'They wake up out of a fog': Opioid taper program helps chronic pain patients wean off powerful drugs
'I felt like those opioids were kind of like a brick around my neck'
Eight men and women quietly sit in a darkened room on the third floor of the Sheldon Chumir Health Centre while Dr. Robert Tanguay — a Calgary psychiatrist who specializes in pain management and addictions — explains how these chronic pain sufferers ended up dependent on opioids, in some cases for years, only to find their quality of life worsened instead of improving as perhaps their family doctors, or specialist once promised it would.
For the past few months, similar groups have been signing up, voluntarily, in the hopes of getting out of their downward spirals at Tanguay's unique opioid tapering program.
It's offered for free, both at the Chumir Centre in the Beltline and at Caleo Health, a spine clinic in northwest Calgary.
"Part of it is giving them hope that they don't need to be on these pills all day, every day. They don't need to set their alarm clocks to tell them when to take their pills, they don't have to live by the pharmacy and they don't have to live by, 'everyday my life is dictated by whether or not I have my medications,'" said Tanguay.
"They're still often going to have some pain syndromes, but much of it is copable and dealable when, basically, they are not sedated on a powerful medication."
Wendy Sheldon's opioid dependency began in 2009 when she was diagnosed with chronic pancreatitis and sent home with an opioid prescription. After trying a few different ones, she and her doctor settled on long-acting codeine to manage her pain.
But three years later she was still feeling miserable and was sent to the pain clinic in Calgary. There she was switched from codeine to another type of opioid, without any tapering, sending her into severe withdrawal symptoms, she says.
"For about a month or more I was so ill that I thought I was going to die," said Sheldon. She lost weight and couldn't eat and her pain got worse.
"That was sort of the beginning of my fear of getting off those things, because I knew what I had gone through once."
Fear is a pretty typical emotion for chronic pain sufferers when they walk into Tanguay's program. He says people worry they are going to feel worse once they stop taking the medication, or that they will undergo major withdrawal symptoms.
"It really depends on the patient. If we are doing the taper correctly there should be no withdrawal at all. They shouldn't even really know that we are tapering them."
He says it's done very slowly and based on a patient's response.
"If we go too fast you can precipitate a pain flare which can lead to distress and deterioration in mood, if not even suicidality."
The typical withdrawal symptoms — shaking, sweating, nausea, anxiety, and what Tanguay calls "the heebee jeebees" — can occur. But the first symptom people often feel is their pain.
"Psychologically, that is powerful because then that continues to strengthen the belief that I need the pill to cure my pain— even though it will never cure your pain — and I need the pill to feel better."
'Scream until I could fall asleep'
Olive Hein, 81, remembers the withdrawal she went through while going through the tapering program.
"I mostly was just in pain and I was determined I wasn't going to take anymore, so I just would put my head in my pillow and I would scream until I could fall asleep."
Hein started taking Percocet in 2010 for pain related to a degenerative spine disorder and scoliosis. She had surgery in 2013 and was then put on Dilaudid, too. She says as time wore on she became tolerant and needed to up her dose.
She didn't like being on the medication, so she tried to ween herself off. It was hard for her family to stand by and watch.
"She was just miserable," said her daughter-in-law, Sheila Kary.
"It was just so much effort to just do something small and her behaviour, her attitude, everything was just awful because she was in so much pain."
Hein knew she would need to help to get off Percocet completely, but her doctor didn't know how to help her, so she was referred to Tanguay's program. That meant she had to move from North Battleford to Calgary.
Hein is now completely off opioids and just takes extra-strength Tylenol for pain.
Her family says the difference in her mood and ability to function, is night and day.
"It's startling how it is. She may not see that but other people see that," said Kary.
"She would talk about the same things over and over again then she wouldn't say anything and be just be quiet, where she is a very talkative person… now she is clear."
Tanguay says this program is meant to help people get off opioids so they can better manage their pain. He says there's no research that proves opioids work in the long term. Instead, the powerful drugs are meant to treat acute pain, like when you break a leg, he says.
"There's a generation of people that the medical system failed and now it's up to the medical system to accept we didn't do the right thing, we allowed massive influence from the big pharmaceutical industry without actually testing or checking, and we've underfunded pain for many years and now we have to turn that tide."
But he says people have to want to be here, otherwise it won't work. And while a patient's pain may increase initially, it's only temporary.
"The evidence suggests that people will either do better, or not do worse, and that's exactly what I see clinically, is people either do better, pain wise, specific to the pain, or they don't get worse, specific to the pain."
'Wake up out of a fog'
"They wake up out of a fog, their mood improves, they start doing more, they cope with the pain better."
Just ask Sheldon. She faced her fears to endure another round of withdrawal symptoms and signed up six weeks ago after being referred by her pharmacist.
"In the end it was very easy," said Sheldon, who has stopped taking opioids altogether and says she feels much better.
She says she's most surprised to find her pain level is the same as it was on the opioids.
"So, you know, I wonder why I was on them." said Sheldon.
"I felt like those opioids were kind of like a brick around my neck and once that was gone I just felt a lightness and feeling of well being."
I felt like those opioids were kind of like a brick around my neck and once that was gone I just felt a lightness and feeling of well being.- Wendy Sheldon, graduate of opioid tapering program
Sheldon is now on medical marijuana to help her sleep at night but plans to go off that eventually.
Tanguay says there's growing interest in his program — not only from potential patients, but from medical communities in other cities that are looking to model it, both in Canada and abroad.
"In no way are we taught in medical school in residency training, in any of our training, how to de-prescribe an opioid. We are never taught it and so we just make assumptions and we have no idea how to do it, so expertise in it is extremely rare. And it turns out that it really theoretically is a treatment for chronic pain."
He says every taper is different and varies in length. There is no 'one-size-fits-all' taper.
Tanguay spends about an hour speaking to the eight men and women attending this week's information session at the Chumir Health Centre. At the end, he asks if they have any questions.
One woman asks how long the program is. Another asks how often they must attend, because they are travelling from out of town. Someone else asks about potential withdrawal symptoms.
Tanguay says another question usually always comes up — what happens next, once they are off their opioids.
Sometimes they are put on a less addictive opioid. Other times they are prescribed another type of medication, which he says may now work better because the patient is off opioids.
Some don't take any medication at all.
But Tanguay says he works with other health professionals, including psychologists, who offer such things as cognitive behavioural therapy, acceptance commitment therapy, and mindfulness to optimize the treatment of the pain.
And he says exercise is better than any medication.
So far nearly 300 people have been referred to Tanguay's program. But people don't need a physician referral. Currently the wait list is about one month long.