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Hi all. I have recently been diagnosed with TN and not too sure how people have been coping with it for years. Mine started in November 2012 when I also had a Shingles infection. The Shingles cleared up nicely with no rash and only slight pain but the seering pain in my forehead and down my face was agonising. My GP (who is amazingly on my side) prescribed carbamazepine and I started to take 100mg with an increasing dose. By the time I was on 600mg my vision started to go all funny and the pain was still there. I then went up to 800mg per day and then my vision almost went completely. I was then admitted to A&E with bad side effects from the drugs and suspected TN. An MRI confirmed that there was no MS so very happy but did show compression of the trigeminal nerve on my right side. By this time I then had Shingles for the 2nd time and this time it was WITH the rash. So Shingles on my left side and then TN on the right side of my face!! I then started coming off the carbamazepine and went on to oxcarbazepine and the side effects were even worse at lower doses. I was then put on Gabapentin increasing to 900mg 3 times a day. So needless to say I am now popping so many pills I tend to forget which ones I have taken and which ones I haven't. Very confusing. I have now come off the oxcarbazepine and the carbamazepine but am still on the Gabapentin and am now on Lamotrigine with an increasing dose as my pain is so bad now. I find that talking to people is the worst as it is so embarrasing when the pain strikes and I can't even look at them. I have seen a Neurologist and a Neurosurgeon at Frenchay (Bristol) and am on the 4 month waiting list for a Microvascular Decompression surgery and am praying that there is a cancellation so that it will happen sooner.
How do others cope with this pain. I am having no pain relief and the side effects are leaving me a crying mess that can't eat anything and has to rush to the loo every 10 minutes and thats excluding the numb tongue and lips and the dry mouth...not to mention the memory loss and confusion.....Not too sure what I am hoping to get from this but just thought I would share my experience and if someone has had the same please share.
How do people cope for years with this and I have only had it for 4 months?
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