It’s been over two weeks since I had my first single day ketamine infusion to help with the pain of CRPS and I think that I finally have a decent understanding of how it has effected my body…
Very, very well!
I started seeing a new pain specialist at the end of last year, who listened to my long, troubled story of failed pain management before validating my belief that, years before, I’d been misdiagnosed as having an allergy to ketamine. Thank goodness for that!
In October last year and February this year, I went into hospital for 5 day, subcutaneous ketamine infusions. Both were successful at lowering my pain levels and allowing me to increase my ability to function on a daily basis. If you wish, you can read about the experiences of these infusions here and here.
There are a couple of drawbacks to enduring a 5-day ketamine infusion. Firstly, that’s 5 days in hospital and with the plastic covered mattresses, 24 hour noise and the need for regular checks from nurses. Hospital is not a particularly relaxing environment. Secondly, it’s 5 days on a mind altering drug, which is like some sort of medically sanctioned bender and a 5 day bender of any sort is going to take some recovery time to get over.
Both 5 day infusions took about a week of almost constant rest and symptom management afterward before I could appreciate the benefits. This time involved very heavy fatigue, an inability to form useful thoughts, a lot of twitching and many sudden attacks of sweating. Between the preparation, actual infusion and recovery, each 5 day ketamine infusion involved 2-3 weeks of time spent away from my usual activities.
Which was all totally worth it. A break from CRPS pain and symptoms is a rare thing to experience and is worth every effort that it takes to make that happen, however, what if the same results could be achieved with less fallout?
With this in mind, I quickly agreed when my doctor suggested that I try a single day infusion to see how I coped with that.
I showed up at the hospital at about 8am and after a couple of hours of being organised by nurses, I found myself with a bag of ketamine slowly dripping into my belly. Just not quite as slowly as during the longer infusions, which began at a dose of 2.5mg of ketamine per hour that was increased regularly over the 5 days. With only 10 hours to absorb the pain relieving goodness, the ketamine dripped in at 10mg an hour.
It only took a few hours for my pain levels to drop significantly and for my brain levels to drift away into la la land. I spent most of the time snoozing and listening to music. I was disconnected at about 7pm and then went home at 8pm.
Coming home with a brain that felt like it was floating outside my head was a strange experience. I got nauseous during the 5 minute car ride and promptly threw up as soon as I got home, after which I felt quite wonderful. My pain was super low and I felt like I was dreaming. I quickly got myself to bed to sleep off the rest of the weirdness.
The infusion took place on a Friday. On Sunday evening, I was feeling almost as well as I had a week after the 5 day infusions. Pain levels stayed low, moving became easier and the post ketamine fatigue and twitches were barely bothersome at all. By Monday morning, I was ready to continue my regular routine of physical rehabilitation and chores, all with less pain than I am accustomed to.
The most wonderful thing about a single day ketamine infusion is that I’ve been able to continue living without feeling like a huge chunk of my life has just been spent in hospital and recovery, yet I have pain relief that is on par with that sustained after longer infusions. It’s such a good result that I have trouble believing it’s real, I’m just doing my best to enjoy the pain relief and keep increasing my strength while it lasts.
Last weekend, my prince and I got out of town and attended a friend’s wedding in the Victorian high country. It was wonderful! The cold mountain air agreed with me and I hardly found myself hindered by pain at all, other than during the drive up when CRPS got a bit angry about how much a car vibrates and that I was insisting on being in one for three hours.
At the wedding, I was able to stand and drink and chat and dance and drink! It was wonderful! I felt so delightfully normal. Pain levels were higher the next day, but not off the charts, I was still able to keep moving and functioning.
After returning home, I had to spend a few days resting off the aches and pains of the dance floor. I was pleasantly surprised to find that a little bit of rest was all it took to have my pain levels lower back down again and by midweek, I was back in full swing on the exercise bike, walking and increasing my strength.
My mind, however, refused to participate. The strangest thing about last week was that even though I was physically able to more than I had been in weeks, I was mentally able to do very little. I…just…couldn’t…concentrate. Instead, I did my best to focus on the physical stuff and assumed that my thoughts would return when they were ready.
Which, they did. At least I think they did. Look, either my mind is working again or coffee has figured out how to actually puppet people instead of just powering them and we are all doomed to a future of coffee-borgs. Eh…I’m pretty happy with either of those explanations.
I’m so happy to be in less pain than pre-infusion that I’m pretty much happy all the time. It still feels strange. It feels strange to be able to keep going, keep moving and keep building a healthier body for future CRPS battles. It feels strange to be able to exercise until I am actually sweating from working hard rather than sweating for no reason other than nervous system malfunction. It feels strange to be tired from actually doing things.
It’s a happy strange, so I’ll just be over here, rolling with it. How long will it last? Who knows. I’m just so glad that the shorter ketamine infusion worked and that I can now look forward to pain relief without all of that overnight in hospital business. Hurrah!
Love & Sweat beads,