I went on sick leave for fatigue in October 2015. When I left work, I left a battle field behind me. Ten weeks later encephalitis entered my life. One minute, I was in my kitchen, the next I found myself waking up in a hospital bed. What happened in between is something I cannot remember. I woke up in isolation. A nurse was sitting on a chair next to my bed. I did not know how I got there and more importantly, I did not know where my four-year-old was. I asked the nurse. She told me that I had been very ill the night before and that my daughter had been placed in care. How come? Her grandparents live an hour away, in a village called Kingussie. I asked the nurse to contact them. The police gave them a call and they were able to pick their granddaughter up. My ex-partner who was working offshore, as an engineer, received a call from his mother urging him to come back as soon as possible to look after his daughter while I was being treated for meningoencephalitis.
I asked a male nurse if this would happen again. He assured me that encephalopathies were very rare and that it was unlikely. According to the doctors, a virus entered my brain. I was hospitalised for a few days before going home. My daughter came back to live with me.
My daughter and a neighbour were the ones who told me what happened that night. According to my four-year-old, I was in the kitchen when out of the blue I started vomiting. The sight of me so ill, made her feel sick. She too started vomiting. Then, I rushed upstairs to prepare a bag. But, I could not do it properly, the clothes ended up all over the place. I vomited on the stairs, near the toilets, pretty much everywhere. I told my daughter that we were going to hospital. I grabbed her and rushed to the car. But I could not remember how to drive. I sat on the driver’s seat for a while, unresponsive to my daughter’s complaints. Then, I got out of the car, leaving her inside.
One of my neighbours told me the rest of the story. Before going to bed, she noticed the light in the garden of Mrs X. It was going on and off. She saw someone tapping on the window. But, she could not see who it was. She called the police. Then, she realised that it was me. When she joined me, I was confused and disoriented. I was no longer in Mrs X’s garden, but wandering around aimlessly. I kept repeating my ex-partner’s address again, and again, and again. I could not recognise my home, and I did not remember my name. She thought I was having a nervous breakdown. The police arrived and called an ambulance.
When I came back, I had a lot of tidying up to do. My home was a mess. I was struggling to keep up with housework. I managed to sort it all out. I was supposed to have radioactive iodine therapy the following week. My endocrinologist thought that I was suffering from Grave’s disease. After what happened, I called Raigmore Hospital. I wondered if it would be reasonable to proceed. My endocrinologist called me back, her advice was to cancel radioactive Iodine therapy to treat my hyperthyroidism. Instead, I received a letter from The Belford. Their endocrinologist wanted me to increase my dose of Carbimazole. Carbimazole is a drug that did not seem to be working for me. I piled on the stones, but thyroid function results were always abnormal. I had a noticeable goitre when I started the drug (see picture below).
The encephalitis that struck me in January 2016 did not happen overnight. I had been suffering from a wide range of symptoms before that night such as anxiety, low mood, and agitation. I believed that stress had a lot to do with these symptoms. There were times when my left hand became rigid. I had pins and needles that did not feel like ordinary pins and needles. They were persistent. I was not sleeping well at night. I had jerks. A few months before it happened, I even had a headache that went on for four weeks. According to the surgery that four-week-headache was caused by a sinusitis. More importantly, I was exhausted all the time, even on sick leave. On a few occasions, I struggled to write or speak. A simple task was taking ages for me to complete. A few days before that night, my eyes were opening and closing rapidly for several minutes and there was nothing I could do. I could not make it stop. Obviously, I did phone my GP to inform him about the issues I was facing. Unfortunately, he was as clueless as I was, and my symptoms were dismissed. Therefore, I stopped calling.
Between January 2016 and June 2016, I was admitted at the A&E on six occasions. After that night in January, I suffered from headaches. I was told that it was normal after a lumbar puncture. There were times when I was hallucinating, hearing or seeing things that were not there. The first time it happened, I was taking my daughter to bed. She was behind me and I heard a female voice saying: “What’s that?” I looked at her very surprised and asked her to repeat what she just said. She insisted that she had not said anything. Then, I heard a man saying: “What is it?” At that point I knew that it had nothing to do with her. The following evening at about 10pm, I just finished tidying up my kitchen, when I heard someone knocking three times on the door. I opened the door and no one was there. The following morning, I took an emergency appointment with a GP. I thought there was something wrong with me. She reassured me when she told me that it was a good sign. My brain was healing from what they called encephalitis. Meningoencephalitis was written on my discharge note. But, on my sick line they preferred to write encephalitis. Weeks later, just before going to bed, I saw children playing in my garden. On another occasion, I saw a ball thrown in my lounge and my daughter picked it up. The thing is I do not have a clue who could have thrown the ball. It came from behind us and there was no one there.
The Belford requested an MRI and my GP made a referral to speech therapy for an assessment. I spent almost two months on a waiting list for the MRI. One afternoon, I received a call because of a cancellation. The person calling asked me if I would be willing to take that appointment. Even though it was on Mothers Day, I accepted the invitation. The lady told me that a letter would be sent to my address. I never received the letter. On the other hand, I drove for two long hours to attend that appointment. I was in the waiting room, when another person arrived shortly after me for the same appointment. The difference between her and I is that she was the one who had received the letter. The appointment was not supposed to be for me. They asked me to leave. But, I warned a member of staff that I would not leave without doing that MRI. They allowed me to have a basic MRI but they did not know which frequency to use for me. The MRI came back normal and according to the speech therapist, I did not need their service. My speech was normal. No referral was made to see a neuropsychologist. I did not get an EEG. My health was stable and there was no need to keep me on sick leave. One of the GPs wrote “prepare phased return” on my sick line. Unfortunately, a few weeks later, my health started going downward again.
Once again, there were times when I could not talk. In April 2016, I was preparing lunch for my daughter before dropping her to nursery. Her lunch was cooking and we went upstairs to prepare her bath. I was talking to her as I was adjusting the temperature of the water, when suddenly in the middle of my sentence I could no longer say a word. My daughter tried to finish my sentence for me. I did my best not to panic. I went downstairs. I thought I was having a stroke. I could feel pins and needles going down my right arm. I grabbed the phone, but I could not say a word. Then, I went up, my speech came back. The pins and needles stopped. Therefore, it was not a stroke. I bathed my daughter. She ate her lunch and I took her to nursery for the afternoon. Unfortunately, it started again. I had some difficulties in speaking. I did my best to articulate and speak slowly. I asked the manager of the nursery to call my daughter’s grandparents to pick her up. I knew I was in trouble. I went back home to prepare a bag for my daughter. Then, I went back to the nursery to give it to them just before driving to hospital. My headache worsened mainly because I was waiting at the A&E with another patient who was screaming. I sat there for two excruciating hours before being seen by a doctor. They kept me overnight. I was talking gibberish, writing gibberish, and worse I was hallucinating and forgetting it even happened. A suggested diagnosis of Hashimoto’s Encephalopathy was made, but no test and no treatment. No transfer. Instead, I was sent home. The doctors at the Belford were having some difficulties to convince the surgery and Raigmore Hospital. The Belford wanted me to do an MRI and an EEG.
My GP called me. He thought that I may have had a seizure. According to him the incident could have been caused by a wide range of other things. He wanted me to do another MRI, but with a neurologist present in the room this time. At that point, I wondered about brain cancer. How could it be? My last MRI was done recently, and it came back normal. So, here we go again on the waiting list.
A few weeks later, I received a letter from my endocrinologist for a clinic appointment. I met her. She took some blood to check thyroid function. Thyroid hormones were high, and thyroid antibodies reached 75. It was way above normal, but not enough to take action. If I had reached 100, my endocrinologist would have done something. During the clinic appointment, I told her that my dog had passed away recently and that I was devastated with the loss, I was a lot more forgetful and exhausted.
A few days later, I woke up one morning. I was not hungry, but shattered. I drank a cup of tea, my daughter had some breakfast and she was playing. Once again, my home was a mess. The dishes were piling up, etc. Two weeks before, my home was still clean and tidy, but not anymore and I was not happy about it. Just before starting the dishes, I tried to call a friend, but the screen of my mobile phone did not respond. It did not matter which button I was pressing, the screen did not change. I gave up, and I started doing the dishes when I felt a pressure down my neck as if a hand was pushing me down. I went back to the lounge. I told my daughter that I was going to rest for five minutes. I felt an urge to sleep. She looked at me, and I noticed that her face was round like a clock. That was strange. She told me that my voice was funny. I asked her what she meant. She repeated herself: “Mummy, your voice is funny”. I asked her again. I did not have the time to finish my question and off I went.
I could feel pins and needles going down my right arm. I knew it was familiar but I could not remember when it happened and that was it. It felt like I had received a general anaesthetic. “I went to sleep” just like that. A few days later, I emerged. I was sitting on a bed. A doctor was talking to me. He asked me if I remembered the last events. I did not have a clue what he was talking about. He asked me if I knew where I was and I answered positively. I was at the Belford. But, I did not know how I got there. However, I had a few flashbacks this time. The Belford and my endocrinologist referred me to a neurophysicist. My body was bruised. There were large dark hand prints on my arms as if someone had tried to restrain me very tightly. These hands left their marks on me. A couple of doctors asked me who did this, but I did not have a clue. There were also bruises on my chest.
Once again, I did not know where my daughter was. But, I was reassured when a member of staff informed me that she was with her dad and that she was fine. I grabbed my notes to find out more as I could not remember anything apart from a few flashbacks. On my notes, the nurse wrote that I could not remember wearing nappies. I checked under my night dress, and yes indeed I was wearing nappies, but I did not know why or who put them on me. When doctors were approaching to talk to me, I had the impression that they were too close, and I found them quite scary. All I could do was hiding under my sheet, using it like a shield to protect myself. I remember getting told off by one of them. “Stop it” she said. Stop what? What was I doing? Laughing for no reason? Laughing again and again? Yes, I laughed a lot.
Was it because of the seizures, or the drugs they gave me to stabilise me before transferring me to another hospital? I do not know. But, I may ask at some point in the future. She told me to stop it and that I was covered with faeces when I arrived at the Belford. She added that I did not remember what happened and that I will remember later. Well, two and half years later I do not remember what happened.
The Belford transferred me to Raigmore Hospital, and I was placed in High Dependency (HD). There was no space in Intensive Care Unit (ICU). A nurse told me that people were moved from ICU to HD because Raigmore did not have enough beds. The night when I arrived in High Dependency, a young doctor took some blood and three nurses woke me up for a head scan. Early in the morning, I did an MRI. Then, I was sent to Endocrinology. My specialist was waiting for me. She wanted me to be seen by a psychiatric nurse to rule out bipolar disorder. I insisted that if I was bipolar, I would know it by now.
I had met this endocrinologist the week before for a clinic appointment. She compared the results of the blood samples taken the week before my transfer with the ones taken the night when I arrived. The week before, Thyroid hormones were high and thyroid antibodies reached 75. As mentioned before if they had reached 100, action would have been taken. The night when I arrived, Thyroid hormones had dropped and thyroid antibodies were off the scale, way over 300 which is the maximum they can measure.
At that point I was very encephalopathic. I could not feel heat, cold, hunger or thirst. Time was flying. I was sitting on my bed, staring at the wall in front of me. Everybody around me seemed to be talking very fast. My speech was not fluent, and I could not walk a straight line without knocking myself against the doors or the walls. I was staggering around like a drunken man. I was oversleeping and waking up was a painful experience. It felt like my head was exploding. Also, I was talking like a five-year-old girl. Somehow, I had regressed.
I was told that my kidneys had hit rock bottom and that they would keep an eye on them. I was not feeding nor drinking. They gave me some IV fluid. When they did my first EEG, my endocrinologist was shocked with the results. My frontal lobe had stopped working. There were slow waves and a lot of seizure activities, and yet I was not fitting. But the results were abnormal. I was told that it was not safe for me to leave the hospital and that I would stay for quite some time. I spent a month there.
I met my Neurophysicist. The lumber punctures were normal, the head scan and the MRI were normal. But thyroid antibodies were off the scale, my home was a mess and the history of my hospital stays and my medical appointments were examined by the Neurophysicist. She told me that all the signs for Hashimoto’s Encephalopathy were there and that there was no time to waste for all the results to come back. That night, I started my IV treatment. I was given massive doses of an immunosuppressant drug through IV, each night, over three days. Then, I received high doses of prednisolone. The treatment saved my life.
We did an EEG each week, and the tests revealed that I had epilepsy. Therefore, I was given anti-seizure medicine. During my hospital stay, I found out that I had had a secondary generalised seizure at home and that was the reason why I was taken to hospital. Apparently a short circuit in the brain left me paralysed. That probably explains why I was lying on the floor for almost two days. When I was in Raigmore, I had some difficulties to remember simple things such as people’s faces or names, even long term colleagues. But, with a bit of time my memory improved.
A few months later, my daughter told me exactly what happened. She saw me fitting on the floor. There were times when I seemed to be sleep walking and knocking myself against the walls. I even fell on my coffee table and broke it. I was sensitive to light. One of my eyes was moving rapidly. I moved things around. I had foam and blood coming out of my mouth. Then, I just went to sleep until my ex-partner showed up. Obviously, I do not remember the peak of the crisis, but I was told about my behaviour. I was told that I was “fighting” with the paramedics who were trying to take me to hospital. I had to be restrained because of my behaviour. I wanted to sleep and they were disturbing me. That could explain the bruises on my arms. I spent two days covered with faeces from head to toe. Faeces were everywhere and that was the results of the convulsions I was suffering from. The truth is, if no one had come, my daughter and I would have died at the end of May 2016. But, someone showed up and helped us. Today, we are both alive and well.
According to the specialist, it would take me five years to recover. That is an estimate. Today, I am still recovering, and I am working as a teacher. I look after my daughter who will be 7 at the end of December. Most of the time there are good days, occasionally there are bad days. But, year after year, I am getting better. I have been off prednisolone for a few months now, and I am feeling good. Although no one knows how the condition could affect me in the future, I feel a lot more confident about my recovery now I am doing well without the steroids. I am planning for the future. A change of career is on the horizon at the moment as I am looking at courses. I am more careful with my diet than I used to be. Most nights I go to bed at nine o’clock as opposed to eleven or even one in the morning. But, more importantly, I am enjoying the simple pleasures life can offer, whether it is a walk up the hills or shopping with my daughter. I appreciate life more than I used to, and I will enjoy it even more when I start a new career.
International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.
Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.