Tapering off or discontinuing the use of opioids
Kirk Foat is a pain patient and recently shared his unusual and interesting story at the University Health Network nurses conference (text is below).
Good morning and thank you. I would like to thank my doctors, my pain team and my wife and kids for their help in getting me to this stage today. Specifically I would like to thank Dr. Andrea Furlan for inviting me to share my story.
I am a self-taught expert in pain management and opioid tapering. I want to share my story because I understand that you have recently been given the ability to prescribe opioid medication. My expert status was hard won. I have insights to share from a patient’s perspective.
Let me explain. I’ll set the stage. It’s January 25th 2008. I am on a luxury oceanfront beach with my wife in Curacao, which is an island near Aruba celebrating my 40th birthday. We are getting a massage side by side with the Bob Marley song “Buffalo Springfield” playing in the background.
Fast forward 8 hours. I am invited by our hotel bartender to a local hot spot called Mombo beach for a birthday drink. I thought, why not – sounds fun. What I did not realize was that my life would be forever changed.
I’ll cut to the chase. The bartender and his surprise crew would attempt to kidnap me. While running for my life I pulled myself up a rusty fence and severely cut my right hand on security spikes as I flipped myself over to land on the other side. The group was in pursuit and I had to think quickly to survive. I ran around the back of the car dealership that the fence was surrounding. I took my shirt and shoes off and hid in an open sewer by laying down horizontally with muck up to my ears. I could hear them looking for me but I had to be still….I remember I could hear myself breathing and recall my right hand burning.
I got away from my assailants. But was left with physical scars and the pain that would become my life.
I received medical treatment in Curacao. My hand was ripped from the base of my palm up to the last knuckle of my middle finger. The result was not positive. The doctor in Curacao sewed a necrotizing leptospirosis infection into my right hand.
When I arrived the next day to Canada I went directly to University Hospital in my home town of London, Ontario. The ER doctor who triaged me gasped when she saw the wound and immediately told my wife and I that she was unqualified to treat this injury. She called the plastic surgery team who arrived quickly. They looked at my hand, gave me a shot of morphine and asked that I consent to a possible right hand amputation before wheeling me into the operating room.
It took four surgeries to rebuild and save my right hand. After the first surgery which removed the infection, my right hand was open – missing the large amount of tissue they needed to cut out. It stayed that way for a week until they were certain the infection was resolved. Even though my hand was wide open I was asked to start hand therapy from my surgical bed to ensure my hand could move again after all the surgeries were done.
My pain was dulled for the first time with my first dose of morphine in the ER. Hand therapy and just regular life was exhausting for me and oh the burning, fiery nerve pain with a good dose of arthritic joint pain. My post-surgical pain initially was managed by my family doctor. She started me on a fentanyl patch, then oxycodone and then graduated to oxycontin, lyrica and many other mind numbing medications starting in May 2008.
I returned to work in April 2008. I tried to focus and do my job every day but I knew that I returned too quickly. I spent a year trying to adjust to all the medications and the pain. During this time I came to realize that Lyrica had a lot of negative side effects for me, so I stopped taking that medication.
Things however were getting worse. At my wife’s urging I saw a psychologist in April 2010 and she confirmed what my wife expected – I had an undiagnosed case of PTSD from the trauma of the accident. I worked with Dr. Lisa Destun for about a year to develop strategies to cope and work through the PTSD so that I could move forward. I am very grateful for her care and counsel.
I felt tired all the time, a side effect of the opioid medication. My family doctor requested a blood test to investigate, which indicated that my testosterone levels were low. This also is a common side effect of opioid medication. She prescribed testosterone gel for low libido in April 2009. This altered my mood further, but did little to meaningfully improve my testosterone levels or my libido.
What it did do, however, was make conceiving impossible in 2010 when my wife and I wanted to start a family. We had no idea that the testosterone would reduce my sperm count to almost nothing. We sought help. The first fertility specialist indicated the only way my wife would conceive would be in their clinic using donor sperm. Luckily, we sought a second opinion and were advised that I simply needed to stop the testosterone, wait 3-4 months and try again. I am happy to report we have two beautiful healthy boys aged 3 and 5 today!
My first attempt at an opioid reduction was April 2011. I had been urged by my doctor that "I really needed to reduce" – but was not given any information or support about why, what to expect or how to best accomplish this goal. I complied with this request and reduced by 30mg’s of oxycontin. It was too much at one time. I quickly went back up in dose because of increased pain.
It took two years to get to the point of wanting to look at options again. In January 2013, I saw a pain specialist through a friend’s referral and Dr. Geoff Bellingham explained that there might be ways that he could help in reducing by trying other medications to wean me off opioids. I tried a ketamine transfusion and many more medications but none were successful and they had many side effects. And I cycled through the discomfort of starting and stopping medications for many months. I was provided methodone pills but I fell asleep at the wheel twice while taking them so immediately stopped.
Finally, having run out of pharmaceutical options Dr. Bellingham referred me to a neurosurgeon who was using spinal cord stimulation to treat neuropathic pain in a clinic at University Hospital. I underwent the procedure twice in the summer and fall of 2015. The first stimulator created an infection and was removed immediately causing a spinal tap headache. The second was successfully implanted but provided me less than 30% relief so was deemed ineffective as an option.
So, back to the status quo. In March 2016, I introduced the idea to my pain specialist and family physician that I would like to stop all medication at once. I felt my medication was increasing my pain. I was at the end of the road. I had tried everything and nothing worked. I knew that the medication had become less and less effective and I knew it was having detrimental effects on my life.
The pain specialist advised me to taper and gave me a two page print out on what to expect. My family doctor thought I should try suboxone. Throughout all the medications I had taken over the years, I became a good researcher and read that getting off suboxone was close to impossible and I didn’t want to trade one medication for another. So, I decided to taper and started in March 2016. In broad terms, I took one less pill every three weeks. I had a job that I continued to work at so needed to be able to spend the weekend of the taper in bed and be in reasonable shape to work the following week. Then start to feel better and get the fortitude to do it again. It took me until September 2016, or seven months, to stop all medication while I continued to work full time.
I want to remind everyone today how grateful I am for our amazing healthcare system and team of experts that have assisted me with pain. They truly cared about me. Because of my experiences I have some suggestions today that I want to share with you that I hope may assist some patients out of the opioid haze that controlled my life for almost a decade.
I come to you today as a patient. A patient who became physically addicted to opioids, but managed to stop taking all medication. I now have come to know that my pain is slightly better than it was when I was on medication. Most importantly I found my life again ... my family again.
I am here to suggest the benefits of empowering your patients with knowledge and their ability to understand and initiate change from what they have learned themselves.
My Opioid Manager
It took me 8.5 years to understand that no medication for me is the best solution. If I was introduced to a tool like the one that Dr. Furlan has developed (My Opioid Manager), day one I may have come to the same conclusion within a shorter time-period and it would have provided me critical information that I lacked and provided answers to many questions I had over time and reduced the fear of the unknown.
In short this is what I have learned:
- Every patient who receives an opioid medication that is not palliative is in a precarious position to become physically addicted and tapering off is extremely challenging
- Every visit, you have an opportunity to provide information to your patient. Each visit there is an opportunity to educate and inform. If and when a patient comes to the conclusion that they need to taper this will always be more powerful and accepted than an imposed solution. “here’s how I will help you reduce” versus “you need to reduce”.
- Understanding how pain and suffering are related. I was in real pain. Doctors reinforced that I had a legitimate need for the medication and I was not abusing or misusing it. Understanding how to deal with pain from a psychologist was a very key solution for me. Dr. Destun worked with me to acknowledge the pain in a positive way then move on using mindful meditation.
- Having a plan for a pain patient that they have input on is imperative for acceptance of plan to reduce or taper.
- Being extremely direct at the beginning of any pain treatment to let the patient know the specific time-period before addiction sets in. It may surprise you, but this was never directly discussed with me.
Ask your patient to step back from their medication for a moment. Questions like:a. “do you feel you are acting like the same person that you were prior to taking opioid medication” b. if you had a chance to ask your co-workers would they say you are as friendly as you were prior to taking opioids? c. would your kids say opioid medication helps you play with them more? d. Look in the mirror and ask yourself truthfully would the pain be here with or without medication anyways?
- “do you feel you are acting like the same person that you were prior to taking opioid medication”
- if you had a chance to ask your co-workers would they say you are as friendly as you were prior to taking opioids?c. would your kids say opioid medication helps you play with them more? d. Look in the mirror and ask yourself truthfully would the pain be here with or without medication anyways?
- would your kids say opioid medication helps you play with them more? d. Look in the mirror and ask yourself truthfully would the pain be here with or without medication anyways?
- Look in the mirror and ask yourself truthfully would the pain be here with or without medication anyways?7) Being honest about the fact that any reduction or taper will increase pain, but that this is temporary and that there are huge benefits.
- Being honest about the fact that any reduction or taper will increase pain, but that this is temporary and that there are huge benefits.
Let’s be clear, tapering down to zero was not pleasant. If you combine this discomfort with temporary increased pain it’s a hard sell. However, I can tell you, the clarity of life without opioid glasses or opioid fog despite the increased pain was the best solution for me by a longshot.
I realized that pain in my right hand will continue no matter what I do, or whether I take medication or not. I knew the medication had significant side effects so I was left with what non-medication solutions can I implement? How each patient gets to a similar conclusion will vary but it is your job to avoid putting them into this situation if at all possible, and if they need the medication to recover and do physio like I did after a physical dependency settles in - how to get them to their best solution in a supportive way using your influence and knowledge and the trust they have in you as a medical professional.
I hope this was enlightening. Thank you. Kirk Foat.
- This story is fully owned and copyrighted by Kirk Foat and has been printed here with his permission.
The WRCPI is always looking for new ideas and new people to get involved to help provide better awareness and education regarding chronic pain within the Regional Municipality of Waterloo.
Please visit www.wrcpi.ca for additional information or to get involved with the WRCPI.