My experience of long term post herpetic neuralgia
I have suffered with post herpetic neuralgia since February 2001 when
I contracted a bad case of
shingles. The shingles affected my left hand side; I had a rash from
groin to hip which also
became infected. I was 45 when I contracted the disease.
The pain at the beginning was so severe that I could not function
beyond it. It took up all my
resources just to get through the day. One week after I contracted the
initial shingles disease
my mother had a stroke. She died within three weeks. I do not know if my
emotional pain had
anything to do with my subsequent long term neuralgia.
My doctor did eventually prescribe
famciclovir, but I think it was too late to prevent the phn. When the
shingles was ended my doctor
also prescribed high strength Vitamin B12.
It was not until three months had passed without any great lessening of my
pain that my doctor
referred me to a specialist.
This doctor prescribed amytriptyline and gabapentin which I then
continued to take for the next
few years, along with 7.5mg dose zopiclone pills (later reduced to
3.75mg)when I really could
not get to sleep.
I developed an intolerance to the gabapentin eventually. Itchy skin
rashes
which burned, expecially when I went out in the sun.
A further specialist at the pain clinic I was referred to tried a couple
of different drugs and
I eventually found that clonazepam provided the same relief as the
gabapentin but without the
rashes. I am now developing an intolerance to this as well though.
I continue to take amytriptyline and have started cutting my
clonazepam pills in half to try
and cut down. Although the skin rashes have reduced the pain relief is
also lessened and,
whereas the evening and nightime (I suppose when my mind was less absorbed
with work, etc)
used to be my worst times, I am now finding myself increasingly distracted
by the pain during
the daytime.
I have a TENS machine which I often hook up to in the evenings but
all I am really doing is
swopping one sort of pain for another. I have to turn up the dial quite
high for it to give me
any sort of relief.
I don't know what my prognosis is. I sometimes think that the pills
I take must be shortening
my life but that I wouldn't really have a life without them.
I have been taking this cocktail of medication for five years now. I
try different
combinations and strengths. I try to get to a balance of maximum pain
relief for minimum pill
taking.
I have not been back to the pain relief clinic for over a year and my
pills are on repeat
prescription so I haven't seen my doctor either. Mentally I cope, just. I
don't think that my
pain has lessened that much since the first year, I have just got used to
it - what else can
I do.
If there are ever any new drugs or treatments which anyone wants to
trial then I am more than
willing to be a guinea pig. I've got nothing to lose.
Competing interests:
None declared
Competing interests:
No competing interests
09 July 2005
Sandra D Wright
local government finance officer
Walsall Metropolitan Borough Council, Finance Section, Council House, Walsall, West Midlands, WS1
Rapid Response:
My experience of long term post herpetic neuralgia
I have suffered with post herpetic neuralgia since February 2001 when
I contracted a bad case of
shingles. The shingles affected my left hand side; I had a rash from
groin to hip which also
became infected. I was 45 when I contracted the disease.
The pain at the beginning was so severe that I could not function
beyond it. It took up all my
resources just to get through the day. One week after I contracted the
initial shingles disease
my mother had a stroke. She died within three weeks. I do not know if my
emotional pain had
anything to do with my subsequent long term neuralgia.
My doctor did eventually prescribe
famciclovir, but I think it was too late to prevent the phn. When the
shingles was ended my doctor
also prescribed high strength Vitamin B12.
It was not until three months had passed without any great lessening of my
pain that my doctor
referred me to a specialist.
This doctor prescribed amytriptyline and gabapentin which I then
continued to take for the next
few years, along with 7.5mg dose zopiclone pills (later reduced to
3.75mg)when I really could
not get to sleep.
I developed an intolerance to the gabapentin eventually. Itchy skin
rashes
which burned, expecially when I went out in the sun.
A further specialist at the pain clinic I was referred to tried a couple
of different drugs and
I eventually found that clonazepam provided the same relief as the
gabapentin but without the
rashes. I am now developing an intolerance to this as well though.
I continue to take amytriptyline and have started cutting my
clonazepam pills in half to try
and cut down. Although the skin rashes have reduced the pain relief is
also lessened and,
whereas the evening and nightime (I suppose when my mind was less absorbed
with work, etc)
used to be my worst times, I am now finding myself increasingly distracted
by the pain during
the daytime.
I have a TENS machine which I often hook up to in the evenings but
all I am really doing is
swopping one sort of pain for another. I have to turn up the dial quite
high for it to give me
any sort of relief.
I don't know what my prognosis is. I sometimes think that the pills
I take must be shortening
my life but that I wouldn't really have a life without them.
I have been taking this cocktail of medication for five years now. I
try different
combinations and strengths. I try to get to a balance of maximum pain
relief for minimum pill
taking.
I have not been back to the pain relief clinic for over a year and my
pills are on repeat
prescription so I haven't seen my doctor either. Mentally I cope, just. I
don't think that my
pain has lessened that much since the first year, I have just got used to
it - what else can
I do.
If there are ever any new drugs or treatments which anyone wants to
trial then I am more than
willing to be a guinea pig. I've got nothing to lose.
Competing interests:
None declared
Competing interests: No competing interests