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Clive's Story

In the first instance when the pain started, like most of us with this condition, I assumed I had a tooth problem and visited the dentist.  I had three teeth pulled out before the dentist told me he thought I might have TN and referred me to a hospital maxillofacial unit, where I was first diagnosed in 2004.

Having taken the prescribed medication for several weeks, the pain was still there, so I was then prescribed two different medications – carbamazepine and gabapentin.  Still suffering extreme facial pain several years later, I underwent surgery - a procedure called Microvascular Decompression (MVD).

After the operation, I still had a very slight pain in the background but bearable, just some numbness of the face, and came off all medication until four years later when the pain returned with a vengence.  I went to see my GP and was prescribed carbamazepine and gabapentin again.  For a while this kept the pain at bay but I was suffering badly from the side effects - tiredness, depression, confusion, memory loss, inability to concentrate - to name but a few.

I saw a Chinese doctor in London and tried acupuncture for a few weeks.  I had relief whilst the needles were in my face and elsewhere, but the pain returned each time before I could pay the bill !! The acupuncturist then tried a procedure called cupping, where he put a lighted flame around the rim of a cup and put the warm rim over the painful area for 15minutes.  When he removed the cup, it was still very painful. That had not worked either.

In 2009 the pain had got really bad again, so I was referred to a hospital where I had a further operation called Thermocoagulation*.

This year the pain returned and I went back to the doctor and was prescribed pregabalin.  However, I developed double vision and fell down some stairs and broke my upper arm.  I was then referred to Professor J.M. Zakrzewska at the Eastman Dental Hospital, who is the Medical Advisor to the Trigeminal Neuralgia Association (of which I am currently Membership Officer) and is a world authority on the condition.  She confirmed my original diagnosis and changed my medication to oxcarbazepine.  I am pleased to report that I am now pain-free, for the first time in seven years.  I only hope this continues to be the case.

*This is usually an hour-long procedure, which involves heating the nerve.  The surgeon places the patient under a short-lasting general anaesthetic and a hollow needle is inserted through the cheek.  With the needle in place, an electrode is inserted and a current passed through the electrode so that the patient can tell the surgeon exactly which area of the face has been stimulated.  Once the precise pain trigger area has been located, the patient goes back under anaesthetic and the nerve is heated to deliberately damage it and so interfere with its ability to transmit pain signals to the brain.  Some mild numbness is highly likely, and severe numbness can occur following this procedure.  Unfortunately, this is not a permanent solution and pain usually recurs after a few months or years.

Page last updated on 26 Jan 2015