What are the effects of encephalitis?

For Encephalitis Information Week 2021, we asked our volunteers to talk about how encephalitis has impacted on them.

For more on Encephalitis Information Week, visit our campaign page.

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Helen's story

I had Herpes Simplex Encephalitis in 2003 and as a result both of my temporal lobes are severely damaged. Things that are affected are my memory, my sense of smell, my reading, emotions, sense of taste and I’m also epileptic. But, luckily, this is generally controlled - I only have mild seizures.

The effect I find by far the hardest to cope with is my memory. I was four months pregnant when I was ill and, although I do have memories of my now 17-year-old son’s life, I have way more of my own childhood.

Names are something I find hard to remember! In the early days, when my son had started school, I was seeing a psychologist and one of the things he taught me was a way for remembering them. His name was Mervyn. I had to make a sentence using each letter and the 'homework' I got during my first session with him was to put a sentence together for his name. It was 'My Evelyn Runs Very Youthfully Nowadays'. My nana was Evelyn and her name is used loads for the letter “E”. The next I put together was for the headteacher at school - Ms Sewell. The sentence was 'Steph (my sister) Eats Well Every Lucky Lunch'.

Regarding my sense of smell, I didn’t smell anything at all for two years (we joked how that had happened at the right time after having a baby!) but then I started to smell a few things - only nothing like they’d smelt before. I rang The Encephalitis Society and somebody explained to me how this happens. Sense of smell is controlled by wires all around the brain so when it becomes inflamed they break and the sense of smell goes. After a couple of years, the wires may start to reconnect. Only they don’t connect to the pieces they broke from, so we’ll smell something again but it’ll smell nothing like it smelt before. It all made sense to me.

My reading is affected. Although I don’t think it’s as bad as my early days, I often have to put extra thought into what a word says and often sentences come out like lists of words. This is definitely worse when I’m reading out loud.

My emotions, although, an affect, are not life-changing. A song might come on the radio and my eyes will fill with tears.

I also have good after-effects that I’ve no idea what category to put it into. I used to be squeamish but I’m not at all now and one comedy I hated and never saw anything funny about was Only Fools And Horses. That changed

Aliya's Story

I had a very standard neurological, occupational, psychological, and physical treatment; such as taking medication with a combination of chemotherapy, relearning who people were and what I do in my life, talking about how my mental health was going, learning how to walk again, etc.

When it comes to tips for treatment, firstly, and I cannot stress this enough, listen to your doctors. At some moments I thought I felt completely normal again as I haven’t had a seizure in months. With that, I decided skipping a few doses of my anticonvulsants here and there and thought it would be okay. NO. Not only did my seizures return, but I lost even more memories and abilities to do things like riding a bike and driving. I forgot who my boyfriend was and seeing complete fear in his eyes in the emergency room broke my heart. So, TAKE YOUR MEDICATIONS.

Additionally, I recommend giving yourself time to take care of yourself not only neurologically, but psychologically. Surround yourself with people and things that make you happy and give yourself a break. By giving yourself enough time to heal, treatment can quicken and maybe simple things like just looking at your staircase could trigger a memory to return.

In my case, depression quickly came along after being discharged from the hospital as well. Allowing myself to be around the people who make me happy and do the things that I enjoy quickly diluted my symptoms of depression and brought back some memories. Sometimes just allowing yourself to recharge mentally can really do good for your road to healing.

John's Story

I would like to preface these few words by saying that since getting viral meningo-encephalitis in 2016, I have since made an excellent recovery. Although I never returned to the job I loved, encephalitis related issues no longer define my life. I still have some minor but quite manageable issues and I hope that my recovery will be of some support to anyone who is now on a similar journey to the one myself and my family found ourselves on five years ago.

Initial symptoms were typical of a bad flu and I have some memory of being in bed with a bad headache and just not wanting to move. When my doctor saw me and noticed confusion and a tremor in my right hand, she sent me straight to casualty where I was later discharged that same day following blood tests and a CT Scan. I was told that I was working too hard and had picked up a bad dose and that a week off work and a few paracetamol was what was needed.

At the time, I was working as a principal in a large special school in Dublin. I loved my job and was blessed to be surrounded by the most wonderful children and dedicated and caring colleagues. Little did I know that when I was sent home from the hospital to rest, I would never return to work and would be forced into early retirement as a result of the encephalitis, which by now, was beginning to manifest itself in strange behaviours, general confusion, a continuously shaky right hand, mild hallucinations and chronic headache. When my GP rang the following morning to enquire as to how I was, she was surprised to hear that I was back in my own bed and told Fiona, my wife, to bring me straight back to the hospital where I would stay for the following three weeks.

My diagnosis, unlike the case with so many other encephalitis survivors, was confirmed relatively quickly by lumber puncture and MRI scans. To make a long story short, I was eventually discharged under the care of a consultant geriatrician (I don’t think I was well enough at the time to really question the reason for this but I imagine that it was hoped that a geriatrician, who had experience in dealing with poor working memory, was seen as the best fit at the time. I was fifty-four and my life was about to change dramatically. In my own mind, I was just so happy to be getting out of hospital and was hoping to be back at work and play in a matter of weeks.

When I read and hear other people’s stories, I appreciate how lucky I was that I was never in a coma, never on a ventilator and never had to relearn how to speak, or read or walk again. What became clear was that, on adjusting to life outside of the hospital, I was left, initially at any rate, with a patchwork quilt of new challenges. These included short and long-term memory issues, fatigue, much lower powers of concentration, a poor sense of direction, taste issues, sensory overload, being very emotional, as well as a total nose dive in self-confidence. Each one, in its own way, was preventing me from returning to life as I had known it.

I had difficulty finding some words, especially if I was in a busy and noisy environment, and I remember being very conscious of closing my eyes quite a bit when talking to people and getting tired very quickly especially when in company. My ability to interpret language at the time had been affected and I was very slow to get subtleties or jokes etc and even simple newspaper headings were the source of confusion and frustration. Everything was being interpreted literally and my processing speed had been significantly impacted.

I appreciate now that I had become more irritable and at times argumentative, misconstruing remarks and situations on a regular basis. With regard to good friends, with whom I am still blessed, I had no desire to meet up and when I did, I always found it exhausting. I know that, for some time, I became more comfortable not being with them but rather in my own company and in that of my beloved dog, in whose world I had not changed but had simple returned after being away for a few weeks.

Publicly, I tried to pretend that I was better than I really was. I became very conscious of asking people to repeat themselves and it was often easier just to nod or smile with them rather than to admit that I was having problems. I recall getting quite emotional when discussing any difficulty which I was experiencing. Not talking about daily encephalitis related issues therefore quickly became my default mode. People would tell me I looked well and it was so much easier for me to say that I was doing fine and hoping to return to work soon. The reality was quite different.

For the first few months, Fiona was the only one who I felt had some understanding of what I was going through. It didn’t take me long to appreciate that it wasn’t just my world that had changed but also that of the people I cared most about. I know that they made allowances for my difficulties. At times this exacerbated any frustrations I had. I didn’t want to be treated any differently than I had been before the encephalitis.

I became quite frustrated with myself for not being able to do things or understand things that, prior to encephalitis, had been part of who I was. I remember wanting to go to the shops on my own etc while at the same time being very concerned that not only would I not be able to find or even remember what I was looking for, but that getting through the check-out would, on a number of occasions, be an ordeal to say the least. I was happier if I knew that Fiona was nearby but I really wanted to be able to do things for myself. My diary, which my consultant suggested I keep, referred to a determination, I seemed to have, not to always heed the doctor’s advice but to push myself to doing things for which I wasn’t quite ready.

Watching golf or a tennis match on TV was frustrating and yet another daily reminder that, if it was a cognitive challenge to work out who was in the lead and then to retain that basic information, progress was always going to be on a slow burner. During my initial recovery, I only really enjoyed watching television on my own, as I could rewind, as I wished, in order to recap on a sentence or two which I would have missed. Films for the first year were a non-runner for me as they involved far too many character interactions and I wasn’t good at matching faces with characters in my head. To this day, despite such a good recovery, I still need to meet someone a few times before I can see them in my mind’s eye. This probably explains why I could listen to and understand a Ted Talk on a variety of interesting topics but could not follow a film or a simple soap opera on TV.  I could follow animated films a bit better but I regularly found myself getting emotional even watching cartoons with my grandson. I remember feeling somewhat consoled having being assured by therapists in the National Rehabilitation Hospital, that this display of raw emotions and a heightened empathy was a good sign in term of brain recovery. (After a few months my geriatrician had referred me to the NRH where I was very fortunate to receive excellent and appropriate support).

A child at heart, as a teacher, I had always enjoyed learning magic tricks but all of this seemed light years away. In school there was always a captive but willing audience who were not slow at boosting the ego and telling me how great I was! I missed that. I know that during my initial recovery, I had lost any real sense of self-worth and I missed being responsible for things. All of a sudden, I was no longer the go- to-person when someone had a problem. I’m fairly sure that the selfish part of my ego actually missed that too. Part of me needed to be of use to a significant number of people in my family, work and friendship circles. 

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