my daughter has bilateral facial pain

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started 4 yrs. ago on right side of her face then several months later it hit the other side. she has tried all meds, no surgeries, and now is experiencing swelling on both sides. chewing somehow makes it better, cold weather does not affect the duration or onset, however smiling and laughing will send her into excruciating pain. she holds her face constantly. she is accused of having a bad attitude at work because she cannot smile or talk alot but they do not understand although she has tried to explain. she has two sons and is at wit's end. she's tried anti-depressants, seizure meds, clonipin, etc., etc., as well as botox injections which did nothing for her pain, if anything made it worse.  any comments, suggestions, advice would be immensely appreciated as we do not know where to turn and I am afraid she will give us soon.

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  • Posted

    Has your daughter seen a Neurologist? There are a number of other conditions which match the symptoms you describe.
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    • Posted

      thank you so much for your reply. yes, she has seen a neurologist but for some reason he did not do much other than put her on anti seizure and clonopin for pain.  can you tell me more as far as other conditions? she tested negative for MS...no tmj, went to ENT, nothing there. Please share whatever info you know..thank yousmile
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  • Posted

    i dont know much. There is something called atypical facial pain but there are other things as well like facial migraine. Also it can sometimes be dental but I assume that has been investigated. If so,she really needs to go again to a Neurologist. My neurologist was useless to me. he just said, yes its neuralgia and your GP can prescribe something. So after a while when the Tegretol stopped working,i went to a different neurologist. He was a lot better and talked about other methods of control,had an MRI done then sent me to see a surgeon to talk about my options. Her call whether she sees the same person or not but she needs to go back and report what's happening. Otherwise they just assume its "all fixed" i guess.
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  • Posted

    I agree she must return to another neurologist!  No idea what the reasons could be as I'm not medically trained, but I do know that you shouldn't put up with what one person tells you. 

    Hope she has some success. 

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  • Posted

    Hi I am 33 and long story short I had double jaw surgery at 29 and the suergons severly damaged my TN bilateral l.

    I was in the Army when this happened and know how difficult life can be to function properly. I have atypical TN. But it sound that if your daughter just developed it without damage. She has classic.

    I only wanted to world's best in facial pain. I will give each you his name DrJeffery Brown Nuerosurgeon NY . He is leading the way. In my case b/c of the complex issues I had a device placed on my brain. This is because meds do not work for me any more.

    I recommend that you go to Trigeminal neuralgia Association website. They have great dr info

    Another doctor that I am seeing because my device has failed and I can not longer take med is at the Mayo clinic, Dr zimmerman. he is the director and has 32 yrs experience. I am not going back to Dr Brown because in my case he doesn't want to go into my face for fear of further damage. I don't want to give and up and want another opinion.

    Sometimes the case is a blood vessel pushing on the nerve and it can be fixed with high success. I

    I Know there is a Dr in the UK that is the best and should be the person you go to. I live in the US but I believe her info is on the TN website.

    I hope this helps u

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  • Posted

    Great response from Natalie.  Rule things out.  I would double check TM Disorder.  How is her bite?  If you need information Re: Jaw disk displacement  please contact me.  I have bi-lateral prosthetic jaw joints.  If this has been completely ruled out I wish you luck at finding out what it is.  Feel free to bounce anything off me you may eing told by you doctors.  Good luck.
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