[Ariadne]

I started getting facial pain about 2.5 weeks ago which my GP has tentatively diagnosed as trigeminal neuralgia but I had also by the time I saw the GP a week ago developed a numb sensation on my face and scalp, and down my neck, shoulder and arm. This is all on the right side of my body only. GP has referred me to neurologist as he is not sure what is going on, and given me Carbamazepine (200mg a day) for the pain.

Since then the numbness has spread to my hand and I have developed constant, unpleasant tingling in my right hand, loss of co-ordination when using my right hand (typing this message is sooo slow!), occasional odd light/weak feelings in my legs, and unsteadiness when walking. Could any / all of that be a side effect of the carbamazepine? Or a progression of whatever it is I've got?

Honestly I haven't noticed any change in the face pain from the Carbamazepine, although ibuprofen does help with the pain. I'm tempted to discontinue the Carbamazepine and see if the tingling and unsteadiness ease off a bit, especially the tingling as this is making everything I do so much harder and is driving me absolutely crazy. But I am worried that this would be daft...

Have talked to two GPs about this and they don't have much experience of TN or PN, so I'm not sure either of them really know much more than they've read on the internet. And I can't see the neurologist until next month. This whole thing is making me feel seriously miserable and helpless - I realise others do have much worse symptoms than me, I suppose I am just not used to being ill or feeling "disabled" - and I don't know what to do.

Any thoughts, suggestions, reassurance?!
Thanks in advance.