Life After Encephalitis: Ross’s Story
This is an edited excerpt from Ross’s Story in Life After Encephalitis by Dr Ava Easton (pages 55-61). Published in 2016 by Psychology Press. Copies can be purchased from The Encephalitis Society (www.encephalitis.info) or from Amazon, among other suppliers.
Ross has been feeling unwell for some weeks now, and is being treated for depression and anxiety…
“My dad asked me to go and see his GP. It was probably the tenth visit to a GP in the space of six weeks, but I agreed. This GP prescribed beta-blockers and another anti-depressant. This would be the third anti-depressant drug I had been prescribed in six weeks. I had seen four different GP’s all of whom had different ideas about how to treat me. How did I know who to believe?
The 10th of July was a very bad day…I kept telling my family there was something wrong with me; that it couldn’t just be depression. I started hitting my head against walls to try and knock the burning out of it…I was screaming. I was crying. I was in agony. I was convinced that I was about to die. My parents called 999 and I was taken to hospital for chest x-rays and CT scans of my head. I spent the night terrified that the lumbar puncture that they were planning to do would go wrong and I would end up disabled after it. That next morning a doctor told me that there was nothing wrong with me physically, they weren’t going to do the lumbar puncture, and that I had a mental problem. I was discharged.
I returned to my parent’s home…the tingling started…it was going to happen again. I lost all sense of what was right in the world. The screaming started again…I couldn’t think, and worse, now I couldn’t remember. I couldn’t picture people’s faces in my mind. I started shouting out friends and family names as I thought that if I didn’t I was going to forget them. It literally felt as if memories were draining out of my brain. I was taken back to hospital for the second time in 24 hours…I was discharged for a second time, and the local crisis team visited daily.
Things began to feel a little more under control. I was referred to a psychologist, and I was prescribed an anti-psychotic medication. This made me very dozy but at least it controlled things.
By now I had spent months convinced that it couldn’t be a mental health problem. I had tried everything I could to make myself happy: I had reduced work, taken breaks away, but nothing was helping. Every morning I started the day questioning what the point of the day was; what the point of existing was.
I made it through the next few weeks, then something happened. Life was turning very dark. On the 26th August I was at home on my own. I took a belt, wrapped it around my neck and wedged the end in the top of a closed door. I let the belt take the weight and I was happy that it would soon be over. Fortunately the belt snapped. That night my girlfriend found out what had happened. She rang the crisis team who were close to taking me away with them, but, they didn’t.
On the 30th we were due to fly to Crete. The crisis team said even thinking about going was a bad idea. However, I was determined to try, just to keep some normality in my life. We got in the car but didn’t get far before the panic started. I was trying to get out of a moving car, and my girlfriend turned the car round and headed home. The crisis team were called again – I was placed under section two of the mental health act, and taken to hospital.
I was transferred to a higher security hospital where I remained for seven weeks. My medication was increased to keep me stable and in the October I was transferred to a general hospital, where I was scheduled to see a sleep specialist since my sleep was getting more bizarre.
The sleep specialist looked at me in a new way – in a way other doctors hadn’t. I owe him a lot, probably my life. After being with him for hours, he wrote to the mental health hospital saying I should be reassessed and probably taken off all of the drugs I was on. I was referred to a neurologist, and spent a month in the neurology ward with the consultants searching for an answer. Finally, the test for anti-NMDA receptor encephalitis returned positive. My brain was seriously unwell, and I was immediately started on Intravenous Immunoglobulin (IVIg) treatment.
The 8th of November 2014 is the first day that I remember since the middle of August. I remember lying in a bed thinking “where on earth am I?” In front of me was a notepad with a note from my mum saying I was in hospital and that it was the middle of November.
Looking back, the biggest clue to there being something wrong were my memory issues. With the depression and anxiety we kept finding possible reasons for them, but the memory loss? That was unexplainable. I started to forget pin numbers, passwords, directions, how to use maps, how to put up a tent, I couldn’t remember names or faces. The only explanation anyone provided was I was so stressed that I was just shutting down.
I don’t hold a grudge about what I went through, I just wish they had thought about, and looked for, a cause outside of their own discipline earlier on. Mental Health and Neurology both work with the brain – stronger links between the two may have saved me months of misdiagnosis.”