Kim Slater, 30, thought she might have a brain tumour when she started suffering with vision problems – but tests revealed her true diagnosis was even more confusing
Image: Jam Press)
A woman with a rare condition that makes her feel like she has a brain tumour can barely leave the house and is slowly going blind.
Kim Slater, 30, from Bristol, lives with idiopathic intracranial hypertension (IIH) which leaves her completely exhausted.
She was diagnosed with the rare condition, which has no known cause or cure, in December 2019, six months after she started suffering with symptoms.
Kim said: “When I was diagnosed, I was at my worst – I had migraine-like headaches every day which left me dizzy, nauseous and emotionally drained.
For more of the news you care about straight to your inbox, sign up for one of our daily newsletters here
“The pain was exhausting and I often got confused, couldn’t speak properly and would forget things because of brain fog.”
When she first went to the GP with a “huge list” of symptoms, Kim says her doctor was “totally confused.”
But after a CT scan, her condition became clear. IIH, which affects one in 100,000 people occurs when high pressure around the brain causes tumour-like symptoms, including vision changes and headaches.
After Kim’s devastating diagnosis, she said: “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.”
Kim’s daily life is plagued by headaches, exhaustion and dizziness – but in scans, there is no mass on her brain.
The Bristolian first visited her optician in November 2019 after feeling vision changes and suffering from headaches.
Next day, she went to the eye hospital for tests, accompanied by her mum and former nurse, Liz.
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 happened.”
Thankfully, the scan revealed there was no tumour on her brain, but Kim says she still felt “deflated” by the news.
“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 were hardly any papers referencing it and all the anecdotal stories seemed to be tragedies about people losing their eyesight or living in pain forever.”
Kim admits at points she felt so hopeless she even wished she actually had a tumour, so she could have it removed and get back to normal.
“A tumour felt easy to understand, for me and everyone else around me,” she said.
Since Kim’s diagnosis, her condition has sadly declined and her eyesight has suffered as a result.
After speaking to a new doctor, she learned there is a link between obesity and IIH, and she was urged to lose weight.
However, Kim has a history of eating disorders, meaning losing weight isn’t so simple for her.
She said: “I consider myself recovered but it’s still in the back of my head every day, and it came back with a vengeance when I was stuck in bed and felt worthless.
“I worry about my eyesight every day but I feel like I’m stuck choosing between that or my mental health.
“I would rather end up blind than be pushed into suicide by my eating disorder.”
Kim’s boyfriend Liam has become her carer since she was diagnosed, helping her with day-to-day tasks and looking after her when she was bed-bound for four months.
More recently, Kim has found a neuro ophthalmologist and a GP who treat her without mentioning her weight. Although the pain medication she was prescribed to manage the condition has recently stopped working.
“I’m scared of going blind but mostly because I don’t know how I will function,” she said.
“Through years of therapy I have realised that, while some things you can change, you might as well get on board with the things you can’t and learnt to accept things the way they are.
“But [I wonder] how will I relate to the world if I do lose my eyesight? Will I lose my independence? Will I feel even more isolated? The scariest part for me is feeling out of control.”
Do you live with a similar condition to Kim and want to share your story? Email [email protected]
Kim is now facing the possibility of having a shunt inserted to drain the fluid from her brain to her stomach.
Although she struggles daily, Kim has found solace in an online community of IIH sufferers.
She said: “It’s not easy at all, but all I can do is make the most of today and live in the present without being too hard on myself.”
If you’re struggling with an eating disorder and need help, you can call the BEAT helplines