Ketamine infusion

A couple of weeks ago I had my second ketamine infusion. I know you're probably thinking 'ketamine, isn't that the horse tranquilliser drug?' And yes, you'd be right. But what the headlines in the tabloids don't tell you is that it originally started out as an anesthetic for humans before its use in the vetinary industry. After the horse question I am usually then asked "is it safe?" And the answer is...I don't know. 

So what do I know about it? 

▪️It's a class B drug that has a history of abuse due to its hallucinogenic qualities. ▪️It's used as an anesthetic as it causes a loss of feeling in the body and paralysis of the muscles. 

▪️Long term use can cause problems with the bladder that can result in it being removed. 

▪️All medicines have to be licensed before being given to patients and ketamine is licensed as an anaesthetic so technically isn't licensed for pain relief. 

▪️It's most often used as a painkiller in palliative (end of life) care. 

▪️It can be taken orally or by injection. 

So after reading all that the next question you might have is 'why on earth am I being given this drug?' I'm not dying (thank God!) and although I might look well I actually spend every day in incredible amounts of pain. After all the surgeries I've had on my bowels I've been left incontinent and suffering from debilitating spasms in my j-pouch and small intestine. I have to be very careful in what I eat and if I accidentally eat something I shouldn't (or have one of those 'sod it, I fancy it, I will suffer the consequences' moments) my stomach becomes swollen, very sensitive to touch and incredibly painful. To combat these issues I have to take huge amounts of medication including oral morphine, fentanyl patches and countless other opiates just to function each day. But even after taking over 35 tablets a day it doesn't leave me pain free. The only way I can describe what it's like to live in this amount of pain is to imagine the pain like a radio that never switchs off. Some days it's quieter than others; sometimes it can be cranked up to the max. But it never ever goes away no matter what you do. 

The problem with taking all the medications that I take is that they all have side effects. Horrible side effects. Hot sweats, brain fog, forgetfulness, being unable to drive some days, changes to the menstrual cycle to name just a few. The idea of having the ketamine infusions is to allow me to gradually reduce the other medication I'm taking which should in turn reduce the side effects that I'm suffering from. 

One of the problems I've faced with the use of opiates to control pain is that even though you increase the dose the pain doesn't necessarily decrease. This is due to the fact that the body becomes used to the dose and you then need to take more and more to get the same effect. And the more you take the worse the side effects become. At one of the LINK pain management sessions the pain nurse told us that once you reach a certain dose then the opiates actually start to actually cause pain in the body. When she was explaininv this to the group and talked about the muscles spasms, headaches and brain fog that occur as a result of taking ridiculously high doses of opiates it was like a light bulb went off. I realised that she was describing me. And I was positively terrified when she told me that the amount of medication I was currently taking was actually enough to stop me breathing. The only reason I wasn't dead was because the dose had increased bit by bit so I had become tolerant to the amount of medication in my system. In that very moment I vowed that I would begin to reduce my meds to a safer level and try to reclaim my life. This will be a very long, slow process that will be managed by my GP and the pain team at UCLH in London. It's scary because I know that I'm completely dependant on the meds and that I will experience some withdrawal symptoms as I initially make a reduction but then I'm told that the body then gets used to the lower dose in the same way it got used to the higher dose. 

So that's the plan. Continue with the ketamine infusions, reduce the opiates and attenpt to claw back my life. I must make sure that when I have my next ketamine infusion they don't give me the sedative with it. At UCLH they just give you the infusion and after I had it I was able to travel home on the train with a friend (you have to be accompanied home and have someone with you for the next 24 hours to make sure you don't stop breathing.) But I had this recent infusion in Nottingham and they administer it with a sedative. When I asked them why I was told "its to stop you from having bad dreams" but when I thought about it afterwards I reckon it's to stop you from tripping out in the clinic! It had taken months to even get the infusion done in Nottingham as there was ridiculous amounts of red tape to get it switched from the other hospital. I know there has to be necessary precautions in place as its a dangerous drug but things like UCLH wrote directly to the consultant  in the pain team in Nottingham but it should have gone via the GP first and because it hasn't they couldn't accept the request. In total it took about 6 months to get it all sorted. 

Anyway, back to the sedative being used with the ketamine. Apparently I didn't react too well to it and the infusion had to be stopped a number of times. So instead of it taking 1 hour it took 3. And when it was time to go home I could barely stand, let alone walk. If anyone had seen me and didn't know better they would have thought that I had drank a bottle of vodka! My sister in law brought me home and when I got home I was soon put to bed by her and Bestie (who had come to stay for the week with kids as it was half term. After it taking so long to organise I couldn't turn the appointment down and so she was left at my house that day looking after 6 kids!!) I didn't surface until the following day and I felt like I had the hangover from hell. I felt like I was in laa laa land for the two days after the infusion and I'm sure it was as a result of the sedative not the ketamine. I'm going to try and find out what dose they gave me and see whether it was the same as I had before or bigger because that could account for the effect it had on me. But regardless I'm due to have another infusion in 3-4 months time. I do worry that my body will become tolerant to the ketamine and then where do we go then? I could live for 30, 40 or even 50 years (if I'm unlucky) and if I exhaust everything now how on earth will I cope in my old age? It's something that I do worry about but the ketamine makes the pain just about bearable which means I can actually enjoy life rather than just survive. It means that the kids have a mum that's able to do stuff with them rather than one that's always in bed and it means that Hubby has a wife and can be a husband rather than a carer. So while the kids are the age they are I will continue with the infusions. And if the day comes that they stop working well, I will just cross that bridge when I come to it. 

NB x