Premenstrual Disorder Causes Despair for Some Women

By Lauren Peace, KFF Health News

For the most part, Cori Lint was happy.

She worked days as a software engineer and nights as a part-time cellist, filling her free hours with inline skating and gardening and long talks with friends. But a few days a month, Lint’s mood would tank. Panic attacks came on suddenly. Suicidal thoughts did, too.

She had been diagnosed with anxiety and depression, but Lint, 34, who splits her time between St. Petersburg, Florida, and Tulsa, Oklahoma, struggled to understand her experience, a rift so extreme she felt like two different people.

“When I felt better, it was like I was looking back at the experience of someone else, and that was incredibly confusing,” Lint said.

Then, in 2022, clarity pierced through. Her symptoms, she realized, were cyclical. Lint recognized a pattern in something her doctors hadn’t considered: her period.

CORI LINT

For decades, a lack of investment in women’s health has created gaps in medicine. The problem is so prevalent that, this year, President Joe Biden signed an executive order to advance women’s health research and innovation.

Women are less likely than men to get early diagnoses for conditions from heart disease to cancer, studies have found, and they are more likely to have their medical concerns dismissed or misdiagnosed. Because disorders specifically affecting women have long been understudied, much remains unknown about causes and treatments.

That’s especially true when it comes to the effects of menstruation on mental health.

When Lint turned to the internet for answers, she learned about a debilitating condition at the intersection of mental and reproductive health.

Sounds like me, she thought.

What Is PMDD?

Premenstrual dysphoric disorder, or PMDD, is a negative reaction in the brain to natural hormonal changes in the week or two before a menstrual period. Symptoms are severe and can include irritability, anxiety, depression, and sudden mood swings. Others include fatigue, joint and muscle pain, and changes to appetite and sleep patterns, with symptoms improving once bleeding begins.

Unlike the mild discomfort of premenstrual syndrome, or PMS, the effects of premenstrual dysphoric disorder are life-altering. Those afflicted, according to one estimate, can endure almost four years of disability, cumulatively, over their lives.

Though researchers estimate that the dysphoric disorder affects around 5% of people who menstruate — about the same percentage of women with diabetes — the condition remains relatively unknown, even among health care providers.

In a 2022 survey of PMDD patients published in the Journal of Women’s Health, more than a third of participants said their family doctors had little knowledge of the premenstrual disorder or how to treat it. About 40% said the same was true of their mental health therapists.

Reproductive mental health has been sidelined as a specialty, said Jaclyn Ross, a clinical psychologist who researches premenstrual disorders as associate director of the CLEAR Lab at the University of Illinois-Chicago. Only some health care providers get training or even become aware of such disorders, Ross said.

“If you’re not considering the menstrual cycle, you’re at risk of misdiagnosing and missing what’s actually going on,” Ross said.

That was the case for Tampa, Florida, resident Jenna Tingum, 25, who had panic attacks and suicidal thoughts as a premed student at the University of Florida. It wasn’t until her college girlfriend read about PMDD online and noticed Tingum’s symptoms flared in the days leading up to her period that Tingum talked with her gynecologist.

“I don’t think I would have ever put the pieces together,” Tingum said.

Suicide Risk and Treatment

Because few researchers study the condition, the cause of PMDD is something of an enigma, and treatments remain limited.

It wasn’t until 2013 that the disorder was added to the Diagnostic and Statistical Manual, the handbook used by medical professionals in the U.S. to diagnose psychiatric conditions. PMDD was officially recognized by the World Health Organization in 2019, though references in medical literature date to the 1960s.

Defining the disorder as a medical condition faced early pushback from some feminist groups wary of giving credibility to stereotypes about PMS and periods. But Ross said patients must be taken seriously.

In one study, 72% of respondents with the disorder said they’d had suicidal thoughts in their lifetime. And 34% said they had attempted suicide, compared with 3% of the general population.

Marybeth Bohn lost her daughter, Christina Bohn, to suicide in 2021. It was only in the months before her death at age 33 that Christina connected her extreme distress to her cycle — no doctors had asked, Bohn said. Now Bohn, who lives in Columbia, Missouri, works with medical and nursing schools around the country to change curricula and encourage doctors to ask people in mental health emergencies about their premenstrual symptoms and cycles.

“We need more research to understand how and why these reactions to hormones occur,” Ross said. “There’s so much work to be done.”

While doctors haven’t settled on a universal approach to address the symptoms, three main treatments have emerged, said Rachel Carpenter, medical director of reproductive psychiatry at the University of Florida–Jacksonville College of Medicine.

Selective serotonin reuptake inhibitors, the most common form of antidepressants, are a first line of attack, Carpenter said. Some patients take the medication regularly; others in just the week or two that symptoms occur.

For some patients, hormonal birth control can alleviate symptoms by controlling or preventing the release of certain hormones.

Finally, talk therapy and cycle awareness can help patients build mental resilience for difficult weeks.

Sandi MacDonald, who co-founded the International Association for Premenstrual Disorders, a leading resource for patients and clinicians, said peer support is available through the nonprofit, but funding for research and education remains elusive.

She hopes the new White House initiative on advancing women’s health research will open doors.

‘I’m Not Crazy’

Both Lint and Tingum, who were diagnosed by medical professionals after learning about the disorder on their own, said a lack of conversation around periods contributed to their care being delayed.

Lint doesn’t remember talking much about periods in grade school; they were often the butt of a joke, used to dismiss women.

“For the longest time, I thought, ‘Well, this happens to everyone, right?’” Lint said of her symptoms. “Has a doctor ever asked me what my symptoms are like? No, absolutely not. But we’re talking about a quarter or more of my life.”

Brett Buchert, a former University of Florida athlete who took time away from campus because her symptoms were so severe, said that when doctors do ask questions, it can feel like boxes being checked: “The conversation ends there.”

Buchert, who graduated with a degree in psychology and now lives in Boulder, Colorado, said understanding what’s happening to her and being aware of her cycle has helped her manage her condition.

Lint and Tingum agreed.

Even as Lint struggles to find a medicine that brings relief, tracking her cycle has allowed her to plan around her symptoms, she said. She makes fewer commitments in the week before her period. She carves out more time for self-care.

She’s also found solace in reading stories of others living with the condition, she said.

“It’s helped me process the extremes,” Lint said. “There’s not something wrong with me as an individual. I’m not crazy; this is something that’s legitimately happening to me. It helps to know I’m not alone.”

This article was produced through a partnership between KFF Health News and the Tampa Bay Times. KFF Health News is a national newsroom that produces in-depth journalism about health issues.

Volunteers Needed for Arachnoiditis Study

By Pat Anson

Kathleen Haynes knows all about the physical and emotional pain that comes from adhesive arachnoiditis (AA), a progressive spinal disorder that causes severe intractable pain.  

She’s had AA for 50 years, after an oily contrast dye used for a myelogram imaging test was injected into her spinal column. The invasive test turned a simple back injury into a living nightmare, with the nerves in her lower spine becoming inflamed and sticking together.

“That oil stayed in my spinal column, surrounded my spinal nerves, and that’s why my nerves clumped together,” Haynes said. “And it just got worse and worse and worse, to the point where I use a wheelchair to get around.”

At the young age of 70, Haines is now pursuing a doctorate degree in Psychology at Walden University. For her dissertation, she’s doing a study about suicide ideation in AA patients. In the past, Haynes had suicidal thoughts herself.

“The pain was just unbearable. And not being believed that I was in pain and not getting the right medication,” she told PNN.

“One of the things that was a deciding factor in doing this study was because I belong to a couple of AA groups on Facebook. And I was struck by the amount of people who go on there and say they're suicidal or say can you please lead me to somebody who does euthanasia?”  

KATHLEEN HAYNES

Haines’ goal is to interview 10 people with AA in the next few weeks who are not currently having suicidal thoughts, but are willing to talk about them. To protect their privacy, participants will be assigned numbers and their real names will not be used. A list of other conditions and sample questions can be found here, along with Haynes’ contact information.  

It’s not the just the pain that makes AA patients suicidal, according to Haynes. Other common factors are being disbelieved, ignored or marginalized by family, friends and doctors. Thoughts about “ending it all” occur so frequently that she thinks every AA patient should be evaluated for suicide ideation.   

“I want to see what people's common denominator is, in talking to them about their suicidality. The goal is to get this study together and get it out to the medical community because they barely recognize AA, yet alone the suicidality their patients face,” she said.

“They need to treat their patients with AA in a way that gives them a desire to live. And get them the treatment team, the providers that they need in order to live fairly comfortable life, despite their pain.” 

Like many other AA patients, Haynes had trouble being believed. She suffered her initial back injury while working for the U.S. Postal Service in the 1970’s, but only recently did the federal government approve her workers’ compensation claim, even though her AA diagnosis and disability happened a long time ago. The Massachusetts woman is now getting appropriate treatment and pain medication.        

To learn more about Haynes’ study and/or make a donation to her research, visit her GoFundMe page.

How I Escaped From the Darkness

By Mia Maysack, PNN Columnist

At this moment in my life, I’ve chosen to continue on -- out of spite, if nothing else. I’ve chosen to quit entertaining the intrusive, dark thoughts that creep in and try to take over.

However, as an individual enduring a chronically ill and persistently pained existence, I’ve spent a lot of time torn between putting forth my best efforts for a great life and just wanting it all to be over.

We’re urged to reach out to loved ones when we’re sad or depressed. But everyone has their own problems and most likely wouldn't know what to do with ours. We don't want to burden anyone, despite their claims that they'd rather get a call about someone’s troubles than receive an announcement about their death.

Our society is sick enough to promote or even force life, but then does little to improve the quality of it for people who need it most.

Rather than sitting with you in the thick of your sh*t, we’re assured that "You got this!" as they wash their hands clean. Your very real experience is disregarded because it makes people uncomfortable.

I realized death was something I’d lusted after when a friend recently “unalived” herself. Underneath the immense hurt and grief, I was soon overcome with envy.

Each time I'd work my nerve up, there was always a reason not to, for the sake of other people. Someone's birthday or a holiday would be around the corner. Somebody would reach a milestone I'd wish to celebrate. Then my deep longing would be set to aside for a while.

I'd even forget about it sometimes, despite the constant gnawing of despair that’d inevitably claw its way through my soul from the inside out.

I would tune out the despair and do my best to concentrate on things like blessings and gratitude instead. Then I'd get down on myself for fixating on all that was "wrong" in my life, as opposed to simply allowing all that was *right* to be enough.

There came a point that it didn't matter how much of myself I gave away to the world, the extent I'd show up for others, volunteer my time, give away my possessions or donate my money.

It also didn't seem to make much of a difference how busy I kept myself or how many meditations I did on thankfulness; with the reminder that we're all one in this world, connected by the singular vibrational pulse of our shared universe.

Blah, blah, blah.

I did everything I could reasonably think of to pour into myself. I loved fiercely, gave my all to those I cared about, did what I could to assist others in their misery, and made it my life's mission to ease suffering in any minor way that was within my capabilities.

The truth is that, even without my spirit exiting this realm, I've already died several times over.  

The selfishness of it all is when a point is reached that we’re no longer able to love this world or those in it more than we absolutely despise existing.

I think this is where people get things twisted when they attempt to make sense of why someone would decide to end their life.

It baffles me to comprehend that there are some who've never felt like this, who are so privileged that they cannot even begin to fathom or wrap their head around it. It also rubs me wrong when people try to make another person’s death all about themselves.

Can you imagine how the actual individual must have felt to reach a point that this was believed to be their absolute last, best and only option?  I think as humans we can only endure so much, to the point when there is no turning back.

Being on your own to sort through it all certainly doesn't make things easier. Your loved ones often misunderstand you or just skip straight to worry. The professionals approach things from a data standpoint and are quick to blemish your mental health record. Authorities report and may even incarcerate you “for your own protection.” Communities consider open discussion of these topics taboo. And the churches will condemn you to hell --- as if you don't already feel like that's where you're living.

Where does a person turn?  Where can we get actual help?

I have come to accept that my most authentic answer, based on my own experience, was nowhere. Nowhere other than within.

I’ve shared what has worked for me to make it as far as I have. I’ve also been very candid about my less than perfect moments. I’ve elevated those around me and did everything within my power to uplift each person I'd ever come into contact with.

I think we can hurt to a point we just do not recover from it. We can only take so much and each of us has a limit. There are certain things that can occur in a person's life where their brain doesn't return to a state of normalcy. You reach a sort of depletion that is permanent, to the point it doesn't seem to matter anymore. Because what we’re enduring feels like it’s not survivable.

A person can reach a point of believing that the pain of their absence cannot come close to the agony they’ve endured just about every day of their life.

I've chosen to prefer being alive and in pain, as opposed to laying 6 feet underground experiencing nothing. That's the bottom line for me. I think the fact that we've hushed these conversations for so long plays a role in killing people. As a society, we need to take a look at that and accept some responsibility.

What we don’t tend to, withers. Thus, I am taking the remaining power I still possess and using it to water myself. I invite you all to do the same.

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is a healthcare reform advocate and founder of Keepin’ Our Heads Up, a support network; Peace & Love, a life coaching practice; and Still We Rise, an organization that seeks to alleviate pain of all kinds.

Keeping Hope Alive

By Mia Maysack, PNN Columnist

In 2022, I was fortunate enough to receive the International Pain Foundation's “Hero of Hope”' award for patient advocacy. I felt and still feel remarkably honored for the recognition, although I am not motivated by any accolade or prestige. I fight for those who can't. I use my voice so others can be heard.

As a patient advocate, I’ve learned the absolute most important thing that I can do is rescue myself – repeatedly. If I don't make it and I'm no longer here, what good can I do or offer to anybody else?

Recently, I've struggled immensely. There have been moments that haven't felt survivable. I sought support, reached out for help, attended therapy, and tried endless lifestyle approaches with little to no progress in how I feel.

It is important for me to express this publicly because I want to drive the point home: An optimistic perspective alone is not enough for survival. You can seek out the bright side, acknowledge how things could always be worse, recognize all your blessings, and be grateful for them -- yet still suffer immensely.

I reached out to someone to vent some of this, in what I'd hoped would be a receptive and safe space. But I was quickly reminded of the extent to which people simply don't know how to navigate others' hardships or struggles.

“I'm having a rough time,” I said.

“Maybe you need to go to counseling,” they replied.

“I tried that again recently. But my medical trauma is extensive. It did not help and actually worsened things for me."

[insert awkward silence here]

"Ordinarily,” I continued, “I’d pour myself into other causes, things, and people. That usually helps, but I am struggling with energy and motivation.”

“Sounds like depression,” they said.

“Depression isn’t new to me,” I explained. “Coping with daily ailments isn’t something that everyone can bear. Depression in these instances occurs by default. It’s an underlying current underneath the symptoms, constantly demanding my attention and effort to accommodate and manage it.”

"I think you need to pour into yourself,” was their reply.

"I have, extensively. But it is as though I'm a cracked cup and it all leaks out,” I said.

[insert another awkward silence]

At this point, I can sense they are uncomfortable, so I rush to ease their pain as mine intensifies. And I’m reminded how there’s just about nowhere for us to turn where we can be adequately received or understood.

“But I will figure it out, I always do,” I declared, tears running down my cheeks.

"Now that's the spirit!” they proclaimed.

I’ve always possessed “spirit” but sometimes it’s not enough. This is why I have such a profound empathy for those who idealize or even follow through on ending life. I see and understand how and to what extent we reach out for help, yet I'm repeatedly reminded that we're ultimately left on our own -- by each other, by our systems, and by society as a whole.

No one wants you to end your existence, yet almost nothing and no one is there to contribute meaningfully to your quality of life.

In observation of this and because I strongly believe in cultivating solutions -- as opposed to fixating on problems – I’m supporting efforts by the American Foundation for Suicide Prevention to raise awareness and talk about how we can prevent suicide and increase access to mental healthcare.

The darkness in me honors yours. It's not only okay, but profoundly necessary to allow that part of ourselves to exist out loud. It’s the only way through to the light. 

I imagine a future where we don't have to beg and plead for basic human needs, and we’re no longer alone in attempting to figure it all out.  This vision keeps me going and keeps the fire of hope alive.

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is a healthcare reform advocate and founder of Keepin’ Our Heads Up, a support network; Peace & Love, a life coaching practice; and Still We Rise, an organization that seeks to alleviate pain of all kinds.

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.

Patients Urge DEA to Stop Cutting Supply of Opioid Pain Medication

By Pat Anson, PNN Editor

Thousands of people in pain are urging the Drug Enforcement Administration to scrap plans to further reduce the supply of opioid medication in 2024.

The DEA recently announced it would cut production quotas for oxycodone, hydrocodone, codeine and other opioids for the 8th straight year, despite complaints from pain patients and healthcare providers that the medications are already in short supply and difficult to get at pharmacies.

The DEA invited people to comment on its plans in the Federal Register. Over 2,400 have so far – many with heart breaking stories to share about not being able to get the pain medication they need.

“I was finally able to establish a reasonable pain management routine but that was disrupted when my regular pharmacy was no longer able to supply my medication (a moderate dose of Norco) and not a single other pharmacy was willing/able to fill my prescription,” said Jessica Ericksen. “One pharmacy supervisor screamed at my doctor on the phone when he called in to try to get my prescription set up with them. I now have a 1.5 hour round trip drive to get my medication, which is particularly challenging for a disabled person who is unable to drive.”

“I am one of the many that has had my life destroyed by the government regulations on pain meds. I haven't been able to get my medications for the better part of a year,” said Paula Perry. “I'm now basically bedridden and praying for death. Stop doing this to people, we are dying and you guys make it worse every year.”

“Most of us in pain have gone through all of the other drugs to treat our pain and these are the drugs of last resort. The opioids don't totally treat our pain but allow us to function,” said Heather Larson. “The DEA needs to stop playing doctor and let the doctor decide what is right to prescribe. If production is cut anymore, people will commit suicide or go to the street for pain medication.” 

“I have already had to jump through numerous hoops just to be prescribed my meds, but now have to call pharmacy after pharmacy monthly to find my meds, because they are out of stock at every pharmacy around me in a 10-mile radius,” said Jill Bartruff, who suffers from scoliosis. “I also had a surgery in September 2023 and could not find a pharmacy to fill my post op pain meds. I was in immense pain and was unable to advocate for myself to get my meds filled. Imagine being cut open and discharged from the hospital with no pain control.”

“Why do you continue to cut supply when legitimate patients cannot obtain their medications? Many are already out of their meds for weeks on end,” an anonymous poster wrote. “You should be able to see you're making the situation worse.” 

‘More People Will Die’

Why is the DEA planning to reduce the opioid supply for yet another year? The agency wants to reduce the risk of opioid addiction and overdose, and is relying on advice from the Food and Drug Administration, which estimates that medical demand for Schedule II opioids will decline 7.9% from 2023 levels.

But opioid production quotas have been falling for nearly a decade and overdoses have still risen to record levels – fueled primarily by illicit fentanyl, stimulants and other street drugs. 

“The proposed quota will, without any doubt, not only cause harm but actually kill people. Research has shown time and time again that restricting access to safe, regulated supplies of opioids does not result in decreased use, but rather increased reliance on an unstable, unregulated street supply,” Alexandra Bradley wrote in her comment. “The DEA is making a massively dangerous move by even suggesting this quota, and it will result in the deaths of many, many people.” 

“Further reduction of chronic pain relief meds such as oxycodone will literally add to the body count (mostly suicide and withdrawal from abruptly stopping meds) already racked up due to the ongoing shortages,” said Ronald Crook Jr. “What an embarrassment and shame that chronic pain patients such as myself who are just trying to maintain some sense of dignity face being told by our pharmacist that the wealthiest, most powerful nation on earth cannot help us because of quotas.”

“All of us patients, we are the compliant ones with our medications. We go through extensive pill counts and urine drug screens to make sure we are not abusing the substance. The overdoses that are occurring are due to heroin and fentanyl, not prescribed pain medication,” said Candace McFarland. “If you choose to cut people’s medications, more people will turn to the street and more people will overdose accidentally on fentanyl.”

“Individuals that are prescribed pain medication already have a hard enough time getting their medications. I can sympathize. I have ADHD and I've been on Adderall for the better part of a decade. And this year every refill day was anxiety inducing because of the shortage,” said Amber Kunkel. “There needs to be an increase in producing both pain medications and ADHD meds. Without access to safe and predictable drugs, there will be a continued increase in people turning to the streets for medication and dying.” 

The DEA and FDA have responded to complaints of Adderall shortages and other stimulants used to treat attention-deficit/hyperactivity disorder. The DEA plans to modestly raise production quotas for stimulants, after the FDA predicted a 3.1% increase in their medical use in 2024.  

But both federal agencies appear to have turned a blind eye to opioid shortages. The American Society of Health-System Pharmacists (ASHP) has been warning of shortages of oxycodone and hydrocodone for months, but those shortages have not been publicly acknowledged by either the DEA or FDA.

Other factors that could be contributing to opioid shortages are strict limits on the amount that can be supplied to pharmacies – regardless of patient need -- under the national opioid settlement. A suspicious order or “red flag” activity could result in a pharmacy being terminated from receiving anymore controlled substances -- putting added pressure on pharmacists to carefully screen patients and their prescriptions.

Another factor is the low cost of generic opioids. Prices for some generic medicines are so low that some manufacturers can’t make a profit and have stopped making the drugs. Other manufacturers can’t raise production of opioids without permission from the DEA.

‘Make Peace with Pain’: How Chronic Pain Patients Can Reduce Suicidal Thoughts

By Pat Anson, PNN Editor

Suicide is an important but difficult subject in the pain community, as many people with poorly controlled pain contemplate ways to end it. In a PNN survey of nearly 6,000 pain patients, nearly half said they considered suicide because their pain was poorly treated.

“Without my opioid medicines I will be completely bedridden in never ending agony,” one patient said. “I fear I will be forced into suicide like so many before me because living in never ending unrelieved pain is not a life worth living.”

“I have been severely tapered to a very inadequate level of pain medication and am in so much pain that I am essentially in bed 24/7. I no longer have a life. It is merely an existence and I completely understand why chronic pain patients commit suicide,” said another.

“I was raised to believe suicide was a sin, but I can't say for sure how I'll feel about suicide in a few years if this pain I'm in continues to worsen,” another patient wrote.

Fortunately, most pain sufferers don’t act on those suicidal thoughts, but some lose hope and sink into despair. According to a 2018 estimate, about a quarter of all opioid overdoses are suicides or suicide attempts.

How can pain sufferers avoid suicide ideation? A recent study published in Pain Medicine suggests that pain acceptance – “making peace with pain” – can help reduce suicide risk.

“We know for a fact that when people are in pain — and a lot of pain in particular — it makes them think about killing themselves because they don’t want to be in pain forever,” says lead author Willie Hale, PhD, Assistant Professor of Psychology at University of Texas at San Antonio. “We know there’s a direct relationship here between these two things: The more pain you have, the more you’re going to have in terms of suicidal cognitions.”

Hale and his colleagues surveyed 207 patients with chronic pain, mostly active-duty military, veterans or family members. Respondents were asked about their pain severity, attitudes about suicide, and whether they thought they were a burden to others.

The study is based on the Interpersonal Theory of Suicide, which holds that suicidal thoughts or ideation often begin when individuals feel rejected by others and believe they are a burden. When combined with a reduced fear of death and a suicide “capability,” those thoughts can turn into suicidal behavior.

Hale says when people learn to accept their pain and make peace with it, feelings of burdensomeness and thoughts of suicide diminish. The pain won’t go away, but acceptance will help people push through the pain and participate in activities that make life enjoyable again. More meaningful activity results in more social connectivity -- helping to reduce feelings of rejection and burdensomeness.

“If you can move people from making no peace with their pain to just being a little bit okay with it, that cuts their suicide risk in half, and if you can get them to a high level of pain acceptance, it gets rid of it altogether,” said Hale. “Even if you can’t actually, functionally do anything to make their pain better, if you can just get them to make peace with it, they’re going to be less likely to kill themselves.”

Of course, pain acceptance will not improve access to opioid medication or prevent someone from being tapered to an ineffective dose. The best way to prevent suicide – not examined in this study – is to give patients appropriate pain relief.

“I attempted suicide as the only means of pain relief left available to me,” a person in pain told us. “Not because I was sad or depressed, but because I simply could not live another 10 minutes with no relief in sight.”

Army Veteran Is Latest Casualty of DEA’s War on Drugs

By Pat Anson, PNN Editor

Becky Snyder and her husband Vance were soldiers when they first met in 1979 at Fort Lewis, Washington. Becky was a legal clerk for the Army, while Vance was a combat medic who later became an Army-trained physician assistant and chief warrant officer. They soon married and had a son.

After years spent defending their country, Vance and Becky could not have imagined they’d windup becoming unintended casualties of the DEA’s failed War on Drugs. Vance lost the love of his life when Becky died last month at the age of 70, after a lifetime of suffering from chronic pain.

“She had scoliosis her whole life, probably congenital. And that made it hard for her to do sit ups in the in the military and probably injured her spine trying to do that,” said Vance. “She could walk with difficulty. Usually when we went out, we used a wheelchair.”

Becky’s back pain progressively worsened and she became bedridden after developing intractable pain from two very serious complications: Complex Regional Pain Syndrome (CRPS) and arachnoiditis, a chronic inflammation of spinal nerves.

Both conditions are incurable and cause severe pain, but Becky found relief under the care of two Los Angeles-area doctors, Forest Tennant and David Bockoff. 

BECKY SNYDER AND SON

The careers of both physicians effectively ended after their offices were raided by DEA agents, Dr. Tennant in 2017 and Dr. Bockoff in 2022. They were targeted by the DEA for giving patients like Becky with complex medical conditions high doses of opioid pain medication — which, in the eyes of the DEA, has no legitimate medical use.

There is no evidence that any of Tennant’s patients were harmed or overdosed while under his care, but he retired in 2018 rather than face a costly legal battle with the DEA and Department of Justice.

Becky and other Tennant patients became “opioid refugees,” scouring the country for doctors because no one was willing to treat them locally. Several eventually found their way to Bockoff, with some traveling thousands of miles from out-of-state to see him and get their prescriptions filled in California. That made Bockoff a target for the DEA.

Last November, the DEA suspended Bockoff’s license to prescribe opioids and other controlled substances, even though he practiced medicine for over 50 years in California with no record of any disciplinary action or complaints filed with the state medical board. The DEA claimed five of Bockoff’s patients were in “imminent danger,” but then waited a year to suspend him.  

Patient Deaths

While Bockoff appeals his suspension, at least three of his former patients have died, including one who committed suicide with his wife and another who died after buying opioid medication in Mexico. Becky Snyder is the most recent death.        

“The last six years have been very difficult, because we couldn’t get the amount of medicine that Dr. Tennant gave. Dr. Bockoff, I mean to his credit he did the best he could, but he couldn’t give the amount that Forest Tennant was willing to give,” said Vance.

“But if there hadn’t been Dr. Bockoff, I think she would have died even sooner.”

Becky didn’t die from withdrawal, but from pancreatic cancer. She was diagnosed earlier this summer after complaining of stomach pain, and the cancer quickly metastasized. Becky didn’t drink, and Vance is convinced that poorly treated pain contributed to her death.

BECKY SNYDER

“I was in Army medicine. Clinically and diagnostically, pain can be an important indicator of what’s wrong with a patient. You have to take the suffering seriously,” Vance told PNN. “I believe pain kills people all the time because it just wears the person out. It leads to all kinds of conditions, whether it’s endocrine, whether it’s cancer, whether it’s depression and suicide. There’s all kind of things that pain causes.”

“Cancer follows intractable pain like night follows day,” says Tennant, who believe Becky’s death was preventable. “Because if you can’t get the pain relieved, you disturb your hormonal systems and your immune system. I can’t tell you how common cancer is in these people who can’t get care. It’s just one of the complications.

“I’m sure if I was still in practice or Dr. Bockoff was, she’d still be alive.“

Vance Snyder says intractable pain took a toll on Becky’s physical and mental health, and she aged considerably in her final years. He believes high dose opioids is what kept her alive.

“For the worst, worst cases of intractable pain, opioids have to be part of the package. The idea that nerve blocks, epidurals, aromatherapy, cognitive behavioral therapy and all those things are going to make a big difference with the worst kind of pain is ridiculous,” he said.

Snyder has joined with several other Bockoff patients in a lawsuit asking the U.S. Court of Appeals to give them legal standing as interested parties in the Bockoff case. 

In an open letter, Snyder urged the court to find a “proper balance” between appropriate pain care and the needs of law enforcement.

“Severe intractable pain does not exist in isolation, but is connected to every other aspect of the patient’s overall health,” he wrote. “Becky is gone now, but there are many thousands of agonized patients who are desperate and on the verge of suicide. Please think about them when you make your decisions.”     

Study Linking Suicides to Rx Opioids Not Supported by Data

By Dr. Stefan Kertesz

Almost everyone has a personal connection to the national overdose crisis that claimed over 107,000 lives last year. Many have also been touched by the rising toll of suicides in the U.S, which took over 47,000 lives in 2021.

Given the pain of those losses, debates over causes and solutions are contentious, especially when they involve the real or speculative role played by prescribed opioids in suicides. In the quest for solutions, researchers and advocates sometimes make recommendations that are not supported by data.

Recently, an article in the American Journal of Psychiatry (AJP) that was widely covered in the lay press, suggested that reductions in the chronic use of prescribed opioids for patients with pain slowed an otherwise discouraging national 20-year rise in suicides. Further, the paper suggests its findings should alleviate concerns about dose reductions in pain patients who have relied on these medicines long term. However, these conclusions were not supported by the data in the study or in any other available data.

Given rising national concern about a burgeoning opioid crisis, many doctors forcibly reduced doses in long-term recipients of prescribed opioids, often under pressure from regulators and boards. Unfortunately, suicides started happening among patients who were taken off their medication.

A series of state- and national-database analyses have documented, retrospectively, elevated rates of mental health crises, suicidal actions or death by suicide among those persons whose doses were reduced, compared to persons not subject to reduction. Because the risk for suicide or suicide attempt remains elevated 1-2 years after the reduction, it has not seemed likely that these tragedies are entirely due to acute withdrawal from opioids. Various authorities have called for caution, as have clinician-researchers like me.

The new article in AJP, from investigators at Columbia University, pushes back. It reports that areas of the country with the biggest declines in opioid prescriptions partly bucked a national trend toward rising suicides.

A few details make it easier to think about what such regional studies can and cannot show. The study relies on suicide data from 2009 to 2017, across 882 “commuting zones” (as devised by the Bureau of Agriculture, areas typically bigger than a county). As mentioned: suicides rose nationally over the study years 2009-2017. Opioid prescriptions dropped from a 2012 peak to the present.

Statistical models tested whether suicide rates rose less in those regions with the greater prescription declines. Of course, regions differ. The study’s models tried to control for that by assigning a single statistical term for each region called a “fixed effect.” The assumption behind a “fixed effect” is the following: As long as the regions differ from each other in “fixed” ways that did not change from 2009-2017, then the models controlled for such differences

This is not a reasonable assumption. We know that regions change in many ways likely to contribute to reductions in opioid prescribing and suicide, without one causing the other. One town might enjoy some economic development, an influx of young families, and new doctors who prescribe less; a decline in suicide might result from all these good things, without the opioid prescriptions having much to do with it. Statistical and graphical analysis could have helped readers learn whether the model’s assumptions were acceptable; but they weren’t presented.

Still, this paper does show that regions with a greater decline in opioid prescriptions (compared to all others) had a smaller rise in total suicides and in opioid-related suicide rates (compared to all others). That regional pattern merits investigation. But there were also exceptions (this pattern wasn’t evident in adults 65 or older). And, for younger persons, unintentional deaths involving opioids seemed to rise most in regions with the greatest prescription declines.

No Justification for Forced Tapering

There would be nothing problematic about this article if all it did was present its data and invite further discussion. The article, however, proposed to address the matter of tapering long-term opioid recipients. The introduction cited two of the studies where suicide risk rose after reduction (including one I co-authored), and attempted to refute them -- an unusual approach for an introduction.

Then, the paper’s discussion argues that it is the patient who receives the prescription who is put at personal risk for suicide, citing a VA paper where opioid doses did correlate with suicide risk. But that discussion omits a much richer Australian study that looked for, and could not find, any association between opioid receipt, or opioid dose, and suicidality.

Buried in the discussion, a caveat was offered, that the results “do not shed light on the clinical pathways connecting local opioid prescribing to individual opioid overdose suicide deaths.”  However, this went unnoticed by many readers. (It was an academic article version of churnalist’s fifth sin: “disclaim and pivot.”)

As a physician-researcher, I care about whether studies are used in ways that misrepresent the risks of curtailing prescriptions in patients with pain. Today, I lead a federally-funded study to examine 110-120 suicides through interviews and record review. We seek to examine them in depth, the way crash-site investigators assess airplane crashes. That’s because we don’t see suicide as simple one-cause affairs.

However, simple stories appeal to reporters. The new paper ignited a storm of inaccurate press coverage, that was seen by many as endorsing the safety of forced opioid reductions, notwithstanding CDC and FDA declarations to the contrary. Speaking to US News and World Report, for example, an associate professor of surgery announced, “for those who have wondered whether curtailing opioid prescriptions could be associated with an increased risk of suicide, this study is reassuring.”

Within days, a widely-quoted, highly-paid expert witness for the plaintiffs in our nation’s ongoing opioid litigation tweeted that the new data “debunk” a “hoax that opioid reduction caused an ‘epidemic’ of suicides” (designation of a suicide “hoax” is not a one-time affair for this expert). 

Of course, no experts had claimed an “epidemic” of suicides. Rather experts and patients observed that tapering can increase the risk for suicide, and were appropriately concerned to avoid that.

Ultimately, reporters repeated the fallacy that regional data can tell us how to care for individual patients. But it was the way the paper was written -- most notably its introduction and discussion -- rather than its data, that drew that interpretation. I suspect that public mockery of suicide risk was not the outcome desired by the authors, given that the final lines of the paper urged caution with opioid dose changes.

Speaking with senior author Dr. Mark Olfson confirmed that sense. He readily offered the following condemnation:

“The results of our recent study indicate that regions of the country that experienced the greatest declines in opioid prescribing also tended to have the greatest declines in regional suicide rates. It would be a mistake, however, to assume that this ecological observation informs the daily clinical management of individuals receiving opioids for chronic pain or refutes clinical research demonstrating risks attending forced opioid tapers.”

Commonsense care of individual patients requires nuance. The best practice is not to force opioid reductions without consent, save when the justification is exceptionally compelling. Even then, the clinician must have a plan to protect the patient from harm, and reverse course if their dose reduction harms the patient.

Individual clinical decisions should not be based on findings from geographic analysis of populations. Clinicians and researchers alike might best avert suicide by seeking a careful understanding of the particular patient, their history, and their context.

Stefan G. Kertesz, MD, is a Professor of Medicine and Public Health at the University of Alabama at Birmingham School of Medicine, and physician-investigator at the Birmingham Alabama Veterans Healthcare System. His views are his own, and do not represent positions of his employers. On Twitter he is at @StefanKertesz. His team’s study can be found here.

This article first appeared in Sensible Medicine on Substack and is republished with permission.

Study Links Rx Opioids to Higher Suicide Risk

By Pat Anson, PNN Editor

Suicide is an all-too-common experience in the pain community. About one in every ten suicides in the U.S. involves chronic pain, and in a PNN survey of nearly 6,000 pain sufferers, an astounding 49% told us they thought about suicide because their pain was so poorly treated.

Many of those patients lost access to opioid pain medication after the CDC released its opioid guideline in 2016. The resulting backlash against opioids by regulators and law enforcement had predictable results on people in pain, resulting in an untold number of suicides by mothers, husbands, veterans, advocates and others – that the CDC didn’t even bother to track.

Just a few months ago, a Georgia man and his wife died by suicide after the doctor who was treating the husband had his license to prescribe opioids suspended by the DEA.

A new study is now casting doubt on the association between suicide and cutbacks in opioid prescribing. Researchers at Columbia University Mailman School of Public Health looked at U.S. prescription data from 2009 to 2017 and found the suicide rate was significantly higher in census regions where there was more high-dose, long-term opioid prescribing.

“The relationship between opioid prescribing and suicide risk is a complex one. This is particularly the case when people have their opioids tapered,” said Mark Olfson, MD, professor of epidemiology at Columbia School of Public Health.

“People can become desperate if their pain is not well controlled. Yet opioids also pose a greater risk of overdose than any other drug class and approximately 40 percent of overdose suicide deaths in the U.S. involve opioids. At a population-level, the national decline in opioid prescribing over last several years appears to have reduced the number of people who died of suicide.”

The study findings, published in the American Journal of Psychiatry, are surprising because they cover a period when the U.S. suicide rate was steadily rising, fueled by factors such as mental illness, substance abuse, economic hardship and social isolation. The study ignores those societal issues and focuses solely on opioid medication as the driving force behind suicides.   

Olfson and his colleagues found that geographic regions with the biggest declines in opioid prescriptions tended to have the largest declines in suicide deaths, including suicide overdoses that involved opioids. If the national decline in opioid prescribing had not occurred, they estimate there would have been 3% more suicide deaths overall, and 10.5% more suicide deaths involving opioids.

“It is not surprising that regional declines in opioid prescribing were found to ameliorate local trends in suicide deaths. These findings reinforce the importance of safe opioid prescribing practices and proper disposal of unused opioids,” they reported. “While some patients with pain need and benefit from opioids without risk, those for whom opioids are prescribed should be evaluated and, if necessary, treated for co-occurring mental health disorders that might otherwise increase their risk of suicide.”

‘Confusing and Contradictory’ Findings

The new study is at odds with recent research in British Columbia, which found that tapering or stopping opioid therapy significantly raises the risk of a patient dying from an accidental or intentional overdose. A large 2021 study of U.S. patients on long-term opioid therapy also found that tapering raises the risk of a non-fatal overdose and attempted suicide.

There are “serious methodological problems” with the Columbia study, according to Stefan Kertesz, MD, an associate professor at the University of Alabama at Birmingham, who is leading a federally funded study of pain patient suicides. Kertesz says the study’s reliance on prescription data overlooks all the other issues in a community that may contribute to suicide.

“Let’s use common sense: If communities can change their level of opioid prescriptions, then surely they can change in countless other ways that might bear on community-level suicide risk. Some communities might have a decline in economic well-being. Others might invest in crisis centers,” Kertesz told PNN by email. “However, this paper’s statistical choices require us to assume that none of the 886 regions changed in any respect that would affect suicide, other than the number of opioid prescriptions.”

Kertesz is concerned the study findings could be used to justify further cuts in opioid prescribing.

“Unfortunately the paper offers a confusing, unnecessary and internally contradictory message about the application of its findings to individual patients, one that distracts from the work of the authors and is likely to be misapplied in ways that put patient safety at risk,” he said.

The study was funded by the National Institute on Drug Abuse.

Studying suicides is difficult for researchers because many suicide deaths are misreported as accidental or of undetermined cause, making much of the data unreliable. Drug experts say up to 30% of opioid overdose deaths listed as accidental may have been intentional.

DEA Suspension of Doctor’s License Leads to Double Suicide

By Pat Anson, PNN Editor

Another chronic pain patient, along with his wife, has fallen victim to the Drug Enforcement Administration’s ongoing war against doctors who prescribe opioid medication.  

61-year-old Danny Elliott and his 59-year-old wife Gretchen were found dead in their Georgia home Monday. Police are calling it a double suicide.

Family and friends say Elliott – who lived with severe intractable pain for over two decades -- was distraught over the suspension of his doctor’s DEA license to prescribe opioids and other controlled substances. Dr. David Bockoff, a longtime pain management specialist in Beverly Hills, California, was notified about the suspension by a Department of Justice attorney last week.

“OMG. I called for my phone appt on Tuesday, apparently just a couple of hours after they took his license to prescribe. Because I was due for my next Rx’s, I’m now totally out,” Elliott posted on Twitter days before his death.

“It’s the end of the road for me with doctors. Not sure what happens now but it’s going to be brutal.”

No reason was given for the suspension, according to Bockoff. The DEA confirmed to PNN that Bockoff’s license to prescribe was suspended, but declined to comment further because the case is under administrative review.

Danny and Gretchen Elliott

“Their blood is on the DEA’s hands,” Bockoff said about the deaths of the Elliotts.

Some of Bockoff’s patients, including Elliott, traveled thousands of miles from out of state to see him because they were unable to find doctors locally who were willing to treat their pain. Bockoff can still practice medicine in California, but without an active DEA license he cannot prescribe opioids – which are essential, life-giving medications to patients like Elliott.

“I talked to my sister on Sunday,” said Eric Welde, Gretchen’s brother. “They were very distraught because they heard that Doctor Bockoff was not going to be able to grant them another prescription because the DEA had gone after him and said he couldn’t prescribe anymore, otherwise he was going to jail or something. That hit them very hard like a ton of bricks.”

Welde says his brother-in-law suffered from severe chronic headaches after he was electrocuted in a freak accident 22 years ago. A former pharmaceutical rep, Elliott was unable to work and was dependent on opioids to have any quality of life.  In the days before his death, Welde says Elliott was so desperate for pain relief that he tried unsuccessfully to buy drugs on the black market.  

“I’m angry at the DEA. And I’m angry at the whole medical system. Because he was clearly in pain. He was not a junkie,” Welde told PNN. “There’s this whole stigmatism towards pain management that you should just be able to get over it. It’s like telling a diabetic that you don’t need insulin anymore. And it’s brutally wrong.   

“But it’s perfectly acceptable to bring thousands of pounds of illegal fentanyl over and sell that on the black market. But this is a more worthwhile cause for the DEA, which just absolutely floors me.”

Bockoff Patients ‘Among the Sickest’

“This unwarranted harassment of long-established pain doctor David Bockoff is almost beyond belief,” says Kristen Ogden, whose husband Louis is a patient of Bockoff’s. The Ogdens live in Virginia and traveled monthly to California to have Louis’ prescriptions written and filled. 

“These patients, including my husband Louis, are among the sickest people there are and yet they have been able to achieve and maintain a good quality of life with Dr. Bockoff's care and the pain medications he prescribed,” Ogden said. “Now Danny Elliott, a man Louis and I were privileged to call our friend, has ended his life because he could no longer endure such horrific pain and his sweet, caring wife Gretchen apparently chose not to live on without him. Who can explain why it was okay to take away this man's medication?” 

“Just sick over Danny and Gretchen. I'm a Bockoff patient as well, all of my meds were due to fill the day his DEA registration was suspended,” says Anne Fuqua, a disabled nurse in Alabama who lives with dystonia and arachnoiditis, two painful conditions that cannot be cured.   

Fuqua and Louis Ogden are both former patients of Dr. Forest Tennant, whose office and home in California were raided by the DEA in 2017.  A DEA search warrant alleged that Tennant ran a drug trafficking organization because many of his patients came from out-of-state and were on high doses of opioids. No criminal charges were ever filed against Tennant, who retired from clinical practice a few months after the raid. 

“I’m alive today because Dr. Tennant and later Dr. Bockoff chose to put themselves on the line for high-dose patients like me,” says Fuqua.  

It cannot be overstated how difficult it is for chronically ill patients like Fuqua to find new doctors. Many pain management doctors have stopped taking new patients or retired, fearing they could be targeted by DEA or other law enforcement agencies for prescribing opioids. 

For some patients, the pain and anxiety become overwhelming. Jennifer Adams, a 41-year-old Montana woman and former patient of Tennant, ended her life in 2018. Friends say Adams’ anxiety about losing her pain medication “was eating her alive.”

‘Not Helpful to Patients’ 

Dr. Bockoff has practiced medicine in California for 53 years and there is no record of him facing any disciplinary action or complaints filed with the state medical board. His office was searched by DEA agents about a year ago and patient records were taken at that time.

Bockoff says there was no warning about his suspension or the reasons for it. 

“You’d have to ask them what their motivation is. I don’t know. But I would say it certainly affects patients. Any patient who has chronic intractable pain is adversely affected by this action,” Bockoff told PNN. “It’s quite scary to think that a person in pain all of a sudden is unable to get their needed medication.” 

Bockoff says the DEA and DOJ agents who visited his office last week left behind a list of emergency rooms in the Los Angeles area, saying they didn’t want any of his patients to go into withdrawal. Such a list would be of no use to out-of-state patients and of little use to those locally. Many patients resist going to emergency rooms because they fear their pain won’t be treated or they’ll be viewed as drug seekers. 

“I’m not sure that’s helpful to my patients,” Bockoff said.       

Legal experts say the DEA has the power to suspend a doctor’s license in “emergency” situations for “imminent danger to the public health or safety.” A doctor then has 30 days to appeal the suspension to an administrative law judge, a process that can take months or years to resolve – too long for patients who have a limited supply of medication. 

While the DEA has no authority to practice medicine or regulate it, the effects of its decisions are far-reaching on both doctors and patients.  

“They’re certainly making judgements on the practice of medicine and they’re not qualified to do so,” said Michael Barnes, an attorney and chair of the Center for U.S. Policy, a non-profit that seeks to improve healthcare and drug policy. “The DEA is a one trick pony. It knows how to raid. It doesn’t regulate and so it employs it’s war on drug tactics against prescribers, including those who have no criminal intent.” 

Ironically, the suspension of Bockoff’s license comes at a time when opioid hysteria appears to be receding, as more people become aware that street drugs are responsible for the vast majority of overdoses.

This month the CDC revised its controversial opioid guideline, giving doctors more flexibility in using their own judgement to prescribe opioids. In June, the U.S. Supreme Court ruled unanimously in favor of two doctors appealing their convictions for “overprescribing” opioids, saying doctors can prescribe opioids outside the usual standard of medical care, as long as they act in good faith.

The California Medical Board is also modifying its hard stance on opioid prescribing, which resulted in hundreds of threats of disciplinary action against doctors who prescribed high doses or had patients who overdosed. 

None of these efforts, however, have reined in the DEA or prevented tragedies like the suicides of Danny and Gretchen Elliott.

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.

To Each Life Their Own

By Mia Maysack, PNN Columnist

May is Mental Health Awareness Month, a good time to write about a topic that needs more attention, but one that makes many of us uncomfortable: suicide.

I know people who have tried to end their lives. There was one who almost succeeded. I was still in decent enough health at the time to be working in the nursing field and it just so happened to be my hospital they were brought to. I entered the room in time to watch their stomach being pumped with charcoal, which is the process used to rid the body of whatever has been ingested.  

After being revived, this person's first words to me were: "Why didn't you let me die?" 

My already broken heart shattered once again into a million pieces. Being much younger at the time, I couldn't begin to understand and took the experience personally. Now I’m old enough to know that someone’s choices about their own life have absolutely nothing to do with me. 

Fast forward a few years, and I found myself in a clinical support group at a time when my pain ran rampant and dictated every aspect of my existence. That’s what led me to the textbook-based, power-point class that was instructed by low-energy penny counters. I was that desperate for help. 

During one session, we broke out into smaller groups. On one side of me, there was someone who'd lived in unmanageable pain for 40 years. They were fed up with prior authorizations, insurance hoops and failed treatment options, and confided to the group that they were making plans to move where medically assisted suicide was legal. 

On my other side was someone who claimed they had never felt suicidal and couldn't begin to relate to the other person. In fact, it made them so uncomfortable that they excused themselves from the conversation and went to go tell on the other individual. 

It's human nature to avoid discomfort, but we don't always know how to create space for others who are suffering without also judging them. 

Between these two extremes, there was me -- literally and figuratively in the middle. After class, I watched as the instructors approached the individual in a hushed whisper and exchanged a slip of paper with a suicide hotline number on it.

I witnessed this person break down -- almost as if they were being scolded -- and couldn't help but think that if it was me standing on the edge and was essentially being told to go away and deal with it elsewhere, that might be the very last thing a person would do. And how that would be such a failure on our part. 

It was then that I began my own support group network, which eventually evolved into more of a self-help resource because I personally feel that while support is important, it can only take us so far. 

Despite living in agony, I spent many years clinging to my medical career. At one point I was working in hospice, where I was confronted daily by the truest definition of suffering -- seeing patients barely hanging on for the sake of their families, despite their desire to let go. 

It was then I contemplated who is being more selfish. Is it the person who no longer wants to remain alive because they are already dead inside or those demanding that they go on living? 

There's no right answer to that question. That isn't to belittle how anyone feels on either end of that spectrum, but more a rhetorical point to ponder.  

For many reasons, these last couple of years have been the most difficult of my life and I came the closest I've ever been to ending my own life. Lack of hope is one of the most dangerous places to be. The darkness is all consuming.  

I'm someone who is known for their positivity. It is noticed when I am not acting like myself or feeling a lower level of energy.  People depend upon me to be level headed and focused on the more uplifting aspects of life, but that can be a heavy weight to bear at times. 

It's a blessing to be in the position that I'm in and provide the type of counsel that I do. In fact, I now understand on a deeper level why my medical career meant so much to me. Showing up for others during their most trying times and hardest moments helped distract myself from my own inner turmoil. 

The same can be said about advocacy. Showing up for others whether or not I feel up to it, guiding them to their own voice and sharing their truth  is a way to make something out of my pain. Perhaps I've endured all that I have to gift others with what I've managed to learn. If being human was just about me and what I go through, there’s no way I’d be able to make it.

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill. 

How to Overcome Suicidal Thoughts and Find Hope

By Ann Marie Gaudon, PNN Columnist

Over the course of our lives, every single one of us will have painful thoughts and emotions in response to adversities and challenges. A sense of hope that we will either cope with or overcome the adversity helps to keep us going.

But when all hope is gone, this can lead to the desire to leave life itself. Hopelessness and helplessness are key factors in the decision to escape a life that is seen as unbearable.

Globally, we lose over 700,000 people to suicide every year. That tells us millions of people are suffering, both mentally and physically, struggling and searching for relief which too often does not come.

Suicide causes heartache and grief for those left behind, affecting families and entire communities. If that weren’t enough, knowing someone who died by suicide is linked to an increased risk for suicide and other mental health challenges.

Suicidologists have developed various theories in an attempt to identify common factors across suicidal experiences. Here are three:

Interpersonal Theory of Suicide

The person no longer feels they belong in a healthy sense, but rather feels like a burden to others. They see their situation as never changing, and therefore hopeless.

Three-Step Theory of Suicide

Step 1: The combination of pain and hopelessness causes suicidal desire.

Step 2: Suicidal desire intensifies when pain exceeds or overwhelms connectedness.

Step 3: Strong suicidal desire progresses to suicide attempts if a capability for suicide is present.

Although this theory differs in certain ways, it similarly advises that psychological or physical pain must be accompanied by hopelessness to cause suicidal desire.

The Integrated Motivational-Volitional Model

This model’s hypothesis is that “entrapment” or feeling there is no escape from the adversity drives the suicidal behaviour. Entrapment refers to a specific sense of being stuck, whereas hopelessness refers to a sense of pessimism. Hope appears to “weaken the relationship between entrapment and suicidal desire.”

The aim of these researchers is to identify the factors which shift suicidal thoughts into suicidal behaviour, in order to reduce or eradicate these factors and save lives. They all posit that hope is necessary even in the face of intolerable pain, whether physical or emotional.

One thing I have learned as a therapist is that people have a choice only if they believe they have a choice. Hope must ring true to a person’s reality.

Seek Social Support

Research shows us that social isolation is associated with increased risk of suicide, while social support is related to a decreased risk. Who in your life’s circle has the headspace to support you, listen to you, and help you when needed? Your spouse, family, friends, neighbours, colleagues, and clergy – can you count on their support?

Sometimes, a person’s only support is their therapist.  Support is a protective factor and necessary as an antidote to social isolation.

Attend to Your Emotions

Trying to avoid or distract yourself from your emotions will only have them rebound back to you and be even more invasive. As emotional pain is one driver of suicidal thoughts, get some help to process what you are feeling.

Can you notice and name what you are feeling? Can you accept what you are feeling without being overwhelmed by it? Do you recognize the message within the emotion? Are you aware of, and capable of self-compassion directed toward your pain?

Quite often I see the need for self-compassion and the need for support from others simultaneously. Once you can let your emotions be just as they are, are you able to shift yourself into soothing your psychological pain? Are you capable of moving into a more valued direction? 

If you have answered “no” to any or all of these questions, a trained therapist can help you.

Broaden Your Perspective

The hopelessness theory of depression tells us that most people who feel hopeless believe their struggles are unique to them (internal) or about them (global struggles), and that these struggles are unchangeable.

Therapeutic work can help to unravel why a person might believe that they themselves are hopeless. Talk and other techniques can reveal where these beliefs began and why. When the origins of erroneous, negative beliefs are understood, they can be replaced with beliefs that are based in reality and not a product of emotional reasoning (e.g. “I feel like I have no worth, therefore it must be true”).

Global struggles can often be tamed with the support of a group. Support groups offer a multitude of protective factors such as encouragement, friendship and guidance. You can be with people who can truly empathize with you and comfort you as an antidote to your own disappointment, frustration and confusion. Peer support can be powerfully protective and also help to dissipate any stigma you may be feeling toward yourself or situation.

Gain a Purpose

The antidote to feeling powerless is to feel empowered. Again, peer support from a support group can contribute to a sense of empowerment and purpose. Reduced isolation, empathy from others, and an increase of information and awareness are all threads in the fabric of assertion, better life choices, and a sense of hope that the situation can be changed. If it can’t, then your perspective about the situation can be improved.

Support groups are effective because they bring together people who all share something in common. This creates a support system. With most gatherings now online, you can find a support group for virtually any issue.

For example, I am a person in pain, so I can find these similarities, support and empowerment from an organization in my country: The Chronic Pain Association of Canada. I also belong to a smaller support group with a very specific ailment in common. One of my diagnoses is interstitial cystitis/painful bladder syndrome, so I also belong to The Happy Pelvis for the same benefits.

The Takeaway Message

No one can make it alone. Life is a collaboration and we often need help and support. There is no shame in this, it is the human condition. Suffering is what unites us -- it does not separate us from the crowd.

Whatever your challenge, you are not alone. Get the help you deserve and surround yourself with supportive allies. When you are feeling more empowered and stronger in general, you can be a part of change. That change may be within yourself or it may be a part of the outside world. Where there is help, there is hope.

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for over 30 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website. 

If you are in crisis and live in Canada, help is available by calling the Canada Suicide Prevention Service at 833-456-4566. If you live in the US, help is available by calling the National Suicide Prevention Lifeline at 1-800-273-8255 (TALK). You can also call 911 for immediate help..

More Evidence That Rapid Opioid Tapering Is Harmful

By Roger Chriss, PNN Columnist

The overdose crisis has motivated a sea change in prescribing practices. Opioid tapering is seen as a part of this change. But the risks and harms of tapering often outweigh its potential benefits, especially when tapering is rapid.

The risks of rapid tapers are well known. The CDC warns providers to “avoid abrupt tapering or sudden discontinuation of opioids,” with a dose decrease of 10% per month a “reasonable starting point.”

But more rapid tapers are very common. A new study looked at retail pharmacy claims for over 810,000 patients taken off high-dose opioids in 2017 and 2018, finding that 72% were tapered more rapidly than recommended by clinical guidelines. Rapid tapering was significantly more common among Medicare patients than in commercially insured ones. Critically, the study also found that counties with high overdose rates had more rapid opioid discontinuation.

The U.S. military health system has also significantly reduced opioid prescriptions. Among active-duty members, a recent study found a 69% decline in prescriptions filled for opioids at daily doses of 50 morphine milligram equivalents (MME) or more.

The Departments of Defense and Veterans Affairs adopted guidelines in 2017 that urge military doctors to taper or discontinue opioids for patients on high doses. But a recent Washington Post investigation found that the VA’s Opioid Safety Initiative was associated with a 75% increase in suicides among veterans living in rural areas and a 30% increase in suicides for veterans in urban areas.

Further, a recent JAMA investigation found that in a study of over 113,000 patients on stable, high-dose opioid therapy, tapering was “significantly associated with increased risk of overdose and mental health crisis.”

“This study highlights important potential harms that are associated with prescription opioid tapering in people with chronic pain,” Beth Darnall, PhD, director of the Stanford Pain Relief Innovations Lab at Stanford University, told Practical Pain Management. “While work remains to understand these associations in greater detail, these findings reveal that patients with chronic pain need better protections within the healthcare system.”

There is, in other words, a clear pattern of harm here. Rapid tapers are destabilizing individual patients and are associated with increased rates of overdose and suicide. The goal of tapering was to reduce opioid-related risks and harms, but the data to date suggests the opposite is happening.

In general, the overdose crisis is getting worse fast. The latest data from the CDC shows over 96,000 drug overdose deaths in the 12 months ending in February, 2021. Opioid tapering has coincided with the rise in drug overdose deaths, though how and to what extent this happens is an open question that urgently requires attention.

There are, of course, risks to prescription opioids and patients may benefit from consensual tapering as described in a federal guideline for dosage reduction. Some people may also do better with non-opioid approaches to pain management.

But the current tapering efforts seem geared toward satisfying a statistical need to reduce prescriptions at the expense of individual welfare. As more and more public health data shows increasing harms without attendant benefits, it’s time to reconsider tapering practices and slow down deprescribing.

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. 

Opioid Tapering Raises Risk of Overdose and Mental Health Crisis

By Pat Anson, PNN Editor

Taking a patient off opioid medication or reducing their dose – a practice known as opioid tapering – significantly raises the risk of a non-fatal overdose or mental health crisis, according to a large new study.

Researchers at University of California Davis looked at medical and pharmacy claims for over 113,000 patients on long-term opioid therapy at a dose of at least 50 morphine milligram equivalents (MME) per day. About 25% of those patients were tapered.

The study findings, published in JAMA, show that tapered patients were 68% more likely to be treated at a hospital for opioid withdrawal, drug overdose or alcohol intoxication, and they were twice as likely to have a mental health crisis such as depression, anxiety or suicide attempt.

“Our study shows an increased risk of overdose and mental health crisis following dose reduction. It suggests that patients undergoing tapering need significant support to safely reduce or discontinue their opioids.” said first author Alicia Agnoli, MD, an assistant professor at UC Davis School of Medicine. “We hope that this work will inform a more cautious and compassionate approach to decisions around opioid dose tapering.”

Agnoli and her colleagues found that patients on high daily doses who were tapered rapidly were more likely to overdose or have a mental health crisis.

“I fear that most tapering patients aren’t receiving close follow-up and monitoring to make sure they’re coping well on lower doses,” said senior author Joshua Fenton, MD, professor and Vice Chair of Research in the Department of Family and Community Medicine at UC Davis.

The UC Davis study is the largest to date to examine the impact of tapering on patients. Previous studies were generally small, poor quality or limited in scope.

“The paper is well done,” says Stefan Kertesz, MD, an associate professor at the University of Alabama at Birmingham School of Medicine, who is currently leading a study of pain patient suicides. Kertesz said it’s important to remember that people on high opioid doses are usually quite sick. Any abrupt discontinuation of therapy for them is going to be risky.

“People who have been on opioids at a relatively high dose are people who have significant risk. They have significant risk of bad things happening. Whether that’s due to the opioids or not is debatable,” Kertesz told PNN. “This is a group of people who often have high medical morbidity, high disability and high psychological vulnerability. Those risks remain after opioids are stopped or maybe become even worse.”

‘My Life Has Been Ruined’  

The 2016 CDC opioid guideline led to significant increases in tapering, as many doctors, pharmacies, insurers and states adopted its recommendation to limit opioids to no more than 90 MME a day — in many cases even smaller doses.

Three years after the guideline’s release, the Food and Drug Administration warned doctors to be more cautious about tapering after receiving reports of “serious harm in patients who are… suddenly having these medicines discontinued or the dose rapidly decreased.”   

In a recent PNN survey of over 3,600 pain patients, nearly 60% said they were taken off opioids or tapered to a lower dose against their wishes. Nearly every respondent who was tapered said their pain levels and quality of life were worse.

“My life has been ruined by the involuntary opioid medicine taper I have been forced to undergo. I spend so much more time in severe pain, in bed. I no longer can participate in most activities with friends and family. I am so unhappy,” one patient told us.

“I was force tapered to 2/3 of my pain medications. I had been on the same dosage for 8 years without problems. Eight months after being tapered, I developed AFib (atrial fibrillation) and I believe it was due to stress and anxiety of under treated pain,” wrote another patient.

“My pain management doctor tapered my meds by 80% and I had no choice but to accept it.” said another patient. “I have declined so much due to CDC Guidelines that I have become completely homebound and have lost any chance I had for quality of life.”

“I was rapidly tapered without monitoring or concern for my health, pain level, mental health or ability to function,” another patient wrote. “The CDC guideline is completely responsible for increased stigma, patient abandonment, reduced access to care, increase in disability, forcing patients to the black market and to much more affordable but dangerous heroin, and sadly to suicide because the suffering is too great.”

CDC Guideline Revision

The CDC has acknowledged its 2016 guideline caused “unintended harms” and is now in the process of revising its recommendations. But the current draft revision contains the same dose thresholds as the original guideline. That’s drawn criticism from the Opioid Workgroup, an independent panel advising the CDC on the guideline update.

“Many workgroup members voiced concern about the dose thresholds written into the recommendation. Many were concerned that this recommendation would lead to forced tapers or other potentially harmful consequences,” the workgroup said in in a report last month.

In crafting its original guideline, the CDC relied on several researchers and advisors who were critical of opioid prescribing practices. One of them is Roger Chou, MD, a primary care physician who heads the Pacific Northwest Evidence-based Practice Center at Oregon Health & Science University. Chou is not only one of the co-authors of the 2016 guideline, he’s currently involved in efforts to revise it.

As PNN has reported, Chou has numerous ties to Physicians for Responsible Opioid Prescribing (PROP), an anti-opioid activist group that publicly advocates for forced tapering. In 2019, Chou co-authored an op/ed with PROP President Dr. Jane Ballantyne and PROP board member Dr. Anna Lembke that encourages doctors to consider tapering “every patient receiving long term opioid therapy.”

Chou also belonged to a state task force in Oregon that recommended a mandatory opioid tapering policy for Medicaid patients.  

“I can’t tell you whether the tapers I do in my practice are voluntary or involuntary,” Chou told The Bend Bulletin in 2019. “I don’t think there’s anything compassionate about leaving people on drugs that could potentially harm them.”

In a 2017 tweet, PROP founder Andrew Kolodny, MD, challenged the idea that anyone was being harmed by opioid tapering.

“Outside of palliative care, dangerously high doses should be reduced even if patient refuses. Where exactly is this done in a risky way?” wrote Kolodny. “I’m asking you to point to a specific clinic or health system that is forcing tapers in a risky fashion. Where is this happening?”

The UC Davis study appears to have answered Kolodny’s question. It’s happening everywhere.

“This study adds to a growing body of retrospective cohort studies that have identified harms associated with opioid tapering,” lead author Marc Larochelle, MD, wrote in a JAMA editorial that urged tapering policies be reconsidered.

“It is increasingly clear that opioid tapering needs to be approached with caution. In almost all cases, rapid or abrupt discontinuation should be avoided.”