I agree to be so careful about the dentist. I had an unnecessary root canal done and the pain was immediately worse afterwards! There are sooo many stories on here about extractions and root canals.
The tooth that all of my pain originates from, the one that was root canaled, still hurts if I touch it. It is nerves, not your tooth! I took a lot of pain killers and anti-inflammatories before coming to the realization that it was TN. Nothing worked for me. The only thing that gave me relief during that time was Tylenol 3's simply because they knocked me out :)
The amitriptyline did take some time to start working. I started on 10mgs and very slowly worked my way up to 40mgs over the course of a month and a half. I went so slowly because the side effect of fatigue was a lot for me to handle. I didn't feel relief until I was on 40mgs for about a week. Also, I know that my dose is quite low compared to others. It seems you can go up to 150mgs if need be for nerve pain (just my knowledge--I am no doctor).
Dear Scared and angry Gal
I believe there is a difference between sensitive teeth and teeth pain. I had that procedure where they take yr gums and kinda pull them up higher on the teeth. The has lasted for at 15 yrs plus a much lighter approach to brushing. Teeth pain is more inside and longer lasting. Based on my recent journey leave your teeth alone. They are fine
Thanks Jenny, I know, I know , its great advice you gave. Actually, the endodontist only checked about 5 teeth that are hurting, and I had to beg them to do that , because they told me normally they only check one tooth. I never had them check the one I am scheduled to pull because the pain started after a filling was done and the dentist said the filling is somewhat close to the nerve, so to me , it just makes sense that the pain in this tooth is "real" , but yeah, I am still unsure because I never had the endodontist check this one, and this is the exact opposite 2nd molar of the 2nd molar extraction I did on march 25, 2013 which led to the nerve damage. So, you are making me think I should just go back to the endodontist and pay some extra cash and have him check this last tooth that hurts like hell 24/7 and I have scheduled to pull now on March 21. Thanks so much!!!
feafee said:
Just a quick question....if all your teeth looked healthy, why are you having one pulled? I had 8 or 9 root canals and 4 extractions before being diagnosed. I can tell you that my teeth/gums hurt SO much worse after the extractions. I strongly caution you to be sure of a problem with the tooth before you pull it.
For me, tegretol worked the best. It wasn't until I got to 600 or 800 mg that it helped the teeth pain.
Thanks Jackie!!! Wow, that sounds horrible the pain you had to go through before you were diagnosed!! Yeah, I guess I was thinking too, that by March 21, I will have been taking 75mg of noritrylipine for a full 7 days(I am taking 25mg of it now and need to work up to the normal dose)and I thought if it was neuropathic pain in that 2nd molar the noritriptiline would have taken it away, so my thought was if I am still in pain on March 20th on that tooth, I would pull it, if the pain was gone because of the active noritriptiline I would cancel it, but that does not make 100percent sense either. Perhaps, the noritriptiline is just one of the many meds that doesn't work for me...Dang, I can see why so many have made the mistake of just pulling the darn tooth, because it hurts so bad, you think to yourself, :"it must be a bad tooth, so just yank that sucker out and my problems will be over" I cant even imagine the horror of discovering that now your problems are much worse after the tooth pulling. Thanks sooooo much for all your replys. You guys are the REAL EXPERTS, not the dentists or the neurologists, etc!!!
Jackie said:
I have to agree here. When I was first diagnosed, I was in so much pain I could not open my mouth at all. I wrote questions down. I asked the Dr could she arrange an emergency extraction of all my upper teeth. She said to never even consider this, it would make the pain much worse and I would have lost the teeth for nothing. I would consider other options. feafee said:
Just a quick question....if all your teeth looked healthy, why are you having one pulled? I had 8 or 9 root canals and 4 extractions before being diagnosed. I can tell you that my teeth/gums hurt SO much worse after the extractions. I strongly caution you to be sure of a problem with the tooth before you pull it.
For me, tegretol worked the best. It wasn't until I got to 600 or 800 mg that it helped the teeth pain.
I just need to chime in again about your tooth that is in question. It is just sounding eerily familiar to my experience. My pain started in the 2nd bottom molar in on my left side.
Last year around March it started to hurt. I went to the dentist. I had had a filling put in that tooth a few months prior. The whole thing is still confusing! Anyways, he said it was probably infected. He gave anti-biotics and took out my filling and replaced it with a medicated filling.
The antibiotics did not help. I went back and he said the cavity is deep, very close to the nerve and I would likely need a root canal. He gave me different antibiotics. I had had a history of a prior TN attack about 7 years prior and told him about that again. He said yes, but you have a large hole in your tooth. He convinced me that it was infected. An important point here that was overlooked was that there was NO physical evidence of an infection. No bump or dark spot on the xray. Also the fact that the antibiotics and various pain and anti-inflammatory were not working should have been a huge red light.
I proceeded with the root canal and the pain immediately got worse. It was now going up into my jaw, cheek and ear. Then he said to give it time, that it would settle down. I was back a week later in even more pain. He did tapping tests and a cold test on that tooth. The tooth did not react to either test. He said the root canal was a success. That it could be related to TMJ and to keep wearing my night guard or possibly there was a crack in the tooth. He said the only other thing to do is pull it out.
At that point I went to my doctor and was given Amitriptyline because that is what had helped the first time that I had TN.
I should have known from the beginning that it could be the TN coming back. But the pain was so centered around that tooth and I think I really wanted it to be dental because the prospect that it wasn't and was TN, was too scary and disappointing to hear.
wow, what a story, and there are many similarities you are right. Thank you sooo much for taking your time to tell this to me. You have been through ALOT!! So, I take it that the amitriptyline in time took the pain away in this tooth and you didn't get it pulled afterall. I can see why you didn't want it to be TN, heck 7 yrs is a long time to be pain free, I would probably think the TN was gone too. Yeah, when my endodontist told me the teeth that were xrayed looked all normal, my heart dropped, I wanted there to be something wrong, because you can get root canals and your problems are over then. I also took an antibiotic after the filling ,but it was for another tooth that had been hurting for over 6 months, and yes, nothing changed in any of my teeth. I defineately don't want ear pain as well. that would really suck. I'm supposed to get a filling done tomorrow, and I am really scared. I have put this off for over 2 months since seeing the cavity on the xray, and it has to be done. But I will take a trileptal 300mg this evening plus my nortripline and take a trileptal before the filling tomorrow and take one on Tuesday as well. I hope it stays in me, because I went off of that stuff because it made me throw up. My plan is to take it with a big meal and hope for the best. Thanks again, and I am so glad you are pain free today cuz of the amitriptyline!!!
I am on a mission to spread knowledge about TN. Story after story that I read is heartbreaking. The lack of knowledge about this disease amongst doctors and dentists is mind blowing, especially with Atypical TN. And the connections between dental work and people developing nerve pain doesn't seem to be as rare as people think! I see it on here again and again. It seems to me that there is a lack of knowledge and training on both sides regarding pain in and around your mouth, other than straight forward rotten teeth. And this "TMJ" term is thrown at anyone they don't know what to do with. The other part of this that irks me is that dentists are so expensive. I am in Canada and without private coverage you have to pay. I spent nearly $2500 on that tooth only to be left in pain and with a huge bill to pay. It's robbery.
I'm so sorry that you are going through all of this as well. Our stories are similar. I keep seeing us both in the same conversations on here.
Yeah, after the root canal fiasco I decided to abandon the dental chair for a bit and try the Amitriptyline. It took a good month and a half until I got the dosage up and it started helping. Pain gone!!! Like 98%. I get get little twinches sometimes and if I press on that tooth or floss it, it still feels strange.
The first time I had TN was a million times worse. I had no idea what was happening and was in and out of the ER, the dentist, dental specialists and doctors for months before finally being given the Amitriptyline. I begged the dentist to pull teeth out. I felt so insane and alone. I stayed on the Amitriptyline for two years and went off of it because I wanted to get pregnant. The pain was totally gone! Seven years is a wonderfully long time! The first time I was only on 25mgs of Amitriptyline and this time I had to go to 40mgs. It seems that it can get worse over time so I hope I stay where I am with it!
The craziest part of all of this for me is that my mother has TN. She has Type 1 TN and has suffered terribly with it over the years. But because my pain is in my teeth and a constant, unrelentlessly throbbing nightmare I still didn't make the connection. The web is an amazing tool because I have conversed with all of these people that have exactly what I have! It does bring a lot of comfort and the knowledge and experience we gain from one another is amazing.
Let me know how it goes tomorrow please. I understand your anxiety about it completely. I have stayed very far away from the dentist since this happened. I won't even go in for a cleaning at this point. And that is not good at all. I have developed a phobia over all of this. I am afraid to have my teeth touched and I am afraid of being frozen with a needle. My TN was not directly caused by the dentist (I don't think), although my pain spread from just my teeth, to my cheek, jaw and ear immediately after that root canal. But so many people seem to get TN after dental work. That really scares me, as I am sure it scares you too.
I also really hope that you are able to figure out your meds and be pain free as well. Do give it time though. I know that is really hard to do when you are in pain. And each of us is so different with our pain and our meds. That is largely why I am still on this website trying to help people. It's all very frightening!!
I too had several root canals but finally 400 Mgs tegretol and 900 of neuron ton took the tooth pain away. I bet I had the tooth checked 6 times could not get it thru my head it wasn’t the tooth. I would wear a mouth guard to drink coffee lol I have had to up my meds 2 more time and now scheduled for mvd I am nervous for this surgery but this has taken over my life. Best of luck to you I know how frustrating the whole tooth thing can be.
Thank you sooo much for your last entry Just Jane. Btw, my name is Elvera and although I am still very very scared about all this, my anger has subsided ALOT thanks to all the angels on here, fellow sufferers, who even though they are in pain themselves, reach out to try to help someone else. Reading your first paragraph, I have to say, I couldn't have written it better. I am so tired of telling my story to a dr. or a neurologist and hear them say, oh, this is very rare. I tell them.. oh really, it is rare to you because perhaps you don't have a lot of patients with this, but I have written and read the stories of hundreds of folks and when you hear them , as individuals, and not some number in a statistical research article, I am left saying to myself , this is not rare at all!!! I think its exactly what the dentistry profession wants us to believe, oh, this is rare... And I do know, mine was caused by a dental procedure, an upper molar was extracted and immediately afterwards the numbness of the lidocaine shots never completely went away in full. Mine started out with chronic numbness in the gum area of the extraction site and in time numbed the tooth next to the extraction site as well. Its an easy out. The dental profession, if they keep on saying it is rare, and keep on saying well, there is not a 100percent proof, a caused b type thing, then they wont have to worry about being sued and then they wont have to worry about being more careful and getting further education. I filed a complaint against my oral surgeon with the state licensing board and it came back they he did nothing wrong.. kind of like saying, these things can happen even with the best of dentists, there is always a risk, blah, blah.... funny he didn't tell me there was a risk of nerve damage.... evidently it is written somewhere in some tiny, tiny print. It sounds like your TN came back again when you had the simple cavity filled. That's all it takes. And I saw Dr. Ken Casey and he told me before ANY dental procedure , I am supposed to take 900mg of trileptal the day before, 1200mg of trileptal the day of the procedure and I think 600mg the following day. I cant do this, because I throw up after 300mg of it at times,so I will just stick to 300mg each day and hope for the best, but the point is, from this time forward, you should load up on further meds the day before, during and after any dental procedure...
Thanks wendyjo. That's funny about the mouth guard. I didn't even know there was such thing as a mouth guard, maybe I will look into one until my meds are working.. I pray the MVD works for you!!! Can I ask who is going to do it? Does that mean your mri showed something pressing on the main part of the nerve or do they go in there blindly and hope they see something unusual.
wendyjo said:
I too had several root canals but finally 400 Mgs tegretol and 900 of neuron ton took the tooth pain away. I bet I had the tooth checked 6 times could not get it thru my head it wasn't the tooth. I would wear a mouth guard to drink coffee lol I have had to up my meds 2 more time and now scheduled for mvd I am nervous for this surgery but this has taken over my life. Best of luck to you I know how frustrating the whole tooth thing can be.
Before any dental procedure you should take 60mg of Dextromathorphan the day before, day of, and day after the procedure. It's an NMDA receptor antagonist and helps block/prevent neuropathic pain resulting from the dental work. (While this med is often found in cough syrup, it is also sold separately OTC)
wow, this is interesting and exciting news crystal!!!! I have never heard of this before and will be useful to so many of us. Have you tried this personally? and it worked? Where do I get this dextromethorphan?....that word is a mouth full, no pun intended, lol.
Yes, I used it when I needed a root canal on my "good" side and I was really afraid it would start a new pain problem. My facial pain specialist (who also has a DDS degree) told me about it. And I came out of it okay, so I'll do it every time.
You can get the pills at any pharmacy, they are over the counter. If you can't find them, ask your pharmacist. Sometimes even though they are OTC, they might keep them behind the counter.
Wow, I was reading about it and evidently at high doses it can cause dissociative hallucinations. I hope 60mg is not considered a high dose. Thanks again for letting me and everyone else now know about this. Has any body else used this dextromethorphan pill before/during/after a dental procedure that you know of on here? I would like to hear if they had a positive experience as well. I'm just a bit hesitant because you stated the root canal was done on your good side. I would feel a bit more confident if you had a root canal on your bad side and had no post root canal added pain. I'm sorry if I sound negative, I am just being honest with my concerns. But heck, if this works, (and I will go to the pharmacy tomorrow and get some of this)this is a HUGE blessing to everyone that we don't have to be afraid of dental work anymore making things worse for us!!!
You would have to take A LOT for it to cause hallucinations. Chances are you've taken it many times if you've ever used cough syrup or thera-flu.
My research indicates that hallucinations could start if you take 500mg or more in one dose. The kids on the street take 900mg or more to get "high" off it.
And when I said my "good" side, I used the quotes for a reason. It's my better side, but I still suffer pain there.
I understand your hesitance to try it, but it's really nothing to worry about.
Either way, I wish you the best of luck on your procedure. I know how terrifying it is to need dental work when you have TN/ATN.
Tegretol initially took away the tooth pain. The last six weeks or so it has lessened the pain but I am having more break thru pain. I totally get the tap water causing pain. Even room temperature water cause pain at times. I am also noticing pain and swelling in my ear with the tooth pain. I do not have an ear infection or allergies that would be causing this. Sounds like we are in good company here.
oh, o,k, thanks for clarifying "good" side, I am slow on getting the TN lingo, being still relatively new to all this. I have yet again, called my dentist and left a message that I wont be coming in tomorrow and my need to reschedule to buy more time and courage hopefully. I really do appreciate this Crystal, and I have a new plan now. I will take 300mg of trileptal, 50mg of nortripiline and 60mg of dextromethorphan the day before/off /and after. and I will get this finally done next week if my dentist doesn't kick me to the curb for all the rescheduling I have been doing. This dextromethorphan is a pretty interesting medicine. I was reading about it and you can pretty much take it in a low dose all the time as a pain med for neuropathy. Thank you again Crystal, you are awesome for passing this on to us!!!
Sorry to hear you are having break thru pain on the tegretol. How much tegretol are you taking? I get teeth pain sometimes just from talking or breathing, the air hurts my lower teeth on one side. I am also sorry to hear about the pain in your ear now. I should write a new question: which meds take ear pain away?? I cant remember who had the ear pain now, but perhaps you guys should write to each other for suggestions, etc. I wish I could just get that motor cortex stimulation deal and be done with this. I hope all your pain gets managed better very soon Patty!!!
Patty said:
Tegretol initially took away the tooth pain. The last six weeks or so it has lessened the pain but I am having more break thru pain. I totally get the tap water causing pain. Even room temperature water cause pain at times. I am also noticing pain and swelling in my ear with the tooth pain. I do not have an ear infection or allergies that would be causing this. Sounds like we are in good company here.
Hi Crystal, Can I ask you where you got the pill form of Dextromethorphan? I went to Walmart today and asked the pharmacist and he stated they don't have anything like that in a pill form, he stated the only thing they have is liquid form... its called Delsym, and it says active ingredient , in each 5 ml is dextromethorphan polistriex equivalent to 30mg dextromethorphan hydrobromide...and it says for adults take 10ml with is 60 mg, which is just like you stated earlier, its the same dose as one would take as a cough suppressant, sorry I was so apprehensive before about...