My name is Ginny and I live in Spruce Head, Maine. That's a small village in the heart
of lobster country. I'm 49 years old, divorced, and have two grown children, a son and
a daughter. I was diagnosed with HSE on September 17, 2000. I've been out of
the hospital for two weeks.
For about two weeks prior to being admitted to the hospital, I had episodes of a gurgling
feeling in each of my temples. Each would last only seconds, but when it stopped,
I felt confused and somewhat disoriented. At first, I thought this might be due to
stress, as I work about 50 - 60 hours a week as the director of a leading national
social services agency. Stress is my middle name! When the episodes continued, and
in fact, worsened, I went to see my doctor thinking that this might be a new kind of
migraine, or cluster headache, as I have had both since I was a child. She thought it
might be temporal arteritis and ordered a SED rate test. This was on Thursday.
On Saturday I awoke with what I thought might develop into a migraine, but it never
really did. The pain was less severe and I can't remember that I experienced a real
aura that day. By evening, however, the pain worsened, and my speech was thick and
slurred, my mother who lives with me tells me. She didn't mention it that night
thinking that I would just think that she was crazy. I took some more pain killers
and went to bed as usual. Around 2:00 a.m., I couldn't sleep so I came down stairs to
lie on the sofa and listen to the TV.
I lay on the sofa all day on Sunday. Though I couldn't eat or drink anything,
I continued to throw up. By that evening, I couldn't get off the sofa. I was drifting in
and out of consciousness by the time that the ambulance arrived. My brother tells me that
I asked him four times in ten minutes what time it was. I don't remember anything until
Tuesday afternoon. I'm told that I couldn't speak and the first thought was that the
normal pressure hydrocephalus that I have, had gotten worse. Tests showed that not to
be the case. By Tuesday, the working diagnosis was menangitis, but the speech problems
did not fit with that, so my doctor decided to test for encephalitis. Sure enough, the
herpes simplex I virus was there, alive and very active. They started IV treatments of
acyclovir immediately and by Thursday I was already starting to feel better.
After a week and half in the hospital, I was transferred to a skilled nursing unit at
a nearby nursing home. While there, the IV treatments continued. Between treatments,
I was permitted to leave the unit and go out to lunch, shopping, my office, etc. for two
hours at a time, and to even drive my car. I was discharged from the SNF after anothe
week and a half.
Last week, I worked just a couple of hours a day. More than that and I was just
unproductive and disruptive to my office's routines. This week, I have returned full
time, but am finding that it is too much and will be shortening my days again starting
tomorrow.
I have some memory loss and find that I sometimes stumble over words. My neck is still
stiff and my head aches a little in the temple area, and I'm VERY tired. Other than
these, I seem to have escaped any effects of the disease. My challenge now, is in
knowing what to expect of myself during the recovery period. I'll update my story when
more time has passed. So far, so good.