Diagnosis TMD or TN Stabbing pains and constant ache, severe anxiety and depression

I"m new to this site. After all the doctors I've visited I'm still clueless to what I have. They say do not google or try to diagnose yourself but after 2 years, nobody can tell me what is wrong with me! It started with mild ear aches especially in the mornings after sleeping on my ears. This went on for about a year and advil took care of the pain. In april 2014 I had a 8" ovarian cyst removed along with one ovary, it was so big they said I was bigger then a 9 month old pregnant woman. After the surgery and 3 hours with mouth held open I started experiencing stronger stabbing pains and constant ache that advil still helped but they added vicodin because I was taking so much advil. I've been told I have TMD and currenly wearing a splint,taking muscle relaxers for 6 months and no improvment in pain. Last month (December) I had arthrocenesis done because my TMD specialist thinks the stabbing is from inflammation. He said I don't have much arthritis, and its mainly muscles and says I have tendenitis. So I continue wearing the splint, taking pain medications and soft food diet, going to my appointments hoping this will get better. They gave me gabapentin and nortriptyline to try, going on 2 months now and still no improvement in pain. Getting up everyday with a severe panic attack as soon as I realize I"m still in this nightmare and my life is over.. If the pain ever gets unbearable, I will not stick around and live a life full of pain. I have 3 teenagers and live on a big farm. I went from making homemade foods, tending to my garden, exercising, volunteering at church to doing nothing but ordering in food and watching tv all day everyday to keep the thoughts away. I know I suffer from OCD and severe panic attacks and depression. I go from depressed to angry.. This is considered the most painful condition, yet nobody knows how to cure it, or help it very well and some people go years with this pain, being told its in their head because nothing shows on the MRI and eventually give up because our doctors who get paid very well are not doing their jobs. Every doctor I see sends me to another doctor, or acts as if its no big deal and doesn't answer my questions or seem to care. If I were their mother or sister or daughter, they might actually listen, maybe take my file home and read over it, maybe put some effort into diagnosing me correctly. I'm so frustrated. I have many questions that doctors do not or cannot answer and I'm desperate for someone, anyone to hear me.. I cries yesterday when my son asked me to take him to the park and I couldn't get off the couch because 1. I hate life 2. the cold makes the pain worse 3. my anxiety and panic attacks have taken away any energy I have.. I feel so misunderstood. Honestly, I'd rather have cancer because they know what it is, they can treat it, and if it doesn't work you get to die and not stick around in pain for the rest of your life and let your children watch you die a little each day inside.. Please, Please if you will or can answer my questions, I appreciate your time and effort very much! Right now I"m being told I have TMD and going through treatments for that. I have the constant ache and occassional stabbing pain in right ear/jaw area. It doesn't feel like a shock, more like ice pick stabbing me deep in ear, sometimes on the outside of ear, sometimes under and behind the ear. I have a dark circle on right jaw either from the bone being swollen and that park is sunken in, or a bruise.. but its been there for 2 years, it also has a blue vein running through it. My bite is off, my right side teeth do not touch at all, only the left side. I do clench at night and hope the splint helps that. I also have a pain sometimes in the back top corner of head thats like a stinging pain, I had a injury there a few years ago that requires staples. When I move mouth side to side I hear a grinding sound and left side has a clicking cracking sound. My mouth sometimes feels tight and will not open far and I have to do stretches. Sometimes the right side of my neck/throat feels like a pulled muscle and I get this horrible stabbing pain under right collar bone if I reach my right arm behind my back. I have ringing in both ears. My jaw feels exhausted sometimes. My ears pop and feels like the tubes pop everytime I breathe in and out hard. I get migraines with aura (zig zags and partially blinded for 30 minutes before the pain comes). Sometimes my cheek hurts and my TMD doctor said the TMJ wouldn't cause cheek pain. Under my jaw sometimes feels irritated and my right lymphnode has been swollen for a year now and will not respond to antibiotics. I'm in Marysville Ohio.. Please someone tell me what to do, where to go, how to get answers and someone to actually do something about my condition. I'm trying to understand the difference in stabbing pains and shocks? Mine are more stabbing pains which is common with TMD, but how do we know its not TN if that's a symptom of TN too? What are your stabbing/shocks like? Can you describe them the best you can.. is it like a real electricuted feeling? Thank you for reading this, thank you for taking time to help me. I pray for everyone with TN and TMD and my heart goes out to everyone who suffers with these conditions. I was reading about this on the internet and found a 10 year old girl who has TN and went through the first surgery and it came back, and her mother lays beside her while the little girl screams and crys in pain and the mother cries too because she feels so helpless and cannot even hug or touch her daughter. Something so horrible like TN should be doctors very first priority. Even if its not fatal.. Pain that's unbearable, should be a top priority.. We need more research and doctors trying to figure this horrible thing out! Thank you very much for taking the time to respond if you will please.

Amanda Voss

hi amanda. I am 1 yr in so still new to it too. I found this site some months back,and the peeps on here are full of knowledge. I dont live in america,so am not sure how your health system works,and how fast.However ,you need answers,like we all do,and once you get the diagnosis,at the very least you will know what you are dealing with.I have a jaw disorder,and have a mouth guard,it has helped a bit.I am currently being told i probably have ATN ( Atypical trigeminal neuralgia),however i am to see the neurologist for the 1st time on monday,so could well be something else.I am on nortriptyline.But what works for me,may not work for you.You have to keep trying different meds to find your right one.I cant tolerate anti seizure pills.There is a lady on here,who has a list of meds,and side effects,and im sure she will pop along soon.Everyone on here does give good advice,and they know exactly how you feel.Honestly somehow you carry on,you may not think so right now,but you do,and slowly once you find your right medication,you will slowly lift yourself up. Barb

hi Amanda, like you i am new here. i just posted "brainstorms". you may find the info on TMD research helpful. Feel free to msg me, we're all in this together

Hi Amanda. Sorry you need to be here but this is a great resource and very supportive. You mentioned going to several doctors. Were any of them neurologists? Usually they are best for diagnosing/treating us. Sometimes I think doctors forget that we can (and very often do) have several different issues going on at the same time. From your post, it seems like that is happening with you as well. In that first year before I was diagnosed, my dentists kept wanting to fit me with a very expensive splint for TMJ. I would have just thrown my money down the drain on that. I noticed that you have tried gabapentin and did not feel llike it helped you at all. Can you let us know how you are taking it? How many mgs how many times a day? Gabapentin is one of the first drugs doctors often use because it is one of several that seems to help people pretty quickly. When I was first place on it I found some relief within a week. Regarding the stabbing around your ear, you might want to read about geniculate neuralgia.

Hi Amanda,

I am so sorry to hear about all you are going through. I can relate on many levels. I would suggest looking in to Cleveland Clinic. Being associated with a big hospital, they have a lot to offer. I just started seeing Dr Baron there, and soon will see a neurosurgeon. They have a Facial Pain Clinic, TN Clinic, and even a 3 wk program where you go all day each day.

I live in GA, and have been all over the US for treatments for 5 years. No luck yet, but I am not giving up.

Best wishes,

Jen