I have been in unbearable pain recently and even with all my drugs being increased and being started on several new ones the pain wasn’t being controlled.
I was in hospital for pain management and the pain team diagnosed me with Central Pain Syndrome which is where the pain receptors in the brain are damaged and are receiving pain signals all mangled. It gets to a point where any sensation gets interpreted as excruciating agony so that even the lightest touch of the bed clothes is really painful. Apparently if you have been in really bad pain for ages the pain receptors can go into overload causing Central Pain Syndrome.
I had been suffering from daily migraines for 4 months and TN so badly I couldn’t eat because chewing and even swallowing anything thicker than soup set it off. The spasticity was so bad I couldn’t move at all because the spasms were so painful and I couldn’t straighten my hips or knees out so I was in bed in a recline postion with the bed raised under my knees.
I was on tegretol, gabapentin, baclofen, fentanyl patches, oxycodone, anti-depressants, valium plus my migraine meds. After a week in hospital the pain team decided to wheel out the big guns and put me on a ketamine infusion for three days.
Ketamine is more commonly known as horse tranquiliser and as a vet nurse I was slightly taken aback as we really do use it to anaethesize the horses!!! But at a much lower dose it is also a really effective pain killer. But the really interesting thing is that it works by not just stopping the pain during the infusion but by resetting the pain recepors in the brain and “turning the volume down” so that after the infusion is finished you don’t feel pain the same way for some months.
They ran the infusion for three days and OMG I know now why it is abused a street drug. It is sold illegally as an hallucinogenic and the doctors did warn me this was a side effect… YUCK!!! Why anyone wants to take drugs for fun is beyond me. Really, really unpleasant 3 days and I was very glad I was in hospital for it. Lots of Alice in Wonderland types of experiences with touches of paranoia and quite sinister and very horrid. Also extremely groggy and spaced out.
But the pain stopped and after the infusion was stopped at the end of the three days I am back home and pain free for the first time in literally months and months. I haven’t felt this well in years. If the pain starts to build back up which it probably will in a few months time, I can just go back in for another 3 days infusion.
This treatment is not done very often and is reserved for extreme pain only but I am really glad my neuro team decided to run it on me.
Has anyone else had this done? I’d love to hear of anyone else’s experience.