Persistent teeth pain for months, not sure if I have Trigeminal Neuralgia but need help

It all started on a cold winter's day back in early March 2013. The day was finally here: the dreaded toothache. The front tooth that was giving me pain had a small cavity in it, which I had for a couple years, but due to an extreme fear of dentists, I put off a visit as long as I could while at the same time practicing good dental hygiene to prevent the cavity from getting any bigger. Even after the pain started and continued, my stubborn self still tried everything to help the pain without seeing a dentist; purchased every herbal remedy under the sun and nearly every product in the toothpaste aisle but nothing helped.

Finally after 2 months, I went to see a dentist who discovered another cavity on the neighboring tooth. She filled both cavities and said if I had waited any longer, I would've needed root canals. I was relieved so she sent me on my way. The dental assistant said to wait 24 hours and the pain should go away, but it didn't; not 24 hours later, not 24 days later, not even 24 weeks later.
During the first month of the pain after the fillings, I went back to my dentist who referred me to an endodontist. I made an appointment right away and after he saw me a few weeks later, he determined I did not need root canals but advised me that sometimes pain lingers on after fillings. This answer wasn't good enough but he did prescribe me some type of anti-inflammatory drug that I had to take for a week and afterwards, I noticed the throbbing did go away little by little. So for the first time in 4 months, I was finally free of the dull ache that haunted me day in and day out. This lasted 2 months but I noticed the teeth were still sensitive throughout that time.
Then on a random day in September, the throbbing and dull ache came back except this time it was full force. I thought the first toothache was rough but this time, I was living a nightmare. I went to my regular dentist who only suggested I see the endodontist again but I couldn't wait any longer so I begged her to do the root canal right there on the main tooth that started all of this, since that one was hurting the most after being tested on. Right after the root canal, I was stricken down with a stomach flu and immediately afterwards, I got a cold and during that time, I couldn't really tell if the tooth that was root canalled hurt anymore or not but I noticed the neighboring tooth was sensitive near the gumline which appears to be due to receding gums, which I'm trying to control by oil pulling but haven't seen any positive effects yet. After I was free of the virus, I noticed the root canalled tooth started to hurt again after all. By this time, I was fed up so I went back to my dentist who took another x-ray but couldn't see anything wrong with any of the teeth so I went back home in pain and still no answer. Several days later, the pain only got worse and worse so I set up another appointment with my dentist who put sealants on the front teeth and after reading online about how this helps sensitivity, I was hopeful. Then I got home, and noticed they were still hurting. I couldn't take it anymore so I went back in to the dentist and talked with her for an hour. I told myself I was not going to leave until I have an answer. She said if the root canalled tooth is still hurting, it could be something neurological. I was scared but if that was the next step to get rid of this pain, I was going to take it without hesitation. So after about a week, I was able to get in with the neurologist who asked me basic questions about my problem and said that although my symptoms aren't a classic case of Trigeminal Neuralgia, I could indeed have it so he prescribed me Tegretol. The first few days that I took it, it didn't help but after a week, I definitely noticed the throbbing and dull ache had subsided but as each week passed, I had to increase the dosage little by little because the medication wore off quickly. I called the neurologist and explained to him that the Tegretol seems to help but only in higher doses but after asking how long I'd have to be on this, he said some patients take it their whole lives. He could tell I didn't like that answer so he advised me to not exceed a certain dosage and that if I'm concerned about the long term effects of the medication, the next step is to get an MRI. I thought that was a little drastic; going from a toothache to an MRI but I still wanted to check my other options because I noticed that even when the dull ache is gone, the teeth are still sensitive to the touch as well as the cold so there has to be some underlying reason for that as well. I then called my dentist up, who I could tell was fed up with me but she was still patient and only suggested I see the endodontist again. I went there and he tested all of the teeth; when tapped on, all front teeth gave the same response and when cold pressed, all teeth except root canalled tooth gave same response. So basically, he said I do not need any additional root canals and that the one that was root canalled has no nerve left so he just suggested I use sensodyne but I advised him that I had been using that for months. He didn't really know what else to tell me other than it might be best to proceed with the MRI. Even if he said I needed another root canal, I would be hesitant to get another one since the first one didn't relieve me of my pain.

For now, my next plan is to get the MRI but I'm worried for two reasons: that nothing will show up and I won't be any closer to pain relief, and that something will show up and I will have to be on meds forever or have surgery which I've never had so obviously I'm scared to go under the knife. Ugh. Anyway, the meds have been working for the past few weeks but I noticed today that they aren't helping as much and the fact that Christmas is next week and I'll probably be in pain the whole time makes me so depressed.
Does anyone have any similiar experiences? Any advice or help would be greatly appreciated. This problem has taken control of my life and I just want it back. I have no social life anymore... everyone including the dentist and her staff, my family, and my friends all seem to be annoyed with me because they don't understand. Also, the financial toll this has taken on me since I don't have dental insurance and having to work throughout all of this is just too much. Please help. :'(

Hello hanner, my story is almost identical to yours. But I actually had the tooth pulled, not wanting to believe that that te pain I was feeling was something other than the tooth. But even after the tooth was pulled I had this burning in my teeth. After dentist, 2 endodentist and oral surgeon I went to neuor. My MRI was clear which is good for looking for tumors. I am now on tegretol which is helping. I you haven’t read " striking back" you need to, it’s the bible. This disease has also changed my life completely. I also want my life back. For me it’s been 8 months. I hope you get answers soon. Take it just a day at a time.

Thanks for the reply but I have a few questions. If your MRI was clear, how does the neurologist know you have TN? It's good the Tegretol is working for you though. As for me, I'm finding it's helping less and less so I don't know what to do next especially if I go in and pay all this money for an MRI and it's clear. I mean obviously I don't want to have a tumor or anything wrong but how else am I going to receive a diagnosis if nothing shows up and there is no actual test for TN? Are we all just on pills as an experiment??? I don't like being a lab rat.

Darlene Peterson said:

Hello hanner, my story is almost identical to yours. But I actually had the tooth pulled, not wanting to believe that that te pain I was feeling was something other than the tooth. But even after the tooth was pulled I had this burning in my teeth. After dentist, 2 endodentist and oral surgeon I went to neuor. My MRI was clear which is good for looking for tumors. I am now on tegretol which is helping. I you haven't read " striking back" you need to, it's the bible. This disease has also changed my life completely. I also want my life back. For me it's been 8 months. I hope you get answers soon. Take it just a day at a time.

Wow your story sounds like I could have written it! After over a year 5 dentist/endodonist/oral surgeon/facial pain doctor 2 regular doctors neurologist/neurosurgeon. 5 teeth pulled 2 root canals later. 2 chiropractors I have had a ct scan and 2 mri's one being a 3 tesla a high def mri which the neurosurgeon found veins pressing on the nerves on both sides truth is knowing this info doesn't relieve me for I will not go through brain surgery at this time on a hope that it may help. too risky Hi my name is Amanda and I have trigeminal neuralgia type 2 also known as atypical face pain atypical TN doctors don't know crap about this disease. Its a hard diagnosis to want to accept you will want to believe its anything but this..I'm so sorry but here we are. Yes your family and friends will never understand. Chronic pain in the face not a fun ordeal at all! The anti-sez meds made my pain worse so I wasn't on them long...I am now on Nortriptyline 75 mg a day yes sucks to be on pills forever but my pain was bad enough I didn't care anything to stop it. And I have relief from these pills thank goodness. Im making my long story short here. But feel free to friend me and ask me anything!!

Oh and something else I forgot to through in I also got the flu the day after my root canal that's got to be more then a coincidence!!

Hanner, if tegretol works then it’s almost 100 % that you have it. Sometimes you have to add another med to the tegretol to gets relief. I have a $2000 deduct able so I understand the money fracture since I had to pay for the entire cost if MRI. I definitely will not be on meds forever. I want mvd surgery as soon as I can get it.

Wow…Im so sorry …my story is similar also… and i learned a little one thing i just wanted to say is that even with a root canal u can have a whats called a micro fracture that is undetectable on any scan… and sometimes I have heard all these nerve meds help tooth pain i mean after all we have nerves in our teeth so very confusing like what is helping what…but anyway why a micro fracture can still hurt you even after a root canal is because of the nerve endings around the tooth in the ligaments surounding the tooth every time you bite the tooth is being seperated barely from the micro fracture causeing the pain around it…you may know that bit jist incase soemhow it is the tooth hope that helps…