Teacher, 28, often 'screams out loud' due to agonising rare disease

·6-min read
Laura Cruz suffers from a rare condition which leaves her in unbearable pain. (Caters)
Laura Cruz was diagnosed with trigeminal neuralgia, earlier this year. (Caters)

A primary school teacher has spoken out about her rare condition, which can leave her in unbearable pain up to 25 times a day. 

Laura Cruz, 28, from Derby has been diagnosed with the extremely unusual condition, trigeminal neuralgia, (TN), which is described by the NHS as sudden, severe facial pain. 

The pain is compared to a sharp shooting pain or like having an electric shock in the jaw, teeth or gums.

It usually happens in short, unpredictable attacks that can last from a few seconds to about two minutes. 

The condition has previously been referred to as the 'suicide disease' due to the severe pain it causes that can't be treated with painkillers.

Aneeta Prem CEO of Trigeminal Neuralgia Association UK says trigeminal neuralgia is regarded as the most painful condition known for any human being to endure.

"Those living with TN, suffer the most horrendous and worst pain in the world," she writes on the charity's website.  

"This is not called the suicide disease for nothing."

Cruz woke up on January 12 with a faint tingling in the right hand side of her lip which developed into severe pain within a matter of weeks.

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Initially doctors mistook the rare illness for shingles, but after visiting a specialist and analysing MRI scans, the teacher was diagnosed with trigeminal neuralgia, which causes bouts of severe pain up to 25 times per day. 

"This disease has completely consumed my life; I can't brush my hair or my teeth, eat, sleep, stand in the wind, or touch my face without feeling like I'm being electrocuted across my face," Cruz explains. 

"The flare ups are so bad that I now understand why it's known as the 'suicide disease'," she continues. 

"I'm on medication that is supposed to suppress the pain but I'm still having breakthrough pain up to 25 times per day and it's so bad that sometimes I scream out loud."

Laura and Troy on their wedding day this summer. (Caters)
Laura and Troy on their wedding day this summer. (Caters)

After her most recent flare-up, Cruz ended up in A&E, but was discharged after being told doctors could do little to help. 

"On the MRI scans, it shows I have blood vessels wrapped around the nerve and that's what's caused the pain," she adds. 

After initially waking up with tingling in her right hand side of the lip in January, Cruz began experiencing sharp, extreme pain that spread across the right side of her face and distorted her vision.

She was put on antiviral medication but continued to visit her GP due to the pain worsening and was first told of the condition in February.

"There's no cure for it so I remember thinking, how am I going to live with this?" she explains. 

"At the moment, everything is triggering the pain and because it's winter, the cold is making it even worse and I'm struggling to continue working at the moment.

"I feel like a burden to my husband."

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Cruz and her husband Troy, 29, who works as a cameraman, got married in the summer and were hoping to try for a family this year, but due to her current medication, Cruz has been advised against having children with her husband Troy Cruz, 29, as there is a high risk of it causing deformities.

"We are supposed to be in our honeymoon stage and we both wanted to try for children after getting married but this illness has completely taken over my life," she explains.  

"That was the most devastating part for me."

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Cruz is now hoping to have an operation to decompress the nerve and place pieces of Teflon padding between the nerve and offending blood vessels.

"The surgeon is hoping the operation will buy me anywhere between two and ten years without pain so I can come off the medication and try for a baby," she explains.

"One day it'll return but if it can buy me time to have a family, that's what I care about." 

Due to extensive waiting times on the NHS, Cruz is now trying to raise funds to have the surgery privately.

"The waiting times on the NHS is anywhere from six months to two years and I can't wait that long - the pain is unbearable.

"So the operation is booked for January 20."

Cruz is also hoping that by speaking out about her experiences she will help raise awareness about the condition.

"This is an invisible illness and a lot of the time, people will think there's nothing wrong with me but I want people to know more about this illness and realise that this is serious," she adds.

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The condition can leave Laura Cruz suffering painful bouts up to 25 times a day. (Caters)
The condition can leave Laura Cruz suffering painful bouts up to 25 times a day. (Caters)

What is trigeminal neuralgia?

According to the NHS, TN is sudden, severe facial pain caused by compression of the trigeminal nerve (the nerve inside the skull that transmits sensations of pain and touch from your face, teeth and mouth to your brain). 

It's often described as a sharp shooting pain or like having an electric shock in the jaw, teeth or gums.

It's not clear how many people are affected by trigeminal neuralgia, but it's thought to be rare, with around 10 people in 100,000 in the UK developing it each year.

Trigeminal neuralgia affects more women than men, and it usually starts between the ages of 50 and 60. It's rare in adults younger than 40.

The NHS says living with trigeminal neuralgia can be very difficult and can have a significant impact on a person's quality of life, resulting in problems such as weight loss, isolation and depression.

Although to date there is no guaranteed cure for the condition, there are a number of treatments which can give relief including medication; often anticonvulsant drugs (used to treat epilepsy), and sometimes antidepressants. 

Surgery may also be a treatment option. According to TNAUK, surgery can broadly be split into two categories: non-invasive and invasive.  

"Non-invasive surgeries include injections through the cheek, and Sterotactic Radiosurgery which does not involve an incision but is a dose of radiation," the site explains. 

"Invasive surgery is Microvascular Decompression (MVD) which involves opening the skull and lifting the offending blood vessel(s) away from the nerve, or Internal Neurolysis (IN) which involves “combing” the nerve."

For more information on Trigeminal Neuralgia, visit the NHS website.

Get help and support at www.tna.org.uk, or call 1883 370214.

If you or someone you know is having suicidal thoughts, reach out to the Samaritans at www.samaritans.org or call 116 123.

The Trigeminal Neuralgia Association UK are in desperate need of funding for research - to find out more, or about how to donate or fundraise, visit www.tna.org.uk/donate.

Additional reporting Caters.

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