I'm very new to this support group and have been reading for hours at a time. I saw one dentist on an emergency basis last week. He took 10 different x-rays and could not identify any issues with my upper right back teeth. I had been having classic TN symptoms that came from nowhere with electrical jolts that literally dropped me to my knees with such severe pain. After one of those waves of pain, I then have a constant burning pain, that while it's not as painful as the jolts, still is almost unbearable until it fades after 30-60 minutes.
My dentist gave me an rx for Naproxsin and an antibiotic. The pain increased during the day and he agreed to see me again. This time, he stated he thought it was classic TN and said I needed to immediately start treatment for TMJ with a splint.
Since I won't be eligible for Medicare until August 1st, I have no insurance and the $4500.00 cost only increased the pain. My question is this...I have to manage this pain the best way I can until August 1st and at that time will see my PCP for her evaluation.
Should I also make an appointment with a dentist in my network for a 2nd opinion? How many of you have discovered that you did have a cracked tooth that was causing the jolts? I appreciate this groups wisdom and experience. Thank you in advance for any encouragment or advice.
I've had a cracked tooth and it usually feels bad when you bite down but nothing that brings you to your knees. If it's an infection the pain subsides with the anti-biotics. I don't know about the TMJ. You could have both. Managing the pain is something else. You need to see a neurologist as soon as your medicare kicks in but it could take time, so go to your PCP. Right now the only thing that helps my pain is anti-convulsants. If you could ask your PCP to get you on tegretol or trileptal asap until you can see a neurologist - it might help. If it does help, you have TN, but you have to get up to a heavy dose. For me the pain was contained after the first day. There is the ER. If you go in and ask for opiates they will probably think you are drug seeking and they don't usually help with the pain anyway. I know they don't help for me. Everyone is different. I am hoping someone else has a better answer for you. But see your PCP asap.
Before my diagnosis of tn at the end of last year I drove my dentist nuts, sure that the pain was a problem with my teeth.
He kept insisting that the description of my pain and the response to various test were not indicating a problem with my teeth. I had various x rays taken and eventually had a full mouth X-ray done (can’t think what it is called).
Eventually the dentist recommended an ENT specialist thinking it may be sinus related and that specialist was the one that first suggested tn and referred me to a neurologist.
I’m in Australia so not sure about your health care system but my family doctor was able to prescribe lyrics to get me started because it was a 3 month wait until I saw the neurologist. Is this an option for you?
Hopefully others much wiser than I are able to offer some other suggestions.
You do need to see your general doctor - DITCH the dental work for now
and worry about TMJ later
You do need to get on an anti-seizure med like posted above --- I only got to 900 mg of Trileptal --- the pain was under control and I lived a normalish life
You have so much to learn --- you can also join the group tab -- click and join the TMJ group or just read what they say about that with TN
I don't know anything about a splint --- but if it makes the shocks or burning worse get rid of it
Keep reading and asking and reading and asking -- ALSO can ask GP for Lidocaine Mouthwash to help while you wait for medicine to work.
I would stop the dental work and spend the money you save on a dr. appointment. Like you, I spent $6,000 in dental work in a few months, and it did more harm than good. As long as nothing is infected (the first dentist should have taken care of that), more dental work can wait. A TMJ splint is not an emergency measure for pain -- you can get it later. If you feel like you can't go to a dr., get an appointment for 8/1 and see another dentist for a second opinion. But don't get any more expensive work that you can't afford until you've had someone look over the whole situation. Sorry you're having this experience -- I think my dentist really wanted to help, and was very good at his job, but he was too focused on how he could fix things with the tools he had.
I've had a cracked tooth and it usually feels bad when you bite down but nothing that brings you to your knees. If it's an infection the pain subsides with the anti-biotics. I don't know about the TMJ. You could have both. Managing the pain is something else. You need to see a neurologist as soon as your medicare kicks in but it could take time, so go to your PCP. Right now the only thing that helps my pain is anti-convulsants. If you could ask your PCP to get you on tegretol or trileptal asap until you can see a neurologist - it might help. If it does help, you have TN, but you have to get up to a heavy dose. For me the pain was contained after the first day. There is the ER. If you go in and ask for opiates they will probably think you are drug seeking and they don't usually help with the pain anyway. I know they don't help for me. Everyone is different. I am hoping someone else has a better answer for you. But see your PCP asap.
My dentist did have me bite down metal tools, he tapped and tapped and no pain whatsoever. It just comes out of the blue or most recently, when I'm talking or laughng, which I don't seem to be doing much of either these days. :(
I've had dentists repeatedly tell me there are micro cracks in my teeth causing my pain. Repeatedly the pain went away when I got the Trigeminal Neuralgia under control with meds. If a dentist can't show you the actual crack on an xray. I would be leary. This is a common misdiagnosis.
I've even asked the dentist how I cracked my teeth. He said I must be grinding them in my sleep. I was fitted for a night guard. Hundreds of dollars later I learned that if I was indeed grinding my teeth there would eventually be signs of Bruxism (at least that's what I think I remember he called it), a flattening of the tops of the teeth. I don't have any signs of that either. My neurologist also said it is a common misdiagnosis.
In case you actually have cracks in your teeth try sloshing about a tablespoon of Red Chloraseptic around on the side that hurts then spit it out. The green kind is simply too yuck for me. If it's seeping through an actual crack it should make some difference in the pain. Once when I actually did have a cavity it worked better than gel stuff that foams up in your mouth. Beware though it will numb your mouth. Don't bite your tongue.
P.S. If you're not familiar with Chloraseptic its a spray for sore throats. The store brands will do just as well.
There is a high resolution CT that can show cracks in your teeth. The machine used is called a Morita. There are lots of CTs available, but a Morita scan is the only one I know of that can see cracks in the teeth. Not everywhere has the machine. I got mine done in LA at UCLA dental school and the scan was only $150. They won't bill your insurance, but they give you a "superbill" and you can bill it yourself. If you have an orofacial pain specialist, they might know who/where has the Morita. Or the closest dental school might be somewhere to ask.
When I got my Morita scan, I did not have any cracks in my teeth. But it did show that my fourth canal was only partially filled during my root canal. The previous CTs I had never showed that. I got it fixed, but my problem isn't dental, so it didn't help. But at least I knew where things stood.
Thank you for the information on the Morita CT scanner. I'll be sure to add this to my notes and check with my doctor. I am unsure what road I'll actually be walking down, but this support is giving me great faith to keep searching until I have an answer. Do people who have an almost contstant pain become drowsy, somewhat disoriented and just a tad but grumpy? This is just not how I usually am, but am noticing those things since this pain hit me. I'd like to know how many others are experiencing these qualities as well.
I've had TN for some time on left side, but started experiencing severe tooth pain in my right front tooth. It was the lightning bolt type. I went to 2 dentists and an endodontist - all took x-rays and found no crack. I even had the tooth covered with a composite because I was certain that there had to be a crack somewhere, there was so much pain. I took two doses of Zithromax (Z-pak antibiotic) to rule out infection.
I went to an ENT and got an MRI sinus check - no problem there. This all took a couple months and I took hydrocodone throughout in addition to my regular TN meds. The pain is still here and it's been over 3 months.
My neurologist said bi-lateral TN is "just too rare" and it must be something dental. (!) I'm in El Paso and there isn't a lot of specializing in things like this, so I've been passed around from doc to doc. No one wants to deal with it.
From someone who's had teeth pulled, thinking it was dental problem when it was really TN, PLEASE don't do anything to your teeth. Do whatever you have to do to find a good neurologist and pain mgt specialist and help yourself with anything you can find that's topical; use the special toothpaste for sensitive teeth, apply hot washcloth to the painful area - anything you can do to abstain from dental work until you can talk with a neurologist.
Pain is exhausting and causes fatigue and crankiness, even depression. The pain you're describing in your tooth can be very deceiving. It feels dental, and the urge to get it out of your mouth is overwhelming. But the feeling of horror and regret when you find out it wasn't the tooth after all, after it's too late to get it back, is even worse. If you remove that tooth and still have the same pain or even worse pain, you won't be able to un-do it.
For me, nothing has ever happened fast when getting treated for TN. It's been a long waiting game that continues for me since 2008. I still haven't found the right med or med combo that controls the TN. I know August seems a crazy way away, but try to wait. See if you can get pain relief from a GP or someone, they might get you started on something you can afford until you can see a neurologist. I wouldn't recommend dropping $4.5k on a splint either if you can hold out strong until August.
Good luck Nannie, hope you can find something to help you soon. Pain-free wishes to you.
That was one of the most thorough responses I've read on this entire board and I've been up till midnight trying to come upon something that might be the exact journey as I'm experiencing, althought I know that no two people are the same in their progression of symptoms and search for answers. I'm going to try to just hang in there until August 1st, letting my PCP know why I'm coming in to see her and what I expect in advance. I've cancelled my return dental appointment that was scheduled for the 11th of July and feel really good about doing that. My faith tells me that God does not let anything come into our lives that He does not know about and I belive He is always with me. I'm clinging to this fact to get me thru this. I've already come thru a rare auto-immune disorder called Dermatomyositis and have been in remission, so I know I'll be okay in the end if I just cling to those who love me mose and not expect too much of myself. Again, thank you for your wonderful response. You are truly gifted in expressing yourself thru the written word. Blessings to you.
Thank you so much, it did me good to be able to give you any kind of response or advice that might help you or make you feel better. You are going to be okay. I'm so glad you canceled the dental appt - I know how it feels to just crave instant relief and I gave in to it and regretted it sorely. August is just around the corner and you can make it. Sounds like you have plenty of strength and I get a lot of strength through this help site! Remission, that's wonderful! I love to hear something like that!
If you need anything, a friend to talk to or to vent or scream, I will be here. And I will be cheering when you soon find what will help you.
Keep updating please! And take the best care of yourself that you can. Be easy on yourself :)
I believed my TN to be caused by dental pain. I also saw a dentist for emergent treatment while on vacation. It was extremely hard for me to convince myself that it wasn't dental because I had had so much dental work. However, after years of off and on pain, I realized it was TN that we treated as dental. For me the electric jolts are the deciphering symptoms. If you feel electric buzzes that bring you to your knees, it's not dental, it's TN. If someone tries to tell you it's TMJ they are just after your money. Research your specific symptoms. It sounds like classic TN to me. Drugs are obviously the first choice of action, you can get that from your PCP if they are educated on TN. I went to four neurologists and my PCP was more educated on this high maintenence diagnosis than any of them. However, get a good surgeon who is well trained for TN. Even though they are surgeons, I have found that they are more qualified, and they can do other options other than surgery. My experience was the neurologist just wanted to load me up and not give me any other options. The medications did not work for me and caused me more problems. I went to the best surgeon in the world and I had MVD two years ago. I am a miracle. I also have educated my dentist in case he comes across another TN patient that the symptoms perplex him and he doesn't feel they are dental in nature. Best wishes for a correct diagnosis and plan of action. There is help! Hang in there and pray!
I also had a tooth pulled and an implant put in...and it wasn't dental! That is frustrating but it hurt so badly I just wanted it out. It made sense. When I discovered it was brain related I couldn't wrap my head around it, it's so deceiving. Remember, that God has you in the palm of His hand and He will help you through this. God Bless!
Hi Nannie, I have just come through 4 years of tooth related TN hell. Mine started out of the blue under my bottom right teeth and it was ferocious. I had periods of remission that gradually got shorter and fewer in between. I saw multiple dentists, endodontist, oral surgeon, pain dr, primary dr, neurologist and finally a neurosurgeon. Nothing was ever found to be wrong with my teeth. Thankfully, I did not have unneccessary/expensive dental treatments performed that would not have helped anyway. If you have a good pcp , ask to try Tegretol or Trileptal. It will give you a soon indication that TN is the culprit if anti-seizure meds work. Also, find a good neurologist or neurosurgeon who is willing to help you. TN is not easy to deal with and many (most?) doctors don't have a lot of experience with it. What I have learned is that you have to be your own advocate. You have to push for aggressive pain relief treatment. I am now 6 days post op from MVD surgery at Duke. I woke up nerve pain free! In my case, there was a large vein compressing the nerve and an artery looped around it. My surgeon feels I have 96% chance that this fixed it for life. I am praying this will be the case. Surgery was a big step. But I am only 44 and have kids to raise who need a mother who can communicate. It was definitely right for me. Recovery is not the easiest or most fun thing, but overall, I am doing well and have still had not one twinge in my teeth. I am eating and talking pain free. I had forgotten what that felt like!
Best wishes to you. I hope you can find a good dr to help you get some relief.
I had the same pains you are describing except the burning part of my pain was 24/7. I went to a dentist to eliminate any dental problems initially and they found nothing. Tegretol took the majority of the pain away. A few months later another dentist found a cracked tooth and a cyst below the cracked tooth which I saw on 3d x-rays. I had a wonderful oral surgeon fix it and while the tooth feels better, I still have TN1 and TN2. The tegretol takes away the TN1 as long as I keep triggers down, but I still have the TN2 but not nearly as intense. I would start on a TN medication first and then have the Morita scan done and go from there. Best wishes.