Doctors feared Hannah was having a breakdown – but in reality, she had been struck by a rare condition that wiped months of her memory.
A student admitted to psychiatric hospital as medics thought she was having a breakdown told how tests revealed she actually had a deadly brain infection – which has wiped her beloved grandmother’s death from her memory.
When 22-year-old Hannah Farrell’s behaviour changed dramatically – making her forgetful and causing her to sleep more often – she thought she was burnt out after sitting stressful exams, then working around the clock in a deli.
But in time, her behaviour grew more and more strange, prompting a diagnosis of depression, which led to the student, of Dublin, Ireland, being admitted to a psychiatric hospital in August 2017, following a rapid decline.
She said: “I didn’t feel depressed. Deep down, I knew something more sinister was going on, but I felt as if doctors were assuming I just didn’t want to accept help for a mental health condition.
“To this day, I have nightmares about being in a psychiatric hospital. My memories are very hazy, almost like it was a dream.
“I can remember odd details, like all the couches being green, and falling asleep there on the first night – and then, nothing. For three months after that, it’s just blank.”
Piecing together what happened next by speaking to doctors and relatives, Hannah, who has now recovered and is completing a psychology degree at Dublin’s National College of Ireland, has been told that, two days after arriving at the psychiatric hospital, a medic became concerned that her problem was neurological, not psychological.
An MRI scan then revealed that she was suffering from encephalitis – a rare but serious inflammation of the brain.
Referred to Dublin’s St Vincent’s Hospital, her life hung in the balance as she was pumped full of antibiotics and given 13 different plasma transfusions.
Then, on 12 November 2017, she suddenly “woke up” and began responding to her family – a poignant moment which they caught on camera – after months of being unable to walk or talk.
“I had been almost catatonic,” she explained. “I couldn’t speak and had lost so much weight.
“I was on a feeding tube and had to have my saliva sucked away every few minutes to stop me choking. My family had been by my bedside, talking to me throughout, even though I couldn’t respond. “Then, that November day, my mum said, ‘I’m so tired, are you?’ and I just replied ‘Yes.’ It was like I’d suddenly woken up.”
Hannah told how her nightmare began back in the summer of 2017 when, having just finished her second-year exams, she started working long hours in a deli and was under a lot of stress.
So, when she initially developed flu-like symptoms, both she and her GP thought she was simply run down.
Then, three weeks later, she woke with her glands so swollen that she was in agony, prompting medics to prescribe her a course of antibiotics.
“I was supposed to be visiting my brother in London two weeks later, so I took the antibiotics and hoped for the best,” she said. “Looking back, it wasn’t the wisest decision to go, but I really didn’t want to miss out on seeing him.
“The first warning sign came when I was packing and couldn’t find the 200EUR I had changed up into pounds. Ordinarily, I’d be really stressed, but I just didn’t care and didn’t see it as a big deal.
“Then, when I got to London, my brother took one look at me and said I seemed really out of sorts. The whole trip, I basically stayed in his apartment sleeping. We never went sightseeing or did any of the other things we had planned.”
What is #rehabilitation and how can it help survivors of #encephalitis?
Our factsheet – Rehabilitation after Encephalitis – gives an in-depth look at the topic and of the health care professionals you may meet along the way. #braininjury #abi
Visit https://t.co/5p5sbEQpQq pic.twitter.com/9cLefaF3xC
— Encephalitis Society (@encephalitis) December 26, 2018
Back home, Hannah’s behaviour grew more and more chaotic. She recalls not looking after herself and struggling to perform everyday tasks like showering and tidying up.
Increasingly forgetful, she would often lose things and, to this day, has no memory of her grandmother passing away on 17 July.
She added: “I don’t remember the funeral, but apparently I was acting really strangely and couldn’t comprehend what had happened.”
She continued: “My speech also began to be affected, and would be very slurred and slow. I have no idea how, but I kept working right up until I was admitted to hospital.
“I have vague memories of customers getting angry with me when I couldn’t answer them, or gave them the wrong change as I got confused.”
Eventually, she was diagnosed with depression and referred to a therapist – but during the session, her speech became so slurred she could barely be understood, prompting her to return to the doctor.
She continued: “I took my mum into the room with me, as I could barely speak. Whenever I tried to, the words just wouldn’t come out.
“I think the doctors thought I just wasn’t accepting help, and so I was referred to a psychiatric hospital.”
There, medics became concerned Hannah’s problem was neurological and, two days after she arrived, she was booked in for an MRI scan.
While waiting for the MRI, her condition deteriorated to the point where she could hardly move and her eyes became extremely sensitive to light.
And, when the scan revealed a cyst measuring around 1.5cm in the centre of her brain, she was whisked to St Vincent’s Hospital.
“That actually turned out to be unconnected to the encephalitis, but in a way, it was almost lucky as it flagged me up to neurologists and meant they leapt into action,” she said.
Hannah before she woke up (PA Real Life/Collect)
Following blood tests and another MRI scan, Hannah had a lumbar puncture to test the fluid around her brain and spinal cord – the results of which revealed she had anti-nmda receptor encephalitis, an autoimmune version of the condition.
According to the charity The Encephalitis Society, who have been of invaluable support to Hannah, this is caused by the immune system attacking the brain in error, resulting in symptoms including confusion, altered personality or behaviour, psychosis, hallucinations and memory loss.
Following her official diagnosis, which came in September 2017, Hannah was on the brink of death, as medics tried everything to save her.
When 13 different plasma exchanges – a procedure that removes plasma from the blood and replaces it with new plasma fluid – failed to make any difference, things looked grave.
But then, on 12 November, she suddenly roused and began to respond to her parents.
From there, she went from strength to strength and was walking again in just two weeks, although her memory was greatly affected.
“My mind was stuck back in the summer, months earlier,” she said, adding that her speech was also very slurred at first. “I would get very confused, and have a 10-15 minute memory before it would be wiped, then I’d ask again why I was in hospital, with no clue of what had happened.
“I missed out on a lot, like my nephew saying his first word and taking his first steps. When I saw photos of him, he was suddenly older. People I’ve known for years would come and visit me, and I wouldn’t recognise them.”
Finally, in December 2017, after 105 days, Hannah was discharged from hospital.
In February 2018 she started speech therapy, occupational therapy and physiotherapy at the National Rehabilitation Hospital, Dublin.
Slowly, her speech returned to normal, her memory began to improve and she even returned to her studies, which she had put on hold.
“Now, I am more forgetful than I was before, but my memory has improved a lot from when I first came round in November 2017,” she said. “I’ve learnt to cope by being organised. I set loads of alarms and reminders, and have sticky notes all over my room.”
After returning to university, Hannah submitted her final thesis – poignantly written on brain injuries – in April this year, and is now gearing up to take her third year exams.
By speaking out, she hopes to both thank The Encephalitis Society, who have helped her feel less alone, as well as the medical staff in St Vincent’s and the National Rehabilitation Hospital, and to raise awareness of the condition that has claimed months of her memories.
Adding that she also wants to praise her boyfriend Ross, 22, for his unwavering support, she said: “Encephalitis is often misdiagnosed, and it’s scary how many people haven’t heard of it. Even doctors need to be better informed, as reading about something in a medical book is very different to coming up against it in real life.”
She concluded: “If people are more aware of the symptoms, they can look out for those changes in behaviour like I had.
“Mentally, this has been very overwhelming. At first, I cried every day, but then survival mode kicked in and I realised it won’t help me to dwell – I have to keep going.
“I do worry about relapsing and getting sick again, but I don’t want to become my illness. This isn’t me – it’s something that happened to me, and I am so lucky to have survived.”
For information, visit www.encephalitis.info
