I've had this for almost a year and half...minor compared to some of you all, I know. I am still stuck in the I know they missed something serious part. I have constant throbbing burning pain in my left 2nd and 3rd division...occasional jabs and shocks. My tongue burns like mad and I am convinced they have missed something on my tongue, even though my rational brain says I'm smarter than that and so are they. The doctors are calling it "idiopathic" or i don't know. ha! they say likely a virus. How in the world did you all move on from the fear of what they'll find when it's too late?
I've seen so many doctors I have to make a list...from dentists, endodontists, orthodontist, endocrinologist, GP, ent, neuro...and had neck ultrasound, brain mri, neck ct...loads of blood work, dental xrays. I swear something is wrong with my tongue and keep coming up with reasons to go in...to gp or dentist...and they see nothing abnormal. Am I that crazy? lol! Wish I would have paid more attention to my mouth's appearance before all this! I do have the constant pain in ear, teeth, throat, roof of mouth...but it's the tongue that gets me the most.
I have had my facial pain for ayear now. Not a day goes by that I dont wonder if there is something else going on in my jaw and teeth. Like you I fear it will be too late if they did find something else therefore it causes alot of anxiety.
I’ve only been to 6 different dentists, 2 oral surgeons, a neurologist and my family doctor. The dentists all took xrays and said they couldnt see anything wrong on the xrays The oral surgeon said everything was normal. The family doctor suggested anxiety as a cause. Lol. Im not spending anymore time or money on “experts”.When my teeth fall out or my head swells horribly I guess I’ll go see someone. Then they will have physical proof. ")
I saw an oral surgeon too. My husband is SOOO supportive and this is the one appointment I took him to with me. I was so scared I was near panic attack...and my lovely husband tells this doctor that I have been diagnosed with OCD! nice! I do see a counselor...but have never taken any meds of that sort...nor for physical illness...since all this started. I actually have a drug phobia...now I'm like what can I try now? Good grief...this is a life changer. But I am thankful everyday for the diagnosises (i know not a word) I have not received. As much as it hurts, I can deal with the pain...it would be nice to know why. And it's funny how I look forward to a rotten tooth someday!
I was told I was probably depressed before my face pain started. Even if I was depressed I didnt have pain in my mouth until I had a wisdom tooth extracted. Thats when the pain came. Deep jaw pain and pain in my lower front teeth. I only have 6 teeth on the bottom and 8 teeth on top. I had been taking amitriptyline and after 8 months I decided to taper off of it to see if my pain was gone(the oral surgeon said the pain would be gone) The pain was gone. When I went back to the dentist to get xrays done for making my impressions for partials my mouth/jaw/tooth pain came back. I can get by with ibuprophen but i still have the deep ache in the jaw and tooth that makes me want to pull out my tooth myself. Your husband was sweet in telling the oral surgeon you have ocd. He thought he was helping. It is great you have a supportive husband.I was going to go to a counselor because I get huge panic and anxiety attacks waiting for the pain to get worse. But I havent yet. I would think your burning tongue would tie in with your TN? I had my upper teeth and gums burn and feel like they were on fire. I thought it was an allergic reaction to a new toothpaste. But it was part of my face pain.
Yes...they tell me the tongue pain is part of the TN. I hope they know what they're talking about. Probably do. Apparently I just need more time to believe it :)
I think there was some discussion about the tongue issue recently. IIRC, it was something Cleo posted in the last two days.
Hello,
My pain started March 2013 and hasn’t left even one single day. I have terrible ear pain, tongue, back molars and even some in my neck. I have had MRI,s, 3 CT scans, PET scan, tonsillectomy, lingual tonsillectomy, neck dissection of (4) lymph nodes and nothing came from all those test. My pain is constant, everyday, hurts worse when I turn certain ways. I don’t have electrical type pain. I’m so worried, even after all those test. They also cut a piece of my hyoid bone off. They believed it maybe a problem, but still have same pain after all those test. Neurologist told me this didn’t sound like GN of TN. I’m just lost and truly fear cancer. My pain is both sides, but more on the right. Tongue burns and tingles, ear hurts and sometimes feels like water running in it and pressure. Jaw pain, back molar, neck, lip tingling and many other places. If I have neuralgia it would be every single nerve nearly. Somebody help me. I hope this helps you!!!
Also throat pain!
wellington90 said:
Hello,
My pain started March 2013 and hasn’t left even one single day. I have terrible ear pain, tongue, back molars and even some in my neck. I have had MRI,s, 3 CT scans, PET scan, tonsillectomy, lingual tonsillectomy, neck dissection of (4) lymph nodes and nothing came from all those test. My pain is constant, everyday, hurts worse when I turn certain ways. I don’t have electrical type pain. I’m so worried, even after all those test. They also cut a piece of my hyoid bone off. They believed it maybe a problem, but still have same pain after all those test. Neurologist told me this didn’t sound like GN of TN. I’m just lost and truly fear cancer. My pain is both sides, but more on the right. Tongue burns and tingles, ear hurts and sometimes feels like water running in it and pressure. Jaw pain, back molar, neck, lip tingling and many other places. If I have neuralgia it would be every single nerve nearly. Somebody help me. I hope this helps you!!!
so sorry for all your pain. I can feel the worry in your response. I have felt that worry...the pain hasn't really gone but I am dealing with the anxiety better than I was about a year ago. I have a difficult time believing all this just happens but if they can't find it, then I can only try to trust that they have ruled out what they say they have. I got maybe 40% relieve with Lyrica, but am on week 3 of tegetrol and a little worried to jinx but I think I may be able to get 60% relief...it's jsut that it seems each week i need more and the stomach effects take that long for me to get used to. I haven't lost hope though...hope is something to try to hang on to...because it's always there. I sure hope you can get some relief...have you tried any of the meds? I tried neurontin (gabapentin) it helped none but I only got to 600 mg a day, amitryptiline helped me relax and sleep but i quit recently w/the tegetrol because i just felt drugged and wasn't sure it was helping anymore, lyrica as i said def helped but was very expensive and i wanted to try tegetrol which is helping too. I also have trileptal in my mind I could ask to try. Ask your doctor for lidocaine gel...it helps me sooo much to apply with qtip to tongue. Short lived but makes the tongue pain disappear for 15-20 mimutes. I use it when I have or need to talk alot, or just a few times here and there...after I eat is esp bad. My pain sounds very similar to yours and is pretty constant too.
I know it sounds hokey...but if you can find a mindfulness clinic or short class you can learn some good techniques to deal with anxiety and physical discomfort. Helped me. Did not help pain, but did help me. if that makes any sense :)