explainer

"I was a zombie for three years": The ordinary women battling Australia's other drug problem.

 

Joeleen Koszyk’s partner and family noticed her dependence on painkillers long before she could acknowledge it herself.

What started with a prescription after back surgery in September 2014 had become a crippling habit. At the peak of her dependence, the Queensland mother was taking 35-40 tablets each day. Her loved ones watched as she swallowed pill after pill, and noted her panic if she left the house without them.

“Everyone was really worried, but I kept taking them and I kept having fights over it. I’d insist that I could stop,” Joeleen, 26, told Mamamia. “I was like, ‘OK, well, this is my last painkiller; I’m just going to stop and prove you all wrong. I’ll show you.’”

On a Friday night, mid 2016, Joeleen took that last tablet. By the Saturday she was in so much agony, she couldn’t move from the couch. She was vomiting, had diarrhoea, her whole body was shaking; “I wanted to die. I told my partner I wanted to die.” By the Sunday afternoon she turned the house upside down to find her prescription.

“I found it. I got in my car drove straight down to the chemist where they gave me the medication. I didn’t even wait ’til I got home. I got back in the car and took the medication right there in the car park,” she said. “Then instead of going home to my partner at the time and my son, I drove to my parents’ house. I just sat on the floor in their kitchen, and just cried. I cried my eyes out, because I realised that I had a problem.”

How to help a friend or loved one who might be dependant on pharmaceutical drugs. (Post continues.)

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According to the 2016 National Drug Strategy Household Survey, roughly 1 million Australians reported having used pharmaceutical drugs non-medically — in other words, not in keeping with a prescription — in the previous 12 months.

That’s higher than the use of all illicit drugs, except cannabis.

The two most common pharmaceutical drugs in those statistics are: opioids (painkillers, including including oxycodone, codeine and morphine), and benzodiazepines (sleeping pills, including temazepam, nitrazepam, diazepam, oxazepam and alprazolam).

These are medications that improve the quality of life of millions; they alleviating crippling pain during rehabilitation, they give people respite from insomnia as they undergo psychological treatment. But, when taken long-term and/or without proper medical advice, they also have the potential to lead to life-altering dependence.

And that’s a growing problem in Australia.

Dr Suzanne Nielsen, Associate Professor and Deputy Director of the Monash Addiction Research Centre, told Mamamia that the number of people seeking non-medication treatment options for codeine and oxycodone dependence, for example, tripled between 2002 to 2011. And it has continued to rise since then.

Sadly, so too have the number of deaths. In Victoria alone, the number of deaths related to pharmaceutical drugs outstrips the road toll, and it’s been that way for the past five years.

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“Our rates of opioid-related mortality, for example, in Australia have almost doubled over a 10 year period up until about 2016, which is the last year of our confirmed reporting,” she said. “So they continue to rise, year on year, and the majority of those deaths are pharmaceutical-opioid-related deaths — heroin is a minority.”

Opioids: Joeleen’s story.

After months of agony following the birth of her child, Joeleen went in for surgery on a slipped disc in her spine. She left after a week with a script for oxycodone and codeine.

“I was like, ‘Oh, it’s okay. I’ll just take it, and then when I get out [of hospital] I’ll stop, and I’ll go back to breastfeeding my son,” she told Mamamia. “That never happened.

“For the first six to nine months, my GP would prescribe me three-months’ worth of oxycodone, tapentadol (another opioid) and codeine at once. I would go in, and she’d call up get the [state health authority] approval, and I would go in to the chemist and they would just dispense. I literally walked out with a bag of, like, 300 pills to just manage by myself.”

She was careful at first. But within a couple of months things changed.

“The way I gauged whether the medication was working was whether I felt a euphoric feeling. It happened so quick that I’d take it, and if I didn’t get that feeling, I’d think, ‘Oh, it’s not helping with my pain, I’ll just take another one,'” she said.

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“I was a zombie for three years, and the only thing I worried about was whether I had the painkillers on me and whether I was going to run out or when I could take my next painkiller without overdosing. That was all my focus was on: painkillers.”

She said that back when she filled that first prescription, no one told her the risk of dependence, no one outlined the potential side effects of the medication, or explained what it would take to come off them. Even when she raised the potentially addictive qualities of the drug with her GP, her concerns were waved off.

“I still remember the exact words,” she said. “[The doctor] said, ‘if you use the medication correctly for pain, and you don’t abuse it, you won’t become addicted. You’ll be fine.’”

Joeleen. Image: Supplied.
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Dr Suzanne Nielsen says that perspective was common back when she undertook an undergraduate degree in pharmacy two decades ago, but has since been disproved.

"It was thought that if you had 'legitimate' pain — this was the kind of language that was used then — that that you couldn't develop dependence. We now know that's categorically untrue," she told Mamamia.

"Some of the more recent research shows that around one in four or one in five patients prescribed long-term opioids will develop dependence to that medicine, which is much higher than was previously thought. When we say dependence in this context, we don’t mean physical dependence, but psychological dependence commonly understood as ‘addiction’.

“What we're doing at the moment as a community of health professionals, and also as a population in general, is playing catch-up with that knowledge."

She notes that each year in Australia, roughly three million people are prescribed opioids, but it's not only those people who will use them non-medically: "Quite often [people will source them] from a medicine cabinet or a friend or family member."

While dependence on opioids can affect anyone, Dr Nielsen said that there are factors that can increase the likelihood.

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"Things like a history of mental health conditions, maybe previous problems with substance use," she said. "Those taking much higher doses of opioids tend to be more likely to develop problems, and younger people prescribed opioids also seem more likely to develop problems.

“But we also know — and this is something we've seen with over-the-counter codeine — that many people can develop problems, and this is really the first time that they've had any kind of substance-use issue. It can be very confronting.”

Benzodiazapines: Meredith's story.

Meredith* was 40 when her psychiatrist prescribed her the benzodiazapines diazepam and temazapam to help her sleep. It was 1994, and she was undergoing therapy to help deal with the ongoing psychological trauma of sexual abuse she'd suffered as a child.

"[The psychiatrist] said I needed medication to help with sleep, and he said that it would take the raw edge of working through the abuse," the now 66-year-old Victorian woman told Mamamia. "The sleep was a real problem because I was having constant, severe nightmares."

These medications are usually prescribed for short periods, say 2-4 weeks. Meredith took them for 20 years.

The mother of three said she was told the medication was safe to take long-term and was never told of any associated risks.

Over the first three years of taking the drugs, she started to become unwell.

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"My coordination, walking, everything deteriorated, and my speech slowed down," she said. "I found it hard to think of the words I want to say, and just thinking in general was much slower."

In 1997, a neurologist diagnosed Meredith with Multiple Sclerosis. It wasn't until after she started coming of benzodiazapines in 2012 that she learned that she didn't have the disease at all. (There's still no single, definitive clinical test for M.S., and recent research suggests almost one in five patients are misdiagnosed with the disease.) By then, her physical symptoms had become crippling; she had difficulty walking, was mostly housebound and had been unable to work.

Potential side-effects of certain benzodiazapines can include reduced coordination and cognitive impairment, and Meredith said she was told she had likely experienced them.

"I was horrified to think that I had lost 20 years through the medication causing the M.S.-like symptoms," she said. "But it did give me an incredible reason to work damned hard to get off that medication."

The withdrawal process, she said, took roughly a year and was "horrific".

"I had this sensation going through me which was like an electrical impulse, and I had the most hideous stomach ache and diarrhoea. I was nauseous and shaking," she said.

***

Dr Nielsen said there's not as much data around benzo dependence in Australia.

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"What we do know is that when people use these medicines very regularly for insomnia, and take them for weeks or months, that they try and stop them it's very difficult to sleep without them. They might experience some withdrawal symptoms that might even exacerbate the original problem with insomnia," she said.

"So this is one of the risks when these medicines are prescribed without, at the same time, providing underlying strategies that will help improve those symptoms, like psychological approaches to improve anxiety management or insomnia.

"It's not to demonise these medicines; they have a place. But it's more often a short-term place. It's something that can help to build a bridge while these other strategies are put in place that are known to be more effective in the long term."

"I didn't tell anyone": Beyond dependence and beyond stigma.

Joeleen also weaned herself off, which is not medically advisable. It took three or four months to get down to zero.

“I actually stopped taking them completely, and I discovered that I was able to manage my back pain without painkillers," she said. "I have bad days every now and again where I've just got to lay down, but majority of the time my back is manageable. I guess there's been pain, but I know my limits now. It's never felt better.”

Still, she said, those three "zombie"-like years cost her deeply; her addiction played a significant role in the end of her relationship with her child's father. It also exacerbated her reflux, meaning she will now likely be on medication for the rest of her life. Then there's the emotional toll, the stigma she's had to grapple with in private.

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“I thought I was a junkie, and I was so scared of being judged that I didn't tell anyone about it," she said. "I was so embarrassed."

Meredith said she too experienced "blame and shame", even from doctors and nurses that attended to her during the various stages of her withdrawal process.

"It was the attitude, like 'You're the one at fault. You've taken this medication all these years. What do you expect?'" she said. "They didn't seem to understand that I'd taken the medication as prescribed, as I was told to take it."

What needs to change?

In Australia, most opioids and some benzodiazapenes are what's known as Schedule 8 drugs. This means that doctors must follow additional state and territory laws when prescribing them, including notifying or obtaining approval from the relevant health authority.

Other measures aimed at combating rates of dependence include real-time prescription monitoring, which is an online service that enables doctors and pharmacists to check which potentially addictive medications have recently been prescribed or dispensed to their patients. Such a system is currently only in place in Victoria and Tasmania, despite the previous Turnbull Government's pledge for a national roll-out.

GP and addiction specialist, Dr Hester Wilson, a member of the Royal Australian College of General Practitioners, argues that while real-time prescription monitoring can be incredibly helpful, it's not a silver bullet.

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"Part of my concern with the real-time prescribing is that on its own it's not enough. We know we need to be able to have very detailed, gentle conversations with people about the risks of these medicines, and we need to ensure that there is access to opioid treatment for opioid dependency," she said. "There's some parts in our country where people cannot access it, where people there are waiting lists, and to me that's that's not OK."

That "detailed, gentle" conversation between prescriber and patient needs to go both ways, she argues.

"It needs to be a very thoughtful, very careful conversation."

"It really is an obligation for us as practitioners to have that conversation and talk to our patients about the risks and side effects of any treatment — that's that's part of informed consent. There's also, I think, an obligation on the part of us as consumers to actually say to our doctors, 'What are the side effects? What are the issues?' We need to take an active role in that process, so that we are making a decision that is right for us.

"Of course, the other dynamic which is tricky here is that if you're really stressed or anxious or not sleeping or you've got lots of pain it can be hard to make a choice at that time. So it needs to be a very thoughtful, very careful conversation."

She notes that psychological therapy can also be a crucial element of that conversation, in order to help the patient manage their emotional response to their ongoing condition.

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"This is difficult chronic work. So having more people on the team that are supporting you is really, really important," she said.

"We've got to ensure that the treatments that you use to manage that actually have more benefit than harm. And that's about finding good practitioners that work with you to ensure that you have the best possible functioning life."

Both Joeleen and Meredith appreciate that while they developed issues as a result of taking these pharmaceutical drugs long-term, that they can be incredibly beneficial to many — as long as they're responsibly prescribed, consumed and monitored.

Joeleen would like to see doctors lean more heavily of alternative ways of managing patients' pain, before prescribing painkillers.

“If they're necessary, then the doctor should sit down and have a serious conversation with the person to explain the risks and explain how addictive they are, the side effects and how to use them correctly," she said. "Just educate them."

If you are struggling with addiction to pharmaceutical medication, help is available. Please speak to your doctor. For more information or to download a medication action plan to discuss with your doctor, visit the Scriptwise website.

*Not her real name. Though she is known to Mamamia, she has chosen to keep her identity private.