Writing this

As I edited my notes for this blog I started changing the times listed. I thought it was a bit ridiculous that I had listed times like 2.26pm and 1.17pm. I started rounding the minutes to the closest 15 minutes but when I thought about it I changed it back again. As this is how I experienced it. For some reason I had decided at the time to record it like that, maybe it was because I had lost the perception to approximate and generalise. I saw everything in black and white. Friends and family said that I spoke more abruptly than normal.

I also struggled to decide on whether I was writing in past or present tense, after advice I decided to write it as it was in my diary entries.

I met a neighbour who says she has friends who have gone through this and the post drug fog is not abnormal.

Have you had or are you thinking of having a ketamine infusion?

As my aim with this blog is to make more information available about this treatment from the patient's point of view I am very interested in hearing from other people.

A friend of mine has had the infusion twice and she said she could identify with a lot of things I wrote about. She said she experienced the same frustrations and also developed a stutter. She told me that she also worked hard to appear normal and as if she was coping when her family came to visit.

If you have had a ketamine infusion and would like to contribute how it was for you I would like to hear from you. If you have supported someone else going though the infusion and would like to write something to be included in this blog that would be appreciated. If you are thinking about, or planning on having an infusion and want to add your thoughts on the subject that would be great.

You can email me at ketaminekaren@gmail.com

9/10/18 - So where am I today?

The first word that comes into mind is; struggling. I am in a lot of pain and taking lot's of pain medication pills. I have an appointment next week with pain specialist Raph, surely there is a better way of me coping when even typing hurts.

I read something today that resonated loudly with me:

Internalising and soldiering on about issues that affect your life is not a sign of strength but a sign of weakness. Face up to it.

Ouch!

Another Patient’s Perspective - Ketamine: What is it all about?

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

http://painmatrix.com.au/procedures/ketamine-infusion  

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:

www.rosemaryeagle.com

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.