ENCEPHALITIS CASES - Marguerite

Encephalitis Cases

Marguerite

My name is Marguerite, I'm 39 yo and I had meningio encephalitis in November 2008. I live in Lusaka, Zambia and there is not a lot of up-to-date equipment here so in some ways I am lucky to be alive.

It all started about a week before I was definitively diagnosed. I went to the GP with what I thought was a bit of a tummy bug and slight nausea. He gave me some pro-biotic powder and told me to drink lots of fluids and take it easy. A couple of days later over the weekend I had been feeling more and more unsteady and feverish, and finally on the Sunday I was walking through the supermarket with a friend and found that I had to sit down as I was shivery and faint. She took me home and at that point I was convinced I had malaria.

First thing on the Monday morning I took myself into the Doctors' surgery and took a malaria test (negative) and was put on anti-malarial medication and sent home for a few days. All of this time I had not yet had a headache, perhaps the paracetamol I was on to combat the fever masked it but I had not yet reached that stage. It was only on the third day that I began to get a headache in the afternoon that built and built until the evening when I became out of my mind with the pain of it. I knocked on my neighbors' door in tears and asked them to take me to the Doctors' surgery which had an after hours doctor on call. By this time I had the most unimaginable headache as if the top of my head was being screwed on tightly, I cant even begin to describe the pain and spasms of pain running down into my back when I moved my head forward. The Doctor on call gave me a shot of pethidine (a very strong medication) which dimmed the pain but didn't take it away, and eventually sent home with instructions to come back to the adjoining clinic in the morning, which I did.

There followed several days of pain and antibiotic meds being administered by drip and Doctors coming in to ask me questions and make me try to curl into a ball and so-forth. These days passed in a haze. They said I had suspected meningitis but their CAT scan equipment was not working and I was advised (rightly so apparently) not to allow a lumbar puncture without one. I was told I would have to be medi-vacced by plane to a hospital in Johannesburg, South Africa for final diagnosis and treatment.

Thank goodness my Medical Aid eventually facilitated this and off I went - the journey on the plane was pretty awful as the cabin pressure hurt my head something terrible. However at that point they were pumping me full of pain meds and I felt as if I was floating, a very weird experience. Eventually in Johannesburg they correctly diagnosed me with an MRI and Lumbar puncture and I was put in a "tank" in an acute care unit complete with drips containing antiviral cocktails and antibiotics, and lines running from my chest to EEG units. They initially feared it was the contagious form of bacterial meningitis. I was very lucky to have a friend come with me as I didn't have the first clue what was going on much of the time.

I spent 6 days in acute care before they believed I was not contagious and moved me into the normal wards and then out to recuperate with friends and family in South Africa before a 2 week neurological check-up. My hospital neurosurgeon told me I had viral encephalitis and it could have been spread through any of the thousands of ways a virus can travel.

I spent those first two weeks out of hospital sleeping an awful lot and feeling bone-tired. I was (and still am) sensitive to light, noise, heat, cold, and strong smells and tastes. These extremes could easily bring on a headache and if the headache was bad, a bout of vomiting. When tired and needing to sleep I would stutter and forget things and repeat myself. I also felt very emotional with my emotions seemingly lying just below the surface, and was easily brought to tears. I wasn't told that I may have these symptoms by the hospital neurosurgeon and so sometimes they were pretty scary. When I went for my check-up with another neurosurgeon, he told me I had actually had meningo encephalitis and that explained these symptoms. He said there was really nothing more to do except make sure I slept a lot as I was not getting proper REM sleep and needed to get as much sleep as possible in order for my brain to repair itself.

I am now home and back at work, and am MUCH better than I was, although I am not really better 100%. I still struggle with symptoms when tired; and noise, light and heat in particular are a problem. Its only if I start to stutter that they realize there is something wrong and by the time I am doing that I urgently need to lie down and sleep. Driving is a bit of a problem, it is as if I've lost my innate ability to drive and have to think about every thing I do in advance. Its a bit like being really drunk and everyone is driving past you at triple the speed. Some-times I just push myself without realizing how quickly I have tired and then I have to quickly find a way to take a nap. The neurosurgeon has told me it may take six months or more to get back to normal provided I don't push myself too much and continue to try to sleep as much as possible. It really is the best medicine.

Marguerite
Lusaka, Zambia

Posted: February 11, 2009

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