Encephalitis Cases
Allison
It has been several years since my ordeal with Viral Encephalitis.
On Christmas day, 2005, I woke up with a cold sore on my lip.
I was, in many ways, in the prime of my life. I was planning
a lavish summer wedding where I would marry (in my estimation)
the best man on the planet, and had finally landed what was
literally my dream job. Soon after the New Year, I woke up feeling
sick with symptoms similar, yet not at all like the flu. By
the very next day, I was well again expect for one exception
– inexplicable and unusual pangs of pain in my head when I would
stand up, or bend over. The pain was fleeting and seemingly
insignificant. I assumed since I had been working so hard with
my new job and maintaining a long distance relationship that
it was stress related. After visiting my fiancé in Utah, I returned
to Minnesota where I was teaching at a university. It had been
almost four weeks since Christmas. Since these pains were unusual,
I decided to see my physician. He was unavailable, so I met
with his assistant. After explaining my head pain as throbbing
but very, very brief, he told me that I was suffering from hormone
headaches. I found this unusual, but he assured me: at my age
(27), these hormone headaches were a normal part of life.
Two days later, I began the spring semester by greeting my classes
and handing out course syllabi. It was a Friday. Saturday morning,
I sat up in bed early in the day. I lived alone. As usual, I
felt the fleeting pain in my head. I had become accustomed to
feeling the pain when I would stand up, bend over, sit up –
it seemed like it was related to a change in blood pressure.
I was a very busy girl, but I found myself with an entirely
free schedule that day. I casually decided, while still in bed,
to go to the emergency room to have this pain checked out. Although
I had just been to a physician's assistant only three days earlier,
I would seek a second opinion. I felt silly for going to the
emergency room, and my biggest concern was that they would keep
me waiting there all day. I took my time and made a cup of tea,
then took a long, hot shower. I read my Emails, check out the
news, and printed out directions to the hospital. Obviously,
I did not feel that there was a real emergency at hand. I got
into my car, and got lost on the way to the hospital. I drove
and drove, but could not find it. I was still relatively new
to town. I saw a large church in the distance, and remembering
that the hospital had a Catholic affiliation. I drove towards
it. Behind the church was the hospital.
I went inside, again feeling a little foolish for what would
likely be a waste of my time and someone else's. I was surprised
when I was taken back moments after my arrival. I excused it
as being early on a Saturday, so things must be slow. After
talking to a nurse, a neurologist came out to examine me. I
thought this odd as well. I was having minor head pains. Did
I really need the attention of a neurologist? As he examined
me, he asked me question after question. "Do you feel dizzy?
Do you feel an altered state of consciousness?" I felt fine.
I felt absolutely, 100% fine. If I had stood up, I would have
been in pain, but only for two to four seconds. I thought the
doctor and his staff were overreacting as they examined me with
what seemed to be urgency. Suddenly, I blurted out: "I feel
weird." "What do you mean you feel weird?" my doctor asked.
"I feel weird" was the best I could offer. I placed my hand
on my chest and slid it down to my belly. "This whole area here...
it feels like a rush of adrenaline." That is the last thing
I remember. I had been at the hospital a mere fifteen minuets.
When I woke up, I was on a hospital gurney wearing a gown. Confused
and somewhat dazed, I looked to a nurse next to me. "Excuse
me nurse" I said calmly. "I do not remember putting on this
hospital gown." She brought my doctor over, and he told me that
during the examination, I had a grand mal seizure. They took
my down to have an MRI where I had another grand mal seizure.
I had been unconscious for about an hour. He told me that they
had performed and MRI and that he had detected a lesion on my
brain. He followed that up by telling my they were preparing
me for a lumbar puncture, also known as a spinal tap. They would
drain out the fluid in my spine to test it and see what might
be happening in my brain. I called family, and by the next morning,
my arthritic mother was by my bedside after an all night flight.
For five days, I became more and more sick. They could not diagnose
me. Each day I became more and more weak. I could not eat. In
fact, all I could do was sleep. Some days I slept nineteen hours
a day. I spent my 28th birthday, January 24th, unconscious with
the exception of a few hours. I was weak and confused. I lost
all peripheral vision because of the swelling in my brain. Although
I never verbalized it, I was sure that I was dying. A visiting
doctor came by my room to examine me. He told my mother: "I
think I know what is wrong with her. If it is I think it is,
it's very serious. I will start her on the medication. If it's
not what I think it is, this medication will not hurt her."
They started me that night on intravenous Acyclovir. They rushed
my blood to the mayo clinic in Minneapolis. The results came
back the next day: I had tested positive for Herpes Simplex
1 Viral Encephalitis. I never presented the usual symptoms of
Encephalitis. If I had decided to stay in my apartment that
day, there is no telling as to what my fate would have been.
I learned that the Herpes Virus had somehow entered my bloodstream.
The cold sore on Christmas day was either the first symptom
of the Encephalitis, or the ultimate cause. I know that my immune
system was so weak that the herpes virus could have entered
my blood stream from the cold sore alone.
Once I was diagnosed, I assumed they would be able to patch
me back up and send me on my way. Little did I realize that
recovery would be long, slow, and agonizing. It had been almost
three weeks and I had not eaten. I was constantly vomiting.
My mother could only look on from the couch in my room. She
slept there every night while I was there: one month. When I
was sent home, I was still not well. I wore a "machine" that
released a dosage on Acyclovir into my body every hour. I had
a nurse visit me every other day to change my bandages, etc.
I still couldn't eat, but I felt myself coming back. I felt
the illness backing down. I went back to work three weeks later,
still wearing the "machine." I was determined to get back to
my normal life. Once I was back to work, my mother went home
and I was alone again in Minnesota to conAllison what I had
been through.
I began research on Encephalitis, and only then did I learn
just how sick I was, and just how lucky I am. I learned that
many people die from Encephalitis (the mortality rate is roughly
35% with treatment, 70% without.) I read about how many survivors
suffer from a variety of life altering brain damage, either
resulting in physical disability (paralysis, etc.), personality
change (anger, depression, etc.), complete or partial memory
loss, or all of these. It was shocked to learn that more than
50% of all encephalitis survivors suffer from life-long disabilities.
I was blessed: I regained my peripheral vision, my memory was
intact, and I seemed to be the same girl I was before in regard
to personality. There is one daily reminder, however, that I
will take with me for the rest of my life. I had two lesions
on my brain in the right temporal lobe (doctors found that a
second lesion had appeared a week into my hospital stay). Those
open lesions would turn into scars, and because of their precise
(permanent) location in my brain, I am at a constant risk for
seizures. I take a high dosage of Keppra, and anti-seizure medication
twice a day. It allows me to live a normal life without the
worry of random seizures. However, there is one issue I will
at some point face with Keppra: it is lethal to a fetus, as
is all seizure medication. When the time comes to start a family,
I will have to go off of the medication and likely endure seizures
during the pregnancy.
This summer I got married, and moved to a new city. Life is
back to normal, but I often think about this illness, and how
blessed I am to be alive. It is a mystery as to how this all
happened, as the illness is so rare, especially to someone my
age. I am eager to talk with other Encephalitis survivors. Only
they can understand what I've experienced. To many of my friends,
I think it seems like I had a terrible flu. The only one who
saw me though it all was my mother who never left my side.
AllisonMinnesota, U.S.A.  Posted: January 2006 |
