Hi Ian,
No I take Tegretol and Baclofen that works great for me.. but with bad side effects. I've spoken to my neurologist regarding surgery but with ATN he thought the medication route would be best until they no longer work... Surgery is the last resort for him. I've read many posts for and against surgery and the percentage rate of success.. I'm sticking with the medication for now. This is just my case and not for everyone else. Hope you get better soon. I would like to hear more regarding you procedure please post it.. Thank you. :)

Hi Ian,
In general, ATN patiens are not helped by surgery so often as TN patients (source: www.livingwithTN.org), and out of surgeries for TN microvascular decompression is said to have the highest success rate. Gamma Knife is preferable for people who are too old to have MVD, or people who have other physical concerns along with TN. I've often read that for ATN a combination of anticonvulsants and antidepressants, such as amitriptylene (spelling?), is most effective. I take Lyrica at 150mg/day and a low dosage of antidepressants and I'm doing reasonably well. I have also been helped by acupuncture and chiropractic adjustment of my spine. Some people swear by lidocaine patches or cream, but I would think these help if your pain is located more on the surface of your face (mine is deep in the teeth/jaw bone). If you don't have triggers or at least not too painful triggers then gentle massage of the face, neck and head is great, I think. Good luck with your treatment,
Oldriska

Thanks for that info Oldriska, can you please tell me what anti-depressant you are on? Thanks Ian

I had Gamma Knife for ATN - it just made thing SO much worse, as the side effects of the GK are horrible. Plus I went to several Neurologists afterward for so much pain and they all said GK does not work and should not be used on ATN. I was so desperate to try anything so if I can save one person from not going through what I go through everyday of my life it would make me happy. Please do your research first. God Bless !

i have been told no cure for atypical which is also my diagnosis, but i did have the motor cortex stimulator implant surgery six yrs ago and it helped me a lot. doesn't work for everyone but i am so glad i tried it. i figured i had nothing to loose and it wouldn't destroy anything. so i am on maint. meds and only take addtl if in flare up. big flare ups are at a minimum . drs could never get my pain under control with meds so this was a good option for me. i see where some have had MVD surgery for atn this does not work for atn. but everyone must research and make their own choices. i hope you find help and praying for a cure.
blessings for pain free days for you
jady

i would like to no more about what you did to get rid of some of the pain, and what doc would do this?

Hi Cute Angel, Did any of those suggestions I sent to you help you? Stay strong, Ian

I have had ATN since 04/09. I had GK in 04/12 but the GK was directed toward my cheek area (after two succussful spg injections) not the brainstem for TN. I am STILL in pain. Not as bad, but, it's is still there. So, managing with gabepentin (900mg/day), chiropractic, massage and acupuncture. Know what flares it up (my pain is 24/7), know what makes it feel better. I do not have any other options since they tell me GK was the state of the art procedure at the moment. I was just prescribed Lyrica and I am going to try tonight. I also take Tramadol to perform activities like skiing. Skiing hurts (bumping around) but the Tramadol numbs the pain. Things that flare it up: Alcohol, stress, talking, exercise, airplane travel. Sleep and laying down are the best for pain relief. Also sauna, steam rooms. Cupping with the chiropractor is really helpful for pain but very temporary. Also get huge relief with Benzocaine on my tooth area all day. Just managing until they find a better cure. (many, many $$$s later, might I add) Hope everyone can have a happy holiday. 2013 is going to be our year!!!

One more thing. I tried an ozone injection last week. Need two more treatments to see if it will relieve pain. Will let you guys know.

Thank you for the information.

Hearts

Hello Aussiewriter! I'm sorry to hear that you have been diagnosed with this illness. I have TN2 (atypical) with chronic migraines. They even say I may have Trigeminal Neuropathic Pain. I've had TN for over two years now and I see a pain management specialist and take morphine 50mg and percocet 10mg every day to try and help ease the pain somewhat. Initially I took about 8 different anti-convulsant meds and had the MVD surgery in May of 2011. What you will find in your research is that what helps one person may not always help another. It really depends on where your pain is and what your particular symptoms are. Like for instance my pain increases when brushing my teeth but I know another atypical sufferer who says that doesn't bother her but when food is on her teeth after eating she has to go brush right away or it hurts. I have seen about 8 different specialist. One specialist recommended Gamma Knife and he is the only one. All others told me that it would make me worse and would not take my pain away. My nerve was injured by a novacaine shot and dental work. I have constant burning, stabbing pain in my left cheek going to ear and down lower jaw. It sometimes goes to eye. It never goes away, meds just ease somewhat but I'm always in pain. It feels like someone is stabbing me with a hot fire poker in my cheek over and over and over again and again. My last neurosurgeon stated my last option would be the peripheal stimulator but to try tens unit on my face and see if it helped if not, then this would not be for me. Well, the tens unit gave me headaches and overall made me feel icky. He told me then I should not do it. I basically am faced with taking narcotics every day and indefinitely until more research is done and they find another possibility. I'm not trying to make you give up hope or to make you stressed. It's just more complicated to treat. I just want to be honest. Just be very careful with any surgeries, rhizotomies, etc. I was told any of this would definitely make me worse. Really do your research and make sure all your docs are on the same page and that they are very supportive of you and what you are going through, find a support group in your area if possible. Good luck and take care. I pray that you find something that helps your pain. Keep me posted please. I would love to hear from you. Take care and sending many hugs!!

Hi Lynn, Thanks so much for your post. My heart goes out to you. You are very brave. God knows you are suffering and He does care. One preyer I found helpful is: "Lord Jesus Christ have mercy on me." Repeat this for say 20 minutes each morning on waking. I have discovered that my neuralgia is caused by an infection: Chlamydia pneumoniae and/or Chlamydia trachomatis (the test only picks up the fact that I had Chlamydia of some sorts). It may be worth you having a test for this bug? You may have a bug that is causing your immune system to 'strike' your face. Antibiotics can provide the cure. I'd love to support you in some way. Feel free to write to me anytime. If you private message me I can give you my email address. Hugs. God is with you. Everynight pray for a cure and tell yoiurself: "I will recover" several times. Ian C. (Melbourne Australia)

i noticed something about your meds when i reread your post. are you on any kind of anticonvulsant? like neurotin, or tregretol?

Thanks everyone for their input. If anyone would like to test out a very simple, drug-free pain relief technique I have found to work for me, pls send me a message and I will explain it to you. You can do this technique anywhere any time. I'm just curious to see if it works on anyone else but me. take care, Ian

This is the first time I have found a support group for TN. I have had excruciating burning pain on mainly the right side of my mouth including my tongue, gums, roof of my mouth, and my upper right teeth are sensitive and that sensitivity extends across to the left side front teeth. The burning seems to subside when I am sleeping. And when I wake up there really is no pain, but there is a residual feeling of trauma in my gums. Shortly there after the burning and sensitivity starts. I have been to many specialist in the dental field all with no explanation. An ER doctor said he thought it was Trigeminal Neuralgia. But he was not sure. It has been 14 months of this unrelenting pain. It has cost me my job, my friends, my family, and the relationship with my teen age son is stressed. I am stressed and I have no one to turn to. I am now living on unemployment and have no insurance. I am using what little savings I have to see this chiropractor/neurologist that is adjusting my c-1 vertebra gradually 3 times a week at 45.00 per 15 second adjustment. He says he has helped people with TN. I am so desperate for relief I'll do just about anything. So my hopes are that he is a moral and ethical Doctor that works from the heart and not the pocket. I also read about BMS. Burning Mouth Syndrome seems to be more on the lines of what I have. Are there any correlations between the two? I recently went to a clinic and the doctor there prescribed me ULTRAM and XANAX. The xanax seems to calm me down because I have severe panic attacks because of the pain . But it also eases the pain. From what I understand about TN is that pain meds really don't do anything to help the pain of TN. So why would xanax? I know I have alot of questions but I am so desperate for in site to this. My heart goes out to all that suffer. I miss my life. It was just the summer of 2011 that my son and I were floatin around the pool on our rafts laughing and having fun. That's all gone now. I am so depressed. Please help me to understand how I can better deal with this. Where I can get help before I end up homeless and lose what little I have left. God Bless. Jamie M.