WHEN Rachel Hickey started suffering excruciating headaches at the age of 13, doctors couldn’t explain what was wrong with her.

Every possible condition was explored, but it wasn’t until one doctor suggested a cause that the mystery was solved.

The problem was the illness, intercranial hypertension, was so rare that even medics knew little about it.

Rachel and her family had to spend hours looking for information.

The condition caused a serious build-up of fluid in her brain.

At the time Rachel, now 24, of Golcar, was one of the first people in the country to be recognised as suffering from the debilitating condition.

But last October, 17-year-old Melissa Peacock, of Newsome, revealed that she had suffered from the same condition since she was nine years old.

And now Rachel’s sister Claire, 21, has been diagnosed with the illness, despite doctors claiming it was not genetic.

Rachel started suffering from severe headaches during the summer holidays while she was a pupil at Colne Valley High School.

She said: “The pain was horrendous – like a stabbing pain – and after a couple of weeks I was in pain constantly every day.

“I kept going to see different doctors and was up at casualty on a night. At first the doctor told me I was probably stressed but I wasn’t worried about anything.

“I was told it could be puberty then meningitis. At one point it was thought I had a brain tumour which was scary.

“I had lots of blood tests and CT scans but nobody could tell me what was wrong with me.

“I was really frustrated because I felt like no-one believed how bad I was.”

Three weeks after her headaches began Rachel realised something was seriously wrong when she woke up being violently sick and was alarmed to find she couldn’t see properly as her eye was squinting inwards.

She was immediately sent to Huddersfield Royal Infirmary where a doctor diagnosed benign intercranial hypertension.

Rachel is one of only 100,000 people to have the condition where smaller-than-normal ventricles (chambers) lead to a fluid build-up in the head putting pressure on the brain. She was given a lumbar puncture, where a broad needle was inserted into her spine to help drain the fluid and ease the pressure.

Rachel said: “Doctors were amazed how high the pressure on my brain was – it was in the 30s when it should have been about six.

“One of the doctors said it was intercranial hypertension but it was so rare nobody there knew anything about it.

“I was definitely the first in Kirklees to be diagnosed with it and the doctors didn’t know of anyone anywhere else who had it.

“I was relieved to find out what was wrong with me but I did think ‘why me?’.

“My parents had to do some research and I later found someone living down south who had it which really helped.”

The doctors thought that the procedure would help but the next day the severe pain returned.

Rachel remained in hospital for over a week and had three further lumbar punctures, which she described as like an ‘horrendous electric shock’, during that time.

She was also prescribed medication to help reduce the fluid build-up, but one of the side-effects caused her to suffer painful pins and needles in her hands and feet.

After that Rachel was back in hospital every few months, but the crippling pain continued and she struggled with school and maintaining a normal life as a teenage girl.

She said: “It was difficult because physically people couldn’t see anything wrong with me so I think sometimes they thought I was attention seeking.

“The school was really good with me but my illness meant I couldn’t take part in sports or things I enjoyed like swimming. I couldn’t enjoy going out with friends because if I felt ill I would have to go home early.

“Sometimes the pain was so bad I had to walk around tilting my head to the side to lower the pressure.”

Rachel developed thick scarring on her back and the lumber punctures got so painful that she had to be anaesthetised and taken into theatre at Leeds General Infirmary.

Concerned about how often she was under anaesthetic, doctors decided to insert a shunt inside her body when she was 16.

They wanted to fit an internal tube from her brain to her stomach to drain down the excess fluid right into her digestive system to ease her suffering.

But because the ventricles in her brain were too small, the tube had to be fitted from her back into her bladder instead, which collects the surplus fluid.

The operation was a success and, says Rachel, turned her life around.

Despite being forced to miss school she went on to achieve three A-levels and in 2007 graduated from Huddersfield University with a 2:1 in youth and community work.

She then clinched her dream job, working with young people as a drug and alcohol worker with Crime Reduction Initiative (CRI) Kirklees.

Rachel’s headaches have now eased dramatically and her experience is helping her sister Claire.

Claire is now waiting to have a shunt fitted like Rachel.

Rachel said: “When I was diagnosed I questioned why it was happening to me because it was so rare.

“There’s so much more information about it now and I think it helps other sufferers to know they’re not alone.

“I still have some bad days and have to make employers aware of it, but having the shunt fitted has completely changed my life. I feel lucky to now be doing the job I love.”