I have been having subcutaneous
Ketamine infusions in hospital every 3 months for 5 years now. The infusions
are usually run over a 7 day period and are funded by my private health
insurance.
I remember my first infusion clearly.
The main reason for having it was that despite having a spinal cord stimulator
implanted 6 months previously I was still unable to weight bear at all on my
bad foot due to the resulting severe electric shooting pains. These shooting
pains often continued for many hours and sometimes ran into several days and
nights with little respite. Getting around on one foot with two crutches was
becoming harder so Ketamine was suggested by my pain management specialist.
I approached my first infusion with a
neutral mind set and no high expectations of any miracles, I knew it may or may
not help. I had read ‘horror’ stories of people having hallucinations while
having an infusion and I had discussed this with my doctor who reassured me
this would not happen as he would be starting me on a very low dose and
monitoring me carefully. So I had no fear and complete faith in my doctor. Home
was a 4 hour round trip away so visits
from my husband would be too difficult. I was on my own but we kept in touch
most days by phone or email.
The Ketamine made me a bit spaced out
but only during the first few days while the dose was being increased. My body
then adjusted and by the third day I was feeling pretty good. Nausea was a side
effect during the first few days and this responded well to anti-nausea
medications.
A subcutaneous Ketamine infusion is
slowly administered via a long thin flexible tube attached to a small butterfly
needle that is inserted into your belly and taped in place, it does not hurt
but it needs to be re-sited every two days or so as the area usually becomes a
bit red and swollen, the nurses give you cortisone cream to help with this and
it is not a huge bother. I wear a small sling bag to carry my portable pump
around as I need to have my hands free for my crutches. The ketamine syringe in
the pump pack is changed every 24 hours or less and the dose raised or lowered
as needed by the nurses. Also if the side effects get too much they can pause
the pump and this returns you to normal very fast. For example another side
effect it raised blood pressure and the nurses check your blood pressure
regularly to make sure it isn’t getting too high.
To read more about subcutaneous
Ketamine infusions go to The Pain Matrix website
I take my mini scooter to hospital
which gives me a way of going down to the cafe or shops on level 1. The pain
management ward is on level 5 with the most amazing views, this has become a
source of inspiration for my art work.
My first four years of infusions were
always combined with visits from an Occupational Therapist and Physiotherapist,
both knowledgeable about CRPS. I developed strong bonds with both these people
and gained a lot of knowledge about how to manage my life better.
Since Epworth Geelong opened a few
years ago the anxiety about a having a private room is not relevant as all the
rooms are single. My pain clinic is now based at Epworth and they have set up
an area for pain patients, most of the nurses who work there are experienced in
looking after pain patients. It is usually pretty good at Epworth.
I agree with Karen about Ketamine
being the drug of clarity, I always have wonderful thoughts and insights and
keep a hand written journal that I only use when having Ketamine.
The other thing that sometimes happens
during my infusions is that I can experience some amazing images just as I am
about to fall sleep (google ‘rapid images pre - sleep’), these can be quite
magical. I sometimes make drawings of these images the next day and later
translate them into some of my artwork when I am home. However one night the
images were not so pleasant but I discovered that I was able to open my eyes
and they would go away, then I discovered that I could change the ugly images
to beautiful pictures if I started practicing meditation, I discovered I had
control over the images.
During one of my infusions my doctor
tried taking my dose up higher to 500mg to find out what my maximum tolerance
level was. However, I started experiencing some worrying side effects; I couldn’t
focus when reading, I kept picking up the wrong cutlery at meal times which I
thought was quite funny and my blood pressure shot up, not so funny! The dose
was immediately lowered of course and the side effects quickly disappeared.
My advice to anyone contemplating
having a Ketamine infusion is to approach it with a neutral mindset, do not be
afraid, and discuss any concerns with your doctor prior to the infusion. Make
sure the nurses keep you informed about the dosage and that you tell them of
any side effects or if you become frightened.
What I haven’t said yet is that during
my first infusion I was able to start weight bearing again on my bad foot, I
still used crutches but life became much easier. The Ketamine usually has a
carry-over effect for me of several weeks but I have to pace my activities
carefully as Ketamine does not ‘immunize’ you against bad pain flares, it does
however lower the amount and level of pain I experience significantly. For me
it is worth a week in hospital, 4 times a year.
Rosemary Eagle
To see some of my art about pain go to
my art site:
or
To read more about CRPS and my lived
pain experiences go to my CRPS awareness site
www.crps247.com
where you can sign up for new Blog notifications in the Blog section.
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