'GP wrongly thought I was on drugs – now part of my brain is being removed'

'GP wrongly thought I was on drugs – now part of my brain is being removed' EXCLUSIVE: Tilly Jones was diagnosed with epilepsy back in April 2017 and since then her life has been turned upside down — and she has now spoken about the heartbreaking condition A young woman who wet the bed before waking up to find blood on her face and pillow from chewing her own tongue will now have 15 screws drilled into her skull — before part of her brain is “chopped out”. Tilly Jones, 33, suffers from epilepsy and now requires major brain surgery to hopefully make her seizure-free again. She can’t go a full week without having a seizure and over the years she has suffered them in supermarkets, film sets, the back of Ubers and on dates. One man she was seeing once shouted at her: “You’re really going to struggle to find someone who can deal with your issues.” Tilly, who is from Rutland but lives in Stamford, was diagnosed in 2017 and before her health battle upended her life she was working in London in the film industry on costumes for productions like Killing Eve. However, the regular seizures and no longer being allowed to drive made her unemployable. Her life now is a complete contrast to what it was during her highly successful career. Now, Tilly, who can’t be left alone for long, is raising awareness about her “invisible” illness, and explained that seizures were just one part of the problem. As well as losing her independence, she has also experienced memory loss, and she can no longer remember her friends’ weddings or 30th birthday parties. During an exclusive interview with the Mirror, she opened up about her condition, and how a GoFundMe that was set up by a friend had blown her away. First seizure Epilepsy is a brain condition which disrupts the electoral communication between neurons in the nervous system. People are typically diagnosed after multiple unprovoked seizures — but it took a long time before Tilly was finally listened to. For months, she was suffering with what she now knows as ‘focal seizures’. After going through the symptoms with her local GP, it was allegedly implied that she had been taking recreational drugs and they were written off as panic attacks. “I nearly lost it,” Tilly remembered. “Out of all my friends, brothers, sisters, I’m the least wild one.” She added: "That really upset me.” However, just weeks later, she had her first tonic clonic seizure, which are the most easily recognised because it causes the person to lose consciousness. Tilly said: “I woke up alone having wet the bed, blood over my pillow and face from chewing my tongue and very sore. “I was clearly on another planet because I got in my car and started driving to work. I rang my boyfriend who told me to turn around and go home immediately. I had clearly had my first tonic clonic seizure.” She ended up spending a week in hospital, and being a self-described workaholic, she immediately returned to work. However, she suffered another seizure one week later, and because her boyfriend caught it on camera, she was diagnosed with epilepsy. But her battle was just beginning. Living with epilepsy Tilly once had nine seizures in a single day and her partner, Tom, told us: “She had one a couple of weeks ago where she was struggling to breathe, and started to go blue, purple. They are the really terrifying ones.” He explained that if they are under five minutes, she will be okay, but if they go over that time, an ambulance has to be called. Tilly once had one that lasted 20 minutes. And giving a devastating account of how it impacts her, she said: “It’s not just the seizures, it’s the day-to-day living. It’s the fear of knowing if you’re going to have a seizure and never feeling safe.” She said her partner watches her walk into town even though it is just five minutes away and she can barely be left on her own. Despite this, she has a remarkable sense of humour. She laughed: “That actually drives me mad. I was fiercely independent and now I have to be babysat all the time. And at 33, it drives me absolutely mad.” Tilly had to quit her job for good two years ago after spending a small fortune on Ubers just to travel to different film sets and her most recent projects including working on Meg 2 and Better Man. She emphasised that epilepsy was so much more than seizures — explaining memory loss was her most “heartbreaking” symptom. On a recent holiday, her family members reminisced about being there before, and Tilly suddenly burst into tears. She told her mum: “‘I don’t remember being here. I don’t… it’s not there.’ And I find that absolutely horrible. The seizures are horrible but that I find really really upsetting.” And in a powerful message about her condition, Tilly, who has suffered seizures on the street where people have simply walked past her assuming she was “drunk”, added: “I’m heartbroken by family and friends who are terrified to be on their own with me in case I fit. One of the hardest parts of the condition is that it’s invisible.” Brain surgery Over the years, Tilly has endured chilling medical side effects, and she is now on her eighth type of medicine. Some people can take medication and never have a seizure again but nothing has worked for Tilly. One drug even made her suicidal and the “absolutely horrific” ways it made her act are too upsetting to report here. But after trying every possible medication, the next step is for Tilly to have invasive brain surgery. She will have to shave her head before having 15 holes drilled into her skull. That is just stage one, and it will be able to pinpoint the part that is malfunctioning. Not mincing her words, Tilly then said: “I’ll then have a second surgery where they chop it out.” And asked how she feels about having part of her brain removed, she said: “I am excited because I am so sick of my life at the moment. I get bored. “Because I can’t do very much, if I do too much, then my body punishes me with a seizure. So I am excited about the proposition of being seizure free.” However, she added: “But I’m equally terrified. I was awake all night recently because I was thinking of the letter I’m going to write to my friends and family because what if I wake up brain damaged. “What if I don’t wake up? But then the thing is also with a seizure, which I don’t think people realise is, is every time you have one, you are causing damage to your brain. So I am going for it.” GoFundMe She has been told that the surgery may not happen until 2027 because the equipment the NHS needs is currently stuck in the US. And in recent days, Tilly’s friend, Sophie, has started a GoFundMe to support her. Tilly, who now has to live off benefits having previously earned big money in the film industry, was initially reluctant to accept help but she has been amazed by the response so far, with more than £7,000 already being raised. The funds will help with five areas including specialist treatment, therapeutic support, help with daily life and post surgery funds. As for the fifth, Sophie said it was to contribute to Tilly freezing her eggs, and she wrote: “Even when Tilly does get her surgery, it’ll be years before she can start thinking about conceiving due to how long the medication takes to wean off. She is looking into egg freezing currently and being able to do this now would be a huge weight off her mind.” In response to the fundraiser, Tilly told us: “Sophie is bloody wonderful, and I’m totally overwhelmed by the response.” To make a donation to Tilly's GoFundMe page, you can do so here