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Viral Encephalitis : My own experience
Member Name: GentleGenius
Disadvantages: A debilitating illness that can be fatal, or leave the victim with some nasty side-effects
Simply, encephalitis is described as an inflammation of the brain. The illness does have a lot of similarities to meningitis; they are different conditions, although in the early stages of encephalitis, the onset can easily be confused with meningitis. Although meningitis is rarely, if ever, at first mis-diagnosed as encephalitis, the reverse is common - until further tests are carried out which determine and pinpoint the true nature of the illness. The symptoms of encephalitis can also closely mimic metabolic disorders, a stroke, brain tumour and reactions to some illegal or prescription drugs. The usual tests given will pinpoint encephalitis as the condition the patient is suffering from, and these tests will take the form of CT and MRI brain scans, an electroencephalogram (EEG) and the administration of a lumbar puncture (which is the drawing of fluid from the base of the spine that is sent to the hospital laboratory for analysis).
There are many different types of encephalitis, such as the brain-stem variety, a tick-born variety which is more or less exclusive to countries with tropical climates, Rasmussen's encephalitis, limbic encephalitis, Hashimotos encephalitis (a Japanese variety)......the list goes on.
Though if caught in time and treatment is speedily administered, encephalitis of any variety is curable, very little is actually known about its causes. Encephalitis in general is quite rare, and in the Western world, the major cause appears to be either complications arising from illnesses such as measles, or in extremely isolated cases (a figure of less than one in a million is given), by a reaction to immunisation such as a polio or MMR vaccination. This most commonly diagnosed form of the illness is called Subacute-sclerosing Panencephalitis (SSPE).
The symptoms of encephalitis are pretty much the same, regardless of the type which is contracted. Though not everybody who contracts encephalitis will have all of these, the classic symptoms are:-
Photophobia (intolerance to light)
Ataxia (staggering gait)
Floppy-ness of limbs and neck muscles
Very high fever
Stiffness in neck and shoulders, sometimes severe enough to cause paralysis
Altered levels of consciousness
Drowsiness and/or deep, long-lasting sleep
Early administration of the anti-viral drug Acyclovir
Anti-convulsants (if seizures are experienced by the patient)
Antibiotics as a precaution against bacterial infection
Hospitalisation with plenty of bed rest
Though encephalitis is often fatal, a full recovery can be achieved once the patient is released from hospital, but takes a long time. The convalescent needs to spend a few weeks having plenty of rest, and lead a very calm, quiet lifestyle. Thereafter, a gradual upgrading of physical and mental activity needs to be slowly introduced, building up to normal - this should be done over a period of approximately six months, and will go a long way towards helping the brain restore its normal, pre-encephalitis functionality.
Approximately one-third of all encephalitis survivors will experience varying degrees of permanent damage caused by the illness. These complications can be mild, and may take the form of a slight deterioration in memory - but more serious after-effects can occur, such as paralysis in one or more limbs and/or varying degrees (sometimes severe) of brain damage that can impair the intellect, possibly resulting in unpredictable, maybe aggressive behaviour in some sufferers. A handful of encephalitis survivors can develop epilepsy, even years after recovery from the illness.
MY OWN EXPERIENCE
(NB: This is a complete re-write - abridged - of a piece I have previously published on Helium)
Though I was only aged 4 when I became ill with encephalitis, the whole experience is one of my most vivid childhood memories.
I was at nursery school, it was Commonwealth Day 1959, and our little class of three to four year olds were putting on a display of patriotism in the playground, marching in a circle and waving Union Jack flags. The day was incredibly hot and humid, with blazing sunshine beating down upon us as we trotted around the asphalt.
Just as the teacher called a halt to the parade and declared it was time for lunch, I began to feel strange in a way that I couldn't explain with the limited vocabulary of a 4-year old. Using adult language and hindsight, I can say that I was beginning to feel sort of oddly detached from everything around me, and it was as if I was perceiving everything through a film of water; that was a mental feeling rather than a visual disturbance. I don't recall having lunch, and my next memory is being back in the classroom with the other children. It was customary at this nursery school each day for the children to have a short sleep after lunch, and I watched as the teacher unfolded the camp beds ready for the children's nap.
As she passed by me, the teacher must have noticed that all was not right with me and she asked me if I was OK. She then pressed her hand against my forehead, and I told her that I had a really, really bad headache. Urging the other children to make as little noise as possible, the teacher moved my camp bed into a corner, away from the others, and told me to try to sleep. Well, whenever we had our afternoon sleep, I was never able to drop off, but on this day I could feel myself drifting in and out of a fitful, restless place of light sleep where I was having some very weird dreams - all the time I was aware of the banging and crashing pain at the back of my head, which felt as though I was being squeezed in a vice.
Each day at sleep time, the teacher would read a story, the favourite of the children's (and mine) being the Little Black Sambo story, where he chases a tiger round and round a tree, until the tiger melts into butter which Little Black Sambo gathers up in a bowl, and takes home to his mother for cooking pancakes with. That's all very politically incorrect these days, but us over-50s when we were kids absolutely loved the charming, heroic character of Little Black Sambo. Anyway, that was the chosen story for the day, and in it, there's a bit where the tiger growls loudly - the kids used to like to growl loudly along with the teacher as she read the tiger part. On this day, I could vaguely hear the teacher telling the children that they must growl very very quietly, as I was ill and mustn't be disturbed. As the story progressed, I could hear the kids making a very special effort to growl quietly, but it sounded like a million steam-hammers going off inside my head. Eventually I fell into a deep sleep, and was woken by the teacher telling me that my mum had arrived to take me home; obviously the teacher had told my mum that I was ill.
It was so very very hot outside, and my mum took us into the sweet shop opposite the school, and bought us both ice creams. I managed to eat mine, and we walked slowly to the end of the road. The pain in my head had eased quite a lot after my sleep, though I still felt a bit wobbly. Once we reached the end of the road, something strange happened - the whole world began rotating, as if I was rolling around in a tumble-drier, and my legs gave way beneath me. My mum was trying to get me to stand up and walk, but my legs just wouldn't hold me - so she had to pick me up and carry me all the way home. Once at home, I was screaming with pain, and was laid on the settee - still unable to walk - our landlady came in (she was once a nurse), took my temperature, and went straight back into her own room where the house phone was, to call the doctor. The doctor arrived, and looked into my eyes with his little torch, then tested my reflexes; there was no reaction. He then asked me to move my head around, but I couldn't; all my neck, shoulder and leg muscles had seized up into a kind of paralysis. The doctor then, just before he left, gravely told my mum that he thought I may have polio, and that he was going to arrange for an ambulance which should arrive at about 7:30pm, and take me to the local isolation hospital. My mum was crying - our landlady was trying to comfort her, and I was (as the doctor advised) put upstairs to bed.
I must have fallen asleep, because the next thing I remember is my dad coming into my room with his dinner - suddenly, I livened up. The pain in my head had gone, I could move my legs, neck and shoulders, and I was laughing and joking with my dad, sharing his dinner with him. My mum came up to see how I was getting on, and she was embarrassed as the ambulance was due any minute, and here was I - sitting up in bed as healthy as always, with no sign of illness whatsoever. It didn't last long though. There was a knock on the door, and a man was shown into my bedroom. He wrapped a bright orange-coloured blanket around me, and though he was extremely kind and gentle in his manner, I suddenly became terrified - what on earth was happening? I was carried downstairs into the street, and into a waiting ambulance; my mum and sister followed, both crying. It was then that I relapsed back into the paralysis and the terrible, crashing pain in the back of my head. As the ambulance rumbled through the streets to the isolation hospital, a young softly spoken nurse was sponging my forehead and body, as I was burning up.
Once in the hospital, I was carried into a big room with bright lights. There were lots of other children in there, most being put into "iron lungs" - these children had contracted polio (this was in the middle of a polio epidemic in the UK). A white-coated doctor tried to relax me as he did another test on my reflexes - no response again - then he moved me onto my back, bum in the air, and told me I'd feel as if someone was pushing against the bottom of my back, but that it wouldn't be painful. He was right, it wasn't, but it was incredibly uncomfortable as he gave me a lumbar puncture. I was then propped up on some pillows and given this thick, white liquid to suck out of a long-spouted invalid's feeding device (still not able to move my neck, head, shoulders & legs). The doctor told my mum and sister that I didn't have polio, and they looked very relieved; he then added that he believed I might have meningitis, and that I would have to be kept in for observation.
Apparently the next day, when the results of the lumbar puncture were made available, the initial diagnosis of meningitis was rendered negative - it seemed I had somehow contracted this rather strange brain inflammation called viral encephalitis.
The next three weeks are a blank in my memory, as I apparently went into a typical, encephalitis induced sleep. I was told that during this sleep, I was given intramuscular injections on a daily basis of anti-viral drugs and tranquilisers. I woke up one bright, sunny morning, surrounded by tons of wrapped presents and coloured envelopes - a group of nurses and doctors were crowding around my bed, singing "Happy Birthday" to me. Lots of family were allowed to visit me that day, although they had to stay behind the glass isolation screen - I don't know why, as I wasn't infectious.
My stay in hospital wasn't a pleasant one, as I was only a little girl, and all this was beyond my understanding. I didn't get on at all with the rather vicious ward sister, and I just wanted to go home - pleading with my parents to take me away from this place, each time they visited. After all, I was better now wasn't I?
The day dawned, six weeks after my admission, when I was allowed to go home. I received a rather painful injection administered by the vicious ward sister, and my mum took me home in a taxi. The next few weeks were rather difficult, as I began to lose the use of my legs again, but our GP (the one who'd called on the day I was taken ill) informed me this was because I wasn't resting enough. Apparently the hospital had omitted to inform my mum that I had to take it very easy for a long time, otherwise too much activity - both mental and physical - could hamper or even erode my recovery...so, I spent the next couple of months being pushed around in a pushchair, which was not good for the street cred of a five-year-old!
I did recover though, and was able to start proper junior school in late October of 1959, at least a month later than all the other kids of my age......and, it was always declared a mystery as to how I managed to contract viral encephalitis in the first place, as I had done none of the things or been in any of the situations which the illness can arise from.
Well - fifty years on, I'm still here to tell the tale. I can honestly say that apart from some very very slight motor-malfunction (I was never able to run as fast as other kids) and an intolerance to certain noises, my encephalitis left me damage-free, which I am thankful for, as lots of other survivors of the illness aren't so lucky.
To summarise, if anybody is interested in this rather strange illness, the 1990 film "Awakenings", starring Robert De Niro and Robin Williams, was based on a true story from the 1920s where a young new doctor at a hospital gives the then newly-discovered drug L-Dopa to patients who had been left in a catatonic state after contracting encephalitis during an epidemic. I don't want to give any more away about the film for those who haven't seen it, but it is a great film - regardless of whether you are interested in the illness encephalitis or not.
Well that's all for now folks...thanks for reading this self-indulgent outpouring everybody, and I hope that if any of you have suffered encephalitis yourself or are close to someone who has done, that the recovery was as successful as mine.
Summary: A rare illness that even today in the 21st century, is not fully understood