Akathisia Stories

On this episode we hear from two remarkable individuals who are at the forefront of a collaborative effort to raise awareness about the critical issues of mental health and polypharmacy challenges faced by our military personnel and veterans. Joining us are Wendy Dolin, the founder of MISSD, and Mike Tellerino, the director of K9s for Veterans. Together, they are working to combat the devastating effects of medication-induced harm, polypharmacy, and akathisia-induced suicidality within our military community.

On this episode, we hear from Denise Collins, whose husband, John, died in 2018, nine days after going on the antidepressant Citalopram, better known in the United States as Celexa. Earlier this year, her book, What Happened To John?: A memoir of enduring love, mental health, and suicide, was released and is available now in paperback and for Kindle. Denise spent three years researching, writing, and doing her best to recover following the tragic death of John and her experience of becoming a widow. The book opens on what Denise calls Day Zero, Monday, the 29th of October, 2018, a day that began "quite unremarkably," she says, but later that day, two uniformed police officers appeared at her front door. "In that moment," she writes, "I was blissfully unaware that life as I knew it had ended and that a living nightmare was about to begin." Her website, denise-collins.com, is aimed at what she terms "corporate clients." She coaches female executives on developing their authentic leadership style and building a sustainable work/life balance. Her specialties are: Guiding People In Discovering and Celebrating Their Unique Personal Power (UPP©) Supporting Those Navigating Life After Loss and Teaching Resilience And How To Embrace Change.

On this episode, we hear from Geraldine and her daughter, Cindy. In 2015 Geraldine's ex-husband, Louis, Cindy's dad, ended his life at age 63, the victim of prescription drug-induced akathisia. [Geraldine] The fact that the doctors kept him on the drugs and didn’t – you know, they don’t brush up and figure out there’s got to be a better way. We can’t just keep doubling up the medication because this man is frantic and calling them at different hours, you know, all hours. [Cindy] He was never suicidal until the akathisia. You know, he did struggle obviously with the depression and anxiety but he never talked about not being able to go on or suicide or anything like that until it was ramped up with the akathisia. Geraldine grew up in Brooklyn and, later, Queens, New York. Spending time in Manhattan, she developed an interest in the arts and attended the Fashion Institute of Technology. She got married and moved to Santa Fe, New Mexico, where her son, Ben, was born. When Ben was 2, Geraldine returned to New York and her second child, Cindy, was born in Westchester. It was there that she raised her children and worked in a family advertising business. After retiring and moving to Sarasota, Florida, Geraldine studied and developed a passion for drawing and painting. Other interests she has pursued are yoga, tai chi, dance, philanthropy, and volunteering with children and seniors. She now has two grandchildren, ages 7 and 10. Cindy grew up in the suburbs of New York City, and now lives in Oakland, California, working as a functional/integrative dietitian. Having lost her dad, Louis, in 2015, she’s been involved in suicide and akathisia awareness, education, and support ever since. As a former journalist, she's an avid researcher, and after her father's death, she found Chicago-based MISSD and resonated with its mission. Living in Chicago at the time, she thought it was a perfect organization to get involved in as a way to honor her dad's memory and spread awareness about potential medication side effects. She did her own extensive grief work and joined the board soon after her dad's death. She believes talking about your experiences and listening to others going through something similar helps with the healing process and from feeling isolated or alone in your pain. She adopted a rescue dog, Finley, within a year of her own loss and loves spending time with the dog on the many Bay Area trails. Cindy dabbles in a variety of hobbies in her down time, including traveling, cooking, yoga, learning the ukulele, and fiber arts. Read the episode transcript: https://www.studiocchicago.com/geraldine-and-cindy-transcript Find the main podcast page at www.studiocchicago.com/akathisia-stories

On this episode, we hear from 24-year-old Marcello, who, prior to being severely injured by a prescribed antidepressant, was a healthy and happy college sophomore at The New School in New York City. Just days after starting the prescription, he suffered a catastrophic adverse reaction to the medication that led to akathisia, inappropriate polypharmacy, and years of suffering. [Marcello] The experience for the sufferer during all of this is nightmarish. It’s unbelievable because you know what’s happening. You know that there’s incredible injury and you also know that there’s likely no help. We also hear from Marcello's mother, Lisa, who has watched her son suffer the devastating effects of akathisia for more than two years. [Lisa] What it looks like from the outside is like a horror show. It’s unfathomable. You know, he’s a very normal looking, functioning young man and suddenly he’s rocking, grimacing, in torturous pain as though someone were torturing him. I know that people with akathisia use the word torture a great deal, and it’s apt.

On this episode, we hear from Kerri Lynn. Kerri says that she was taught to trust doctors, taught to trust prescriptions, taught to trust the assessments she received from hospitals. And she did, but, she says, this trust nearly killed her. [Kerri Lynn] It’s traumatizing what I went through. I never, ever in my life thought a person could feel like that. I never thought a person could think like that, especially against their will. I just knew inside of my soul, this is not me; this is not who I am. Kerri Lynn was born in Long Beach, California, but was raised and currently resides in the upper Midwest. She grew up in what she calls a dysfunctional home and early on gravitated towards addictive tendencies. At 13 she discovered drinking. As she matured, Kerri chased other self-destructive behaviors and relationships, until her self-described out-of-control nature led to an ultimatum from loved ones: she had to find a solution how not to be self-destructive. Pain and circumstances, she writes, drove her to seek help from 12-step recovery, which, as we'll hear in our conversation, led to her 13-year nightmare with prescribed medications. During these nightmare days, she says, her medical vocabulary expanded as she learned words like suicidal ideation, disassociation, delusion, profuse night-sweats, rapid irregular heartbeat, and agoraphobia. Kerri is now 11 years medication-free and stable and says that today she has a strategy for living that works. We spoke in mid-December over Zoom.

On this episode, we hear from author, blogger, researcher, and self-described humanist and humorist Bob Fiddaman. His eponymously titled blog has focused on drug company and regulatory malfeasance since making its debut in 2006. At the time, Bob, an Englishman living in Birmingham, was taking himself off of Seroxat, a GlaxoSmithKline-produced antidepressant known here in America as Paxil. After making a protracted attempt at tapering off of the drug, he eventually decided to go cold turkey, a course of action he strongly advises against. [Bob Fiddaman] "Within 24 hours, I was pretty much in a fetal position, you know, suffering stomach cramps, head zaps, intrusive thoughts. It was pretty bad. And it took about three months of absolute torture to get through to the other side, but I pretty much knew once I did reach the other side — because I was getting all my empathy, for one; that was coming back, so I’d be listening to music that I’d never really listened to before and really focus in on the lyrics. So, you know, my type of music is rock, AC/DC in particular. I started listening to the Dixie Chicks’ “Travelin’ Soldier,” and was listening to the lyrics and the story and I was crying, and then Martina McBride “Concrete Angel.” I was just crying my eyes out at these lyrics. So for the first time in a very long time I was able to sort of, like, feel things again, feel emotion again." Bob Fiddaman was born in London in 1964, the youngest of three children. In 1967, his family moved to Birmingham where he has lived since, though he now splits his time between England and his adopted home in Panama. Bob married in 1987, divorced in 2006, and has three grown children. In 2006, he created the SEROXAT SUFFERERS STAND UP AND BE COUNTED blog, later changing the name to FIDDAMAN BLOG. Bob has met with the U.K.'s Medicines and Healthcare products Regulatory Agency on a number of occasions but has now ceased contact with them. He has also been a thorn in the side of drug manufacturer GlaxoSmithKline, reporting on numerous inquests and wrongful death lawsuits brought against the company by bereaved families. In our interview, you'll hear about some of these, including Dolin v. GSK, the 2017 trial that MISSD founder Wendy Dolin was the plaintiff in. Bob is the author of a 2011 memoir called The Evidence, However, Is Clear: The Seroxat Scandal, and has recently finished a science fiction novel called No Other Man. [Bob Fiddaman: “It's about angels, it’s about numerology, it’s about demons and it’s about love.] We spoke over Zoom.

In this episode, we hear from Heather McCarthy, mother of O'Shea McCarthy, known as Shea, who was born in December of 1988. His love of art and music was apparent from an early age, and by the time he reached adolescence, he had become proficient in a variety of instruments and was the recipient of numerous art awards. Shea excelled in his studies throughout his K through 12 education, especially in his love of nature and science. Upon graduation from high school, he was admitted to Purdue University where he was accepted in the Earth and Atmospheric Science Program. Prior to undergoing corrective surgery for a deviated septum the summer before his sophomore year, Shea was prescribed an extremely large dose of the antibiotic Levaquin. After a three-week course of this veritable atomic bomb of antibiotics, Shea's life would never be the same. Heather remembers that her son became a shadow of the “intelligent, curious, beautiful young man” he was as he was suddenly struggling with anxiety, cardiac issues, insomnia, and a host of other adverse effects caused by Levaquin. Despite telling his treatment providers that he believed his condition was the result of an adverse effect of Levaquin, they chose a diagnosis of bipolar disorder and subsequently prescribed a host of psychotropic drugs that included Risperdal, Lamictal and Ativan. [Heather McCarthy] I think these drugs are so insidious on how they affect your spirit and your mind and, my belief, your soul, because it’s such a slow walk. It’s such a slow chipping away at who he was. And his anxiety was all the time. He, you know, was twitching a lot and he had so much anxiety. And I think he just got tired. And how degrading it is to not be listened to and to not be believed. I mean, we have medical records that says, “I’m afraid,” he’s telling his therapist, “I’m afraid I’m going to crash my car." In hindsight, it’s just this ridiculous, to me, belief that he was — you know, he’s going, he’s getting the treatment, he’s going to get better. Like, this is going to pass. This is a brilliant young man. You know? Like, this is going to pass.” Heather McCarthy is an attorney from Northwest Indiana who holds advanced degrees in public administration and English lit. Prior to establishing a private law practice, she was an executive in the mental health industry. She served in the role of vice president at the administrative services organization for Regional Mental Health Center, the facility that treated her son, O’Shea. After his death, Heather pursued an eight-year legal case alleging medical malpractice of the mental health treatment providers in the wrongful death of her son. She also testified, with numerous other victims, at the 2015 FDA hearings that resulted in additional black box warnings for the antibiotic Levaquin and the acknowledgment of a disability, Fluoroquinolone Associated Disability, of which symptoms include cardiac issues, insomnia, restlessness, and psychosis, some of which can be permanent. Heather also supports the efforts of MISSD in creating awareness about akathisia, a condition that was fatal for Shea after receiving mental health treatment. In this episode we hear two interviews with Heather, the first of which was recorded in late 2019, following the MISSD organization's silent auction in Chicago. At that time Heather's lawsuit was in progress and she was not permitted to make mention of it. Later, we hear an interview recorded just last month, following resolution of that litigation.

In this episode, we hear from Angela Peacock. At age 18, Angela went into the United States Army, where she rose to the rank of sergeant. Five years into her service, the U.S. invaded Iraq and Angela was deployed to Baghdad. For a variety of reasons, the deployment took a physical and mental toll on her, and within six months she was medevacked out of Iraq to recover in Germany. A day after her evacuation, one of the soldiers in her platoon was badly injured, requiring medical assistance in the same military hospital where she was recovering. [Angela Peacock] And he was like clearly traumatized; you know, it had just happened 48 hours prior. I don’t know how to explain it. I just felt, like, out of control. I didn’t know what to say. I didn’t know how to handle it. I just said OK, I can’t hear any more; I’ve got to go. And I just walked out of his room and I walked down the hall, and I didn’t have anything in my mind at that point, to, like, go get help; I just saw the sign; it said “Psychiatry,” arrow. I was like, I need to talk to somebody right now, and I just walked straight into the office and I was like, “My soldier just told me what happened; I don’t know what to do; I’m having a hard time as it is, readjusting to Iraq — or back to Germany. I feel like I almost died,” and then the answer was, here’s a prescription. Angela Peacock is a former U.S. Army sergeant and subject of the documentary film “Medicating Normal.” Diagnosed with PTSD after one deployment to Iraq in 2003, she was overmedicated for it for over a decade and a half. She suffered from akathisia during a medically supervised taper and during withdrawal. Angie is part of the “Medicating Normal” outreach team, having already facilitated more than 150 post-screening panel discussions with communities worldwide. Her past roles include Veterans of Foreign Wars Legislative Fellow, Wounded Warrior Project Courage Award recipient, and finalist for Student Veteran of the Year with Student Veterans of America. She is a mental health advocate, writer, and YouTube creator who travels in her campervan across the United States with her service dog, Raider, in an effort to improve the mental health care system for veterans and civilians alike.

In this episode of “Akathisia Stories,” we hear from Colleen Bell, the loving niece of Stephen O'Neill, who died in 2016 at the age of 48. Stephen was a devoted family man who Colleen describes as having dedicated his life to helping others. A talented singer-songwriter and guitarist, Stephen was well known to pub-goers and nursing home residents in Northern Ireland, playing frequent gigs, several of which were abruptly canceled in the summer of 2016 when he had what was later characterized as a catastrophic reaction to the antidepressant Sertraline, also known as Zoloft. Within 48 hours of starting the prescription, Stephen experienced the scariest night of his life. His heart was racing and his mind was in overdrive with a relentless stream of dark and disturbing thoughts. [Colleen Bell]: He said that his thoughts were multiplied by a thousand. He could feel almost things crawling on his skin. And he felt like he couldn’t sit down. He couldn’t settle. I believe he went for a walk because he wanted to try and shake the agitated feeling that he had throughout his whole body, and he still didn’t feel any better. So he basically said that he just waited for the sun to come up so that he could go and get help. We'll have Colleen and Stephen's full story in a moment. Colleen Bell grew up in a small town in Northern Ireland and studied Law at the University of Ulster and went on to train as a lawyer at Queen’s University. She was admitted to the Roll of Solicitors in 2012 and shortly after emigrated to Melbourne, Australia. On the 29th of July, 2016, Colleen’s life changed forever when her Uncle Stephen died by medication-induced suicide. Returning to Ireland upon the devastating news of Stephen’s death, she settled into a career in local government, vowing to use all of her spare time to ensure some form of justice for Stephen was served. Using her legal expertise, Colleen led the family through the coroner’s inquest where it was agreed that Stephen had a catastrophic reaction to Sertraline and suffered akathisia. Following the inquest, Colleen founded Stephen’s Voice, a Facebook page that aims to generate awareness around side effects to prescribed medication and medication-induced suicide; she also launched Prescribed Harm Awareness Day [July 29] in 2020 and co-founded a pressure group, Families Bereaved by Medication-Induced Suicide, uniting families from all around the world to push for change. Her activism has found her a place on Dr. David Healy’s Politics of Care Forum. A busy mother of two wonderful children under three years old and a King Charles Cavalier named Buddy, she is supported by her husband, Patrick, who has been and continues to be an absolute rock to her. It is Colleen’s dream to one day be in a position to dedicate even more of her time and efforts to Prescribed Harm Awareness. We’re releasing this episode on July 29th, 2021, the fifth anniversary of Stephen O'Neill's death. It’s also Prescribed Harm Awareness Day, which Colleen and Stephen's Voice created in memory of of those who have lost their lives to medication-induced suicide, in support of their families, and of all those suffering around the world with iatrogenic illness. To find out more, please visit https://www.facebook.com/stephenoneillsvoice. READ THE FULL EPISODE 9 TRANSCRIPT

In this episode of “Akathisia Stories,” we hear from Chris Paige. A licensed psychotherapist, Chris had maintained a successful private therapy practice, working face-to-face with hundreds of clients over the years, and taught multiple semesters of psychopathology to master’s-level students, teaching students how to diagnose disorders. In all that time, he writes, no one ever mentioned to be on the lookout for akathisia, or even once uttered the word. When Chris started to take the antibiotic Cipro he experienced insomnia and agitation. [Chris Paige] “So I call my primary and I said, look, if you could just give me 20 — or I actually asked for 10 1-milligram Klonopin tablets just so that I have some on hand if I needed to sleep. She gave me 20 because obviously she didn’t view it as a dangerous drug or anything that she needed to be cautious with. And then it was, you know, like I said, a few months into that, just taking it every three or four days, less than prescribed, when I started to get the really bad adverse effects. "Chronic akathisia is unbearable. And what I really needed was my family and friends to step up, and they didn’t. I think I’m here for a reason and that reason is to make a difference and prevent this from happening.”

In this seventh episode of Akathisia Stories, we hear from Janet Schiel. In 2016 her husband, Joe, was nearing the end of his 37-year career in the pharmaceutical sales business. But prior to making his own announcement of retirement, his boss had a health scare and retired, and several people at the company were let go, thereby doubling Joe's workload and his regional responsibilities, from half the country to the entire country. Meanwhile, Joe and Janet found their perfect retirement home in the Lake of the Ozarks. But Janet believes the reality of buying and selling homes on top of the workload led Joe to call his doctor. Without talking with him in person, the doctor prescribed the generic version of Lexapro, an antidepressant Joe had briefly been on a decade earlier. When he took the drug then, Janet remembers that he couldn't get a grip on reality. [Janet Schiel] “We thought he was having a nervous breakdown, and we drove to the hospital and he wouldn’t get out. He said, ‘Just take me home and I’m going to get off all the medicines.’” In 2016 the adverse effects were significantly worse. [Janet Schiel] "I watched him change and become depressed and paranoid. And I finally said to him about three weeks into this, ‘What are you taking?’ And I’ve never said that to him in my entire life. And, you know, I don’t even know where the words came from, and he looked at me and he told me and I said, “Don’t you remember what happened the last time?” And obviously he didn’t. And I said, “You can’t take this drug.” I said, “You have got to promise me you’re going to wean off of this. And that’s as much as I knew.” Janet Schiel is a drug safety advocate who champions policies and practices to stop medication-induced suicide. In 2019, she founded Butterflies for Joe, a nonprofit organization dedicated to spreading awareness about the negative adverse effects of SSRIs, which tragically precipitated her husband's death in 2016. Like many others who have lost spouses to prescribed harm, Janet also lost her best friend when Joe died. Prior to her husband's death, Janet was the founder and president of Guiding Hand Senior Resources, which helps families navigate the financial challenges of long-term elder care. She currently lives in Denver, Colorado with her dogs Buddy and Annie, and enjoys spending as much time as possible with her two adult children, Luke and Blake, and their partners. We spoke late last year in Chicago.

In this sixth episode of “Akathisia Stories,” we hear from two amazing women: Mathy and Caroline Downing. Mathy was Candace Downing's mother and Caroline her sister. Candace died 16 years ago this month. Her older sister, Caroline, is now 30 years old. She's been outspoken about drug education since losing her sister in 2004. Just a child herself at the time, she co-wrote and narrated the documentary "Prescription: Suicide?" Winner of the Citizens Commission on Human Rights Award for her advocacy at just 18, Caroline remains passionate about her sister’s legacy. As a young adult, she knows that knowledge is power and encourages others to learn as much as they can about medications and their health before making any major decisions regarding their health care. Her blog, although mostly focused on style, doesn’t shy away from talking about sensitive issues such as mental health and losing a sibling. Caroline works in D.C. and lives in Maryland and hopes to write a book about her experience of losing a sibling to SSRIs. We spend the first half of this episode listening to her story, recorded late last year via Skype. Currently Mathy Downing is a nonpublic school teacher working with grades kindergarten through fifth grade, in subjects such as math, reading fluency and comprehension, writing, and counseling. She remains an international child advocate, a position she's had since 2005, the year following Candace's death. Advocacy has played a major part in her life beginning the year Candace died. It began with her testifying in front of the FDA in the summer of 2004, which led to numerous television, magazine and newspaper article appearances. She has spoken internationally about the rights of children with informed consent, drug transparency, and over-medication. She has also been heavily involved in numerous documentaries in which Candace's story has played a key part. Mathy is also now a key member of the Know More About Drugs alliance. KMAD alliance is an informative website for parents so that they can make informed decisions about any drug prescribed for their child. Last year we spoke first by Skype and then, when the Internet connection wasn't ideal, by phone.

In this episode, we bring you more from the Kim Witczak interview featured in Episode 4. Here Kim talks about the legal battle she waged in the courts; her work producing the Selling Sickness conference; more about her work with the FDA panel and its involvement with the drug Chantix; and becoming involved with MISSD and the first time she met MISSD founder Wendy Dolin.

In this fourth episode of Akathisia Stories, we hear from Kim Witczak, whose husband, Woody, was having trouble sleeping in the summer of 2003. He paid a visit to his regular doctor and left with a three-week sample pack of Zoloft. Kim was out of the country for the first three weeks Woody was on the drug; when she returned home, she was alarmed to see what was happening to her husband of almost 10 years. Kim Witczak: “I will never forget: He came in with his blue dress shirt, which he had an undershirt under, and it was just drenched with sweat; dropped his briefcase at the backdoor; went into a fetal position on our kitchen floor with his hands wrapped around his head like a vice, going: ‘Help me, Kim; help me. I don’t know what’s happening to me. It’s like my head’s outside my body looking in. Help me, Kim. Help me.’ And I remember just looking at him – and I had no idea, but we calmed him down. You know, I’m like, ‘Let’s try breathing; let’s try praying; let’s try yoga. If this job is so stressful, quit.’ You know, I had no idea.” Kim shares Woody's story — and her own. Her advocacy work has taken her to the nation's capital not only to testify before House and Senate panels but to serve on the FDA Psychopharmacologic Drug Advisory Committee. Kim Witczak: “Being appointed on this committee I think is a success in that I’m not going to be just the rubber stamp, which I see a lot of. So for me, I think it’s a success that I have a seat at the table. But I’m often the only one that votes no.”

In this third episode, we hear from Kristina Kaiser Gehrki, whose daughter Natalie's prescription drug-induced tragedies began at the age of two and a half, when she was prescribed a powerful cancer drug to combat juvenile rheumatoid arthritis. Around the time of her 10th birthday, Natalie was put on Prozac for mild social anxiety. A year and a half later the prescribing doctor advised Natalie to take a medication holiday. Kristina Gehrki: “When the doctor told her to immediately and cold turkey stop Prozac, within two weeks I had to rush Natalie to the hospital. And what I did was this: I came into Natalie’s room and she said, ‘Mom’ – she was very flat – she said, ‘Mom, I can’t stop thinking about killing myself, but I know I can’t so I won’t.’ And I was just shocked. And I rushed her to the hospital because I didn’t know what was happening and I was so concerned. And what we learned is you’re not supposed to stop cold turkey. You’re supposed to taper. And if you do stop cold turkey, it can cause withdrawal akathisia."

On this second episode of Akathisia Stories, we hear from Gail Regenbogen. In late 2010 Gail's husband, Howard, went on the antidepressant Cymbalta; in a short period of time he changed from the "very outgoing, happy" man Gail had known him to be through 30 years of marriage, to someone who was "real quiet and withdrawn." "This was three weeks into the course of the Cymbalta,” she recounts. “And that night my daughter called me up and she said, ‘We were all driving home and we were talking about dad tonight and I think something’s not right.’ And I said, ‘Well, I’ve noticed a change in his personality, as well.’ And my kids were concerned, and I sort of just kind of let it be because I really wasn’t educated on any of the side effects of any of these drugs. You know, all I knew is that these drugs work and they help people."

We launch the Akathisia Stories podcast series with MISSD founder Wendy Dolin. Over the course of two interviews recorded in the first half of 2019, she talks to Akathisia Stories host Andy Miles about the 2010 suicide of her husband, Stewart Dolin, the work of the foundation she started in his name, medication-induced suicide and cases of chronic akathisia, her work with and on behalf of veterans, the legal battle she has waged in the courts and the status of her petition to the United States Supreme Court, and more.