I am really new to this and I am just as confused. I have toothpain that is controlled with TN medicines most of the time and ear pain on one side that is really deep and spasms in front of the ear. My neck gets very stiff before an attack and I get migraines that make me sick to my stomach from low vibrating noises like the printer at work. I keep questioning whether I even have TN. My symptoms are weird and don't fit the mold. I went from dentist (no dental problem) to urgent care ( diagnosed with ear infection) no infection to Emergency room diagnosed with TN. Two Neurologists concur. I just don't buy it and I am driving my boyfriend crazy to the point he won't let me say anything but I have TN. I still don't know the medicine helps a lot but the ear pain is not under control and my neck hurts and gets stiff all the time. Oh yeah and I have had two MRIs and one was very high resolution no trace of a vessel hitting a nerve. I really want to know what is wrong with me if it is not TN. I went to neurosurgeon and he told me to wait to have the MVD surgery because it has only been four months. I started on Tegrotol and was allergic to Dilantin and was allergic again to Neurotin was ok except grumpiness and water weight gain and now I am on Oxycarbanzime and Baclifin. I am now having more pain and constant tinnitus of my ear. UGG. I can't figure out what is wrong with me. I just wish I could get the pain and sick feeling to go away. Please respond I would like to talk to people that may understand. Thank You.
From your report, I suggest that you are likely dealing with several types of facial neuropathy plus referred pain. If the pain in your teeth is achy and burning, more or less constant, then that element might be called "trigeminal neuropathy" or "atypical trigeminal neuralgia", depending on how long ago the examining doctor was trained. The ear pain is most likely geniculate neuralgia (aka "nervus intermedius neuralgia") due to compressions of a small nerve branch between the 6th and 7th cranial nerve. It's unlikely that MRI will pick this one up due to its depth below the surface. Spasms on one side of your face are likely traceable to compressions of the 7th cranial nerve.
Tinnitus could also be due to vascular compression of the auditory nerve gangion, but it's not an easy symptom to investigate with MRI. A lot of blood vessels that cause problems are so small that they aren't seen in even the best resolution imagery. Your positive response to anti-seizure meds like Carbamazepine (Tegretol) or Oxcarbamazepine (Trileptal) is a much more reliable indicator to confirm facial neuralgia or neuropathy, than imagery.
Stiffness in the neck could be any of a number of things, including referred pain from the nerve compressions. You should already have been checked out for TMJ and spinal meningitis, so I wouldn't expect either to be the culprit. Radiculopathy from a nerve pinch somewhere in the cervical spine might also be involved.
Please be aware that although I have read the medical literature of face pain for almost 20 years, I am not a licensed physician.
Regards,
Red Lawhern, Ph.D.
Resident Research Analyst and Moderator
Living With TN.
Thank you for your response I really appreciate it. I did have my case looked over by a TMJ specialist and he concurred with the neurologist that the TN diagnosis is correct. I have not been checked for spinal meningitis however. I think I may do that. I am shocked that, that many nerves could be effected at once. This has really been a life changer so far even though it has been just four months. I'm trying to remain at my full time office job but have had a really hard time staying at work with the pain especially with low vibrating noises or a lot of air conditioning. I am coming to the point where I realize I have to live with this and manage it and its really difficult. I still hold out some hope that it may go into remission for a period of time. I asked my neurologist what about the ear pain and if he could look at the nerve that starts with gloss (sp?) during the MRI. I'm not sure if he did but the neurosurgeon said they could see all of it and did not see anything obviously hitting the nerve.
One of the observations offered in Dr. Ken Casey's two-hour video linked from the main page is that in experiments comparing the accuracy of radiologists and neurosurgeons in interpreting MRI prints generated from a mixture of TN patients and non-symptomatic control group, something like 15% of radiologists got the diagnosis right, while 85% of neurosurgeons did. The nerve you're looking for was probably glossopharyngeal (10th cranial nerve). Pain in your teeth isn't consistent with that source, though pain in the palate and throat might be.
Regards, Red
Denial, and frustration with this diagnosis when the symptoms don't fit right seems normal, I also felt that way. My doctors never mentioned the possibility of Atypical TN, so I was very unsatisfied when the doctors kept asking me about "electric shocks" and "episodes" when my pain NEVER stops and is more of a crushing deep ache. I fought the diagnosis and did a lot of research before coming to terms, even then I didn't want to admit this was my problem, because I didn't see any chance of a "cure." After my first MRI the Neurologist cheerfully congratulated me on not having any evidence of a brain tumor, or an aneurism. I went out to my car and sobbed on the phone to my mom, I WANTED a small, operable brain tumor! so I could schedule a surgery, and be done with it! In my mind that was my best case scenario. It has been 10 months since my pain started, and 6 months since I first heard the words, "well it could be trigeminal neuralgia..." I am still in the middle of grieving my "before" life. I have done denial, and anger, but I don't think I have made it to acceptance yet. I hope you can find doctors and other guides to finding solutions, if it really doesn't feel right look into other options and try to find doctors who will listen (I have not had much luck with that.) I wish you pain free days and peace of mind! Good Luck!
Î am sorry you feel this way. It is of course hell, but you have come t the right place. This is a place where it is ok to be emotional, to rant and to despair. Also, it is a good place for knowing that you are not alone in this.
I hate to burst the bubble, I do have to tell you that your symptoms fit my mould. I have both regular and atypical, as many of us here, and neuros often only want to hear about the shocks. I have definite tooth pains, deep ear pain, and get triggered by any rumbly noise. I don't get a migraine from it, but facial pain, tension headaches, plus I may feel drained and ill. I also have a very strong connection between neck and face.
As Red said, if you respond to the meds, that is actually a diagnostic sign. But first and foremost - it is a good thing. Enjoy the fact that you can get relief! Also, and very importantly: life is definitely not over just because you get TN. I am in my 16th year with this, and still work full time, and I want to give it all my effort to keep that up.
You have a great spirit, keep that up. Whatever it is you have, you can tackle it. If you feel you can't, come to this forum. We will be here.
Oh, boy, Michelle. I sure understand what you're going through. I have that deep ear pain. It's like an ear infection, but there's no infection. Constant. Burning. Boring. Plucking. Stabbing. Ugh. My neuro refused to consider geniculate neuralgia and only tried three meds on me before throwing his hands in the air and telling me I need surgery (no insurance). I've had to leave work and have applied for disability, but it's a long road, and I'm not counting on getting it.
I'm sorry you've been forced to join this really sucky club ... the TN owners group, so to speak, not this wonderful, supportive group of fellow sufferers on livingwithtn.org. Just as an aside, I wear ice packs constantly now, and while they're still ice, I do find some relief. The ice seems to turn off the blow torch emitting from my ear, which is such a huge relief.
Oh, I'm also still in denial, even though it's been 2.5 years. I keep wondering if I'm being a hypochondriac (because wearing ice packs is such a sexy and enjoyable look). Yup.
Maybe one of these days we'll all wake up, and it will have been a bad dream.
Beth
Wow, it is great to hear others have some of the same symptoms as I do. I was feeling very alone looking up ear and jaw pain and coming up with nothing. I wanted to just go get MVD and get this all behind me, so I could have better career outlook or I could have a child with my new partner (of three years) even though I do have the best son ever from my first marriage. Part of me feels like my old life is gone and I don't yet know how to control the pain in my new life. Everybody from my child my boss and my partner are looking to me to hold things together. I also feel like I am in a grieving process and so far I have just hit denial and fear. I don't want to lose everything I worked so hard to build. I really went through the ringer in 2012 with a layoff and divorce. I saved my home from foreclosure and found a great new job and relationship. Now all I do is complain take time off work and I am not the fun person I used to be. I know I need to talk to someone besides by boyfriend but who a grief counselor? I would love to find a weekly support group. I don't think I can just pull myself up by the bootstraps on this one I am going to need some help. :/
I've been going through denial too, Michelle. I had a back molar extracted that seemed to be perfect after going to 3 endodontists and 3 oral surgeons and a periodontist. I only had one facial attack back in November which was horrific, but the continuing problem has been very painful gums and teeth on the left side. By not chewing anything since November, I seem to have the facial pain under control, but for a long time I couldn't brush or floss on that side. Right after the extraction, the molar next to it started hurting like crazy. I begged these same dentists to help me but they couldn't find anything wrong (8 x-rays). After 4 months I finally forced an oral surgeon to remove that tooth too. In the meantime I had a negative MRI and have been taking Tegretol since March. All of the dentists kept saying it was Trigeminal. The last extraction seemed to be necessary (maybe it was cracked when they took out the first one). And for a months I have had no facial pain just slight in front of my left ear. I was even able to brush and floss on the left side again (had been using a surgical toothbrush before). But the dentists all said that TN comes and goes. Last night, out of nowhere, the teeth and gums on the left side suddenly started hurting - this time worse than before. I ended up taking 3 hydrocodone before it settled down. Today it's not hurting but is tender so back to using a surgical toothbrush. I guess maybe the lesson here is not to confuse TN with teeth problems, even though you desperately want it to be. Now I fear that I lost 2 perfectly good molars and proved nothing. The second extraction is not healed yet, but when it does I will know for sure whether it's truly TN or not. I still do no chewing (since last November) and really miss pizza and salads. My GP says that an increase in Tegretol might be necessary. I'm going back to the neurosurgeon in two weeks. Keep being your own advocate, Michelle, and get more opinions from other doctors if need be.
tyGrieving is fair. It is, after all, going to be a big change, and you did lose something. I think a mental practitioner is a good idea for people in a serious, long term pain situation. Also, it does take a lot of getting used to, and chances are it is going to be an unpredictable journey. BUT - you are still you. You know yourself best, even now. And there are some things you can do. First and foremost begood to yourself. Do whatever floats your boat that is achievable and relaxes you, and try to avoid things that don't. Itake hot baths , cook a lot and do yoga, other people do other things.
If you cannot hold it together, that is ok. ifyour partner is a keeper, they should understand that the beginning is a shock. Bring them to the doctor and let them get info firsthand, it can make you feel less hysterical about things. It is really ok to grieve and be angry. On the purely practical level, you can try several things:
- Increasing meds is almost always necessary in the beginning. Most of us also develop a degree of tolerance over time, and meds have to be changed or increased. Do this together with your GP. Go frequently, and don't be afraid to go high. I am for instance on 1200 mg Tegretol and 100 mg nortryptiline
- Buya aheatpad and an icepack, keep them at the ready
- Monitor your pain. Are something in particular making it worse?
Good morning. I've been away from my computer for 10 days and just now catching up a bit. For several of you, I would make a recommendation: contact one of the members of the TN Association Medical Advisory Board for a second opinion. Particularly with the atypical form of TN, there are mixed opinions on whether MVD is a viable treatment. Clearly, outcomes are not as often successful. But for quite a number, quality of life improves after MVD. See http://fpa-support.org/about-tna/tnas-medical-advisory-board/.
Second: I recommend a thorough viewing of the video link to a 2-hour presentation on diagnosis and treatment of atypical TN, by Dr Ken Casey, chairman of the TNA MAB. The link is near the top center section of our main page.
Third: deep stabbing pain in the ear without evidence of infection may be recognizable to a properly trained neurologist as geniculate neuralgia (aka "nervus intermedius" neuralgia). MVD can be used against this medical problem, though rates of success aren't particularly high (~50% from what I hear) due to the deep penetration required in order to get at and pad out the compressions of a small nerve which branches between the 6th and 7th Cranial nerves.
I wish all of you wellness.
Go in Peace and Power
Red Lawhern, Ph.D.
Resident Research Analyst and Moderator
Living With TN