double tmj

Posted , 4 users are following.

Anyone else have it on both sides?

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5 Replies

  • Posted

    Hi Kathy, yes I did when I was in the early time of my diagnosis. My surgical neurologist said it was so rare that it was unlikely.Had the glycerol procedure and together with that and 750mg of oxcarbamezapine and 200mg of Lamotrigine I cope. It does spike and deal with that as best as I can and try to work through it.

    my neurologist has said MVD is the next step as he doesn't want me on the drugs for much longer (over 3years now), however all the reports I have read on this forum has made me very sceptical that it will be the ultimate cure. Also at this stage in my life (63 yrs old), I have more than enough to deal with and am very much not entertaining it at the moment. 

    Trust you receive a solution sooner than later although it does seem a long road for all of us. Best Wishes to you all.

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    • Posted

      Hi Sharon..are you talking about Facial pain that you have all day or TN which spikes and on the same side,in other words ATN or TN?I have ATN and at present only on 100 mg pregabalin as I have issues with high doses of medication.How are you on lamotrigine?And did the gycerol injections help? I do have a lot of nose pain in the form of burning congestion which is not sinus related but trigeminal nerve related.Where do you live? I am in the UK.Hugs and a happy day! 
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    • Posted

      Hello Wanganui,

      when I first started with this condition I was in pain continuously 

      , the glycerol procedure has given me 2 years of relief, however hasleft me with a troubled ear, numb jaw and tightness in my right side. The medication keeps it under control to a point with which I tolerate, some days are not good. I am able to take oxcarbamezapine as I see fit so can increase my dosage as required up to 1200mg. I live in the U.K.

      Best Regards

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    • Posted

      Hi Sharon again,thanks for replying so quickly.....what does the gycerol procedure involve and did your GP refer you? So do you take oxcarbamezapine as and when needed and do you have side effects from it? Is the ear,jaw and tightness painful or just annoying? Sorry re all questions but I really do need to up my medication as I'm not in a good place at the moment! I'm from Oxford and hoping to start a local support group.Hugs!

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  • Posted


    Yes, TN rather than TMJ issues both sides, shocks and stabs in the same parts of my face or head but at different times and it comes and goes so is incredibly difficult to know what to do!! Do I go out in the cold and risk the pain in my eye, or do I simply have a conversation with someone and get the stabs of pain in my scalp? Or do I sneeze and get the shocks in my lip and cheek?? You get the idea!

    Currently on 1000mg Carbamazepine in divided doses throughout the day plus up to 70mg Amitriptyline (50mg at night and two lots of 10 if it kicks off), this seems to be doing the trick (fingers, legs and arms crossed!).

    Best wishes

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