SEVERE headaches are a daily fact of life for Amelia Wheatstone – something that even four brain operations have been unable to cure.
The 24-year-old, who lives in Sebastopol, Pontypool, went under the neurosurgeon’s knife four times in less than 18 months in an attempt to relieve the debilitating symptoms of a rare brain condition affecting just one in 100,000 people.
Idiopathic intracranial hypertension (IIH) causes raised pressure in the skull due to a build-up of cerebrospinal fluid, triggering extreme headaches and, if not treated quickly, sight loss through damage to the optic disc – part of the optic nerve - at the back of the eye.
With the cause unknown and a cure nowhere on the horizon, Mrs Wheatstone and others with IIH must manage their symptoms through medication and seek specialist help when the pressure and pain become too much.
Mrs Wheatstone, who works for Monmouthshire council, has not been well enough to act on her wish to raise money for IIH UK, a charity providing information and support for patients, families and medical professionals.
But she refuses to let the condition beat her, and is keen to raise awareness of a condition that for her and others, can be extremely painful and restricting.
“I’ve always had bad headaches, even as a toddler, but I was only diagnosed with IIH in 2011,” said Abergavenny-born Mrs Wheatstone.
“By that January I was having constant headaches, with no relief, serious, crushing pain. It’s been described as like having your head stuck in a tightening vice.
“I was sent to see a neurologist, but the waiting list was about six months so I went private, because they were talking about brain tumours and stuff, so I needed to put my mind at rest.
“IIH used to be called pseudotumour cerebri, false brain tumour, because the symptoms are the same. I had MRI scans to rule out a tumour, and the neurologist suspected IIH.”
IIH is diagnosed through a lumbar puncture, a needle inserted into the lower spine to measure brain pressure and take cerebrospinal fluid for testing. Mrs Wheatstone’s pressure readings were high and at first medication was used to try to control pain and fluid levels.
But the headaches worsened and additional painful lumbar punctures were required to ease the pressure. With Mrs Wheatstone’s sight becoming affected, she underwent surgery in October 2011 when a shunt was fitted into her brain to drain excess fluid.
Three more operations followed, to replace parts of, and refine the shunt, the last taking place last March. Meanwhile, more pressure-easing lumbar punctures have been required, a process she has undergone 15 times, causing severe back pain for which she is waiting to see a specialist.
“I still suffer severe headaches every day, and I’ve lost some of my peripheral vision,” said Mrs Wheatstone.
“One of the most difficult things is that every time I’ve had a brain operation I’ve had my driving licence taken away for six months. That’s very frustrating because it takes your independence away.
“I find it difficult to work, but I do three days a week at the moment. I’d love to get my IIH under control and do more and do a fundraising event. It’s a rare condition, so there isn’t the backing, and finding a cure will be difficult.
“I also have a condition called pseudodementia, which is secondary to the chronic pain and can cause big problems with memory and concentration.
“It’s been really hard for my family as well. But I’ve had great support. My husband and my mum have been absolute rocks.
“Hopefully telling my story will raise a bit of awareness about this condition, and it’s important to stress that I have lots of wonderful things in my life. I have to adapt my life a little, but I won’t let IIH stop me doing the things I want to do.”
For more about IIH, visit iih.org.uk