Mine started suddenly about 4 years ago, while I was having my hair done of all things! At the time I had no idea what it was, but was lucky that my GP recognized it immediately. The MRI showed no signs of tumor or MS, and I started on Tegretol (low dose) but I didn't find it effective & went off it almost immediately as I don't like to take conventional medicine if I have a choice. I then explored the specialty dentistry side, as I had recently had a wisdom tooth removed (same side) and I was convinced there was some connection-but they couldn't find anything. The TN started being episodic so I learned to identify the site & treat it that way, ie, when it was by my hair I didn't go out without at hat or scarf in case the wind would blow it & had accupuncture, etc. The episodes got steadily worse and closer together. Last autumn I had a really bad patch where the sensitivity was in the roof of my mouth.
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I was like a drooling fool on the couch for a few weeks as eating, drinking, closing my mouth, talking, swallowing, etc, caused terrible pain. At that point I started taking Lyrica, but found no relief (aside from the incredible cost!). I finally got the brainwave to try some Bonjella on the roof of my mouth, which would give me about 10 mins of relief so I could eat (soft foods), drink, etc. When this episode was waning, I changed neurologists & had another MRI. The new neuro was incredible, going through every piece of the MRI with me and explaining to me exactly what we were seeing. He tells me that my particular type of TN is 'idiopathic', which is good in the way that it can go away, but bad in the way that surgery doesn't help as it does when there is a protrusion. He also asked me to try Tegretol XR, & has let me manage the dosage myself (he knows I'm not keen). That has been a big help, but I've never gone over 1200mg/day, and that was on the very odd occasion. We are reserving judgement on surgery until I get to a point where the Tegretol & the pain management isn't helping. I am ok at this point, but I can honestly say that I haven't had a completely pain free day in over a year. I tend not to eat on the left side of my mouth, rarely get my hair cut, am very gently while washing my hair or putting cream on my face, etc. I rarely go out where there is a big group as the noise vibration can set it off and I have Reiki treatments every 2 weeks. It really is about management at this point, but it's a horrible diagnosis, so I'm sorry for you & feel your pain. Reading, research, & asking questions of - and challenging - your neurologist are key to being able to live with TN (I actually fired my first neuro for not being responsive when I was in a crisis!). There is a facial pain speciality center at UCLA which I would love to go to, but as I live in Ireland at present, I won't be able to go until I take a trip back to California. I also stopped looking at support groups and am careful what I read with regard to 'support' as I found that I was getting down by reading what could happen... maybe a head-in-the-sand approach, but I didn't find that way helpful, so now I stick to clinical facts, positivity, energy work, & spiritutality - - and live for the day when the TN has left the building! Take care and best of luck.
Anne
