Help! please read!please reply!

OK so I need I information please all of this is so confusing. Here’s my story short version. I had a bonded fixed retainer that was on my bottom teeth for about 13 years removed by my dentist. Immediately that night all of those lower teeth started to throb. Few days later my entire inside of my cheek felt like acid was burning it. I kept going back to the dentist and he kept insisting that my teeth were fine and that taking that retainer out should not have caused any pain. I went To a second dentist same. Endodontist begging for root canal same thing teeth are fine. Here we are 8 months later after oral surgeons oral medicine drs internal medicine u name it I’ve seen it. I’m now working with a pain management Dr who right away said tn caused by “trama” I had MRI done which came back fine an MRA to check blood vessels that came back fine. She’s now referring me to my first neurologist. The problem is I’m in 24/7 pain. One particular tooth on the same side that burns ( the left) throbs 24/7 I literally want to rip it out! What do I do??? What can be done?? If test show nothing what next?? Will this ever heal if it was trama?? Could it just be a coincidence?? I have tried elavil nuerotin. I now take kolonopin ( which I have for about 6 months) the kolonopin helps the burning. I also take lyrics now. But my tooth is throbbing!!! Nothing helps the tooth. Since no test show anything does that mean no Dr will do gamma knife MVD etc?? Is there some know and of block injection they can do?? PLEASE HELP ME

Lyrica*

I’m desperate for help my quality of life is horrible I’m so depressed I want my life back 8 months of 24/7 pain pleaaeeee help

With the risk of sounding like a broken record, Go and see a physical therapist of sorts to check your neck. An MRA of your neck although fine does not exclude other problems, which could be affected by your dentist. A cheap suggestion, and by no means conclusive one way or the other but may be an indication, grab an ice pack ( e.g. frozen peas wrapped in a damp tea towel) and place on the back of your neck for five minutes and remove for five minutes, then repeat a further four times. It may help with any neck trauma induced inflammation and reduce the action on the trigeminal complex. Worth a shot.

I will give it a try. I was also given prednisone for a month which helped not one bit

Thank you

I'm surprised that you weren't referred immediately to a neurologist before the pain management specialist started trying meds. The medications most often prescribed for the kind of pain you describe would be Tegretol, Trileptal, Neurontin, or one of the tri-cyclic antidepressant drugs (Amitriptyline, Nortriptyline, others) which have a cross-action against neuropathic pain. Lyrica is also sometimes used, but a lot of patients report severe side effects with it (all of these meds can have side effects, but Lyrica seems particularly problematic). Klonopin seems to have a quieting effect for some people, though it doesn't seem to be recommended as a first-line med by organizations such IASP.

As for whether removal of the retainer was responsible for emergence of the pain, that might be hard to definitively prove. Possibly 20-25% or more of patients who are members of the site have reported emergence of their pain following a dental procedure (removal, root canal, sometimes even cleaning -- though that seems less probable). Direct injections of anesthetic into the Lingual nerve might be implicated. Some of our members feel that over-extension of the neck during prolonged dental work might be a cause. Sorting out who shot John is often a pretty ambiguous project.

Regards, Red

Question tho red …if everything comes back fine on MRI or MRA are you not a canadite for procedures such as gamma knife or injections? She said if the lyrica didn’t work ( which its not) that tegretol would be her next choice. I’ve begged for some sort of injection but they claim they wouldn’t know where to put it. Please help me . I need as much info.

Neurotin and elavil ( amtriptyline) didn’t help either.

Isn’t it a coincidence I was 100% fine until the day of the removal? There has to be a connection. She’s very optimistic that the nerve will heal but they heal very slowly . its been 8 months!! They claim lyrica is the best

What do you think the neurologist is going to do? What test are left? My mom was speaking to my brothers doctor about me and said he should do a nerve conduction study test? Is that something most people get done??

The chief usefulness of MRI is to rule out tumor, AVM, Cysts, or other structural issues as causes of your neuropathic pain. While it may confirm a compression of the nerve by blood vessels, these compressions are quite common in the general population that do not present with facial pain. Likewise, on the order of 10% people in whom MRI detects no compressions, later prove to have them when found during the exploratory phase of an MVD.

With the distribution of your pain throughout your lower teeth on one side, and then into your cheek, I can understand why a non-specialist in facial pain might not favor nerve block injections, lacking a definitive place to do them. Likewise, be aware that half of all successful Gamma Knife patients have recurrence of pain within three years -- so this alternative seems to be a rather mixed blessing. If your pain is constant and throbbing in nature, then you might not be considered a good candidate for MVD, as outcomes of that procedure aren't nearly as good as with typical TN and its volleys of sharp electric-shock pain.

On balance, I suspect you may need to be tried on several meds for periods of up to a month. At one time, other members here have counted over 70 medications or combinations that have been tried for the constant pain of "atypical TN". If Elavil didn't help, there are 10 to 12 other meds in that class. Tegretol also helps some people with constant burning pain. No two patients respond to meds exactly alike (this is one of the things that seems crazy-making about facial pain disorders).

Concerning nerve conduction studies, I will have to leave it to others to comment. I've talked with some patients who had such a study done, who experienced terrible breakthrough pain under the stimulation used in such studies. I don't know how large a risk this is, and I don't know what the neurologist hopes to demonstrate by doing one. That might be a useful question to ask before you have someone stimulate the nerve electrically.

For your own protection, be aware that I'm a medical layman who reads a lot of medical literature. But I'm not a licensed physician, and you clearly need to talk with one who sees and treats a lot of face pain patients.

Regards, Red

The kolonopin keeps the burning at bay. All of my bottom teeth don’t hurt anymore for 95% of the time since its started its specifically the bottom pointy tooth to the left only. Do my symptoms sounds utterly crazy to you or have you heard of others with just one tooth causing pain? Do a lot of tn people have burning or is that extremely rare? She said nerve damage causes burning …I’m just so confused by all of this. I’ve now been taking lexapro an antidepressant for the past three or so months BC I’m depressed. Who wouldn’t be? So I don’t know if I can try another or tri cyclics BC you can’t mix two antidepressants …its a win lose situation…can a neurologist do injections or would that have to be performed by a neurosurgeon? Thank you so much for all your help

I need a quick fix I’m literally going to go crazy… Like balloon compressions all these different things burning of the nerve why can’t they just do it? How long do they expect you to wait? I need help NOW I can’t wait any longer. Does a neurologist perform these things?

Have you heard of the “nerves healing” themselves and someone just being ok?? Or is that bs?

You're not crazy. A lot of TN patients deal with a mixture of two patterns of pain: 90 minute bursts of elecxtric-shock stabs are called "Type 1" or "typical" TN, and constant burning, throbbing pain are called "Type 2" or "atypical" facial pain. Both are considered to be forms of neuropathic pain due to some form of nerve damage or compromise. The distinction between "trigeminal neuropathic pain" due to some discrete nerve damage, and "TN-2" isn't always clear or helpful since the two medical entities are almost always treated by the same protocols and meds. Pain in a single tooth for periods of weeks to months is also not unusual in TN, and it can be hard to discriminate from abscess pain. And yes, nerves can "settle down" after trauma over periods of weeks to a few months. Eight months sounds on the long side to me, though you seem to have had some improvement over that period.

A neurologist can do nerve blocks, though not all may choose to do so. I haven't heard of many neurosurgeons who use that class of therapies. A neurologist can also (and should) set up your entire medication profile including the anti-depressant med or meds. If there are pain management specialists in your area, the neuro guy may want you to see one instead of him/her. Neurologists are frequently very heavily over-patronized, with horrendous waiting lines. That may not work well if you're still being trialed on meds that require oversight and evaluation monthly.

I realize that working through the depression and pain for long periods is frustrating for you. But please understand that your physicians are trying above all else not to make you worse. Balloon compression, RF Rhizotomy or glycerol rhizotomy are all possible alternatives if medications simply don't work for you. But all of these procedures have a risk of either failing after short periods, or actually making the pain worse. So not jumping in with heroic measures and surgery until other alternatives have been thoroughly explored is likely good medicine.

I'm off for bed. I'll look in tomorrow. Perhaps others can comment further on the role your neck might be playing in all of this. With pain concentrated in one tooth and somewhat responsive to medication, I tend to be a bit skeptical of the trigeminal plexus as a source of the pain. Others here likely hold opinions different from mine.

Regards,

So you think it may not be tn? How can your neck affect your teeth? Mine neck doesn’t hurt in the least. Thanx so much

As for mixing two antidepressants ... Yes, you can, depending on what you're mixing. I have taken Prozac for 15 years for depression that began post-partum. I have tried to get off of it from time to time because I don't like the stigma I personally attach to clinical depression, but my symptoms returned (pacing, not sleeping, sweaty palms, panic attacks). Several years ago, after I had a double cervical discectomy and fusion (two discs removed in my neck and the vertebrae fused together), I was still in pain and another spinal doctor (who did not perform the operation) prescribed Cymbalta (an antidepressant) because it is also used for pain. Combined with the Prozac, I had a terrible headache for several days that didn't go away until I stopped the Cymbalta. After my facial pain developed and progressed over the last year, my neurosurgeon suggested Elavil, and I said no, I'm afraid to mix it with my Prozac, which I truly need. He agreed. At a routine appointment with my psychiatrist who prescribes my Prozac, he also suggested adding a low dose of Elavil. If I didn't feel better after a week, or if I experienced any adverse side effects that I couldn't deal with, I could stop it. I tried it, and I am sleeping better, I generally feel better, and my facial pain is better. Not gone entirely, but better. My point is that you CAN mix two antidepressants, although you must be careful what you mix. That is why you must give your complete medical history every time you see a new doctor. I have also learned that doctors "practice" medicine -- meaning that they don't always get it right the first time with every patient. Like Red said, no two people react the same way to the same medications or mix of medications.

I have been enduring my facial pain since July of 2014. It started as a toothache on an upper right molar. I had a root canal on a different tooth, same side, about a year before, so I don't know if that has anything to do with the TN symptoms. I have reacted negatively to four different anti-convulsants and refuse to try any more. My migraine medicine (Imitrex) seems to help it -- probably because Imitrex narrows the blood vessels and then they don't press on the nerve. When you see the neurologist, inquire about this medication. Neurologists also treat migraine, so perhaps they could prescribe it. However, it is not something you take daily. It's on an as-needed basis.

One thing I have found over the last year is that it helps to lower your stress level. I am what many people view as an intense and emotional person -- I get worked up easily over little things. As I have matured, I've gotten better about it, and I'm sure Prozac helps. I've learned to be more patient over time as well. Try taking some deep breaths and relaxing with meditation or prayer. A heating pad at the bottom of your neck/shoulders helps me relax. Maybe even a muscle relaxer would help -- early on in my TN experience, my endodontist prescribed Flexeril and it worked after my first TN attack (which at the time I didn't know was TN). I'm not into yoga at all, but lots of folks tell me it helps relax the mind and body. Maybe it'll help you.

Just be careful what medicines you mix. Too many medicines to calm you could be harmful to your heart and breathing.

While Red says he reads a lot of medical literature, I've been around the block a few times and only speak from my own experiences. When you go to the neurologist, take a list of questions in a notebook. Write down his answers to your questions. Maybe even take someone with you -- sometimes other people hear things you may miss because you are overwhelmed, not to mention miserable.

There has recently been a prolonged discussion on Living With TN of a theory of "cervicogenic face pain". The basis of that discussion is the fact that the deepest roots of the trigeminal nerve originate in a nerve complex at C2-C3 in the cervical spine, before emerging from the brain stem just below the skull. I don't personally see strong medical evidence for that theory, but others who contribute here do. To read some of the postings, run the term "cervicogenic" in the search window at top right on this page.

Regards, Red

Jennifer Muir said:

So you think it may not be tn? How can your neck affect your teeth? Mine neck doesn't hurt in the least. Thanx so much

That's good information for me, Red! Thanks. My face pain didn't start until my disk at C4 went (I am putting off surgery until I get the face pain controlled). I have degenerative disc disease, so I wouldn't be surprised if my upper discs were on their way out!

Thank you also for sharing all that you know to the new members of the group and pointing us in the direction of past discussions so we don't have to hunt so hard!

Richard A. "Red" Lawhern said:

There has recently been a prolonged discussion on Living With TN of a theory of "cervicogenic face pain". The basis of that discussion is the fact that the deepest roots of the trigeminal nerve originate in a nerve complex at C2-C3 in the cervical spine, before emerging from the brain stem just below the skull. I don't personally see strong medical evidence for that theory, but others who contribute here do. To read some of the postings, run the term "cervicogenic" in the search window at top right on this page.

Regards, Red

Jennifer Muir said:

So you think it may not be tn? How can your neck affect your teeth? Mine neck doesn't hurt in the least. Thanx so much