Monday, February 4, 2019

Autoimmune encephalitis 2

A council worker has relived the extraordinary moment when she awoke from a coma thinking she was "the Messiah" after a rare brain infection turned her into "a different person." Convinced she was "a messenger from God," despite not being religious, Evie Moore, 23, from Cirencester, Gloucestershire, spent two months in hospital being treated for encephalitis - a serious inflammation of the brain.

"I remember lying on the floor next to my hospital bed and creating the sign of the cross," Moore, who also temporarily forgot who her parents were after the condition - which causes the body's immune system to start attacking healthy brain cells - struck, told PA Real Life. "Then, when the junior doctor came to see me, I'd say, 'Hello, I’m a messenger from God and I’ve been sent from heaven.’"

Despite no longer experiencing religious delusions, Moore claims encephalitis has changed her personality - making her less inhibited - and also blames it for ending her first serious relationship.

"It's very upsetting because I feel like I am better and I am back to normal, but I know that something has changed and my mum and dad sometimes comment on things that I might say that before I wouldn't have done," she said. “And, after the breakdown of my last relationship, I stopped looking for love because I was worried that my illness would mean we just broke up again."

Before Sept. 2015, when she was struck down with encephalitis, Moore was a fit and healthy young woman, who ate well and visited the gym regularly.

Living happily with her then-boyfriend, who she does not wish to name, in Stroud, and working as a customer service assistant at an energy company, for a few months before the attack, she started experiencing out-of-character feelings of jealousy and paranoia.

"In the three months before encephalitis hit me, I was becoming paranoid and was getting worked up about things that wouldn’t normally bother me," she said. "For no reason at all, I was getting really worried about my boyfriend at the time speaking to other girls, which never used to bother me before. And looking back now, that was clearly the beginning of it."

Her condition deteriorated rapidly at the end of Sept. 2015, when Moore caught flu and was confined to her bed for a week.

At home on her own while her boyfriend was out one evening, she called her parents and, sensing something was wrong, her orthopedic engineer dad Ivan, 53, immediately drove to her house and brought her back to the family home in Tetbury, 11 miles away.

"Mum and Dad knew something wasn't right with me, as I was very distressed and out of sorts," she said. "It was becoming apparent that this wasn't just flu. They were on tenterhooks."

Then suddenly, Moore, who at that time was 20, started having a seizure in their living room, her eyes rolling back into her head and her mouth foaming.

Frantic and unable to bring her out of the seizure, her parents called an ambulance and paramedics immediately defibrillated her once she was in the ambulance to kick-start her heart and bring her back to consciousness.

She was then rushed to Gloucestershire Royal Hospital 20 miles away in Gloucester, where she was put into an induced coma for 48 hours to reduce the damage to her brain caused by the seizure, which doctors were unsure of the cause of.

"My memory from then has all pretty much gone and I've had to piece it together from what my parents and younger sister Ruby, 19, have told me," she said. "But I do remember coming to and looking at the catheter bag at the end of my bed, thinking, 'How strange, I wonder what could have happened?' and then feeling a horrible pain from where I’d bitten my tongue during the seizure."

Totally disorientated, when her family came to visit her she did not recognize them and was barely able to form sentences.

Gradually, over a week in the hospital, her memory and faculties returned with the help of steroids to reduce the brain inflammation and Moore was allowed to return to the flat she shared with her then-boyfriend, having never been given confirmation of what had prompted her mysterious seizure.

Still confused, she was advised to have someone with her for the first two weeks and could not leave the flat without quickly becoming so overwhelmed that she had to flee back indoors.

"I started becoming delusional, too," she said. "Once, I was watching the news on TV completely petrified, as I thought that I was there in the war zone that they were reporting on."

Things came to a head a week after she went home when, lying in bed beside her boyfriend one night, she was suddenly struck by the thought that her mother Alison, 52, was dead.

"I sat bolt upright and was totally convinced she had died, as if someone had just told me, and started getting ready to leave the flat and go to my parents' in the middle of the night," she said. "It was clear then that I needed to be back in hospital again."

Readmitted to Gloucestershire Royal Hospital, Moore was diagnosed with psychosis, a common symptom of encephalitis, which usually develops a few weeks after the initial seizure.

"I became animalistic," Moore, who was eventually diagnosed with encephalitis after two weeks back in the hospital under observation, claims. "I had no knowledge of who I was anymore. The medics put me in a room on my own and I could see the birds flying outside and thought that I could, too. I was desperately trying to jump out of the window and fly and my dad using all his force to pull me back. I turned around and just shouted ‘F*** off', and I remember seeing him tear up at those words."

Despite the sudden change in Moore's behavior and personality, her parents tried to be as comforting and helpful as they could, visiting her every day and humoring her often incoherent conversations.

Unfortunately, her relationship did not survive, as two weeks before the end of her nine week stint in the hospital, her boyfriend confessed he could not cope with the change in her.

"The illness had really altered who I was, and I think for a young relationship that was too much of a strain,” she said. "He came to visit me and started crying and we both decided it wasn’t right any more. He left and I closed my curtains and just started sobbing my eyes out."

When she was finally discharged, Moore moved back in with her parents and, while her psychosis diminished, she could not work for 18 months because of exhaustion and disorientation.

"For a long time I had to rely on my mum to help me get dressed in the morning and put my make-up on," Moore, who ballooned from 8st (approx. 112 pounds) to 14st (approx. 196 pounds) within 10 months because of steroid treatment, said. "I felt so tired all the time, but my parents were amazing in getting me up and doing things so that I didn't just sit around and wallow. And that really helped me get off my feet both emotionally and physically."

At first taking a part-time job as a shop assistant, in Nov. 2017, Moore was able to go back to working full-time as a sales consultant at travel agent Thomas Cook.

Then, in Feb. 2017, despite vowing not to get involved with another man, she met sales assistant George Moore, 25, who had been in the year above her at school, although they had never spoken before. 

Initially finding each other on Snapchat, the pair clicked and met up for a coffee - soon dating and moving in with each other in Cirencester just six months later.

"I told him all about my encephalitis and what had happened to me on that first date," she said. "He was brilliant and really encouraging. I fell in love with George and he made me feel so much better. He's really tried to change things for me and help me to recover. That has been so important in getting over this nightmare.

"Sometimes I might seem a little strange, but he just said how brilliant he thought I was to have come through it all, and that made me feel really good in myself," she said. "Now that I am recovering and have George at my side, I am completely comfortable in myself again."

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