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Old 09-21-2006, 01:13 AM #6
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ToTs11 ToTs11 is offline
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Location: London, UK
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ToTs11 ToTs11 is offline
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Join Date: Sep 2006
Location: London, UK
Posts: 37
15 yr Member
Smile Me Too.

Hi Lynda,
Reading your post it could have been written for me apart from the many trigger points you mention, my bilateral TN is more unpredictable and fires off when it feels like it, apart from when it is cold and windy this sets off my pain.

If I was in your shoes and my neurologist was playing down that I had bilateral TN (when it's pretty obvious that I do) I would be looking for a new one! It's easy for him, he doesn't have to live with the pain.. Lightening bolt, electrical stabbing pain = TN.
I think you'll find many of us TNer's have had our share of dodgy consultants before we have found the right one, I had two myself that I wasn't happy with, so I moved on until I found the right one for me, and I am very happy with mine now (Prof Joanna Zak)

I haven't used Topamax before, I find, I have pretty good control over my tn with Trileptal, I still have pain every day (No remission yet in 5 years) but no where near as bad as it has been in the past. Have you tried Trileptal (Oxcarbazepine) before? I swapped over from Tegretol due to the side effects and it's the best move I could have made.

I hope it helps a little knowing your not alone in having BilateralTN.

Take Care
Tracy.
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