UK Crisis Grows Over Pregabalin Misuse

By Pat Anson, PNN Editor

Nearly 3,400 people in the UK have died from overdoses involving pregabalin in the last five years, according to an investigation by The Sunday Times.

One of them was a young man named Alex Cottam, who spiraled into drug abuse, addiction and a fatal overdose after he started taking pregabalin for anxiety and depression.   

“It’s hard to imagine somebody’s whole life revolved around a pill, but it did,” said Cottam’s mother, Michelle. “It completely changed him, like it was an obsession.”

The Sunday Times’ story about Cottam and other pregabalin users sparked a frenzy in British tabloids about the growing misuse of the drug.

“Our Pregabalin nightmare” was the headline in the Daily Mail, which shared the story of a woman with arthritis who said she “felt like I was losing my mind” after taking the drug for six months. Another woman told the tabloid she began seeing “dead people” within 30 minutes of her first dose.  

In a first-person account published in The Telegraph, Miranda Levy wrote about the severe withdrawal she experienced when she stopped taking pregabalin for depression.

“First came the pins and needles, closely followed by the sweating,” said Levy. “Add to this the progression of unremitting nausea, retching, diarrhea, jitteriness, dizziness so bad you can’t stand up and the feeling you’re about to die.”

Pregabalin – commonly known as the brand name Lyrica -- was never intended to treat anxiety, depression or arthritis. It was originally developed as an anticonvulsant that was first approved by the FDA in 2004 as a treatment for epilepsy. Since then it has been prescribed for dozens of painful conditions such as fibromyalgia and diabetic neuropathy, and is sometimes hailed as a “wonder drug” that is safer than opioids.

Pregabalin has helped some pain patients, but for many it’s also had severe side effects such as fatigue, insomnia and cognitive decline. Margaret Heath started taking pregabalin two years ago for Complex Regional Pain Syndrome (CRPS) and says it ruined her life.

"I've been on every type of morphine you can be put on... this is by far and away the worse drug to be on. It's worse than fentanyl. There is absolutely no comparison with the viciousness of the withdrawal of pregabalin," Heath told LBC News. "There would be days where I would not be able to do anything except lie there... it was debilitating."

Nearly nine million prescriptions for pregabalin were written in the US in 2021, the last year for which data is available. A similar number were written in England and Wales the following year, despite growing concerns in the UK that pregabalin is being misused to boost the euphoric effects of other drugs.

Pregabalin has become so popular with illicit drug users that it frequently appears in overdose toxicology reports. The number of fatal overdoses in the UK involving pregabalin has risen by nearly 11,000% since 2011, followed by a 3,275% increase in gabapentin-related drug deaths.    

UK Drugs With Biggest % Increase in Deaths (2011-2022)

DAILY MAIL GRAPHIC

Pregabalin and gabapentin (Neurontin) belong in a class of nerve medication known as gabapentinoids. Their mechanism of action – how they affect the brain and central nervous system – is still unclear two decades after their medical use was approved.

The UK drug statistics are mirrored in a recent analysis of drug tests in the US, which found gabapentin in over 13% of urine samples that tested positive for fentanyl. That’s about twice the number of drug tests in which prescription opioids were found.

Just because a drug is “involved” in an overdose or appears in a drug test doesn’t necessarily mean that drug caused the overdose or is a red flag for addiction. But experts say its long past time for doctors to be more careful about prescribing pregabalin, and to warn patients about potential side effects and the risk of withdrawal.

“How can there be rising deaths from pregabalin and a huge explosion of prescriptions, with all these troubles, and yet doctors are using this drug to treat anxiety?” asks Dr. Mark Horowitz, a clinical research fellow at the UK’s National Health Service.

“Doctors are selling cars without brakes,” Horowitz told The Sunday Times. “It boggles the mind when a drug is showing all these dangers to then use it on a wider variety of people.”

Why We Need to Study Suicides After Opioid Tapering

By Stefan G. Kertesz, MD

How can we understand and prevent the suicides of patients in the wake of nationwide reductions in opioid prescribing?

Answering that question is the passion and commitment of our research team at the University of Alabama at Birmingham School of Medicine. Our study’s name, “CSI: OPIOIDs,” stands for “Clinical Context of Suicide Following Opioid Transitions.” Let me tell you why we are doing this work, what we do, and how you can help.

Opioid prescribing in the US started falling in 2012, after a decade of steady increases. The original run-up in prescribing was far from careful and a judicious correction was needed. A judicious correction, however, is not what happened. Instead, opioid prescriptions fell, rapidly, to levels lower than those seen in 2000. It may require a book to understand how prescribers swung so easily from one extreme to another.

For the 5 to 9 million patients who were taking prescription opioids long-term, reductions and stoppages were often rapid, according studies in the US and Canada. In one Medicare study, 81% of long-term opioid discontinuations were abrupt, often leaving patients in withdrawal and uncontrolled pain.

Prescription opioid reductions are not always good, and not always bad. For some patients, modest reductions are achievable without evident harm, especially if a reduction is what the patient wants to achieve. For others, the outcomes appear to be harmful. Several who serve on our research team have witnessed friends, family, or patients deteriorate physically or emotionally following a reduction. Some attempted suicide and, tragically, others died by suicide.

Large database analyses tell a similar (and nuanced) story. In research derived from Kaiser Permanente, Veterans Health Administration, Oregon’s Medicaid program, and Canadian databases, patient outcomes were diverse. Some researchers found no safety problems after opioid reductions, but others describe suicides, mental health crises, medical deteriorations, and overdoses at frequencies that are too common to ignore. These are not acceptable outcomes. 

The shocking nature of patient suicides led some experts to jump to conclusions, arguing that acute withdrawal from opioids explains all the bad outcomes, and that slow reductions or tapers prevent harm. But that’s not true. In two studies, mental health crises or overdoses occurred at elevated rates a full year after modest dose reductions, such as a 39% reduction in one national study.

Jumping to conclusions about why something bad happens is another way of saying, “We don’t want to investigate.”

After a suicide, we think the right step – the respectful step – is to ask questions: What happened here? Why did it happen? What were all the factors in a person’s life that might have played a role in their death? And where does an opioid reduction fit, or not fit, into explaining what happened?

Asking those questions is crucial. The decision to end one’s life through suicide is rarely simple, but understanding the person’s history and reasoning will spur better approaches to care. Approaching these questions through in-depth rigorous research, rather than pretending we already know why suicides happen, could also induce leaders to take them more seriously than they have to date.

Just like investigators examining a plane crash, we intend to collect the full story of what happened, carrying out detailed interviews and, where possible, reviewing medical records. Studying just one case can tell us a great deal. But our goal is to study over 100 patient suicides.

This approach is called a “psychological autopsy interview.” That phrase can sound a bit daunting. In reality, it’s an interview where we ask about the person’s life, their health, their care, and what happened before they died.

How You Can Help

We seek people who have lost somebody, such as a close family member or good friend, to suicide after a prescription opioid reduction. We are studying deaths in the US among veterans and civilians, and hope to interview more than one person for each suicide.  

Interview topics range from health and social functioning, to care changes prior to death, to whether the person who died felt a sense of connection to others or perceived themselves to be a burden. To our knowledge, no other team is attempting to do this work.  

We face a singular challenge: recruitment. That’s why we need your help. For the last 60 years, studies of suicides involved collaboration with medical examiners in a state or county. That option is not available to us, because medical examiners usually don’t know about health care changes that took place prior to a person’s death.  

There is no master list of suicides that occurred following a reduction or stoppage in opioids. Yet those deaths are precisely the ones we need to learn about. The only way we can document those cases is to reach out to the public and ask if survivors are willing to come to us, either online or by phone (1-866-283-7223, select option #1). 

If enough survivors are willing to participate in this initiative, then we can begin to describe, understand, and prevent future devastating tragedies.  

For the people who are considering participation in the study and wondering what risks are involved, let me offer some reassurance. First, there is an online questionnaire housed on a very secure server. A person can start it and stop at any point if they choose, no questions asked.  

Also, this study is protected by two federal “Certificates of Confidentiality.” These federal orders prohibit release of identifiable data under any circumstances, even a court order.  We are aware that some families are pursuing legal action, and this was a major factor in our decision to take this extra step to protect participants. 

When a person completes the survey, we will evaluate their answers to see how confident they were that the death was likely a suicide, and whether the death occurred after a prescription opioid dose reduction. If they meet these criteria, then we will reach out to discuss further participation in the research study.  

What follows is a more detailed informed consent process. There is a modest incentive ($100) for being interviewed, and a smaller one if the person can work with our medical record team. It is not necessary for a survivor to have access to a loved one’s medical records.  

So far, the interviews we’ve conducted have been serious, warm and thought-provoking. At the outset, we were concerned that these interviews could be upsetting. We learned from reading the literature on this type of interview, that the individuals who agree to participate usually have a desire to share their feelings about their loved one’s death and tend to perceive the interview as a positive experience.  

In the long-run, we hope that after looking at 110 suicides, we can formulate recommendations and programs for care, without leaping to any conclusions. We want to help save lives.  

A study like this is clearly not the only answer to an ongoing tragedy. Research is almost never a “quick answer” to anything. That’s why many members of our team have already engaged in direct advocacy with federal agencies. It was 4 years ago that several of us urged the CDC to issue a clarification regarding its 2016 Guideline on Prescribing Opioids for Pain. A revised CDC guideline was released last year, but we’ve noticed that the health care situation faced by countless patients with pain remains traumatic and unsettled.

These events are hidden and need exploration. We need to take this next step and learn more to prevent further tragedies and lost lives.

If you would like to enter the screening survey for this research, please click here.

If you would like to learn more general information about our study, click here.

If you know a group of patients or clinicians who would like a flyer, presentation, or a link to our study, please let us know by email at csiopioids@uabmc.edu or stefan.kertesz@va.gov

Stefan G. Kertesz, MD, a Professor of Medicine and Public Health at the University of Alabama at Birmingham School of Medicine, and a physician-investigator at the Birmingham Alabama Veterans Healthcare System.  Stefan is Principal Investigator for the CSI: OPIOIDs study.

Views expressed in this column are those of Dr. Kertesz and do not represent official views of the United States Department of Veterans Affairs or any state agency.

For anyone thinking about suicide, please contact the 988 Suicide & Crisis Lifeline, available online, via chat, or by dialing “988.”  A comprehensive set of resources can also be found at this link.

The Real Hoax About Prescription Opioids

By Barby Ingle, PNN Columnist

How many have to die? How many have to be denied? How many have to suffer unnecessarily?

Those are some of the questions I’m asking after reading a recent article in The Guardian about the CDC’s revised opioid guideline. The article has a few misstatements about prescription opioids that I have issues with. 

Before I share my take, I want readers to know that I do not take opioid medications myself. I have taken them in the past, but found other treatments that were more effective, so I stopped taking opioids in 2009. I also have an allergy to OxyContin, which I discovered after a knee surgery.

In 2018, I underwent pharmacogenomic testing, which I highly recommend for anyone who has chronic physical conditions. It has given me the best precision care available. I still live with multiple chronic pain and rare diseases, and will need treatment for the rest of my life.

You may be aware that I recently stepped down as president and a board member of the International Pain Foundation (iPain). It was a completely volunteer position. I have been advocating through many nonprofits since 2006 and have always been transparent about any funding that the charity or I received. I also have a degree from George Mason University in Psychology.

Which brings me back to the claims about addiction, opioids and patient advocacy that Dr. Andrew Kolodny, president of Physicians for Responsible Opioid Prescribing (PROP), made in The Guardian article. This quote is from Kolodny about patient suicides:

“This is a really serious issue. But what the opioid advocates, many with industry ties, disclosed or undisclosed, pushed was this false narrative about an epidemic of suicide and so there was a manufactured backlash against the CDC guidelines.

“The notion that there are patients losing access to an effective treatment, and therefore they have no choice but to kill themselves because they’re in so much pain now, that’s a hoax. But the idea that someone in the context of acute withdrawal would kill themselves, that certainly could be real because it’s so excruciating.”

From the perspective of a pain patient and a former nonprofit board member, I want to set the record straight about Kolodny’s alleged “hoax.” Yes, addiction is a serious issue. Under-treatment of chronic pain is also a serious issue. Any mistreatment of people with chronic care challenges is an issue.

The healthcare system in the U.S. is working as it was designed and needs to be thrown out. We are all individuals and should be treated by the providers of our choosing to get the care that we need — not as the healthcare system dictates. Not every provider is great, not every patient is great, and no treatment works for everyone. 

In America, we live in a “free” society. I believe we should be able to choose our own care and moral stance. But I wonder why Kolodny believes his moral stance should supersede what a provider and patient feel is best, whether it’s addiction treatment, pain management or any particular choice of care.

We should have full access to whatever we are willing to do to our own bodies. I have said many times over the years that I do not want to be a guinea pig anymore. I work hard to manage my pain levels, my surroundings, my energy pennies, and the people around me.

‘Advocates With Industry Ties’

Kolodny claims that many “opioid advocates” have industry ties and manufactured a false narrative about patient suicides in a backlash against the CDC guideline.

As a patient advocate who has been working with nonprofits for almost 20 years, I believe that the pharmaceutical industry should be giving money to the pain community to help us with tools and resources that make our lives better.

People think it’s easy for advocacy groups to get funding from Pharma, but that is not true, at least for the small funding that I was involved with. I know firsthand the many checks and balances that are needed before any grant money is provided. It did not matter if it was $100 or $10,000. Nonprofits have to account for it on their tax returns and through audits.

Since 2015, grant money from Pharma for iPain completely stopped, even the small amounts that we were getting. We went from completing over 200 grant applications a year, and getting less than 5 percent of them approved, down to a 0% success rate. There is nothing to report when you receive nothing, which is how it is going now for most patient advocacy organizations and support groups.

Receiving nothing from Pharma did not change our opinions or goals. We found other ways to accomplish them on a shoestring budget. I wish it was easier, but being hard does not stop the movement, because it is a matter of life or death in too many cases. Our work at iPain continued, because it was never about spreading whatever Pharma wanted. It was always about helping patients get individualized care. And all options, including opioids, should be on the table.  

Our work continued on a smaller scale and more creatively than if we had a large budget to get things done. At about the same time that our funding dried up, social media took off and it became easier to reach more people and actually be heard. We were still able to accomplish our goals, at less cost and with less funding.

I do not have the time, energy or space in this column to go into the many financial ties — disclosed and undisclosed — that Kolodny and PROP have with law firms involved in opioid litigation, which funded their efforts to take opioids away from patients. Good God, what is the point of him being so moral in his own eyes, that he does not let other people choose what is best for them?  

Patients losing access to treatment is real. So are patients dying or contemplating suicide. I receive emails and calls from them regularly, even since stepping down from iPain.

The first patient I lost due to being cut off from medication was in 2012. She was one of my best friends at the time. I talked to her often. She was on a medication that was helping. The provider cut her off and put her on a different drug. Neither were opioids. She was stable and doing well with the first medication, but not on the second one. My friend decided that jumping out of a 10-story window to her death would be better than not having the medication that was giving her more quality of life.

Kolodny says someone in acute withdrawal might kill themselves because it is so excruciating. Yes, Dr. Kolodny, withdrawal is hard and you are forcing it on people who are already in pain, who did not need or ask for your opinion. That is the real hoax.

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and best-selling author on pain topics. Barby has received over 25 awards for her advocacy efforts over the years. You can follow her at www.barbyingle.com 

Opioid Tapering Raises Risk of Overdose and Mental Health Crisis

By Pat Anson, PNN Editor

Tapering patients to lower doses of opioid pain medication significantly raises the risk of opioid withdrawal, drug overdose and a mental health crisis such as depression, anxiety or suicide attempt, according to a large new study. For most patients, the risk remains elevated up to two years after their doses were reduced.

Opioid prescribing has fallen dramatically in the United States over the past decade, particularly after the release of the CDC’s controversial opioid guideline in 2016. Although millions of patients were affected, few efforts were made to study patient outcomes or what happens to those who have their opioid doses reduced or even stopped.

To address this knowledge gap, researchers at the University of California Davis School of Medicine analyzed health data for over 19,300 patients on long-term opioid therapy who had their doses reduced by at least 15 percent. In addition to medical and pharmacy claims, researchers looked at emergency room visits and hospital admissions for overdose, withdrawal or mental health crisis, both before and after tapering.

"We used an innovative observational study design to understand the patients' experience before and after opioid dose reduction. We compared outcome rates in pre- and post-taper periods with patients serving as their own controls," said co-author Daniel Tancredi, PhD, a pediatrics professor at UC Davis Health.

"While patients may struggle during the early tapering period, we reasoned that many may stabilize with longer-term follow-up and have lower rates of overdose and mental health crisis once a lower opioid dose is achieved," said lead author Joshua Fenton, MD, professor and vice chair of research at UC Davis School of Medicine.

But Fenton and his colleagues found patients continued to struggle long after their doses were cut. Their findings, published in JAMA Network Open, show a 57% increase in overdose or withdrawal incidents and a 52% increase in mental health crises 12 to 24 months after doses were lowered.

For every 100 patients during pre-tapering, there was an average of 3.5 overdose or withdrawal events and 3 mental health crises. After tapering, there were 5.4 overdose/withdrawal events and 4.4 mental health crises for every 100 patients. The risks associated with tapering were greatest in patients with the highest doses.

"Our findings suggest that, for most tapering patients, elevated risks of overdose and mental health crisis persist for up to two years after taper initiation," said Fenton. "We hope this work will inform a more cautious approach to decisions around opioid dose tapering."

An earlier study at UC Davis found that tapered patients were 68% more likely to be treated at a hospital for opioid withdrawal, overdose or alcohol intoxication, and were twice as likely to have a mental health crisis.

‘I Was Cut Off Cold Turkey’

The FDA warned in 2019 that rapid tapering or abrupt discontinuation was causing serious harm to patients. The CDC Director also pledged that year to evaluate the impact of the agency’s opioid guideline on patients and to “clarify its recommendations.”

Three years later, not a word of the CDC guideline has changed and the agency is slow walking efforts to revise it. A revised guideline draft, which cautions doctors to avoid rapid tapering or discontinuation, is not expected to be finalized until late this year. In the meantime, many doctors continue to taper patients – even those who’ve taken opioids safely and responsibly for years.

“Yesterday, I was cut off of one of my opioid medications, cold turkey. I've been given one last 30-day supply of the other, after 19 years of chronic pain treatment with opioid medication. I am bedridden,” a patient told us in a recent PNN survey on the impact of the 2016 guideline.

“Currently my pain management doctor is tapering everyone from schedule II (opioid) medications, even with years of good results and no side effects. This is dangerous when people are dealing with real pain,” said another patient.

“Before the guidelines, my pain was controlled with fentanyl patches and Vicodin for breakthrough pain. I was able to work, care for my home and family. That's all been taken away and now I spend my time either in bed or on my couch, in pain. Tapering down was 7 months of hell in my bedroom. It was cruel and unnecessary to take away medicine that allowed me to enjoy and participate in my life,” another patient wrote.

In an editorial also published in JAMA Network Open, two University of Alabama at Birmingham researchers who are studying the role of tapering in patient suicides urged doctors to be more cautious.

“Our view is that opioid dose reduction is likely to offer benefit for some, while harming others. The harms may include worsening pain, distress, or death,” wrote Stefan Kertesz, MD, and Allyson Varley, PhD. “Given this uncertain balance of harm and benefit, it would be wise for health systems to stop promoting this change to care. A policy of tapering all patients to doses lower than a specified threshold cannot be supported from available evidence.”

Kertesz and Varley are currently recruiting family and friends of patients who died by suicide to participate in a pilot study about the impact of opioid tapering on their loved ones. To participate in their study, click here to take an online survey or call 1-866-283-7223.

Study Warns of ‘Kratom Use Disorder’

By Pat Anson, PNN Editor

Nearly a third of people who use the herbal supplement kratom develop symptoms of withdrawal and tolerance that could be signs of kratom use disorder (KUD), according to a small survey by the National Institute on Drug Abuse. Withdrawal symptoms included gastrointestinal upset, restlessness, anxiety, irritability and fatigue.

Kratom comes from the leaves of a tree that grows in Southeast Asia, where it has been used for centuries as a natural stimulant and pain reliever. An estimated two million Americans use kratom to self-treat their pain, depression, anxiety and addiction.

NIDA researchers recruited 129 past and current kratom users in the U.S. to participate in the online survey, asking them about their symptoms and demographic information.

The study findings, recently published in the Journal of Addiction Medicine, found that over half of kratom users showed no signs of addiction. But 29.5% met the diagnostic criteria for KUD, such as increased use, tolerance, withdrawal, unsuccessful attempts to quit, and craving. Most reported KUD symptoms that were mild or moderate, with about one in four with KUD having severe symptoms.  

Nearly 10% of participants also reported “psychosocial impairments,” such as decreases in social, occupational, or recreational activities because of their kratom use.

“As assessed here, tolerance and withdrawal are primary KUD features rather than psychosocial impairments. As kratom is often used among persons with a myriad of health conditions, clinicians should be aware of and assess for kratom use and withdrawal,” wrote lead author Kirsten Smith, PhD, who heads much of the kratom research at NIDA.

Federal health officials have long taken a dim view of kratom and made unsuccessful attempts to ban it. In 2018, former FDA Commissioner Scott Gottlieb, MD, claimed that kratom was an opioid, addictive, and should not be used to treat any medical condition.

“Kratom use disorder” is a relatively new diagnosis and does not appear often in medical literature.  One of the first references to it is in a 2019 study that called kratom an “emerging public health threat.” Researchers said healthcare providers need to be aware that kratom use was “typically accompanied by increasing tolerance and dependence making it highly problematic.”

A kratom advocate said the new NIDA study shows the risk of kratom addiction is low and that symptoms are often mild. 

“I thought the results of this research were particularly interesting because of the growing number of addiction recovery centers expanded their service-for-hire to include kratom use disorder (KUD) and characterizes this condition as mirroring opioid use disorder (OUD) that requires intensive drug interventions of different substances,” said Mac Haddow, a lobbyist and Senior Fellow for the American Kratom Association, which represents kratom vendors and consumers.  

“Importantly, the study concludes that tolerance of kratom over time, and withdrawal from that level of dependence are the primary outcomes rather than psychosocial impairments that are largely debilitating among drug addictions. The study also recognizes that kratom continues to be a harm reduction alternative for those suffering from polydrug use addiction issues and that accounts for its increasing use as the drug overdose crisis deepens in the U.S.” 

Kratom is often used as a treatment for addiction. A 2016 PNN survey of over 6,400 kratom users found that nearly 12% used it to reduce their cravings for alcohol or opioids. Nine out of ten said kratom was “very effective” at treating their substance use disorder. And over 98% of all respondents don’t believe kratom is harmful or dangerous.

Mild Withdrawal Common Among Pain Patients Who Use Cannabis

By Pat Anson, PNN Editor

About 10 percent of patients who use medical cannabis to relieve chronic pain develop more severe withdrawal symptoms, according to a new study that found most patients have only mild symptoms and remain stable after long-term cannabis use.

Researchers at the University of Michigan Medical School and the VA Ann Arbor Healthcare System followed 527 Michigan residents with chronic pain for two years, asking whether they experienced any of 15 different withdrawal symptoms – such as craving, nausea, irritability and aggression - when they had gone a significant amount of time without using cannabis.

At the start of the study, most had only mild (41%) or moderate (34%) withdrawal symptoms, with 25% of the patients classified as having severe withdrawal.  Researchers say many patients were not even aware they experienced withdrawal, attributing symptoms such as fatigue and poor sleep to their underlying pain conditions, not to any dependence on cannabis.

"Some people report experiencing significant benefits from medical cannabis, but our findings suggest a real need to increase awareness about the signs of withdrawal symptoms developing to decrease the potential downsides of cannabis use, especially among those who experience severe or worsening symptoms over time," says lead author Lara Coughlin, PhD, an addiction psychologist at U-M Medical School.

After one year, about 13% of the patients experienced more withdrawal symptoms, with 8% reporting more severe symptoms after two years. People who were younger, smoked cannabis, used larger doses, and had poor mental health were more likely to have severe symptoms.

However, the vast majority of cannabis users did not experience more withdrawal symptoms, with those who reported mild symptoms likely to stay that way. About 20% of patients reported fewer symptoms after one year and 14% had fewer symptoms after two years. Older age and vaping were associated with lower odds of having severe symptoms.     

“The majority of participants remained in their initial withdrawal class throughout the 2-year study period, with the highest stability among those with mild withdrawal symptoms at baseline. Of those who transitioned to another symptom class, transitioning to milder symptoms was slightly more common than transitioning to more severe symptoms,” researchers reported in the journal Addiction.

“For the majority of patients, the current findings indicate that the severity of withdrawal symptoms are likely to remain stable over time.”

Poor sleep was the most common withdrawal symptom, followed by depressed mood, decreased appetite, craving, restlessness, anxiety and irritability. The study did not assess whether cannabis was effective for pain relief or what form of ingestion worked best.

Cannabis Not Perceived As Risky

Most Americans believe cannabis has less abuse potential than alcohol and many commonly prescribed anti-anxiety and pain medications, according to survey results recently published in the journal Addictive Behaviors.

Researchers at the University of Delaware and Michigan State University surveyed over 1,000 adults in 2019 about their views on cannabis products such as hemp, CBD, THC and marijuana. The vast majority felt cannabis products have a valid medical use and have less abuse potential than hydrocodone, oxycodone, Xanax and Valium.

source: addictive behaviors

“These results suggest that consumers perceive CBD as more like an over-the-counter pain reliever such as Tylenol or Advil and less like prescription opioids,” researchers found. “They perceive CBD and hemp as medicinal and as having little potential for abuse, making them an attractive replacement for addictive pain relievers.”

The researchers acknowledged that there is little clinical evidence to support these views, but blame the lack of studies on the federal government’s classification of marijuana as a Schedule I Controlled Substance, saying it has “severely limited research.”

A longtime critic of federal marijuana policy was not surprised by the survey findings.

“The overwhelmingly majority of Americans have long abandoned the federal government’s ‘Flat Earth’ position that marijuana is highly dangerous substance without any therapeutic efficacy,” said Paul Armentano, Deputy Director of NORML, a marijuana advocacy group.

“It is time for Congress to jettison this intellectually dishonest position as well and remove cannabis from the Controlled Substances Act in a manner similar to alcohol — thereby ending the existing state/federal conflict and permitting state governments, not the federal government, to be the primary arbiters of cannabis policy.”

A Survival Guide for Opioid Withdrawal

By Crystal Lindell, PNN Columnist

Maybe your doctor cut off from your medications. Maybe you had a pain flare and ran out of pills a week before your next scheduled refill. Maybe you just don’t want to deal with opioids anymore because they’re harder to get than Beyonce tickets.

Whatever your reason for going off opioids, it’s likely you’ll have to deal with physical withdrawal — especially if you’ve been taking them for a while. But there are ways to minimize the symptoms.

I also would be remiss if I didn’t mention that my boyfriend, Chris — who also has chronic pain and gone through opioid withdrawal more than once — helped me compile and write this list.

So from two people who’ve gone through it more than a few times, here is our opioid withdrawal survival guide:

1. Talk to a doctor first

If you have access to a doctor, and you feel comfortable doing so, talk to her about it. I’m not a doctor, I’m just a patient, so please keep that in mind with everything else I say.

2. Be aware of what the symptoms are

Know thy enemy, as they say. There are a lot of symptoms caused by opioid withdrawal that you may not be expecting — especially if your only reference point is pop culture. I like to say that opioids sort of shut down your systems, and withdrawal turns everything back on at full volume.

You’ll probably experience some or all the following, and they’ll likely start kicking in within about 24-48 hours.

• Diarrhea

• Nausea and vomiting

• Sneezing and runny nose

• Anxiety and panic attacks

• Fatigue (Your natural instinct may be to reach for caffeine or other stimulants, but be careful. They likely will just make your anxiety worse and it won’t touch your fatigue)

• Insomnia

• Sweating

• Yawning and watery eyes

• Restless legs (Your legs move on their own while you’re sitting or lying down. I know, I thought it was fake too, but it is very real and difficult to deal with).

• Muscle aches

• Goosebumps

• Dilated pupils

• Hyper-libido and increased sex drive (Remember, opioids turned off everything and withdrawal turns it back on)

• Increased fertility (Being on opioids can make it difficult to get pregnant and withdrawal will have the opposite effect. If you want to avoid pregnancy, make sure to use birth control)

• Thrill-seeking behavior and mood swings (As the ups of your day give way to the lows, you may find yourself seeking out risky behavior as a way to improve your mood and receive the adrenaline that you so desperately crave).

3. Suicidal thoughts

I wanted to pull this one out separately from the other symptoms because it’s potentially so dangerous.

There are a lot of news reports about opioid users who kill themselves after they get clean. Reporters often frame it as though the person got off opioids, took a look around and decided that what’s left of their life just wasn’t worth living. That’s not usually the case though. Withdrawal itself will make you suicidal.

The good news? Knowing it’s being caused by withdrawal and not by crappy life circumstances may make it easier to push through it.

The best way to combat this symptom is to know it might happen and have a plan in place to deal with it if does. I once went seven days without any opioids when I had a full-on, hours long anxiety attack and planned to kill myself. I eventually gave in and took just one small hydrocodone, and within an hour my mind and spirit had calmed.

Which brings me to my next piece of advice.

4. Taper, Taper, Taper

Popular culture has perpetuated the idea that quitting opioids is all about will power. That’s a bunch of B.S.

Most relapses occur because people don’t properly taper their dose. Regardless of why you take opioids, your body has likely gotten accustomed to having them, just like it would have gotten used to a heart medication.

The best and safest way to successfully get unaccustomed to opioids is to taper off them as slowly as possible.

What does that look like? Well, if you take five pills a day, go to four for a couple weeks (yes, weeks), then three, then two, then one, and then even half. I personally noticed a lot of symptoms even going from one pill a day to zero — so if you can split a pill in half, do that.

If you are using drugs illegally, tapering might look a little different. One thing you can do to taper is switch to a weaker drug. Another important step would be changing how you take it. So if you’re snorting it, switch to taking it orally as part of the tapering process. If you’re injecting, try taking it in any other fashion that will allow you to bridge the gap.

5. Consider using kratom

Of course, tapering only works if you still have access to pills or drugs. If you don’t — there’s still help available. Kratom is your new best friend. It will drastically reduce your withdrawal symptoms.

Personally, I think kratom is also a good long-term solution for chronic pain and is a lot milder than pharmaceutical-grade opioids. Assuming it’s legal in your state, kratom is much easier to get than opioids and does not require a prescription. You can get kratom online, at most smoke shops, and even some gas stations.

For the record, the FDA has not approved kratom for any medical condition — including addiction treatment. And some researchers say kratom is a public health threat because it is unregulated.

6. Consider using marijuana

If you can’t get kratom for whatever reason, marijuana will also help you taper down. Edibles in particular will help with insomnia, anxiety, muscle aches, and restless legs.

But beware, if you haven’t taken edibles before, even a very small dose may knock you out for a few hours.

7. OTC medications

There are some over-the-counter medications that will help reduce symptoms:

• Imodium (to help with diarrhea and nausea)

• Benadryl (to help with the sneezing and insomnia)

• Tylenol (to help with aches and pains)

• B1, B12, multivitamins and potassium (to help replenish what your body loses from the sweating and diarrhea, which is a huge step toward feeling better)

8. Avoid alcohol

You may be tempted to reach for a glass of wine or a shot of vodka to ease your symptoms — but trust me, they will just come roaring back even stronger after it quickly wears off. Try all other options before you resort to a stiff drink.

9. Consider Suboxone and methadone

Depending on what you were taking and for how long, you may not be able to get through withdrawal without medication assistance treatment.

Suboxone (buprenorphine) and methadone are two opioid medications that can help you through withdrawal, and they are medically proven to be effective. You’ll have to get both from a doctor, and they may not be covered by insurance. But they may also be your best shot at getting off opioids long-term.

10. Don’t go back to your old dose

You start off strong. You tell yourself you’ll never take even one more hydrocodone again. But seven days later, the hell of withdrawal has finally beaten you down enough that you decide it’s just not worth it.

It’s okay. It happens. It doesn’t mean you’re a bad person.

BUT DO NOT TAKE YOUR OLD DOSE!

I can’t be clear enough about this. In just one short week, your body’s tolerance levels have already shifted. And your old dose is going to hit you like a freight train. It may even be strong enough to kill you.

Sadly, this is how a lot of opioid users die. They assume their bodies can handle the same fentanyl patch they were using just a short seven days ago, and it’s suddenly way too strong. This can also happen when someone goes through a formal rehab program, gets out and goes right back to their old dose. It’s enough to stop their breathing.

You may have heard of this phenomenon when it comes to celebrity deaths, like Cory Monteith from Glee. As it explains on Monteith’s Wikipedia page: “After a period of cessation from opioid drug use, a previously tolerated drug concentration level may become toxic and fatal.”

In other words, he was just clean enough for the opioids to kill him.

Even if you’re used to a small dose, like 60mg of hydrocodone a day, once you’ve gone through a couple days of withdrawal, those 60mg are going to hit you incredibly hard.

11. Have Narcan on hand

Along those same lines, I highly recommend you have Narcan (naloxone) on hand just in case, as it can reverse the symptoms of an overdose and potentially save your life. In many states you can even it get it over-the-counter, without a prescription.

Narcan is one of those things you think you’ll never need until you need it. I keep a dose in my house because I regularly take prescription opioids and I want to be as safe as possible. Even if you don’t personally need it, you never know if a child or someone else might find your medications. And you’ll want to have it on hand if that happens.

12. Remember it’s a marathon

In the movies, withdrawal is like three days and then you’re healed. Even though most of the physical symptoms will be gone in about a week, you can still have withdrawal symptoms for up to two years.

It’s called Post-Acute Withdrawal Syndrome (PAWS) and it can include things like panic attacks, insomnia, restless legs, anxiety, risk taking behavior and suicidal thoughts.

13. Get help from family and friends

It’s so important to have a least a couple friends or family members around to help you through it. My best friend and my boyfriend are my go-to because I know they won’t judge me and they’ll be supportive.

If you have the option to be around another person as much as possible, definitely do that. They can help take your mind off the physical symptoms and help you cope with the long-term psychological ones you may experience. Anxiety is a lot easier to deal with when you’re hanging out with your best friend.

14. Find a therapist you trust

If you were getting opioids with a legitimate prescription from a legitimate doctor, you may not think you need long-term addiction treatment. But you still have a medical condition that warranted a long-term opioid prescription. That means you probably would benefit from having a therapist to talk to about how you’re coping with all of that.

Your doctor may be able to refer you to someone, and Psychology Today also has a decent directory. These days, you can even do it all online, with sites like Better Help, which offers access to counselors via phone and text.

I also personally found a low-dose SSRI helpful for dealing with the long-term anxiety and panic attacks, so you may want to talk to your doctor about an antidepressant or anti-anxiety medication.

15. Don’t be too hard on yourself

You’re doing better than you think you’re doing, I promise.

And we’re all rooting for you. You’ve got this.

Crystal Lindell is a journalist who lives in Illinois. She eats too much Taco Bell, drinks too much espresso, and spends too much time looking for the perfect pink lipstick. Crystal has hypermobile Ehlers-Danlos syndrome. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Emmy Winning Video Perpetuates Myths About Addiction

By Dr. Lynn Webster, PNN Columnist

"Rebekkah's Story" recently won an Emmy for Short Format Daytime Program at the 46th Annual Daytime Emmy Awards. The six-and-a-half minute video was produced by Truth Initiative, a non-profit created to campaign against tobacco use that recently launched an opioid misuse and education campaign called The Truth About Opioids.

Rebekkah is a young woman addicted to opioid medication and heroin who spent five days in a “treatment box” publicly detoxing on a New York City street.  The documentary has also been broadcast on television and can be seen online:  

Though billed as educational, the producers of “Rebekkah’s Story” failed to accurately convey the facts. This is not the first time we've seen movies about drug use and addiction that misinform.  

I wrote a blog not long ago about the problems with two mainstream movies -- "Ben Is Black" and "Beautiful Boy"— both of which reinforced unhelpful narratives about addiction. In both films, good people from good families found themselves caught in the web of addiction, seemingly with no personal responsibility for it. 

"Rebekkah's Story" continues in the same tradition. It exploits Rebekkah and her experience while perpetuating three myths about addiction that do us no favors as our nation struggles with this terrible illness.

At the same time, millions of Americans with chronic pain are being forced off opioid medication — left to suffer in part because of these three myths:

Myth #1: Heroin Use Starts With Prescription Drugs

The movie begins with a misleading statistic: “Eighty percent of heroin users started with a prescription painkiller.” That implies taking painkillers as prescribed for medical use leads to using heroin 80% of the time, and that is not accurate. 

The 80% statistic comes from a 2013 study of heroin users who reported nonmedical use of opioid pain relievers before initiating heroin. Most of them had not been prescribed those opioids for pain; they obtained the drugs from family or friends for nonmedical use.  

In fact, the vast majority of people who use heroin have abused other substances prior to abusing prescription opioids. Usually, their long history of substance abuse begins in adolescence with tobacco, alcohol and other substances besides opioids. Moreover, by 2015, one in three heroin users initiated their opioid use with heroin.

Rebekkah's situation -- progressing from oxycodone to heroin -- was unusual. The video presents her story as a cautionary tale of what can happen if you use prescription opioids, but her story is atypical. Almost always, there are other factors that contribute to the transition from appropriate use to abuse and addiction. This is a truth not addressed in the film. 

The film begs the question: Why did Rebekkah start to use heroin? What did heroin provide that she could not resist? 

Myth #2: Withdrawal Is Synonymous to Addiction

"She had been an accomplished dancer and athlete, and that was lost when her addiction took over her life and self-image," explains the video's website. "Now Rebekkah is regaining control of both — courageously making her detox public in order to help other people while she works towards a new start."

The producers of “Rebekkah’s Story” present a poignant story, but they propose that withdrawal is synonymous with addiction. That is incorrect.

Withdrawal may be associated with addiction, but it does not necessarily follow from addiction. Not everyone who goes through withdrawal has the disease of addiction, and not everyone with addiction must go through the agonizing withdrawal that Rebekkah did.

A major problem that most people with addiction face is the stigma associated with their disease and their inability or unwillingness to obtain help. Fear of facing a legal penalty (such as incarceration) or a social consequence (estrangement from family members, job loss, etc.) often prevent those who use heroin from seeking treatment.  

People experience opioid withdrawal largely because the healthcare and criminal justice systems make access to appropriate and safe treatment illegal, unavailable or unaffordable.  

Myth #3: Detoxification Ends Addiction 

The ending of "Rebekkah's Story" differs from reality, too. Addiction is usually a life-long disease and patients who recover frequently relapse. The video's tidy and triumphant resolution does not accurately reflect what occurs in real life.  

It's troubling how the producers went about creating the video in ways that subtly strengthen and exploit the three myths about addiction.

Their set was a makeshift hospital room projected in a cubicle visible to pedestrians walking near Times Square. The setting was essentially a stage for performance art at Rebekkah's expense.

Rebekkah takes on the role of a gladiator engaging in combat against a metaphorical beast: the agony of opioid addiction.

She is the heroine with whom we should empathize. We are supposed to share her anger toward the wicked doctors who prescribed her pain medication. 

People watch as Rebekkah suffers from withdrawal without receiving the medical treatment that should be available to anyone in withdrawal. It was surprising that, in the documentary, an addiction physician was complicit in exploiting a person undergoing withdrawal.   

No one should be forced to experience what Rebekkah went through. She should have been given appropriate medical care as she recovered from heroin abuse. 

"Rebekkah's Story" claims to tell the truth about opioids. It does not. All it shows is Rebekkah’s decision to voluntarily and publicly experience a horrible withdrawal that was both unnecessary and avoidable.

Unfortunately, compliant and non-addicted pain patients who are currently being forced off opioid medication don’t have the same stage to tell their stories. Their voices often go unheard, and their agonies are invisible.

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is a former president of the American Academy of Pain Medicine and is author of the award-winning book “The Painful Truth” and co-producer of the documentary “It Hurts Until You Die.”

You can find him on Twitter: @LynnRWebsterMD.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

FDA Warns About Fast Opioid Tapers

By Pat Anson, PNN Editor

The U.S. Food and Drug Administration issued an unusual warning Tuesday cautioning doctors not to abruptly discontinue or rapidly taper patients on opioid pain medication.

The agency said in a statement it had received reports of “serious harm in patients who are physically dependent on opioid pain medicines suddenly having these medicines discontinued or the dose rapidly decreased.” The harm includes withdrawal symptoms, uncontrolled pain, psychological distress and suicide.

The FDA gave no details on cases of patient harm but said it was tracking them and would require changes on opioid warning labels to help instruct physicians on how to safely decrease opioid doses.

“Rapid discontinuation can result in uncontrolled pain or withdrawal symptoms. In turn, these symptoms can lead patients to seek other sources of opioid pain medicines, which may be confused with drug-seeking for abuse. Patients may attempt to treat their pain or withdrawal symptoms with illicit opioids, such as heroin, and other substances,” the FDA said.

In recent years, there have been an increasing number of anecdotal reports of pain patients committing suicide or turning to illegal drugs for pain relief. It is not clear why the FDA decided to act now, just days after the departure of former FDA commissioner Scott Gottlieb, MD.

In PNN’s recent survey of nearly 6,000 patients, over 80 percent said they had been taken off opioids or had their dose reduced. Nearly half said they had considered suicide because their pain is poorly treated and many were turning to other substances – both legal and illegal – for pain relief.

• 11% obtained opioid medication from family, friends or black market

• 26% used medical marijuana for pain relief

• 20% used alcohol for pain relief

• 20% used kratom for pain relief

• 4% used illegal drugs (heroin, illicit fentanyl, etc.) for pain relief    

Last December, over a hundred healthcare professionals warned in a joint letter to the Department of Health and Human Services that forced opioid tapering has led to “an alarming increase in reports of patient suffering and suicides” and called for an urgent review of tapering policies at every level of healthcare.

“This is a large-scale humanitarian issue,” the letter warns. “New and grave risks now exist because of forced opioid tapering.” 

Federal agencies widely differ on opioid tapering recommendations. The Centers for Disease Control and Prevention recommend a "go slow" approach, with a "reasonable starting point" being 10% of the original dose per week. Patients who have been on opioids for a long time should have even slower tapers of 10% a month, according to the CDC.

The Department of Veterans Affairs recommends a taper of 5% to 20% every four weeks, although in some cases the VA suggests an initial rapid taper of 20% to 50% a day “if needed.”

In its warning, the FDA cautioned doctors that no standard opioid tapering schedule exists that is suitable for all patients.

“When you and your patient have agreed to taper the dose of opioid analgesic, consider a variety of factors, including the dose of the drug, the duration of treatment, the type of pain being treated, and the physical and psychological attributes of the patient,” the FDA said. “Create a patient-specific plan to gradually taper the dose of the opioid and ensure ongoing monitoring and support, as needed, to avoid serious withdrawal symptoms, worsening of the patient’s pain, or psychological distress.”

The FDA urged patients and doctors to report side effects from opioid discontinuation and rapid tapers at druginfo@fda.hhs.gov or to call 855-543-DRUG (3784) and press 4.

Precautions Needed for Medical Cannabis

By Roger Chriss, PNN Columnist

Medical cannabis continues to thrive. Older Americans are flocking to cannabis dispensaries and more states are considering legalization or adding approved indications.

But there is relatively little information about the potential risks and pitfalls of medical cannabis. The New York Times reports that “researchers are uneasy about the fact that older people essentially are undertaking self-treatment, with scant guidance from medical professionals."

There are three broad categories of precautions that people who are using or considering medical cannabis should be aware of.

Product Quality and Reliability

Reliably sourcing a high-quality cannabis product can be difficult. Product labels are often inaccurate. A 2015 survey of cannabis edibles in Seattle, San Francisco and Los Angeles found that only 13 of the 75 products tested (17%) had labels that accurately indicated their THC content.

More recent testing in California found that about a quarter of the cannabis-infused cookies, candies and tinctures failed safety tests because of improper labeling or because they contained pesticides.

One lab in Sacramento was even found to be falsifying test results. A spokesman for the California Cannabis Industry Association said it's an open secret in the industry that companies have been paying for favorable test results.  

States from Massachusetts to Nevada are also seeing problems with pesticides, mold and heavy metals contaminating medical-grade cannabis.

DRUG POLICY ALLIANCE

Interactions and Contraindications

Cannabis consists of over 100 cannabinoids, as well as other physiologically active substances. This makes for a lot of possible drug interactions. Drugs.com lists 129 major and 483 moderate interactions that cannabis can have with medications such as acetaminophen, codeine, fentanyl, hydrocodone, pregabalin and oxycodone.

Moreover, cannabis has been found to reduce thyroid stimulating hormone (TSH) levels. For people with thyroid disease, artificially suppressed TSH can affect medication decisions. Similarly, cannabis reduces platelet aggregation, a problematic and even risky issue for people with bleeding disorders or low platelet counts.

A new review in Current Opinion in Neurology found that cannabis exacerbates tinnitus (ringing of the ears), a common problem for older people and people with Meniere’s disease or Charcot-Marie-Tooth disease.

Tolerance and Withdrawal

Cannabis tolerance may be a clinically significant issue. A new study on CBD oil for seizure management found that cannabidiol loses its effectiveness in treating epilepsy. About one-third of patients in the study stopped taking CBD because of a lack of benefits or side effects like sleepiness and gastrointestinal trouble.

“CBD is a good option for children and adults with certain kinds of epilepsy, but as with anti-epileptic drugs (AEDs), it can become less effective over time and the dose may need to be increased to manage the seizures,” said lead author Shimrit Uliel-Sibony, MD, head of the pediatric epilepsy service at Tel Aviv Sourasky Medical Center.

Also important is withdrawal. Recent research on cannabis withdrawal in a group of chronic pain patients found that about two-thirds reported at least one moderate or severe withdrawal symptom. Withdrawal symptoms included sleep difficulties, anxiety, irritability and appetite disturbance.

In sum, there are important issues to address when using or considering medical cannabis. Unfortunately, knowledgeable physicians are hard to find and high-quality cannabis is difficult to obtain reliably. It is hoped that this will change soon so that medical cannabis can be used safely and effectively.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

FDA Continues Crackdown on Kratom Vendors

By Pat Anson, Editor

The U.S. Food and Drug Administration has stepped up its campaign against the herbal supplement kratom by sending warning letters to three distributors of kratom products – the latest effort in what appears to be a concerted government effort to stop all sales of the herb.

Front Range Kratom, Kratom Spot and Revibe are accused of illegally selling unapproved “drug products” and making unproven claims about kratom’s ability to treatment opioid addiction, chronic pain and other medical conditions.

The FDA and the Centers for Disease Control and Prevention have previously warned consumers not to consume any kratom products. The CDC said kratom was the “likely source” of a small salmonella outbreak, while the FDA alleged that kratom has opioid-like qualities and could lead to addiction and overdose.

“Despite our warnings that no kratom product is safe, we continue to find companies selling kratom and doing so with deceptive medical claims for which there’s no reliable scientific proof to support their use,” FDA Commissioner Scott Gottlieb, MD, said in a statement.

“We cannot allow unscrupulous vendors to take advantage of consumers by selling products with unsubstantiated claims that they can treat opioid addiction. Far from treating addiction, we’ve determined that kratom is an opioid analogue that may actually contribute to the opioid epidemic and puts patients at risk of serious side effects.”

Kratom comes from the leaves of a tree that grows in southeast Asia, where it has been used for centuries as a natural stimulant and pain reliever. In recent years, millions of Americans have discovered kratom and started using the herb as an alternative to prescription drugs for treating chronic pain, anxiety, depression, and addiction.

Like most herbal and dietary supplements, there is little scientific research to support the use of kratom and it is not approved for any medical condition by the FDA. As a result, many kratom distributors are careful to avoid making unsubstantiated medical claims. Front Range Kratom, for example, currently has a clear disclaimer on its website stating that:

“Information on this website is not for health-related guidance. The products mentioned on this website are not intended to diagnose, prevent, treat or cure any diseases or health conditions. You need to consult with a medical practitioner for all issues with regards to your overall health.”

But even sharing customer testimonials about kratom is considered illegal marketing by the FDA. The agency alleges in its warning letter to Front Range Kratom that the website contained comments from new customers such as “Certainly kratom is useful for pain — myself and everyone else on the internet can attest to that.” Another customer wrote that “the two things I think kratom works the best for are pain and to help people get through some of the post acute withdrawl (sic) symptoms they get when they come off of their pain medications.”

Those testimonials from kratom users can’t be found on the website today.

“If people believe that the active ingredients in kratom have drug-like effects that can treat pain or addiction, then the FDA is open to reviewing that data under our new drug approval process,” said Gottlieb. “In the meantime, I promised earlier this year that the FDA would step up our actions against unapproved and unsafe products that are being deceptively marketed for the treatment of opioid addiction and withdrawal symptoms.”

FDA investigators are also monitoring the social media sites of kratom vendors. Last October, Kratom Spot shared on its Facebook page a CNN story about kratom as a possible treatment for pain and opioid addiction. The company only said the story was “positive news for kratom as... an all natural alternative.” But the FDA said that amounted to the illegal marketing of an unapproved drug.

“The claims on your website and social media sites establish that your kratom products are drugs…  because they are intended for use in the diagnosis, cure, mitigation, treatment, or prevention of disease—in particular, for opiate withdrawal and addiction,” the warning letter states.

It probably didn’t help that Kratom Spot shared a picture on its Facebook page of hundreds of kratom orders being readied for shipment by another federal agency -- the U.S. Postal Service.

Kratom Spot, Front Range Kratom and Revibe were all given 15 days to respond to the warning letters, which state that “failure to correct violations may result in law enforcement action such as seizure or injunction.”

KRATOM SPOT/FACEBOOK

The threat of legal action can be all that it takes to drive a kratom vendor out of business. In February, the FDA forced  Divinity Products Distribution to recall and stop selling kratom products. The FDA said the company agreed to the “voluntary destruction” of its kratom products, even though there were no reports of illnesses associated with them.

How Two Toddlers Saved My Life

By Crystal Lindell, Columnist

I wish I could say it’s been a rough couple months for me, but that’s not exactly true. It’s actually been more like a rough couple years.

I spent three years battling debilitating rib pain that nobody seemed to be able to cure. And then, when I discovered that my obscenely low vitamin D levels were likely to blame and I started to feel better, I faced an entirely new version of hell — opioid withdrawal.

I had been on morphine for three years, 24 hours a day, 7 days a week, and I honestly thought that when the rib pain subsided I could just endure 72 hours of physical hell and move on with my life.

But morphine is like an abusive boyfriend, it lingers. It hurts you and then offers you the cure, and then it hurts you again. And you always pay for the highs with desperate lows.

Studies have shown that it can take two years for your brain to adjust after withdrawing from opioids. And it turns out it doesn’t much matter if you were buying them off the street or getting them via a legitimate prescription from a legitimate doctor. Your brain doesn’t care.

And yes, I know, there are people out there who have an easy breezy time with it. They just decide to stop and then they stop.

I am not one of those people. I hate those people.

I have spent the last few months suffering from a potent mix of suicidal thoughts and anxiety attacks. And navigating the whole mess is especially hard because for some reason people think that if you are just a strong enough person, you’ll be fine. Let me tell you the truth, opioids don’t care if you are Wonder Woman herself, they will ravage you.

In the midst of all this, my best friend since childhood was pregnant with her third child. She and I are like sisters, having both endured crazy families, growing up poor and our 20’s together.

And so when she was put on strict bed rest about 27 weeks in, I said I would come stay with her during weekdays to help with her other two kids, who are both just toddlers themselves at 1 and 3 years old.

I work from home, so I have the luxury of volunteering for such things. And I confess I was pretty pleased with myself at the thought of playing a small role in making sure the newest member of their family was born healthy.

But if we’re being honest, she could have said no. She could have said that she didn’t want an opioid addict around her kids. She could have easily pointed to my debilitating anxiety attacks and said I was unfit to supervise toddlers.

Maybe she was too desperate to say anything like that to me. But I honestly don’t think she ever even thought it.

So, in late May, I basically moved in with her, her husband and two toddlers. I went from the cool chick who comes over and plays bubbles to the cool chick who has to give the kids baths, feed them, change diapers, clean up spit up, watch Sesame Street on repeat for 16 hours a day, AND play bubbles.

And somewhere along the way, I forgot that I was having a really rough couple of years.

Kids have a way of forcing you to be in the present. There’s no time to anxiously contemplate the meaning of life and whether or not you’ll ever find true love, when the meaning of life and true love are staring up at you calling you “Bistol” because the C sound is hard, and asking for another pack of gummy bears.

And I don’t care who you are, watching a child literally learn to do the most fundamental of human movements, walking, over a period of about three weeks is breathtaking and jaw dropping and mid-afternoon Taylor Swift dance party worthy.

And so, that is how one of the worst times in my life was transformed by two toddlers. Two boys who had no idea they were helping me navigate opioid withdrawal when they were screaming for teddy bears at 1 a.m., and spitting up all over the carpet, and eating rocks, and begging for ketchup, and laughing and crying and cuddling and loving.

Because that’s actually how it works, isn’t it? You think you’re saving someone, but then you realize that this whole time they were saving you.

Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since February 2013.

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Seeing Both Sides of the Opioid Debate

By Crystal Lindell, Columnist

I have suddenly found myself on both sides of the opioid issue.

I’m a chronic pain patient who is among the lucky few to have gotten better, or at least mostly better. And now, I’m so “lucky” that I get to take myself off opioids. It’s been hell.

I had this idea in my head that it would be like in the movies — 72 hours of feeling like death and then I would go on with my life. But it turns out even after your physical body adjusts to life without the drugs, your brain aches for them and begs you to take them.

I have it on good authority — a psychiatrist at a university hospital who specializes in this sort of thing — that I was never classically addicted to the morphine and hydrocodone that I took on a daily basis for my intercostal neuralgia. I never took more than the prescribed dose. I never took them to get that “high” that can come from the drugs. I never bought any off the streets.

I took them for pain. As prescribed. And I passed every stupid urine test they ever gave me. If they gave out grades for taking opioids correctly, I’m not saying I would definitely have an A+, I’m just saying I probably would. 

But when you’re on morphine 24 hours a day/ seven days a week for three years straight, your brain doesn’t much care why or how you took them, it just wants to know why the heck you stopped.

And so even after the initial diarrhea and the sweating and the body aches subsided, my brain was left in shambles. And I was hit with horrific, lingering crippling anxiety and insomnia.

It turns out there’s this thing called post-acute withdrawal syndrome, or PAWS. And first it should be noted that they really didn’t take things typically associated with puppies and use them to name ugly, terrible withdrawal-related issues. But whatever.

Anyway, as you go off certain drugs, like opioids, “Post-acute withdrawal occurs because your brain chemistry is gradually returning to normal. As your brain improves the levels of your brain chemicals fluctuate as they approach the new equilibrium causing post-acute withdrawal symptoms,” according to an article on Addictions and Recovery.org.

“Most people experience some post-acute withdrawal symptoms. Whereas in the acute stage of withdrawal every person is different, in post-acute withdrawal most people have the same symptoms.”

And the symptoms can last for two years.

Here’s is a list of symptoms from that article:

• Mood swings
• Anxiety
• Irritability
• Tiredness
• Variable energy
• Low enthusiasm
• Variable concentration
• Disturbed sleep

I have all of them, if you were wondering.

The anxiety and insomnia are a special kind of hell, because they don’t even let you escape with sleep for a few hours a day. You’re just awake, all the time, wondering if the world is actually going to end right then.

And you know in your mind that the anxiety isn’t logical. You know that just because the guy you’re seeing has read your text message but he hasn’t immediately responded to it doesn’t mean he’s met someone else and gotten married to her in the last seven minutes.

But anxiety doesn’t give an eff about logic. So your heart rate ramps up and you feel sick to your stomach and you convince that if he would just TEXT YOU BACK it would all be fine. And then he does, but it’s still not fine. Because it’s never fine.

Possibly most depressingly of all, I’m struggling to write. The anxiety convinces me that I have nothing important to say and nobody would want to read it anyway, and that anything I type has probably already been said better by someone else. It paralyzes me, and takes away the one thing in life I have always been able to count on. And getting this very column out has been an exercise in sheer will.

So yeah, it’s been awful. And most of the doctors I’ve been working with truly believe that since the drugs are technically out of my system and I wasn’t an “addict,” that I should be super awesome and totally good to go. Except I’m the completely opposite of that, and I’m really struggling with all this.

The worst part might be that dealing with withdrawal has so many ties to morality in our culture, so every time I have an anxiety attack and I reach for half a hydrocodone to calm me down, I feel like I failed at life. I feel like I went from A+ to F-.

The thing is, even with all this hell, I still don’t regret going on morphine three years ago. Back then I was in so much pain that I was genuinely planning ways to kill myself and the opioids were the only thing that helped me. They not only saved my life, they helped me keep my job and stay somewhat social.

But now, as I try to get my brain back to normal, I’m struggling. Like I mentioned, I’m working with a psychiatrist and psychologist and I have also recently made the decision to go on anxiety medication and try sleeping pills.

I still wake up in a state of panic more days than not though. I feel like something horrible is going to happen at any moment, and feel lucky if I get five hours of sleep in one night. So it’s not like I’ve found a magic cure.

The bottom line is it’s time we all admit how incredibly complicated opioids really are.

On one side, people in pain deserve access to them. Quality of life is important and nobody should have to suffer because of mass hysteria about hydrocodone. 

But we can’t ignore the fact that no matter how responsibly we take these drugs, our brains get addicted to them over time. And stopping them isn’t as easy as a 72-hour withdrawal weekend.

Doctors need to know these things, and then they need to relay them to their patients. And only when we have an honest conversation about the benefits AND the risks associated with these drugs can we begin to move forward in a productive way.

Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since February 2013.

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Sneeze Alert: What It’s Like to Taper off Opioids

By Crystal Lindell, Columnist

As a result of feeling a bit better lately, I have been trying to go off all of my opioid pain medications, which at one point totaled as much as 60 mg a day — three, 8-hour time release 15 mg morphine pills and then as many as three, short-acting, 5 mg hydrocodone as needed.

I worked my way down from 60 mg a day to 15 mg a day over the course of a month, and then tried to drop down to zero. It did not go well. You can read more about that here.

A little over a week after trying to go cold turkey, for various reasons involving a fresh pain flare and horrific withdrawal symptoms, I ended up back on the drugs. And I have spent the last few months working with a team of doctors trying to figure all this out and attempting to slowly taper off those last 15 mg. 

This is what it’s been like:

Withdrawal is sneezing. Every three or four minutes. As soon as the opioids wear off at all — I’m sneezing.

And it’s anxiety. And waking up drenched in sweat. And it’s the kind of diarrhea that you have to learn to accept as a part of your life now. The kind that fills the toilet multiple times a day and leaves your legs weak. 

It’s calling your high school boyfriend at 2 p.m. on a Friday because you’re in Target having an anxiety attack for no reason and you need to talk to someone, anyone, or you might actually die right there between the fitting room and the yoga pants display. It’s immediately regretting that phone call and then having anxiety about why you made it in the first place.

It’s not sleeping. God is withdrawal not sleeping. You’re lucky if you get four hours in one night. And waking up at 3 a.m.   

It’s giving up, and then trying again tomorrow.

It’s realizing that cutting your pills in half and taking them in a different time configuration actually helps a lot. And it’s tracking every dose and every symptom in Google Keep.

It’s deciding that maybe dating isn’t the greatest idea when your fight or flight response is literally kicking in every time it takes a guy more than seven minutes to respond to a text message. It’s giving in and going out with a guy on a Tuesday night anyway because the escape is worth it.  

It’s doing a lot of things you aren’t proud of.

It’s your primary care doctor telling you that other people have no problems at all going off these drugs, then qualifying his statement with, “But, I mean, I believe you,” which somehow implies he doesn’t.

It’s reaching out to your old psychologist and pleading for help, and then getting referred to a psychiatrist who specializes in this sort of thing and finally finding one person on the whole entire Earth who actually has some idea of what you’re going through.

It’s a glass of wine, and a handful of Advil, and lots of sugar candy, as you try to find anything to help manage the symptoms.

It’s slow. Withdrawal is maddeningly slow. It’s going down 1.25 mg in a day and feeling like the world is ending and waking up more anxious than you’ve ever been. And wondering if you can actually do this.

And then it’s a post anxiety-crash four hours later, and being so tired that you can’t even move your arm to check your phone.

Withdrawal is multiple people calling you a drug addict to your face because your body is physically dependent on a medication you were given by a doctor. It’s multiple people saying you just need more willpower and more prayer and more desire to get off the drugs.

It’s wondering if maybe you are a drug addict.

It’s trying to eat Taco Bell because Taco Bell usually solves everything and then realizing that you can’t even stomach a cheesy gordita crunch because the withdrawal has destroyed your appetite. 

It’s working out to help the anxiety, and using the stupid Calm App for meditations that never work, and texting your best friend 72 times an hour so that you know you’re not alone. And then texting her again. And it’s breathing her oxygen for awhile because you don’t seem to have any of your own.

It’s intestinal cramping so severe that you’re literally doubled over in pain on the couch, crying out in pain, wondering if this is the end.

It’s deciding to go back to church because for some reason, for that hour each week, you feel maybe a little bit of peace.

Withdrawal is feeling weak.

It’s wondering if you’ll ever feel normal again. It’s wondering that over and over and over and trying to convince yourself that someday you will get a full night's sleep and you won’t wake up covered in sweat and you won’t have diarrhea first thing in the morning and you won’t have the crushing feeling of anxiety as you greet the day.

Withdrawal is trying to live a normal life while your body goes through hell every day. It’s trying to work and be a good friend and a decent human being when all you want to do is die. It’s trying to figure out how much information, exactly, you should give your boss about your opioid dependence.

It’s having a pain flare and thinking that maybe the drugs were doing more than you thought, and wondering if you’re even doing the right thing.

It’s saying that John Green quote about survival to yourself 59 times a day. The one that goes, “I'm not saying that everything is survivable. Just that everything except the last thing is.” And then it’s reminding yourself that this is probably not the last thing. 

And it’s reaching out to your Facebook friend who has the same chronic pain you have and him telling you that you have to do this — it’s important that you do this — because if you don’t the next best option is in-patient treatment and you don’t want that.

It’s trying to distract yourself with The Hobbit, and Spotlight and Downtown Abbey, and Facebook.

Withdrawal is still happening. It’s ongoing. It’s a long-term goal. A hope that one day you’ll be clean — whatever that means. 

It’s praying, and crying, and giving up, and trying again.

And it’s sneezing.

Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since February 2013.

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Going Off Morphine is Hell

By Crystal Lindell, Columnist

This past weekend, as I tried to get off morphine once and for all, one thought kept going through my mind — if the devil is any good at his job, hell will just be eternal opioid withdrawal.

It’s like, have you ever had the flu, and also food poisoning, and also been hit by a train, and also had the fight or flight anxiety that comes from being chased by a bear for a week straight — all the same time? Well it’s worse than that.

It’s effing hell.

And it’s all made even worse by the fact that I had the cure the whole time. Every single minute that went by, I knew that I all had to do to make it all go away was pop one of those little blue pills in my purse.

I made it to the 72 hour mark last night at midnight. That’s 72 hours without morphine or a hydrocodone. I haven’t gone a full 72 hours without an opioid in almost two and a half years.

I spent all of November tapering down my dose. Going so effing slow. Like three pills, then two pills, then three pills, then two pills. Then after a week, I’d do one pill then two pills, then one pill.

I was down to one pill every other day, of the lowest dose, and I knew the next step was going through withdrawal. I thought maybe it wouldn’t be that bad since I had been going so slowly with the tapering. I was wrong.

Honestly, the first 24 hours weren’t so bad. My body was just chilling, expecting another dose in a day or so. But then, at midnight, exactly 24 hours in, the involuntary leg movements started. I was lying in bed, in the middle of the night, and my right leg would just move. Also, my anxiety started skyrocketing so high you’d have thought I was in a war zone.

By the morning, about 31 hours in, the muscle aches had set in, and everything I had ever eaten over the last two years had started to come out. Diarrhea doesn’t sound like the worst thing in the world, until you literally spend so much time on the toilet that your legs go numb. And then when you do get up, you are so dehydrated that you can’t even walk without holding on to the wall.

There’s other stuff too, the kind of stuff that maybe sounds minor until it happens to you. Like, my nose was randomly running, and I was sneezing like there was a secret cat hidden in the bathtub. And I could not sleep. At all. And if somehow I did get a couple minutes of shut eye, I would wake up drenched in sweat. Also, everything made cry. Seeing the sun? Tears. Facebook posts about makeup? I’d start weeping. Basically the fact that I was alive was enough of a reason.

Again, all these things don’t sound so horrible, but when they are all happening at once, it is literally hell on earth. 

I spent most of the 72 hours watching Breaking Bad — which is either the worst show to watch during withdrawal because it’s all about drugs, or the best because it’s all about the horrible things drugs lead to.

I also spent most of the 72 hours trying to process how I got to this point. Morphine has been so good to me over the last two years. And I stand by the fact that it literally saved my life. If it wasn’t for the pain relief I got from the drug, I don’t know if I would have been able to endure. And I am thankful to morphine for that.

But I wouldn’t wish the morphine withdrawal on Hitler.

And I thought about everyone who has ever had to endure this for whatever reason. And my heart filled with compassion and love for them. Some people like to say that drug addicts are just weak, or lack self-control. Those people are a**holes.

I also thought a lot about how much I wanted to just pop a morphine and make everything better. I thought about it so hard. Vividly picturing the little blue pill in my head and fantasizing about how good it would feel to take just one.

And I thought about how going through withdrawal was a good thing because I wouldn’t even be going off morphine if I wasn’t feeling better. (See Crystal's last column: "Is Vitamin D Making Me Feel Better?")

I felt like this was a final step. A last stand by my pain to suck me in. I had to get off this drug to move on with my life. But it was so incredibly hard.

And I kept thinking about how, I am a good person. I am a strong person. I should be able to get through this. Why am I struggling so much?

My best friend was extremely supportive during the whole thing, constantly checking on me, praying for me, and sending me encouragement. And at one point she sent me a text that said, “I think the last two years were the toughest times of each of our lives (in different ways). Glad I get to see you on the other end.”

The other end. Wow. I honestly never thought I would ever get to see the other end. For a long time, I didn’t even think there was an “other end” to get to.

The idea that I could get to this proverbial “other end” though, it was enough to keep me going.

Honestly, I still feel like I was jumped, and then tossed in front of a train. But I’m doing a lot better than I was doing on day two. From what I can tell, the withdrawal symptoms can last anywhere from a week to months, but it’s those first 72 hours that are the most horrible. And I have made it through those.

I also discovered that there’s a cocktail of over-the-counter drugs that help. Specifically, I have been popping handfuls of Advil, Imodium and Benadryl.

I saw my brother this morning. And as I walked toward him, I felt like I was just regaining my footing after being in a plane crash. Still shaken up, disoriented and feeling like hell, I said, “Well, I’m finally feeling a little better. I made it to 72 hours.”

“Great. Now you have to make it a week,” he said.

Crap, I thought. He’s right.

Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since February 2013.

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.