said come back in three months ,,, (I thought Never !) and she left the room ,,, I was so glad I had brought my sister with me or I do not think anyone would believe that horrible visit ,,,, your story gives me a feeling of another person like me ,,, same symptoms ,,, trigeminal neuralgia , /trigeminal neuropothy ,,, It is an awful struggle to live like this ,,, there is no choice though ,,, ear pain, top and lower teeth pain , buring gums ,roof of my mouth , dead feeling of tissue , tongue feels like it is not mine , very painful numb lips gums , tongue ,,, and pain ,,, my facial expressions around my mouth on the right side are very week , my lip sags , my nose hurts on the right side also , it hurts to laugh and talk , I am a talker and a laugher ,,, I fake alot at work and with my family ,,, I usually have to hold my mouth alot when I talk and laugh ,, because my lip that sags rubs my #7 tooth which has been diagnoste as neuropathic tooth pain , even after a root canal , very painful , it is because trigeminal nerve damage can rear itself in the oral cavity , by way of a tooth or multiple teeth ,,,I have to leave work now , but I wanted to comment to you ,,, I understand every word you wrote ,,, I am living it too , 18 months now ,,, no improvement , my family matters everything to me ,,, so I cannot throw in the towel , no matter how much , I despise what mistake had taken place ,,, there is no legal help either ,,, it is all considered a bad result , not bad medicine ,,, you are definetly not alone ,,,I thought I was for a very long time ,,, now I know I am not ,,, Only think of getting through one day at a time ,,, or it is to scary to picture this never leaving ,,, I am happy to meet you ,, your not alone ,,, babytbear SUE in minnesota

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Hi BabyBear, thanks for responding. I read your whole story and thank you for your Inspiration. I feel so sad for you and all the others because this is still happening to people and most of the public are unaware. I have been living this for five years and my story is also too long to tell.
What kills me is that after it happened there was so much ignorance from the Endo guy that caused it and others that I went to for help. They wound up making my problem much worse. None said you have nerve damage and go to a neurologist. The endo actually tried to refer me for an apiodectomy and the other dentist said all my pain would go away after the tooth was pulled. I never had anything wrong with my tooth in the first place. To this day I will never rest until I find out what really happened to me. I have never got a straight answer from anyone. They all said I had a preexisting condition and the dentist did nothing wrong. Do you ever wonder what actually caused your damage. What did that new dentist do to cause your pain. Was it the injection. Was he too ruff in the procedure. You said you had other molars crowned previously and everything was fine until he did the front teeth. If these medical professionals that specialize in this pain would find out the cause of this and be truthful maybe it could somehow be prevented for others. I feel they all lied to me and that MONSTER was never held accountable. We are very few and far between and I understand the loneliness you all feel. Most people treat me like I am a wacko because they don’t believe me and can’t imagine this happening to them because most people are fine after they get dental work. I always feel like I am different from others and a lonely outsider but I try to live my life as normal as possible and keep it inside. It is nice to know there are others out there.
I am still exploring natural alternatives to this horrible affliction and would someday like to share them. I think they are better than the drugs, but if you need the drugs take them, whatever works take. They did help some but I don’t think I will ever be cured. Hang in there and don’t give up. Try to enjoy every good day you have. Because I think eventually you will start to have more good days. I think you need more time to heal. It hasn’t been that long for you yet. Stick with the specialists if you think they help you, but be careful. After what happened to me, I don’t trust anyone. It is not fair that you used your life savings for medical bills. I think you should have been compensated. I will pray for you and all the others that suffering. Good Luck.

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Hi to never the same! I am so happy to read your reply. We have been in the moving process at work, all last week and I was not able to respond to you. I felt bad about that , because I am usually more prompt. I do not have a computer at home , because we are rural 25 minutes outside of St. Paul, MN. We have a family business for 13 years now. My hours have been slashed so bad since this dental nightmare began November of 07. At any other job I would not be able to work anymore. I have been a strong rock of a person all my life. My last job was at the American Lung Association, I never missed work in 8 years (my dad was like that, don't miss work unless youre almost dead). I just turned 50 Oct.08 , and I always showed up for work. In the last 19 months my hours slowly dropped off to about 2 to 3 hours a day. I feel like a failure to my husband and my family and co workers , I am half of this business that we started. My husband was getting so mad at me in the beginning of this dental disaster, he would get frustrated and say to me " stop complaining , it can't hurt that long." Six weeks into it , he said "put orajel on it and move on." I have cried more from pain in 19 months than I have my entire life , I am strong, tough, and independent , "A ROCK." NOT anymore , I feel like road kill and lived. The pain is nothing I have ever imagined, somthing could feel like this in my mouth. I have my very strong ideas of what happened that caused my dental trauma. I have searched for answers all this time, that is what keeps me going. I am like you, I can not rest until I know . I have a problem solver personalty , that makes this extra difficult to spend every minute in pain. Always an 8 out of 10. I hate it, and I now know I have to accept this. The pain has given me empathy for all people who say somthing hurts. I believe them 100% no doubt. The transparency that is hidden from me, from professionals that I have begged for help from, It hurts my heart deeply. I know the names in my heart of the professionals who cared to listen and knew somthing bad happend. I know the names in my heart of 3/4's of the professionals who should not be in dentistry or the medical profession. I really thought life had tought me alot about people and the way people can be. But GOD obviously had so much more strength, He wanted me to gain after this (people / dentist caused clinical problem , patients of dentistry , or should I say customers of the dentist who sold dentistry to me, through fear of dentistry). Because these types of nerve damage are very rare, (should I say 1%, I have read different percentages) A dentist does not want to spend 20 minutes explaining the rare occurances of nerve damage to a patient. That would be half their work day , That does not comfort me or others like me who have had life altering nerve damage pain from procedures. No matter how rare it is. The majority of regular people with no medical training cannot fathom this result from nerve damage. You are not alone, nor am I, or others like us. We are not alone, just seperated by miles, thats the difference. I do not think medical or dental wants us in a room all together. I have to leave work now, my day is over. GOD is watching over us, we cannot give up! More to say later. BABYTBEAR <SUSAN FROM MINNESOTA>

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Neversame,

I totally understand all that you are saying. I am so sorry about all this! I have had several root canals, and I have 4 gold crowns on my molars - all this due to sucking on salt and lemons all my life. Sounds funny, but was a habit I had since I was a young child. It ate away at my enamel. I'm in my 50's, so I've had alot of dental work b/c of it. I just want to say one thing. It may not help you, but maybe just give you something to think about. I know for a fact that bad teeth effect your heart, because of the 'bad blood that gets into your blood stream from bad teeth. Especially if you let whatever is hurting go for awhile. It is proven that bad teeth can cause you to have a bad heart. I believe that. I at this time have everything taken care of, but, seems every 2-3 years it is something else going bad in my mouth. I can go to the dentist ok, but it is very expensive, even WITH insurance. I am fortunate enough that I am not having pain now, but I had some really sensitive nerve pain 2 months ago, went in, and a bottom molar with a past large filling, had cracked all the way across at the bottom of my tooth. They took out the old filling, replaced it with another material other than almagram, because witrh that crack there, that metal would have gotten into my blood stream! I didn't tell me that, but I just knew it. (Funny why they won't 'explain why' they are using a diffrent material!) They don't want to talk about the health risks with dental work.
I had a root canal done 3 years ago by my same dentist, (which by the way I do like him) but I had alot of things health wise happening before I had it taken care of. My fgaqce would break out, nausia, fatigue. I realized it had to be that tooth. (An old cap had come off, and I thought I was too busy to get it taken care of! So, I just kept sticking it back on with that pink denture stuff., lol!) I had everyting fixed and all my symptoms went away.
If I was you, or anyone else having problems, NOW, aftet the work has been done, I think I would try and go to either your family physician and tell them you would like to cleanse your blood, or find a 'Natural' doctor, and tell them the problem you all are having. I think that your blood is still contaminated, and you possibly have bacteria going through your system. Can you believe i came down with Bacterial Meningitis 2 months after I had my post replaced, new root canal done, and my old cap replaced with a new one! Yep, I think you all have some residual metals, and contaminated blood running around through your system. If you cannot get a doctor to listen to you, i'm sure you can search out cleansing your blood online. Just go to your local health food store, ask them of a natural doctor in your area. They should have some idea. Also, VERY IMPT .... brush brush brush! It's not all about just cavities etc. But the sticky plaque that cause the build up on your teeth, between your teeth, and gum lines, \that stuff is bacteria and when you don't brush, that crap goes into your system too! Our mouth is an organ in which alot of things are easily absorbed.

Hoped this helps, and good luck with trying this! :0)

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Hi babybear. sorry it takes me long to reply. I am slow at everything I do and don’t worry if you can’t respond to me right away. Very good point. They don’t want us in a room altogether. I feel so bad that you are suffering so much. Are you still getting treatment from Dr. Nixdorf. Are you still on the same drugs and that orahesive paste. I know how it feels to be half the person you used to be. I am blessed to have a steady fulltime job that is not that stressful. I also spend 2 hours a day by public transportation traveling to and from. I have been working there for six years and the people are pleasant. It’s a no brain job. I do the same thing everyday. There are opportunities to advance but you have to pass hard tests. The last test I took, I felt like my brain couldn’t focus and I totally bombed. I came out in tears. Ever since this happened my brain is not the same. I think its from the Neurontin or maby the nerve damage effects concentration. Not definitely sure. I have a bad short and long term memory and feel like its very hard to learn new things. Even afraid of school or classes. I am a forgetful airhead that loses everything. I lost all my confidence. If I ever lost this job, I would be doomed. As far as the pain is concerned, I just pop pills when I need them and I get through. The worst is being uncomfortable socially because talking, laughing and smiling can start up my pain. It gets lonely. I don’t get much support from the man I live with. He downs me for taking drugs, especially the Neurontin. Both my son and him blame the Neurontin for my changed personality and my constant sleepiness and they don’t realize that this nerve damage is really to blame. He calls my neurologist a quack. (I think the Nuerontin does help the pain because I noticed since December I cut down 600 mg. I have been having more and more bad days since and very few good days and taking more of the other drugs. I keep a pain diary) Think I might start to go back to normal dosage) My spouse doesn’t seem to realize how bad this is and how it psychologically affects people. I know that I need some type of treatment and so do you. Did you read the other discussions. Click on chilof60s. Did you read about the stent with topical medications. She is getting help from a doctor from the American Academy of Orofacial Pain. Did you look into that website. I know you said you have been to the mayo clinic. I am going to contact someone in Philadelphia that I never new about through their website. I won’t get my hopes up though. I talked to her doctor, Dr. Heir and he wouldn’t give me any answers as to whether the stent with topical medications would help someone like me over the phone. He said I have to come in for an evaluation and charge me $175.00. He is far from me and my insurance won’t cover it. I don’t have that kind of money. I would be willing to try the stent as long as there are no risks and if I can find someone that accepts my insurance.
Good Luck babybear and I hope you can somehow find more relief. (The Neurontin took a long time to work and the first two years, the suffering was so bad, just like you. I hope you will eventually adjust and your meds work bettter) We will keep in touch.

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Hello Carin,
Actually I have excellent teeth. Only had 2 cavities my whole life. I floss and brush everyday. No gum problems. Just a bad overbite. I have always wondered if that endo dentist put some kind of poisen in my system from that root canal. That has actually crossed my mind. But it probably would be gone by now. I have no medal or crowns in my mouth. Just one tooth with an old filling. If I went to my primary physician and told him I wanted my bood cleansed he would probably look at me like I am nuts. I will look it up on the internet though. When you have something like this you are willing to try almost anything. Thanks for the advice.

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Well, it was just a thought. I was feeling really bad before the extraction of the old post, because it was capped. I know I had some kind of bad bacteria leaking into my blood stream from the new procedure. It took a couple of weeks to feel better and my face to clear up from constant breakouts. I know that bad tooth was putting some dmamging stuff into my system.
Thanks for your reply!

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Another thing neversame. Sometimes a dentist has to give you an antibiotic for a couple of weeks before doing anywork, all because of an infection that can get into your blood stream. Infections can go undetected sometimes. Something is definately wrong because of that work I feel. I think you didn't get a good root canal, maybe the whole nerve did not get taken out the first time, even though it has been pulled now. That could be dead up there and seeping slowly. Sometimes doctors just like to hand out drugs to mask pain when they can't find a real cause.

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Hi Carnin, I was on different antibiotics from so many different doctors. I never even had any infection in the first place. Just a tooth that was sensitvie to cold. No one ever told me that one about a nerve that is dead up there and seeping slowly. They just told me I have nerve damage/neuropathy. I had MRI's and Cat Scans and nothing showed anything. This endo guy was a specialist. Not just some nobody dentist. I hope you never wound up like me or babybear. I imagine that this could put fear in a lot of people.
Thankyou for your input.

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neversame,

Sometimes you can have an infection that goes undetected.

I would go to the health store and get a homeopathic dental detox. Maybe that would help. I know ity sounds all too simple, but it's worth a try anyway. Also, be sure you are taking plenty of magnesium, folic acid, and panothenic acid .... You can read up on these to see what they do for your body!

Also, if you want to up your energy, and make sure your body is in balance ... eat lottsa greens, lightly steamed even if you like. You will be amazed! You need to balance your PH! If your PH is low, it can cause major problems. Type in how to balance your PH in your search engine, what foods to eat, and you will find alot of things.

Low acid PH is how ALL DISEASES START.

I Love the 'low sodium V8 - you can get it at walmart. It will balance my PH in nothing flat! I mix my liquid vitamins in with my liq minerals ... anything I want to put into it. If you juice, you can juice with it.

They have PH strips at the health food store. Read directions, I think you can do saliva or urine.

I used to be a fitness instructor ... and health has always been my forte'. Too bad I ate so many lemons before I learned what they did.

(Actually fresh lemon and lime juice will balance - out your acid PH! Sounds weird, but true.
Also, will BRAGGS Natural Apple Cider Vinegar with the 'mother' .. sold only at health food stores.

Hope something here will help you, anyone!

Carin ~

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Hi Carin, its funny you mentioned magnesium and apple cidar vinegar. My sister just gave me that kind of vinegar. I haven’t taken it regularly yet but I am going to. I also recently got magnesium from a vitamin store that I am starting to take. They said that could help my nerve pain. I totally agree that there are natural things you can eat or take that can be helpful. I am exploring herbs now. I already occasionally take Irish Moss and Lindseed which you have to cook. A man from Jamacia said that will help me. I really believe that stuff does help. I also take Omega 3fish oil, Vitamin Supplement for hair and soy milk. Now I am taking Calcium supplements, Magnesium, and Green Tea with honey. I think they do help, they certainly can’t hurt. Who knows, maybe that is why I get some good days. But nothing has ever cured me. Thanks.

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To neverthesame,

Have any non-presciption treatments like B12, heat, herbs, etc. helped?

I really don't want to take Neurontin due to emotional side effects. Could one with this disease function without taking this kind of medicine?
Have you tried any numbing shots in the facial area?
If yes, do they help?

I may have your same condition caused by a deep molar cavity dental procedure. Pain started right away and is only getting worse. Also have burning face, burning lip, jaw pain and eye area pain, though my vision is fine.
Have already seen an excellent 2nd dentist. However he has no solutions.
Also have seen regular general practitioners. However they seem to think nerves, but not what you have, even though it seems I have what you have.

Trying to see a neurologist.

Positive thoughts.

Ecuadorforest

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Hi Ecuadoforest

It seems like your condition just started. If more than one dentist doesn’t know what’s causing your pain then the worst thing you can do is let them create any more trauma like root canal or extraction. A neurologist will just give you drugs. Go on to the website www.aaop.org/ American Academy of Oral Facial Pain. Look for a specialist in your area who deals better with this problem and help you in the early stages and maybe you won’t have to wound up on drugs like me. Some of these doctors give topical medications with less side effects. Maybe your pain might eventually disappear. Vitamins and Herbs are the best thing you can do. Try all of the things mentioned in this discussion. They can’t hurt you. Heat is good also. The worst sign of neuropathy is numbness and tingling along with pain. I have never gotten a nerve block in fear it will make my problem worse. In your case I am not sure if a nerve block could help you or make you worse. Be very careful of what they do to you. Don’t ever get surgery! Unfortunately the last doctor I seen said that topical medications won’t help me and my insurance won’t pay for them. Drugs are my only hope he said. I am going to try something called Metanx for diabetic neuropathy. My primary doctor doesn’t think it will do anything but will let me try it. There is also another discussion called twowesties with other people with similar problems. Good luck to you. I hope you pain goes away.

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Hi to you ,,,Thank you for checking on me , that is very nice of you , this is Sue (babytbear) I have been having troubles , Back and fourth to the Univeristy of Minnesota , oral facial dept , with my Dr. Nixdorf , May 23rd on a Sat . morn, I woke up , and my lips and skin around my mouth were swelled up , and blistereds , and raw ,,, I spent two weeks putting vaseline on my mouth every ten minutes , not a clue what this new symptom was ,,, I finally went to urgent care at the Allina health system here in St. Paul , was treated for poison ivy ?? prednisone , zyrtec , allergy meds , and atarax , for anxiety and itching , at bedtime ,,, I felt like I was going insane in pain , besides all my nerve damage pain symptoms for 20 months now ,, the prednisone calmed the raw , blistering , painful lips down , I was so grateful , but when I got down to the last prednisones all the blistering and swelling returned ,, I was just beside myself , wondering , this is so insane ,, there is no way I can do this with everything else ,, this will break my back trying to cope , I went back to the DR, at urgent care and she was very hesitant that this is poison ivy ? she gave me a partial refill on prednisone and made me an appt with dermatology five days later ,, sure enough the prednisone was down to the last pills and the symptoms came back ,,, this was really giving me bad anxiety by this time about the middle of June ,, the dermatologist looked at me and said , I do not have clue what is going on with my lips and skin,,This is beyond my expertise , she stated . She said I should go back to the U OF M Dr. Nixdorf , I then called the neurologist , a DR. Evans and told all my symptoms , and that a pharmasist printed out side effects of the medicine, one of the side effects was oral lesions on the lips . THe Dr , Evans the neurologist put me on trileptol in Feb 09 300 mgs of trileptol , and it was increased three weeks to 450 mgs , to try to control the elec, shocks in my front tooth/crown before my breakout may 23rd , I also had my front top misery tooth /crown #10 removed /extracted in the end of April and I was wearing a plastic temp . brige on three teeth during this mouth swelling trouble . The tooth /crown had to be removed because the orignal dentist from Nov 07 who caused my dental trauma nerve damage , put a post in the tooth and somehow fractured the root of the tooth , that tooth hurt every day for seveen months form the minute he put the post in , it hurt even with novacaine when the post was put in NOv. 07,, the dentist's assistant said I would get use the post after the novacaine wore off , I was back the next morning crying about how much the post was hurting all the way up to my nose , and I went in twice a week for three weeks stateing somthing is wrong , my teeth you crowned are really hurting me and , my gums and my roof of my mouth and my lips hurt and burn ,,, and I cannot feel half of my top lip, I am getting electric shocks in my crown , zero help for one six weeks straight going in there ,, all he would do is sand the backs of the crown to try to make them feel more like my natural teeth , and gave me antiobiotics , my story is so long and so detailed , I could do a documentry of what can happen when you end up in a dentist office where the trusted dentist is really , selling dentistry with fear to patients who do not know any better except believe what the dentist is telling could only be true ,,, If I only would have had insurance he would have had to explain all the dental procedures he had done from the prevoius months up until the crown procedure . I had trustworthy and stupid and gullable writen across my forehead , and I paid with a check each visit , I think about what had happened and I break my own heart thinking about what a fool I was ,,, and I am stuck in a nightmare of mouth pain because of it , People told me , my family and co workers and friends told me he was taking advantage of me and there was no way my teeth were as bad as he said they were ,, well I am way off the track right now responding to you , I'm sorry , I only share my real sorrows with people who are understanding of this ,,, I do not torture my family and friends as little as possible ,, I made that decision , about three months ago ,,, they all feel too helpless ,, Anyway back to the neurologist , she stopped the trileptol , her nurse called in 50 pills of prednisone , and said call for an appt. when my symptoms are gone ,,, Well I have been to the U of M a couple times during this , episode of lip problems , but each time I was on prednisone , so they were unable to see the blistering and swelling going on , I could only tell what I went through ,,, I was taken off all my meds , , prednisone , zyrtec , atarax , , trileptol , to see if I was having allergic reactions , from any of them ,,, its been an awful two weeks with nothing but klonopin 4 times a day and two benadril at bedtime ,,, blistering and burning returned last Sat , . I went in the Uof M Monday morning , emergency appt, ( I was also picked for jury duty at the same time this past Monday the 13th , I felt so guilty not being at jury duty , and had to go to the Dr. Nixdorf instead . Washingtong County , jury was very understanding of my problem when I called , I am resceduled for Sept , for that , I am very patriotic , so it bothered me alot not to be there , Well DR, Nixdorf, had an oral pathologist come and look at my lips ,,, I do not think he was real sure either at this time ,,, He wrote a prescription for steriod creme to try since prednisone helped each time ,, I am useing that now for four days ,,, scared , only a little help from it , no blisterers , but burning , red and pain in my lips ,my lips feel like they are going to explode , all my symptoms of pain are very painful , with no meds , but klonopin , I have to go back on the July 27th to see what my mouth and lips are doing ,,, They are being slow to introduce any meds too fast , trying to see what my mouth /lips are reacting too ,,, (I am petrified I might being having symptoms of burning mouth syndrome ,?? ) that is what I am guessing they are being so careful about ,, I feel like I am being tortured with all my symptoms right now , electric shocks are back without the trileptol . I am just hanging on ,,, I really don't think even professionals who try to treat people with nerve damage know the horendous pain it gives off every minute , only people suffering with it know ,,, this is a shortest version I could come up with to explain how I am doing , you made me feel good when I got to my computer today here at work ,,, thank you for that ,,, I still have to respond to a reply from charlie on this posting board ,, I just have not felt good to do it yet , But I will ,,, Thank you for checking on me ,,, It means so much ,,, Susan Babytbear Ps , this reply is maybe a bit confuseing , sorry about that :o)

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i have bilateral facial pain in all three branches. my pain started spontaneously; i have had no dental work, trauma or illness. i also have TN ruled out with a thin slice MRI.

my doctors are dumbfounded. they cant figure out what is happening to me. i have no numbness, but pain in my scalp, forehead, cheeks and teeth.

i dont have a diagnosis. i take nortriptyline 50mg and lyrica 150 mg. sometimes i think it is helping but sometimes i am not so sure. the only way to know is to come off the drugs and i am not willing to experience stronger pain.

i live in boston and have access to literally some of the best doctors and equipment in the country. believe me fellow sufferers, it hardly matters; facial pain is so poorly understood by the medical community. no one can explain what is wrong with me, only that it is benign, no tumor, MS, etc. who cares if you cant get me out of pain!

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Hi all,
Just updating you all: I have my permanent bridge cemented in now, and the stent didn't fit anymore so I trialed going without it, and I am doing pretty well, so I decided to just stay on the cymbalta and ditch the stent. I am so grateful to Dr. Heir, I am improved so much that I will be returning to work next week.
I strongly urge you to seek out help from an ORAL PAIN SPECIALIST (aaop.org) before throwing in the towel.
And in my opinion, getting out of pain is surely worth $175, a car trip and a hotel room to go to an out of town oral pain specialist. I mean, we are talking LIFE CHANGING.
To Kristin in Boston (my favorite city in the universe!):
Did you seek out care from an Academy of Oral Pain Specialist? There are several in the Boston area:
http://www.aaop.org/index.asp?Type=B_BASIC&SEC={0BDDC3E4-2D06-466E-821F-B81 C1D10B347}
Good luck to all of you!
Best, Childof60s

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Hi Babybear
Don’t worry, you don’t have to thank me or apologize. I am glad to hear your long story although I am not glad for your pain but I can relate. Sorry it takes me long to respond. I read every word and I looked up burning mouth syndrome and trileptol. Our drugs (neurontin) are similar in side effects. At least you know now that the trileptol helps. I also take klonopin for when I have trouble sleeping. I am wondering if this problem your having with blistered lips and mouth is related to the nerve damage. I know I am not a doctor but I got and still get weird symptoms with my facial swelling. . I never thought it could be a side effect from a drug. (maybe it is?) My face and lips never feels pain just the inside of my mouth and upper jaw and teeth, head, sinus and ears. (burning , throbbing, inflamed feeling and numb also) Different spots than you. I also don’t get the electric shock pain that you get (I can only imagine), my pain is more radiating (starts out small and gets severe). Sometimes (almost always) I have these drool lines that look like a howdy doody puppet. I noticed this 1 year after it happened. I know its not from age because some days it looks worse than others. Some days my face looks almost normal (flat and smooth). I also get symptoms of Rosacia (not as much now). Redness from my nose down and the end of my nose is larger and bolus looking. I don’t remember ever looking like this years ago. I went to a dermatologist (another one of the many doctors I’ve been to) and when I told them my story, it’s the same thing. They get tight mouthed and don’t comment much. They just said “stay out of the sun”. I also get (on rare occasions now) soreness and inflammation in gums behind my two front central teeth and It feels like I burned the roof of my mouth with hot pizza. The spot where the tooth was pulled also gets very sore at times. In the beginning when this first happened they saw a slight sinus infection in my cat scan and a doctor prescribed (also been on many antibiotics) steroids to spray up my nose and it took away a lot of my head/eye pain and other types of pain symptoms at first making me think that if the sinus infection goes away I will be cured but my pain always came back. Then a neurologist told me to stop taking the steroids. They also said that the sinus infection was very minimal and wouldn’t be causing all that pain. Its like certain things make you feel better at first but then it comes back again. Its hard to tell what’s helping and what’s not and what’s hurting. Pain is always off and on for me and different levels. My newest pain sensation is starting from my two front teeth up into my nose. The lowers are hitting the uppers and pushing them outward. I think all this has caused a change in my bite and my teeth are drifting apart from the tooth that was lost from the unnecessary root canal. I read about what Charlie wrote and looked up cavitational osteonecrosis (NICO). Two doctors said I don’t have that and don’t worry, it would show up in the x-ray. What a terrifying thought about a bone infection and they have to cut inside your jaw bone. (Don’t ever get that!!!!)
It seems like our conditions are similar but in different teeth/spots and we both get wierd unexplaned symptems. That is my feeling. And our pain description is different. Your pain level is higher than mine now and you seem to have it more constant than me. Is it because I had this for so long that I am used to the pain or is my pain meds and other things help me more. On July 7, I seen a doctor for the first time associated with the (AAOP) American Academy of Oral Facial Pain), in my area, He is an Oral Doctor that treats this, so is Dr. Nixdorf ( I read about him also and he seems very qualified for your condition.) He agreed with my neurologist's diagnosis and he told me that the topical medications probably won’t help me and my insurance won’t pay for it. I told him my concern about my teeth drifting and my bite changing and he said he would not advise orthodontic work because of my pain condition and there is no physical therapy for my numb facial feeling and movement, it would only make my pain worse. VERY DEPRESSING. He also suggested an antidepressant. He said drugs are my only hope. I am also going to try a treatment they use for Diabetic Neuropathy (Metanx). Its folic acid supplements. I think you should look into taking vitamin and herbal supplements. They might help you in the long run. My pain has been better lately although I rarely feel completely normal. Not sure if its from going back to my normal 1800 mg. of Neurontin or the stable weather we have been having. Although, yesterday I had the excruciating pain in my ear that feels like an ear infection. Two Ultram helped it and got me through the day. This is just one of the many types of pain I get and today I have radiating pain and numbness in my upper jaw in the front teeth. Hope that blistering problem you get goes away eventually. Maybe it will. Hang in there! PS: About your tooth that was removed. I wonder if you really had a fractured root in that #10 tooth. Did they see the fracture. Mine was never really fractured before I had it pulled. I felt like all the pain was coming from that tooth. The damaged nerve was causing all that pain not a fracture. Pulling the tooth made my problem worse.

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