Part One: Pain

Pain management is a topic I feel as qualified to write about as any layperson could. Since coming out of an induced coma in the Intensive Care Unit (ICU) late in 2012, and being taught to use a Patient Controlled Administration (PCA) machine to deliver intravenous fentanyl, managing pain has been one the primary factors influencing my day-to-day life. Throughout the first few months in hospital there was not room for much more in my attention span other than tolerating the vast array of pain signals my brain was receiving. The Acute Pain Services (APS) team were extremely accommodating during this period, tirelessly trying out new combinations of drugs to see what would work best together in mitigating my pain. To have gone through my time in hospital without the service they provided is unthinkable.

Before I go any further, it is necessary to provide a short glossary of some key terms.

Opioid: A class of drugs that includes opiates (drugs derived from opium) and other drugs that act upon the same receptors. Well-known examples include morphine, heroin, codeine and our body’s own endorphins. Much like heroin, the opioids used to treat pain have a very high potential for dependence and addiction, and lots of other undesirable side-effects. In spite of this, they are still generally the gold standard for severe pain.

Acute Pain: Pain that is transitory and relatively quick to resolve. The exact time of distinction between acute pain and chronic pain varies between researchers.

Chronic Pain: Pain that lasts for an extended period of time. Chronic pain can persist even after the underlying cause has been remedied.

Breakthrough Pain: Pain that comes on suddenly, often with great severity, and is largely unaffected by a patient’s regular pain medication.

Neuropathic Pain: Pain caused by damage to the nervous system. Neuropathic pain often has a strong electrical component to it.

Half-Life: The amount of time it takes your body to reduce the active levels of a drug in your blood by half. The longer the half-life, the longer the effects last.

Route of Administration (ROA): The manner by which a drug enters the body. This affects how much of the drug is actually absorbed into the bloodstream. Examples include oral, inhaled, intravenous (injected directly into the bloodstream), intramuscular (injected into muscle) and sublingual (under the tongue).

Maximally Medicated

In various doses and combinations — always with an opioid workhorse at the centre of things — these are the primary drugs I used to help control pain while in hospital:

Fentanyl

Fentanyl is the most potent opioid commonly used for pain management in humans. It is 50-100 times stronger than morphine, with doses in the microgram range, and it has a very short half-life, so it needs constant re-dosing. This was my primary painkiller for roughly three months after the accident, and I also used it for a few days after all major operations.

I mainly took fentanyl intravenously with the help of a PCA machine. This allowed me to press a button whenever I needed pain relief, with a minimum of five minutes between doses. I also received a few intramuscular injections when the PCA machine had to be disconnected for me to have scans. I went through thousands of micrograms a day during my peak usage, receiving 80 micrograms with each push, and there was a point where I was using the maximum daily amount the doctors considered safe.

Methadone

Methadone is a very strong opioid that is 2.5-5 times more potent than morphine. Its strength and long half-life makes it useful in preventing heroin withdrawals, but it is also commonly used as a long-lasting analgesic to manage chronic pain. In the first quarter of 2013, once I stopped using fentanyl, methadone became the backbone of my pain management regime.

I took methadone orally, and my highest daily dose was 50mg, with 25mg taken morning and night. At the end of 2013, when I returned home from inpatient rehabilitation, I took two 10mg doses, and by the second quarter of 2016, when I finally had my hip replaced, it was 2.5mg in the morning and 5mg at night. I ceased taking methadone in September of 2016, and all up I was on it for around three-and-a-half years.

Oxycodone

Oxycodone is a strong opioid that is 1.5 times more potent than morphine. It is commonly prescribed for moderately severe acute or chronic pain, and for breakthrough pain in chronic pain patients. I started using oxycodone at the same time as methadone, to manage any pain the methadone could not cover. I took it orally in both instant and slow-release forms, and at the peak I was using well over 100mg a day. I might have even used over 200mg on a few occasions.

In hospital I usually took 20mg of instant-release at a time. Mostly this was with a minimum of two hours between doses, but I think there was a time when I could take it hourly. At the end of 2013 I was down to about 50mg a day, and by the second quarter of 2016 it was usually just 2.5mg at lunch. This was with a very restricted lifestyle though, and if I went out I needed an extra 5-40mg to keep things manageable. I ceased taking oxycodone in August of 2016, after about three-and-a-half years on the drug.

Ketamine

Ketamine is known in pop-culture for its use as a horse tranquilliser, but it is also still used in human medicine in certain circumstances. I was given ketamine, I think intramuscularly, in large amounts during the first week or so after coming out of a coma. While it worked well, constantly being on ketamine in an ICU started to tear away at my sanity, and I had it discontinued. I am unsure of the exact dose, but it was interplanetary at times.

I later used smaller amounts of ketamine sublingually for around two months, receiving at the most three 10mg doses ten minutes apart, four times a day. It worked well in this context, and had less psychoactive effects than before, but there were still occasional sinister undertones.

Nitrous Oxide

Popularly known as laughing gas, nitrous oxide is commonly used in dentistry. Although it is very short-lasting, it is still exceptionally useful in some situations. I used nitrous oxide for around two months in combination with ketamine to deal with extreme-but-brief bouts of breakthrough pain. All up I inhaled about 1.5 giant cannisters of the gas.

Paracetamol

Paracetamol was supposedly still useful on top of all the heavier painkillers I took as it has a different mechanism of action. For a long time I took 1000mg four times a day, and by the time of the hip replacement it was 1000mg morning and night. I discontinued daily paracetamol soon after tapering off the methadone.

Pregabalin

Commonly referred to by its brand name Lyrica, pregabalin is used to treat epilepsy, anxiety, and in my case, neuropathic pain. I was gradually weaned up to the maximum daily dosage of 600mg, with a 300mg tablet taken morning and night for four years. I have recently begun attempting to reduce the dosage, and I currently take 175mg in the morning and 300mg at night. I am unsure if I will ever be able to discontinue it completely.

Nortriptyline

Nortriptyline has a long history of human use as a tricyclic antidepressant, but it has also been shown to be effective in treating neuropathic pain. I took 50mg in the evening for about a year after the accident, but I was eventually able to discontinue it. After quite a while without taking any my nerve pain started to bother me more at night, so I went back on 25mg. When I began my final taper off of methadone I upped the dose to 50mg to help with sleep, and remain on that amount for now.

Profusely Pained

Neuropathic, or nerve pain, is quite different to normal pain, and something I have to endure in my right leg due to some nerve endings being uprooted. At its worst, in the early days in hospital, it was like my leg was being repeatedly struck by lightning, and there was one particularly unsavoury night in the ICU full of nightmarish electroshock-torture fever-dreams. Fortunately, my nerve pain is now generally well managed by the medication, and while it is always there in the background if I focus on it — making working on this paragraph a nuisance — most of the time it is not too bothersome. I do get the occasional jolt, and there are periods where it flares up and demands more attention (often after heavy leg exercise), but usually I am not distracted by it. It is similar to a pins-and-needles sensation but with more electricity to it. Confused muted nerves now devoid of all purpose sending searching signals out into darkness.

The primary way they monitor your pain in hospital is by constantly asking you to rate it on a scale of zero to ten, with zero being no pain and ten being the worst possible pain imaginable. This becomes a boring game quite quickly, and they use the term ‘pain management’ for a reason; a score of zero was inconceivable for a very long time. For anyone dealing with severe pain issues, it is not a matter of being doped up into a happy bliss all the time, but about preventing pain to the greatest degree possible without the side-effects becoming too bothersome. It can be a fine line between effective analgesia and respiratory failure, and you do not know constipation until you have been bedridden on the highest safe daily dose of fentanyl.

Most of the time in the first few months the medication kept my pain at a five or six. The onslaught of drugs used to keep it this low had a wealth of side-effects, although I was put on so many different things at once that it is hard to say what was a result of what, and also what was just the standard after effects of nearly dying. It was basically like having a multi-month hangover with no reprieve that went far beyond anything alcohol could cause. It was impossible to focus on anything as complex as reading for more than a few minutes without the throbbing headache becoming too debilitating. Then on top of that was the actual pain from my injuries, and often just as bad was the discomfort of being catastrophically constipated.

Since fentanyl was my primary painkiller, due to its short half-life, I had to constantly press the button on the PCA machine to keep the levels in my system high enough to keep the pain at bay. It was impossible to sleep more than an hour at a time without waking in agony and having to spam the button in hope of escaping into another short period of restless sleep. Five hours a night was the upper limit of what was possible, but most of the time it was more like two or three. In the ICU I once went three consecutive days without sleeping, culminating in a half-awake dream state that was very unsettling. An average 2am would find me lying there, trying to remain as still as possible, futilely focusing on my breath with a mantra of “endure, endure, endure, endure…” echoing through my mind. There were five albums on my MP3 player that were soothing enough not to make my headache worse, and with them on a constant loop I was at least able to find some small solace during the long sleepless nights.

As you might expect, I was constantly miserable, but for the most part the medications had an overall dulling effect on my emotions as well as my pain. When I asked how my cat was doing and found out he had died while I was in a coma I had no reaction stronger than thinking “of course he did”. There were not many moments of extreme anguish. Apart from a few times, when worse-than-usual bouts of breakthrough pain managed to tear through the enveloping apathy and let the total despair of my situation flow out unabated, it was just an inescapable dull misery.

These breakthrough moments usually occurred during one of the few times a day when four nurses would move me to prevent pressure sores forming (they still did, in the end). When this happened my pain would shoot up to a seven or eight. It is an exponential scale, and I must also add that I have a good imagination. This was searing, uncontrollable, jaw-clenching, all-encompassing, take-me-out-back-and-shoot-me pain, and I am glad the worst of it only lasted a few seconds. I think a nine or ten would have been largely unattainable. I reserved that rating for the few flashes of pain I remembered from before sinking into a coma, which were so far removed from regular human experience as to be impossible to accurately recall. (The accident itself was not painful in any traditional sense of the word, just… weird and intense.)

There was a good reason for these high ratings too. Throughout the first few months in hospital, no one was aware that my left hip was dislocated, and appropriate care was not taken when moving me to accommodate that. They were still very cautious, most of the time, but their care was directed to the right side of my pelvis where the severest known trauma was. The pain in my left hip did not actually become distinct from all the other pain I was experiencing until a couple of weeks after the accident, when it got noticeably worse over the course of a few days, and was then equally excruciating each time I was moved. I am not sure if the hip was dislocated during the accident and missed by the doctors (who were understandably preoccupied with more life-threatening issues), or if it became dislocated at some other point in time.

Unaware of the dislocation, the immediate reaction of the pain doctors when I complained about this new development was that it was simply referred pain from the right side of my pelvis. I was sceptical about this at first, but after repeated questioning being met with the same answer, I figured they must know best, and just did my best to tolerate it. My entire left leg would involuntarily seize up every time I was moved in a reactive attempt to minimise pain. Eventually, this resulted in uncontrollable spasms taking over the leg, which required diazepam and lots of concentration to subdue. At the same time this was happening, 1.5 litres of an unidentifiable fluid had accumulated in my leg, so it provided an amusing water-bed ripple-effect for the nurses.

After some experimentation, the APS team managed to come up with a combination that made even these short bursts of pain bearable. Every time I was to be moved, I would first load up on three doses of sublingual ketamine, ten minutes apart, then inhale as much nitrous oxide as I could fill my lungs with and exhale my self out into the room’s ambient air for thirty seconds while the nurses moved my body. The effects of nitrous oxide are very short-lived, but by the time it wore off the worst of it was over, and I was able to drift back to my body with my psyche largely unmolested by the shattering jolts of pain I had still vaguely experienced.

The reason I was able to adopt such magical powers is that ketamine and nitrous oxide are both dissociative anaesthetics. They do not dull pain like opioids and most other painkillers do, but instead put a degree of distance between your conscious experience and your body. You are still aware that your body and the pain exist, but you are not your pain. It is a marvellous thing, and I must admit to using a larger amount of the nitrous oxide than would have been strictly necessary by rigid medical standards. However, the mental benefits of actually being able to not just dull but fully escape my pain for a few thirty second periods of the day were immense, and fortunately I have a good poker face, so apart from a few nurses expressing incredulity at the amount I was using, no one had a problem with my bodily excursions.

Using the nitrous oxide like this was actually free of any negative side-effects, and it proved to be a bit of a dark horse in the painkiller department. A common misconception is that regular use of nitrous oxide causes brain damage, but that is not the case. The problem lies in the lack of oxygen your brain gets if you breathe in nothing but pure nitrous for too long, as is sometimes done in recreational settings by people who have not been taught better thanks to the use of scare tactics in place of drug education. The nitrous oxide used in medicine is delivered as a fifty-fifty mix with oxygen, so this was a non-issue. As long as care is taken with a patient’s vitamin B-12 levels (I received a weekly injection), it is generally a very safe drug.

At Last, Stability

After 2-3 months, my pain finally started to settle down, and I was slowly weaned off of the fentanyl, ketamine, and — much to my disappointment — the nitrous oxide. These were replaced with 25mg of methadone twice-daily and oxycodone as needed (regularly). Soon my pain scores actually started to drop for the first time. Initially it was just the occasional period of four, often still higher, but eventually it reached a point where I could stay at two or three for extended amounts of time. This was paradise compared to before, and it led to a period of around a month where I slept for 12-16 hours a day in an attempt to repay the extreme debt I had incurred.

This was also when I reached my weakest. I had not been able to eat properly due to the nausea and constipation, and I could hardly be bothered trying now that I could so easily give in to the methadone’s embrace and drift off into serene slumber out of reach of all life’s worries. It took the horrifying realisation that I had nearly lost 30kg combined with the threat of being put on a feeding tube to finally find any motivation, but with the help of a lot of laxatives, I eventually got my digestive system moving regularly, and started to put on weight.

I was able to start reducing the dose of methadone, and between that and actually eating, I finally had the energy to start devoting my immense spare time to reading instead of lying motionless feeling miserable. I even managed to discontinue the methadone for a short time and get by with only oxycodone, but once I started to actually get out of bed and move about I had to go back on it. (Or was it the other way around? I was using a minimal amount of opioids for a brief period, anyway.) Seventy books later, by the time I arrived at rehabilitation hospital in the last quarter of 2013, I was taking 10mg of methadone twice a day, and somewhere around 50mg of oxycodone, most of it in the afternoon and evening. While nothing compared to what I was on earlier, this was still a very significant dose, and there were plenty of unpleasant side-effects.

Pain had stopped being such a big issue while I was lying in bed all day, but it became more of a problem again once I was active and working towards rehabilitation. During the day sitting in a chair (this was a workout in itself at the time), and especially while exercising, my pain was still quite severe — usually between three and five. It was nothing like it was in the months after the accident, but still strong enough to be distracting and a constant drain on my faculties. Reducing my opioid intake was out of the question, and I left for home at the end of 2013 with my dosage the same as when I arrived.

Continues in part two.