ENCEPHALITIS CASES

Encephalitis Cases

Lisa

My name is Lisa and I am now 40 yrs old. I live on the southwest coast of England and in November 2005 I was admitted to hospital with severe head pain, I was photophobic and not properly conscious. I don't know how else to describe it. I was conscious but not conscious. Very strange. All I knew is that my head felt like it was going to burst.

For a few weeks prior to this I had flu like virus, but I didn't stay home from work. I'm quite a stubborn person and my philosophy in life is that if I am upright, breathing and with a heartbeat then I am at work.

The day I was admitted to the hospital I had woken up with severe pain in my head. When I got out of bed to go take some pain killers (which took me quite a long while to do), I noticed my back and neck were stiff and I thought perhaps I had slept in an awkward position.

I took several doses of painkillers throughout the day but the symptoms just became worse and worse. Eventually that evening at 7.15pm i telephoned NHS Direct to ask for some advice. I believe at this stage I was having trouble in speaking and the help line called an ambulance and within 20 mins i was at the A&E dept ( emergency room) at a hospital 8 miles away. I do remember the lady paramedic telling me that this was a lot of fuss over a migraine. I had never suffered from a migraine before so I just apologized to her. I needed help to walk at this stage.

The Doctor at the hospital also believed I had a migraine and gave me an injection in my leg to make it go away. He told me it would take about 30mins to work, after which my pain will have gone and I could go home. It didn't work. A short time later a male nurse was shaking me to rouse me, as I wasn't really with it. He put a line into my arm and I asked him what he was doing. He told me the Doctor thought I had an infection and that he was going to give me some painkillers and antibiotics. I don't remember anymore until I was taken into a room on a ward. The nurse helped me from my trolley into my bed. I was still dressed in my jeans and t-shirt and boots. In fact I was still wearing all this three days later if I remember correctly. My daughter who was 16 at the time had to help me undress.

They immediately began treating me with Acyclovir IV. I don't know about how this stuff affected anyone else but in my case it made my vein system collapse and they were constantly having to reset my line. It got to a point where I was so desperate for this to stop I offered to drink the Acyclovir just to stop the constant needles. After 5 days they repeated the lumbar puncture (spinal tap), which was done under sedation at my request because I couldn't stand any more torture. I was told the following day that I had HSV Encephalitis. I had never heard of it. I was also told that my white cell count was 2550 and they couldn't understand why i was still conscious.... well I did say I was stubborn didn't I? hehehe.

When I came round in recovery from the second lumbar puncture the pain in my head had gone. It seems removing that fluid removed the pressure from around my brain. It was at this point I realized I had problems in walking and talking and I was very slow in everything I did, although I found my appetite increased to ridiculous levels and I was always starving hungry. After 11 days I was sent home. It wasn't until I had no one to care for me, that I realized how Ill I was. I slept for 20 hours out of every 24. Not easy when you are a single parent.

I referred myself to my local social services, begging for help and also a charity called Headway Devon who helps me to this day. I have an outreach worker twice a week that is the most wonderful and patient person.

Because of my memory problems, my complex cognitive issues (ability to plan) and severe fatigue I will probably never go back to work but I am grateful I am alive.

Last year I got together with some of the brain injury unit team and some others with acquired brain injury, to write a leaflet about what its like to live with acquired brain injury, which is now available as a download in my local health authority area for new sufferers.

I keep pictures of my kids on my phone because I am scared to death that I will forget who they are. An irrational fear perhaps but very real to me

In April of 2008, I will be doing a tandem sky dive to raise money and awareness for brain injury charities here in the UK.

I still have problems with my speech especially when I am tired and I need to use a walking stick when I am outside. I also don't go out much now simply because I don't want to, I just don't seem to have the energy.

I hope what happened to me and the story of my recovery might inspire another sufferer not to give up. NEVER give up because no one knows what the future will hold.
My love goes out to all of you.

Lisa
Southwest, U.K.

Posted: February 1, 2008

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