I am new. I posted this once, but this is a cleaner/shorter version because the last one was too much to read and I’m sure lost a lot of people.
I'm a 51 year old man. After researching the past 2 weeks, my symptoms seem similar to TN2/facial neuropathy/paresthesia or something like these.
Does anyone have a similar story that was directly related from a root canal retreat, extraction, or having an extraction site reopened and filed back down?
This is how it all started. Since April I have been dealing with positional vertigo and I started having pain with my back molar that had a crack in the crown. My dentist removed the cracked crown, smoothed it out and put a temporary crown on it, but after about 6 weeks, I was still having pain in that tooth and also a very mild pain on an upper molar too. So I had an endodontist do the 1st stage of a retreat root canal by redrilling out the old roots and putting antibiotics in it temporary to see how it goes for 3-4 weeks before doing the final stage of reopening and putting in the permanent filler. This tooth had 2 previous root canals in it on 2007 & 2010 by a general dentist. Now the pain started to get so bad that I ended up getting it extracted by and Oral Surgeon 8 days after the 1st stage of the root canal.
After the extraction, the pain was still aggressive for like a month. Had a tingling pain also where the tooth used to be. Never really felt anything numbing or burning yet. More like slight "Burnt pain" on my gums and right tongue like as if your roof of the mouth had just been burnt after biting into a piece of hot pizza.
Weeks later, the pain seemed a little better but the doc said that the pain should have been gone by now. So he reopened and cleaned it back up. When he injected the novocain before this procedure I felt a sharp pain that made me yell! But he said he was nowhere near the alveolar nerve.
2 months later back at the oral surgeon with pain in the upper molar for another xray. He sees a black spot. Endodotist wasn’t so sure. The pain at this point was crazy and was only coming from that tooth. I can’t tell if an electric/shocklike pain was involved at this point because this pain was so severe and constant.
I took about a week to think and pray about it. During that week I felt the pain starting to resonate now across all of my top right teeth only.
I decided to get that tooth pulled. Now 2 teeth gone. (upper and lower molars)
4-5 days post op 9/15/15, while still feeling the "constant pain" from teeth #2 - #8, I'm at this point, just starting to feel the new infamous "electric shock like" pain. I sometimes don't even have to move anything to bring this new pain on. The spikes are short but numerous and progress more during the day. Now my right jaw, right cheek and right temple areas are more sensitive to pain more than before. The vibrations of just walking or driving in the car while hitting just small bumps in the road bring on this right "skull/jaw/cheek" pain. Nothing really numb still.
The cool tingling pain is turning into more of a very warm burning pain. Still the"Burnt pain" on my gums and right tongue like as if the roof of your mouth had just been burnt after biting into hot pizza as before but getting warmer and hot.
Things are progressively getting worse daily. I have been unable to sleep on the ride side of my face.
I started seeing a neurologist for my vertigo last week 9/15/15 at the Cleveland Clinic who specializes mainly Dizziness/Headaches and Tinnitus. I don't believe he specializes in TN though. I addressed my issue with my teeth on my visit but the electric shock like pain hadn’t really been an issue til right after my visit. So he wrote me a script for Vestibular Therapy for my Vertigo and therapy on the right TMJ location. So far the PT is making the pain worse so I'm not letting them touch my face anymore. My vertigo is going crazy.
I emailed the Neurologist on 9/21/15 about the shocking pain. He prescribed a dose of 150mg of Trileptal (Oxcarbazepine) at bedtime for 2 weeks then he said to up it to 300mg at bedtime and call him in 3-4 weeks or sooner for an update. I'm now on 300mg of Triliptal and 50mg of Amitriptyline.
I didn't have these pains before I went had the root canal and extraction back in June.
Is there anyone here who has had a similar experience or can add like this?
I live in NE Ohio. Does anyone have suggestions on who I should start with in OH? Neurologist/Surgeons/Facial Pain experts etc... I will travel if needed but it may be hard cause of my ongoing Crohns issues.
Hi Tracks,
My trigeminal nerve went wonky after a dental extraction. The oral surgeon who extracted it called it a possible case of phantom tooth pain. In any case, Tegretol worked extremely well for me. I felt relief a few hours after taking the first dose. I don’t have neuralgic attacks but it manifests as a constant stabbing and tingling pain when unmedicated.
Thanks for your quick response Toothache! I asked the doc for Tegretol, but he said he wanted to start me on a "cousin" of Tegretol called Trileptal because it is better tolerated. Been on it 4 days at 150 mg bedtime. He said to go to 300mg after 2 weeks. I feel no relief and my pain is increasing which he knows. He said it could take up to 3-6 weeks to see anything. I can't see me staying like this for that long! I upped my Norco also which I'm scribed for, for intestines issues and it's still not enough. I know you have to go slow with the anti seizure meds but I wonder if his approach is way too conservative? His specialty is headaches and tinnitus. What dosage did you start at?
The pattern of symptoms you are describing is almost certainly some form of facial neuropathy, possibly aggravated by damage to a nerve during dental procedures. DO NOT have any more teeth removed. I've heard very similar stories with similar series of events from a good many facial pain patients over the past 19 years.
The tri-cyclic antidepressant drugs like Amitriptyline are often prescribed in symptoms like yours. Can be used either alone or in combination with Trileptal.
In Ohio, I strongly recommend contacting the Mayfield Clinic outside Cincinatti. Dr. John Tew is on staff there, and has been a member of the Medical Advisory Board for the US TN Association for many years. If you see him in person, please pass on my regards. He's trained several others associated with the Clinic, and he is thoroughly conversant with cases of facial neuropathy caused by dental procedures.
Thank you for responding and giving me some great info Dr Lawhern! I used to take Amitriptyline for years, but not currently. I wonder what dose is normally started out on for TN? I used to take 100mg for my insomnia.
I looked up Dr Tew and on the Mayfield Clinic website and it says he is no longer performing surgeries as of 2014, but working administratively and consulting. I’m sure he has passed his knowledge to those working at the clinic, and I’m glad he is still there consulting. Do you recognize any names of any of the other doctors at the clinic who might be able to help me? Thanks!
Neurosurgeons:
Norberto Andaluz, MD
Arthur G. Arand, MD
Steven C. Bailey, MD
Robert J. Bohinski, MD, PhD
Bradford A. Curt, MD
Vincent A. DiNapoli, MD, PhD
Dale S. Horne, MD, PhD
Michael C. Kachmann, MD - formerly Michael C. Sharts, MD
George T. Mandybur, MD
Christopher M. McPherson, MD
Tann Nichols, MD
Andrew J. Ringer, MD
Bradbury A. Skidmore, MD
William D. Tobler, MD
Ronald E. Warnick, MD
Mario Zuccarello, MD
Consulting Neurosurgeons:
Thomas S. Berger
MD, A. Lee Greiner, MD
Richard A. "Red" Lawhern said:
The pattern of symptoms you are describing is almost certainly some form of facial neuropathy, possibly aggravated by damage to a nerve during dental procedures. DO NOT have any more teeth removed. I've heard very similar stories with similar series of events from a good many facial pain patients over the past 19 years.
The tri-cyclic antidepressant drugs like Amitriptyline are often prescribed in symptoms like yours. Can be used either alone or in combination with Trileptal.
In Ohio, I strongly recommend contacting the Mayfield Clinic outside Cincinatti. Dr. John Tew is on staff there, and has been a member of the Medical Advisory Board for the US TN Association for many years. If you see him in person, please pass on my regards. He's trained several others associated with the Clinic, and he is thoroughly conversant with cases of facial neuropathy caused by dental procedures.
I started at 100mg twice a day, but I found that the relief only lasted about eight hours so I requested a dose increase after five days. My doctor asked me to go in for another blood test to make sure my liver was OK, then increased it to 100mg three times a day. Two weeks later, I still had breakthrough pain so he increased it to 100mg in the morning, 100mg eight hours later, and 150mg at bedtime. Two weeks after that, I was switched to the CR formulation and prescribed 200mg twice a day. That controlled things for two years until another oral surgery made me worse, so I went up to 300mg twice a day. I had to have my liver and blood counts monitored every two weeks for the first two months. Now I get it done every three to six months.
Trileptal is more expensive than Tegretol but it is supposed to cause fewer side effects. It has been shown in clinical trials to be non-inferior in efficacy for trigeminal neuralgia compared to Tegretol. In Canada, most doctors have more experience with Tegretol so Trileptal is seldomly prescribed.
Tracks said:
Thanks for your quick response Toothache! I asked the doc for Tegretol, but he said he wanted to start me on a “cousin” of Tegretol called Trileptal because it is better tolerated. Been on it 4 days at 150 mg bedtime. He said to go to 300mg after 2 weeks. I feel no relief and my pain is increasing which he knows. He said it could take up to 3-6 weeks to see anything. I can’t see me staying like this for that long! I upped my Norco also which I’m scribed for, for intestines issues and it’s still not enough. I know you have to go slow with the anti seizure meds but I wonder if his approach is way too conservative? His specialty is headaches and tinnitus. What dosage did you start at?
I'm not personally acquainted with any of the surgeons on the list you provided. But if John Tew participated in training them, you can bet they are knowledgeable. Likewise you can ask a basic question that will clarify whether the person you are interviewing is appropriately experienced: "How many MVD procedures have you performed for trigeminal neuralgia patients in the past year?" If the number is less than 50 or so, then the doctor probably hasn't specialized in this area of practice, even if they are knowledgeable. Another question is "What are your criteria for determining whether MVD is appropriate for a given patient whom you have personally worked up?" If age is among the criteria, you should feel free to probe deeper or to challenge the thinking of the surgeon.
Please keep us informed as you go through the interview process, Tracks.
REgards,
Red Lawhern, Ph.D.
Resident Research Analyst, LWTN
Tracks said:
Thank you for responding and giving me some great info Dr Lawhern! I used to take Amitriptyline for years, but not currently. I wonder what dose is normally started out on for TN? I used to take 100mg for my insomnia.
I looked up Dr Tew and on the Mayfield Clinic website and it says he is no longer performing surgeries as of 2014, but working administratively and consulting. I'm sure he has passed his knowledge to those working at the clinic, and I'm glad he is still there consulting. Do you recognize any names of any of the other doctors at the clinic who might be able to help me? Thanks!
Neurosurgeons: Norberto Andaluz, MD Arthur G. Arand, MD Steven C. Bailey, MD Robert J. Bohinski, MD, PhD Bradford A. Curt, MD Vincent A. DiNapoli, MD, PhD Dale S. Horne, MD, PhD Michael C. Kachmann, MD - formerly Michael C. Sharts, MD George T. Mandybur, MD Christopher M. McPherson, MD Tann Nichols, MD Andrew J. Ringer, MD Bradbury A. Skidmore, MD William D. Tobler, MD Ronald E. Warnick, MD Mario Zuccarello, MD
Consulting Neurosurgeons: Thomas S. Berger MD, A. Lee Greiner, MD
Just wanted to wish you the best as you go down this path. I hope you are able to get into see one of those doctor's soon or that at least the medications start working soon. My TN2 is the result of a wisdom tooth extraction in which my trigeminal nerve was hit during the procedure. That was over 30 long years ago.
If TN is what you are dealing with, you have found a great group of people here.
That’s great you at least got for some relief and you have a Neuro who works with you with blood work and dosage increments at a quicker pace for comfort! I need to “My Chart” my Neuro on Monday to see if he can increase my dosage and do bloodwork but I have a STRONG feeling that he will just message me back and say, “You need to just give it more time, it’s take 3-6 weeks” I feel like I’m being a problem patient and I’m by myself on an Island and this pain will put me in the psychiatric ward! I’m now getting at least 100-200 + saps a day at different pain levels. Starting last night, I started getting them while trying to sleep, right after taking the Trileptal and my normal 2 mg of Xanex. I don’t know how much more of this can I take. I know stress doesn’t help.
Toothache said:
I started at 100mg twice a day, but I found that the relief only lasted about eight hours so I requested a dose increase after five days. My doctor asked me to go in for another blood test to make sure my liver was OK, then increased it to 100mg three times a day. Two weeks later, I still had breakthrough pain so he increased it to 100mg in the morning, 100mg eight hours later, and 150mg at bedtime. Two weeks after that, I was switched to the CR formulation and prescribed 200mg twice a day. That controlled things for two years until another oral surgery made me worse, so I went up to 300mg twice a day. I had to have my liver and blood counts monitored every two weeks for the first two months. Now I get it done every three to six months.
Trileptal is more expensive than Tegretol but it is supposed to cause fewer side effects. It has been shown in clinical trials to be non-inferior in efficacy for trigeminal neuralgia compared to Tegretol. In Canada, most doctors have more experience with Tegretol so Trileptal is seldomly prescribed.
Tracks said:
Thanks for your quick response Toothache! I asked the doc for Tegretol, but he said he wanted to start me on a "cousin" of Tegretol called Trileptal because it is better tolerated. Been on it 4 days at 150 mg bedtime. He said to go to 300mg after 2 weeks. I feel no relief and my pain is increasing which he knows. He said it could take up to 3-6 weeks to see anything. I can't see me staying like this for that long! I upped my Norco also which I'm scribed for, for intestines issues and it's still not enough. I know you have to go slow with the anti seizure meds but I wonder if his approach is way too conservative? His specialty is headaches and tinnitus. What dosage did you start at?
I don’t have a neurologist. I got referred to a neuro who didn’t think I had a neurological problem after my MRI came back normal. I waited three months to see him and six months for the MRI. The Tegretol was prescribed by an orofacial pain specialist.
Tracks said:
That’s great you at least got for some relief and you have a Neuro who works with you with blood work and dosage increments at a quicker pace for comfort! I need to “My Chart” my Neuro on Monday to see if he can increase my dosage and do bloodwork but I have a STRONG feeling that he will just message me back and say, “You need to just give it more time, it’s take 3-6 weeks” I feel like I’m being a problem patient and I’m by myself on an Island and this pain will put me in the psychiatric ward! I’m now getting at least 100-200 + saps a day at different pain levels. Starting last night, I started getting them while trying to sleep, right after taking the Trileptal and my normal 2 mg of Xanex. I don’t know how much more of this can I take. I know stress doesn’t help.
Toothache said:
I started at 100mg twice a day, but I found that the relief only lasted about eight hours so I requested a dose increase after five days. My doctor asked me to go in for another blood test to make sure my liver was OK, then increased it to 100mg three times a day. Two weeks later, I still had breakthrough pain so he increased it to 100mg in the morning, 100mg eight hours later, and 150mg at bedtime. Two weeks after that, I was switched to the CR formulation and prescribed 200mg twice a day. That controlled things for two years until another oral surgery made me worse, so I went up to 300mg twice a day. I had to have my liver and blood counts monitored every two weeks for the first two months. Now I get it done every three to six months.
Trileptal is more expensive than Tegretol but it is supposed to cause fewer side effects. It has been shown in clinical trials to be non-inferior in efficacy for trigeminal neuralgia compared to Tegretol. In Canada, most doctors have more experience with Tegretol so Trileptal is seldomly prescribed.
Tracks said:
Thanks for your quick response Toothache! I asked the doc for Tegretol, but he said he wanted to start me on a “cousin” of Tegretol called Trileptal because it is better tolerated. Been on it 4 days at 150 mg bedtime. He said to go to 300mg after 2 weeks. I feel no relief and my pain is increasing which he knows. He said it could take up to 3-6 weeks to see anything. I can’t see me staying like this for that long! I upped my Norco also which I’m scribed for, for intestines issues and it’s still not enough. I know you have to go slow with the anti seizure meds but I wonder if his approach is way too conservative? His specialty is headaches and tinnitus. What dosage did you start at?
How did you come about finding this “orofacial pain specialist”? I haven’t thought about it yet cause I have been focusing on trying to locate a TN Neurologist for a clearer diagnosis to get to the root of what’s going on. I had an MRI 3 years ago for headaches and memory loss that came back normal. So he didn’t see a reason to do another MRI at this point. The teeth issue started just months ago.
Toothache said:
I don’t have a neurologist. I got referred to a neuro who didn’t think I had a neurological problem after my MRI came back normal. I waited three months to see him and six months for the MRI. The Tegretol was prescribed by an orofacial pain specialist.
Tracks said:
That’s great you at least got for some relief and you have a Neuro who works with you with blood work and dosage increments at a quicker pace for comfort! I need to “My Chart” my Neuro on Monday to see if he can increase my dosage and do bloodwork but I have a STRONG feeling that he will just message me back and say, “You need to just give it more time, it’s take 3-6 weeks” I feel like I’m being a problem patient and I’m by myself on an Island and this pain will put me in the psychiatric ward! I’m now getting at least 100-200 + saps a day at different pain levels. Starting last night, I started getting them while trying to sleep, right after taking the Trileptal and my normal 2 mg of Xanex. I don’t know how much more of this can I take. I know stress doesn’t help.
Toothache said:
I started at 100mg twice a day, but I found that the relief only lasted about eight hours so I requested a dose increase after five days. My doctor asked me to go in for another blood test to make sure my liver was OK, then increased it to 100mg three times a day. Two weeks later, I still had breakthrough pain so he increased it to 100mg in the morning, 100mg eight hours later, and 150mg at bedtime. Two weeks after that, I was switched to the CR formulation and prescribed 200mg twice a day. That controlled things for two years until another oral surgery made me worse, so I went up to 300mg twice a day. I had to have my liver and blood counts monitored every two weeks for the first two months. Now I get it done every three to six months.
Trileptal is more expensive than Tegretol but it is supposed to cause fewer side effects. It has been shown in clinical trials to be non-inferior in efficacy for trigeminal neuralgia compared to Tegretol. In Canada, most doctors have more experience with Tegretol so Trileptal is seldomly prescribed.
Tracks said:
Thanks for your quick response Toothache! I asked the doc for Tegretol, but he said he wanted to start me on a “cousin” of Tegretol called Trileptal because it is better tolerated. Been on it 4 days at 150 mg bedtime. He said to go to 300mg after 2 weeks. I feel no relief and my pain is increasing which he knows. He said it could take up to 3-6 weeks to see anything. I can’t see me staying like this for that long! I upped my Norco also which I’m scribed for, for intestines issues and it’s still not enough. I know you have to go slow with the anti seizure meds but I wonder if his approach is way too conservative? His specialty is headaches and tinnitus. What dosage did you start at?