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'This is the worst pain known to man' Trigeminal Neuralgia is an unpredictable neurological disorder which causes such severe pain that it has been dubbed the 'suicide disease' and affects around one in 15,000 people. Julia McWatt spoke to one sufferer about the devastating impact it has had on her life.

Byline: Julia McWatt

WHEN Sue Rimmer started to experience severe pain in her mouth, she believed it was just a tooth abscess.

However she became increasingly concerned and distressed when, despite having treatment from her dentist, the pain did not subside.

After many visits to her GP and a number of referrals to hospital, Sue was diagnosed withTrigeminal Neuralgia - a neurological condition which causes unpredictable recurring severe pains in parts of the face.

Twenty years on, the 63-year-old from Dinas Powys is in constant pain and has found the condition has had a huge impact on her quality of life, her work and her social life.

She said: "I used to get a lot of sinusitis and I thought that's what it was, so I would take a lots of antibiotics but of course they did not work.

"I then had an abscess and I went to the dentist but it still hurt a lot. In the end they took the tooth out as I think they lost patience with me and something had to be done. If we had realised what was actually causing the pain the tooth would not have had to come out.

"I was at my wits end, it was dreadful.

I went to my GP as the pain was excruciating, but there was nothing he could do.

"He sent me to a consultant and they eliminated MS and discovered what it was. I then had surgery on the back on my head. Things were better for a while, but only for the short term.

"I went back to my work as a receptionist but the pain was still there and I was trying all sorts of things. I was given antidepressants as I was so down about it all. I was in too much pain and I kept missing work so I lost my job. I hadn't been there for very long and I had been really excited about it, so I was very upset. But I could not think about working now - having to go in and be upbeat everyday."

Sue is now on medication and antidepressants to help make the condition more manageable and says that she has learnt to cope with it over the years.

She said: "Trigeminal Neuralgia is the worst pain known to man. It causes extreme pain all of the time. Pain killers do not touch the sides. Doctors cannot do anything for me but they are always so sorry that this is the case.

"The pain can feel like a sharp electric shock but other times it is a dull ache which pulls my head down. But when the really bad pain comes on it is like a punch in the face. My head goes back and I can hear screaming.

It's only later that I realise that it was me that was screaming out in pain.

"There are drugs that are used to treat epilepsy as they deaden the nerves, which makes the condition more manageable. But these have side effects, such as a dry mouth and weight gain.

"I also had glycerol injections but I was loathe to have them as it causes other problems and can harm the face and nerves but it felt like a breakthrough and it gave me hope.

"But the condition can be fatal as it causes so much pain and you cannot do anything about it so some people feel they cannot go on.

"Despite being on a mixture of drugs, the pain does break through and I never have a day without an attack. It is manageable now and I went back to Barry College to do my A levels and did a ceramics course at UWIC. When I'm doing my work the pain fades away."

Despite the attacks being triggered when she was in her 40s, Sue believes she may have had the condition all her life.

She said: "For most sufferers, the condition comes on with a toothache, which is the most common way for it to start. As a child I was always cold and was always whingeing. I never liked eating things like crisps or sweets.

"I remember I particularly hated going swimming in school, I used to hide in the corner. All the other children thought it was funny but I thought the water would harm me. I could not stand the splashing and I didn't know why, but now it has hit home.

"The attacks are caused by things like a cold wind, a kiss or even just a gentle touch. A feather could even set one off or fans in a cooling system.

"It's a very strange condition as you could punch me in the face and that would be fine in terms of the attacks."

Because of the unpredictability of the attacks, Sue became self-conscious about leaving the house. She said: "People often think you are making it up as it is not just one thing that triggers it and the next day the same thing might not trigger it.

"Everybody I know is very sympathetic but it's hard as you don't look ill.

"In the winter I only go out when I have to because of the cold and the wind. My social life has definitely dwindled. I was afraid to go out for a meal in case I had an attack but I am a bit more brazen about it now. I have given up apologising for it. Why should I apologise for something that I cannot control?" Sue says she also feels a huge amount of gratitude towards her husband, Alan, 69, who is now her carer. She is now the local area co-ordinator for the South East Wales Trigeminal Neuralgia Association UK, which she says has helped her cope.

She said: "It has been hugely helpful to talk to other people with the condition. It can be very therapeutic as there is no-one else who really understands it, apart from your immediate family."

WHAT IS TRIGEMINAL NEURALGIA? Trigeminal Neuralgia is an extremely severe facial pain which is unpredictable and comes in sudden shock-like attacks.

The pain is often described as stabbing, shooting, excruciating, burning, extremely strong and usually lasts for a few seconds.

In a majority of cases, the pain is caused by pressure on the trigeminal nerve - the largest nerve inside the skull.

The majority of people affected are more than 50 years old and women are more affected than men.

There is currently no cure but medication can provide relief.

The South East Wales branch of the Trigeminal Neuralgia Association meets regularly in Cardiff to provide support for those with the condition in the region. * For more information visit www.tna.org.uk or contact local support group coordinator, Tricia King on 01962 850535 or tricia.king@tna.org.uk

CAPTION(S):

* Sue Rimmer of Dinas Powys who suffers from Trigeminal Neuralgia PICTURE: Andrew Davies [umlaut]
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Publication:South Wales Echo (Cardiff, Wales)
Geographic Code:4EUUK
Date:Oct 5, 2011
Words:1151
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