I have always been active, I love to play sport and keeping healthy is a priority of mine. In September 2019, I entered the teaching profession with a spring in my step. Little did I know something wasn’t quite right. When I started my Newly Qualified Teacher year, I was beaming with enthusiasm and I thoroughly enjoyed having my own class! Unfortunately, within a few weeks, I started to notice a number of signs suggesting that something wasn’t quite right – I had been having headaches for a while, extremely tired, up and down with my emotions and very clumsy. However, there are a few teachers in my family and having shared my feelings, we decided the symptoms were a result of the stressful, busy lifestyle a newly qualified teacher leads.
When I reflect on this time, I realise that my memory was also starting to fail me, and that these symptoms were the start of the most challenging and frightening year of my life.
On Friday 6th December 2019 whilst at work, I started to feel strange. It is difficult to explain exactly how I felt, but I knew I just did not feel right. I had forgotten to do certain tasks that week and when colleagues prompted me, I couldn’t remember being asked to do them. I went to the staff room for some quiet time. Colleagues who were in there at the time explained afterwards that I repeatedly picked up a piece of paper and put it down again. I have no recollection of this and have since found out that this was a type of seizure.
That afternoon I drove home after work as I normally did. My boyfriend (Charles) and I had moved into a new village a week earlier and as I felt better in the evening, we went to the local pub for a drink. I normally love to have a gin and tonic but this time it just didn’t taste right. I asked Charles to try it and he said it tasted normal however I chose not to finish it. When we left the pub to walk the short five minute walk back to our house, I had no idea where I was and tried to walk the wrong way. I said to Charles “I feel really weird”, he describes me as appearing confused, looking lost and acting weird.
In the early hours of Saturday morning, I ‘woke up’ at 3am to my boyfriend saying I had just had a seizure, that I had been unconscious for quite a while and that he had called for an ambulance. I had absolutely no memory of it at all, and I didn’t believe him at first. Next thing I remember is a paramedic sitting on our bed telling me that everything was going to be OK. I was taken to A&E and by the middle of the next morning, I was discharged. I was told that having one seizure is nothing to worry about and that it is not unusual for a female in her 20s. However, just after midnight that same evening, I had another tonic clonic seizure. Once again, I was unconscious for sometime and my boyfriend called the ambulance. In A&E, I was seen again and fairly swiftly given a diagnosis of Epilepsy. I was sent home with medication to take and an appointment to attend the Epilepsy clinic at the hospital, three days later.
After four days I went back to my home to stay with my parents and have some home comforts. In the early hours of Friday, the 13th Dec (a truly unlucky day) I woke in a hospital bed with my Mum & Dad by my side. They explained I had had another four tonic clonic seizures, one after the other. Apparently, I didn’t recover from one seizure before the next one started. I was rushed to hospital in an ambulance whilst I was still unconscious and I eventually came round just before the doctor was going to take me into intensive care.
That evening on the ward in the Queen Elizabeth Hospital – Kings Lynn (QEH), I had a terrifying time with paranoia and hallucinations. I thought that all the staff in the hospital and my family were against me and trying to hurt me. I wouldn’t take my tablets, I refused to do everything that they needed me to do to make me better. I could see the blue curtains surrounding me on fire and I was desperate to get out. This lasted for around 36 hours. I was so fortunate that my Mum was allowed to stay the night in hospital with me and my Dad, Sister and boyfriend arrived early in the morning to help calm me down. They were able to tell the staff that I had never behaved like this before. When I think back on this time it does seem like it was a dream but I can now remember it quite clearly. It was so unlike me and that was the most worrying thing.
Following tests including a CT scan, an MRI, EEG and a spinal tap, I was told that I had Autoimmune Encephalitis (no one in my family had ever heard of this before). A few days later I was transferred by ambulance to Addenbrookes Hospital where I could receive more specialist treatment. After many more tests and scans, I received five consecutive days of Plasma Exchange. This treatment involved me having a line inserted into my neck which was very frightening and painful.
I had never imagined spending Christmas Day and my birthday (on Boxing Day) in a neurology ward at Addenbrookes! We made the best of a rubbish situation on Christmas Day, my immediate family turned up with gifts and a Father Christmas outfit! On my birthday, I was really grateful that my Dad (who had turned up extra early) was allowed in to see me and the staff on the ward came in and said “Happy Birthday, it’s time for plasma exchange!” My family put a banner up in the hospital cafe area and both my sisters arrived to make the day super special! It is times like this that I look back on so fondly, I could not have done it without all the support from so many family and friends. On my Birthday night, we had a KFC delivered to the hospital and this was the best KFC I have ever had!
I had bad pins and needles in my arm which delayed my discharge. I was seen by many professionals to ensure everything was okay. The professionals said it was due my high doses to the medication. Later that day I was discharged on the 27th December. I had a long list of medication I had to take and I was extremely tired yet found sleeping difficult. I couldn’t focus on any television programmes or read any books and this had been the case throughout my hospital stay also.
My recovery started slowly as well as my walking! I could hardly walk out of hospital on the 27th and for a few months after I couldn’t walk in a straight line. I built my walking up and it gradually got better but my balance was also a problem. I found it impossible to concentrate on anything and sometimes wondered if I would get back to normal. The medication didn’t help as it did make me feel like I was having 10 vodka shots all the time! As I slowly came off my medication I did start to feel better. I completely stopped my medication on the 29th July, I marked this day by having a delicious lunch with my Mum and Sisters.
Following my illness, it was important to establish the specific antibody causing this. However, all the antibody tests had come back negative, no antibody was identified that had caused my illness. In one way, this was annoying as I did want to know what had caused all this to happen but at the same time I was fortunate as it means I do not need to take medication in the future.
I had to surrender my driving license in December 2019 when I fell poorly and have had 12 months’ seizure free, so in December 2020 I got my driving license back and this has been amazing!
Now, I have started training for the 2023 Brighton Marathon. I will be raising money for Encephalitis International.
A special thank you to my family, my boyfriend, Charles and all those who have supported me and helped me through such a hard time, believing in me all the way through. I have always been a smiler and tried my best to be optimistic. Going through this ordeal really tested this, I experienced my lowest of lows and without all the support around me it would have been impossible and couldn’t have done it without you.
Thank you to QEH and Addenbrookes staff for the help and support to me and my family. Thank you to Encephalitis International for the very useful resources and the support received at the virtual gatherings that I have been involved with. I very much enjoyed meeting other people virtually who had been through Encephalitis.
Freya
PART TWO (UPDATED: MARCH 2023)
I was first diagnosed with autoimmune encephalitis in December 2019. After being successfully treated, I had a very unexpected relapse in May 2022.
I was back teaching part-time, and I was driving again, all was good. Then in the lead-up to May 2022, I was having quite a few petit mal seizures (at the time I did not know this was known as a seizure). During these short episodes of about 10-20 seconds, I felt very nauseous, dizzy, and had a metallic taste in my mouth. I could smell something that I could not identify and just felt weird. At the time, I put it down to fatigue and I thought nothing of it. One night in May, I had two tonic-clonic seizures and ended up in the hospital again.
My boyfriend woke to me having the first seizure at 2:40am, so he called 999 and we went to the hospital in an ambulance. I was then discharged as I seemed to be performing well despite my history of autoimmune encephalitis. We both went home and went back to sleep. At 8:30am, my boyfriend woke up to me having another seizure so called the ambulance again. This time I was kept in and had blood tests, a lumbar puncture, and an MRI. The MRI showed some swelling on my brain but in a different place than before. This relapse of my encephalitis was a huge shock to us all. I surrendered my driving license again, but I am hoping to have it back in May 2023. I was put back on anti-epileptic medication and steroids and in August I started azathioprine which is an Immunosuppressant. It is expected that I will remain on these and the anti-epilepsy drugs for around five years.
After my relapse in May, I had some time off work but returned after three weeks as I felt my recovery was going well. On reflection, this was probably too early. The high dose of steroids I was taking following the relapse in May, was starting to be gradually reduced but in October, I started to feel dizzy and nauseous. These symptoms started to become more and more regular, so I told my boyfriend how I felt. While I did not have the odd smell and metallic taste, something still did not feel right. On the 21st of October, we called 111, and they told us to go to accident and emergency. Once we got to the hospital, I saw a neurologist quite quickly. He listened and was very understanding of the situation. My boyfriend was able to be with me during my consultation, which was very helpful as my memory is not great. I was given intravenous steroids again and the neurologist said it was likely to be an early sign that something might happen.
Recently, my steroid dosage has gradually been coming down and I am hoping that the azathioprine is starting to work. I have reduced my working hours to give myself the best chance of a good recovery. What I have learned from this is to listen to my body, be aware of signs as they could be serious, and only do what I can manage. When I do too much it is a step backward with recovery, so my top tip is to listen to your body!
Thank you so very much to my family, boyfriend, and friends who have been so very supportive and always there for me.
Find more information on autoimmune encephalitis here.
