A woman has shared the debilitating life she leads due to a rare condition where her body acts as though she has a brain tumour – causing her to slowly go blind and remain bed-bound most days due to exhaustion.
Kim Slater, 30, from Bristol, was diagnosed with idiopathic intracranial hypertension (IIH) in December 2019, six months after the symptoms began.
Her GP was ‘totally confused’ by the ‘huge list’ of symptoms but a CT scan revealed the true cause. The condition occurs when high pressure around the brain causes tumour-like symptoms including vision changes and headaches.
IIH is believed to affect one in 100,000 people, has no known cause and no cure – leaving Kim feeling hopeless.
“When I was diagnosed, I was at my worst – I had migraine-like headaches every day which left me dizzy, nauseous and emotionally drained,” Kim explained.
“The pain was exhausting and I often got confused, couldn’t speak properly and would forget things because of brain fog.
“My boyfriend Liam moved in and did almost everything for me, from cooking to cleaning, to even helping me to the bathroom on particularly bad days.”
The rare condition means Kim’s body mimics symptoms of a tumour including fluid build-up, which causes headaches, dizziness and fatigue – but no mass comes up on scans.
Before diagnosis, Kim was also panicked at the thought she may have a deadly tumour with all signs pointing towards the worst-case scenario.
She initially visited her optician in November 2019 with headache concerns and changes in her vision including blackouts.
She was referred to the eye hospital for tests and went the following day, accompanied by mum Liz, who previously worked as a nurse.
Kim said: “[The doctor] told me that he didn’t want to worry me so he didn’t want to share what he thought the problem was until he knew for sure, but that I would be taken for an emergency CT scan.”
“My mum and I started the walk up to the hospital in silence until I broke it and said ‘they’re looking for a brain tumour aren’t they?’
“My mum is a straight-talking lady so answered truthfully that yes, they were but we would deal with whatever happens.”
While they waited for the results, she said she and her mum used ‘dark humour’ to get through the terrifying ordeal – joking about the young girl’s funeral.
She said: “Not knowing what the results would be, I made an effort to think about all the people that were important to me and the things in my life that mattered as I wondered if it would all change after that day.
“Obviously I felt relieved that it wasn’t a tumour, but I felt deflated too.”
“I still didn’t have a real answer and in my 10 minutes of research about IIH on the drive home I realised the outcome didn’t look great.
“Academically, there was hardly any paper referencing it and all the anecdotal stories seemed to be tragedies about people losing their eyesight or living in pain forever.
“I even had moments over the following months when I wished it was a tumour that I could cut out and throw away to get on with my life.”