Cheeky mouse cheese or chopping board

Hi, My name is Karla, often nicknamed Athena; I am 25 years old and have lived in Clayton le Moors all my life. Amongst other problems I suffer from a condition known as trigeminal neuralgia (TN) and have done since shortly after my 18th birthday in July 2009. Trigeminal neuralgia is a condition that few know about but is characterised by intense pain to the face and head. This pain is so severe it knocks me unconscious many times a day. It is often cited as the worst pain known to mankind and the severity of the pain has earnt the condition the unfortunate nickname of ‘suicide disease’ a nickname I don’t like myself but it does convey the extreme pain TN sufferers are in. There are estimated to be about eight million TN sufferers worldwide, though the number is probably higher due to the amount of misdiagnoses.

The pain is so severe it is very hard to describe to somebody who has never experienced it – I always liken it to being struck by lightning which, in my case shoots across my left cheek up to my eye, into my ear, to my nose and down my neck. Sometimes I have heard it likened to being stabbed by a knife, an ice pick or being tasered repeatedly. Trigeminal neuralgia has two forms, of which I have both – atypical which is usually pain that is there 24/7, in my case a sharp ache; and typical which is the aforementioned sharp pains often similar to lightning bolts.
TN can be caused by multiple things. The most common is to have a blood vessel impinging on a nerve however it can also be caused by nerve damage (neuropathy.) This is what I have, after an operation went wrong. It can be surprising what sort of trauma can lead to this – a friend of mine got TN when he was hit in the head by a chunk of ice for example. I also suffer from a collagen disorder called Ehlers Danlos Type 3 (Hypermobility Syndrome.) This wasn’t diagnosed until I was 20, and, it turns out, it is probably the reason the operation went wrong in the first place. Ed3 causes repeated sprains and subluxations in my joints, my skin to be extremely fragile, digestive problems and excess bleeding amongst other things. In fact my jaw is still bleeding like mad (every week at least)  from the operation all those years ago leading to permanent anaemia.
There is not much that can help me at the moment. I have tried numerous medications, most of which I reacted to immediately, many of which made things worse. There are surgeries, but the only one that would be suitable is incredibly risky and doctors are currently refusing to do it. But I get by. When I first got ill I started making cards to take my mind off the immense pain. This has now spread to other crafts. Crafting, like for many others, gives me a reason to continue, and has also raised thousands of pounds for various charities. The charity I am supporting at the moment is the Facial Pain Research Foundation, which aims to find a cure for TN and other facial pain conditions. I can barely imagine how wonderful that would be! The project I especially support is the pain pathways project. This project, currently based in America aims to map the pathways pain signals take in the body to reach the brain. Once those are mapped something can be done about blocking the signals to reduce or even stop the pain completely. As is evident although this project is aimed at stopping facial pain it would also have applications on other pain throughout the body.
To end on a good note, I have not let the pain destroy my life entirely. Despite losing my driving license (from the unconsciousness) and having to have a number of years off university I eventually went back and achieved a first class degree (admittedly with 20% attendance and my mum acting as a carer.) Although I am again stuck at home, I hope one day to return to do a masters and pHD and work in environmental conservation. Fingers crossed!