Compiled by Elaine Dowell, Encephalitis Society
After the acute stage of HSE (herpes simplex encephalitis) I was left with damage
to the filtering mechanism between the ear and the brain. This in very simple
terms means that initially I could not filter out any sound around me. I found
it very difficult to hold a conversation if there was music on or the television
as I couldn't filter out the other sounds. This is something that your ears
normally do automatically.
In the early stages I avoided going anywhere where this would be a problem i.e.
places that had background noise or music, so basically most places!!!!! As
time passed and my concentration improved it became less of a problem. However
it still took more time, effort and concentration to have conversations especially
if the surrounding sound was loud and I was tired.
Nobody addressed this problem in the initial stages but six months down the line
my consultant referred me to a hearing specialist, who in turn sent me for a hearing
test. The results of that were fine, he said that the problem was not the
hearing, but managing the sound I hear. Managing sound seemed a bizarre idea
to me. The hearing specialist did say that the virus infection can knock your
whole system off balance and although it may compensate a little itself in time
he was referring me to a Hearing Therapist to help me manage the problem.
When I eventually went to see the therapist (about 18 months after HSE) she said
that she had received this referral from the hearing specialist, and understood
that I was suffering from Hypercusis. Suddenly this hearing 'thing' had a
name and it gave me a shock. I hadn't been told that it had a name, up until now
it seemed that what was a big problem to me had been shrugged off.
The Hearing therapist gave me what looked like hearing aids that went into the ear
and sent a ' white noise' into the ear to reach the nerve endings to
tell them to calm down a little bit. I found this a little hard to cope with
and was very conscious of the idea that people would think I was deaf and start
shouting at me. The therapist was very understanding of this and said that
she understood and ordered for me some similar aids that fit straight in the ear
and do the same job. Other suggestions that she gave were relaxation techniques
and a sound ball which has all different sounds you can listen to and it is to help
the filtering system realise that sound can be pleasant.
What Do I Think Of It?
Initially I was sceptical about the idea. However some of the advice has been
helpful and the confirmation that I am not going mad and the problem is real and
not a figment of my imagination has helped. As I'm sure happens all the time
during the recovery period, you are usually dealing with people that haven't
got a clue what you are talking about. Although the therapist hadn't treated
anyone recovering from Encephalitis before, she had treated the condition, she always
listened and seemed to understand. These people in my experience had been
few and far between.
Laura Healy
Last modified: October 2009