EPISODE 3: KRISTINA KAISER GEHRKI
[Andy Miles] Hello and welcome to Akathisia Stories, a podcast co-production of MISSD and Chicago's Studio C.
MISSD, the Medication-Induced Suicide Prevention and Education Foundation in Memory of Stewart Dolin, is a unique nonprofit organization dedicated to honoring the memory of Stewart and other victims of akathisia by raising awareness and educating the public about the dangers of akathisia. MISSD aims to ensure that people suffering from akathisia's symptoms are accurately diagnosed so that needless deaths are prevented. The foundation advocates truth in disclosure, honesty in reporting, and legitimate drug trials.
In this third episode, we hear from Kristina 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. [Audio: 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 so I rushed her to the hospital because I didn’t know what was happening and I was so concerned. And what we learned is that 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."
Kristina Kaiser Gehrki has more than 20 years of professional experience in communications and education. She's worked for several nonprofits, corporate headquarters and public school districts. Kristina has authored an accredited akathisia course, developed marketing curriculum for the Virginia commonwealth, provided FDA testimony and presented at several national conferences focused on communicating crisis and risk. Kristina was born and raised in Akron, Ohio, and lived with her family in the Washington, D.C. suburbs for more than 20 years. We spoke recently by Skype.
KG Natalie was born with juvenile rheumatoid arthritis. At the time that she was diagnosed with JRA we were a military family and Natalie was about two and a half. And we got very good health care at the Bethesda naval base, very good health care there at the time when she was young. However, her prescription drug-induced tragedies really began around age two and a half. And I say that because so often people are prescribed pharmaceutical products and they aren’t given the risk versus benefits ahead of time.
Natalie was prescribed Methotrexate, and Methotrexate is a very powerful drug. It’s a drug commonly used for cancer patients. I didn’t know that at the time. This was 19 I think 95. There wasn’t as much information on the Internet then.
AM And she was just two and a half when they prescribed this?
KG Yes. She was just two and a half. It was such a powerful drug it was supposed to suppress one’s immune system because the way arthritis, as it was explained to me, the way rheumatoid arthritis occurs is that the body attacks itself. So they were trying to disable, if you will, her immune system enough to stop the juvenile rheumatoid arthritis. But the drug was very powerful. It was so powerful that Natalie, at two and a half, we were instructed to give it to her on a Friday. We gave it to her in a dropper, kind of what you might give a small pet. We gave it to her in a dropper on Friday in the liquid form, and the reason for that is because it caused nausea and other very unpleasant adverse effects, and they thought if we gave it to her on a Friday, then her dad and I would be able for the three days over the weekend to better help her with the adverse effects, and then also she might on Monday morning be able to go to her play group and have a normal week. But the drug caused anemia, so she had some problems with that, and then also it can seriously impact the liver. And so she had to get, I think it was every two weeks, blood work drawn to see that, you know, that her liver wasn’t being damaged. So that was, unfortunately, when I look back on it, at a young age Natalie, you know, entered the world of prescription drugs; at two and a half it was for a different reason than when she got a rather risky drug at age 10.
The drugs that she got at two and a half, we didn’t have any information about. It really – I look back on that and I’m surprised at how little informed consent we had, and I, again, mention that it was a well-respected, you know, military hospital.
So I only say that because when we talk about adverse drug effects and these terrible, unimaginable akathisia-induced harms, I think one of the important pieces of information I’d like to leave people with is that adverse drug effects and medical error is the third leading cause of death in the U.S. Only two things kill more people every year, cancer being one. People don’t understand or realize that adverse drug effects and medical error is the third leading cause of death. I would imagine many of our listeners have checked out of the supermarket and they always ask, do you want to donate to cancer research, or would you like to donate to diabetes or St. Jude’s Hospital. And that’s all fine and good, but I wonder how the American public would feel if they were checking out of the supermarket and were casually asked, would you like to donate to help reduce the third leading cause of death, which, oh, by the way, is medical error and adverse drug effects? I think people would be shocked.
AM Yeah, I think if you were to ask, you know, a hundred people what the three leading causes of death were in the United States, people might get one or two of them, but I doubt people would guess adverse drug effects and medical error.
KG Well, Andy, that’s really interesting that you say that because before I go on to explain what happened to Natalie at age 10 that led to her nine years of suffering and her death at 19, I’ll just say that it’s an ironic point to note that I was a very diligent mother. I wasn’t a helicopter parent, but I was very diligent. My background: At the time Natalie was born I had an elementary education certification from California in grades K through 8, had a journalism undergrad. I had been a certified teacher. I knew a whole lot about child development, especially early childhood development. But the other Shakespearean, I guess, tragedy in this is that I went on to earn a Master’s in, of all things, crisis communication. So I somewhat am still shocked that I, with that background, asked all the right questions I knew to know. And there were probably more questions than the average person would ask, simply because of my academic and professional background. But you only can ask what you know to ask, and so much of the product risk, when it comes to pharmaceutical medications and drug devices, there’s so much you don’t know. And I think many families, to include my own, we trusted our prescriber but also we had an elevated sense, an over-inflated idea of what it meant for a product to be FDA-approved. I didn’t learn until after Natalie’s death that the clinical trials and the FDA approval process are seriously lacking.
AM So why don’t we talk then about what started to happen at the age of 10. Now, my understanding is that she was given an antidepressant in fifth grade.
KG Yes. What happened is, and I’m so glad you asked about the back story, because, obviously, she meant the world to me and she was a beautiful human being.
Natalie was identified at age, I think, seven – in second grade, she was identified as academically advanced. She had scored in the 99 percentile nationwide. And once they explained about the gifted and talented advanced program, we sent her outside of our neighborhood school so she would have to ride a bus. She was the only person on the bus, so she was riding a big yellow school bus by herself outside of our neighborhood. And I think that was more difficult for Natalie than we realized.
Natalie was a shy, a relatively shy child, and how we got down the path of psychiatric drugging was by accident, if you will. When she started to exhibit some symptoms of social anxiety – for example, she would have her homework and she wouldn’t present it in class or she’d be too shy to sharpen her pencil. So she was shy and had some social anxiety, but it makes me sad to say, it really was nothing at all that should have been treated the way it was, so I feel some undeserved guilt, but the guilt will always probably be with me.
But I took her to a psychiatrist because – I didn’t think a psychiatrist was necessary in terms of any kind of pharmaceutical intervention. I didn’t want that and I sure – didn’t ever cross my mind that she needed it. But I come from a family of medical doctors and health care professionals. Natalie’s uncle is a doctor and her grandmother was a social worker. So we were real believers in medical care, but also, I foolishly thought that a psychiatrist would be best trained to help Natalie identify some concrete skills to effectively overcome some of these mild social anxieties. And in addition, I was rather foolish, now that I look back on it. I believed that somebody who had a medical degree, a psychiatrist, was better trained to give cognitive behavior therapy, which is talk therapy. And it was just one of those things that, when I look back on it, it was the first huge misstep – in our family’s case, it was the first huge misstep, because we never, ever anticipated, nor wanted – when we initially sought therapy, it was the furthest thing from our mind that there would be any pharmaceutical intervention recommended.
So that brings me to the beginning of her – I guess I call it poisoning, which some people don’t like that term, but if you look at medical school education, they do teach doctors in training that all medications, all chemicals that are said to be medications, are really toxins, and I think the average person doesn’t understand. It doesn’t mean that your prescriber is going to poison you or wants to poison you, but you don’t really know until the person consumes it and the effects can be evaluated.
So that’s one thing that I wanted to share with our listeners is that when we talk about adverse drug effects, it’s important to note that it’s a very individual thing on some of these products on how they might affect a person. And why that’s really important is in Natalie’s case, when she was 10, barely 10, she was exhibiting this mild social anxiety and some OCD-like tendencies. But Natalie never got a specific label, she just got the drug.
So the doctor, who was a psychiatrist, prescribed Prozac to Natalie at age 10, around her 10th birthday. At this time, Andy, Prozac did not have any black box warning stating that it can cause suicidality, suicidal thoughts and actions, suicide itself, violence against others. All of this black box, very frightening, most serious warning of any drug before it becomes illegal – that was not in existence at the time Natalie was prescribed Prozac. Unfortunately, when the doctors got letters from the FDA in 2004 saying that this drug now carries a black box warning – all SSRIs: Prozac, Paxil, Zoloft, et cetera – so the doctors got a Dear Doctor letter from the FDA. Natalie’s prescriber never thought to tell us about it, never shared it with us. So that communication and that informed consent was really, when I look back at the first misstep that could have saved my daughter from years of suffering and saved her life, that one piece of very simple but critical communication – had that not been withheld or not communicated, had informed consent been given and re-evaluated when there were changes to this drug’s serious label, we wouldn’t be doing this show today.
But anyway, so, Natalie started developing very unusual symptoms after Prozac.
AM How soon?
KG Well, at first the Prozac seemed to be helping. And this is interesting because the clinical trials are such short-range trials and the drugs were never meant for long-term use. I would just say many of your listeners are probably going to be surprised that they may have been on Celexa or maybe are doing well on Celexa nine years in, but they don’t realize that these drugs were meant for short-term use and they were never tested for more than several months in clinical trials. That’s really huge information. But when Natalie first got the Prozac, she seemed – I don’t want to say she was doing better; that sounds – that’s wrong, but she seemed to have less anxiety. She cared less about whether she sharpened her pencil in front of students and she seemed a little more outgoing. And so initially, I would say that we were kind of pleased. We really saw an improvement. But what I’ve come to find out is that these improvements initially for Natalie – there’s a lot of placebo effect, so you can’t take that placebo effect away, but also there’s no drug that takes away all your bad or sad feelings and leaves all your good ones. And so I think one could say if Prozac was effective for Natalie the first five or six months, I would say it was less because it helped her with anxiety and probably more because it had a numbing effect on her affect and on all emotions. And that’s where we get to the first serious adverse effect.
Natalie began to not feel much of anything, and she was a very flat affect. You know, she didn’t smile much. Her whole face kind of changed. She seemed solemn. And there was very little joy. She didn’t have anxiety, but she just seemed like a numb little girl, and it worried me.
AM And would you describe her as having been a joyful child prior to that?
KG Oh, yes. You know, Natalie was, if I should dare say, the perfect young child. I remember playgroups and in school people would remark on well behaved she was and how helpful. And if you look at all of her citizenship grades, she was well adjusted and she was very happy. She was an excellent artist. I mean, she won several art contests at a young age and was a very compassionate young child. She cared a lot about the environment and about animals. So she had no problem prior to the Prozac showing affection.
AM The reaction that she had to being on Prozac was to kind of dull her joy and her affect. And eventually she was put on a stronger drug. In fact, the Prozac was supplemented, not replaced. Is that correct?
KG Yeah. I’m so glad you asked about that. About 18 months after Prozac, her prescriber told Natalie and us that she wanted Natalie to take a medication holiday – and that’s how she put it in the notes. And so Natalie – it was May and the school year was over and Natalie was instructed to take a medication holiday. Now, at this time, the doctor had already received the FDA letter more than a year earlier. And there was a black box warning on the drug that we were unaware of because we had been taking it as we had before and never thought to go look (inside ?) the package for new information. But anyway, what was done to Natalie is that 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. Oh my gosh, you know, what in the world? And so I rushed her to the hospital because I didn’t know what was happening and I was so concerned. And what we learned after Natalie died eight or nine years later is that you’re not supposed to stop an SSRI like Prozac or Zoloft or Paxil. 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. And since our topic today is akathisia, it’s a good lead-in.
So Natalie followed the doctor’s directions. She stopped the Prozac cold turkey. Unbeknownst to us, it caused withdrawal akathisia. It also caused serotonin toxicity. So when we got to the hospital, Natalie was – I think she was going in and out of psychosis, in the sense that she just didn’t seem to be there. And what happened was, instead of telling us at the hospital that there was a black box warning on this drug, Prozac, that it’s not supposed to be cold-turkey discontinued and that doing so can cause akathisia and psychosis, instead of telling us any of that, they gave Natalie Risperdal. So they restarted Prozac and they added another drug called Risperdal. And Risperdal is an antipsychotic. It’s a very powerful drug that, again, at the time we were given Risperdal, we didn’t know it was really being given because it was being given because of another adverse drug effect, not because of anything Natalie had that was an illness organic to her. And at the time that she was given Risperdal, the Justice Department in the U.S. had already settled with Johnson & Johnson, the makers of Risperdal, and at that time I think it was one of the largest criminal settlements ever because Johnson & Johnson had actively and illegally, criminally marketed Risperdal to children and it wasn’t meant for children. [Learn more]
So I’ll just say, we were given two drugs, some of them off-label, never meant for kids, not tested on kids, and never once were we informed of these things.
AM And this is like a 10-, 11-year-old girl.
KG Yeah. She was on Risperdal and Prozac. I call that summer the lost summer, because she was just strung out. She just slept all the time. It was just so sad. Risperdal actually caused, if you could picture an 11-year-old pre-puberty girl who was of a fine, normal body – Natalie was only – she was a tiny girl. She was a tiny girl height-wise and a normal weight. But they gave her Risperdal, and by the end of the summer, we discontinued Risperdal because, one, she was just a zombie and, two, it caused her to gain so much weight in such an abnormal fashion, she developed a pear shape. Her breasts started to produce milk – I mean, prolactin. She started getting discharge from her breasts. Of course, no doctor ever told us it was the Risperdal, but I found out later it was. And more importantly, for a poor 11-year-old who has obviously a concern about her body, as most 11-year-old preteen girls do, it caused permanent disfiguration in terms of all-over stretch marks. So after the end of the summer, three months on this drug she didn’t need, she was permanently disfigured, and that was a lot for an 11-year-old to look in the mirror and see that she was never going to be the same.
AM So those are significant physical effects, and at the same time she was exhibiting really troubling mental effects from this. She told the hospital that she hated everything and everyone and didn’t know why.
KG Yes. That’s really important you bring that up. She was asked to write down her feelings at the hospital and she said something to the effect of “I hate my mom, I hate my dad, I hate my brother, I hate my life, but I don’t know why.” And then at the bottom of that note at the hospital, she wrote, “I wish I could stop thinking about wanting to kill myself.” And we learned after Natalie’s death that all of this was very well known. It was well known in the clinical trials. It’s called akathisia. The suicidal thoughts and violent actions and violent nightmares and just terror, the agitation – these are all clearly listed adverse effects that were known in the clinical trials and systemically covered up.
Andy, I’ll say that, real quick, in the clinical trials of these drugs, when even healthy volunteers in the clinical trials took these drugs and started exhibiting signs of akathisia, some of the drug companies gave them sedatives like Valium to mask the symptoms of akathisia so that they could remain in the clinical trial and the trial would have a better outcome when they go to present the cherry-picked data to the FDA.
AM So not only were you only belatedly informed of these many effects, but she as a preteen is dealing with all of these feelings and is basically attributing them to her own psyche and her own self. I mean, she’s thinking that this is just her, and it’s making things worse, wouldn’t you say?
KG Yes. And I’m really glad you brought that up because that kind of brings me to the last adverse effect before Natalie died, so I can make sure I let our listeners know.
So when you tell a person that all of their adverse drug effects are not really that at all but they’re un-diagnosed, indescribable mental health problems –
AM And she was being told this?
KG She was being told that they didn’t – every couple months when I look back now at her charts, there’s another guess. It’s like, if you look at her charts now, sometimes you don’t know a story’s a story until you reach the end and then when you get to the end and you look back at the charts, it just reads like, oh, my gosh, the worst tragedy. So it was like now she’s got OCD but maybe not; now she has major mood disorder; now she possibly has personality problem. I mean, there was never a definitive diagnosis, and the pathetic part about that is because the people who were – whose own pharmacological intervention were destroying the patient they professed to help had no clue, unfortunately. It’s not acceptable behavior. It is malpractice, but I think it happens much than you know.
So when you tell somebody, when you gaslight them, when you tell them that what they’re experiencing isn’t real but it’s a real illness, which is so bad you don’t even know what the name is, I shudder to think how scary that was for Natalie.
It was 2013. It was on February 6th that Natalie died. So I want to get to that.
Natalie had several good years in between the getting off the Risperdal and the Prozac. She had several good years trying to get her life back. And then around age 16 she was prescribed Zoloft and they told us it was a different drug. So we didn’t know that Zoloft was really an SSRI like Prozac. We just were clueless; we did not know that it was the same type of drug.
So once you have an adverse effect with SSRIs, you’re more likely to possibly have one in the future, but to get to the end of this tragedy is that she was prescribed Zoloft and she started developing what we now know is akathisia.
AM And with the Zoloft, she was prescribed 100 milligrams and then it was raised to 150 and then it was raised to 200 milligrams, which is the legal limit. She’s a teenager and these increases were not even being disclosed to you. Is that correct?
KG Absolutely. So what happened is in October of 2012, Natalie’s doctor, without informing us, because she was over 18 then – she was just 18 at that time. The doctor mistakenly misdiagnosed akathisia as an anxiety disorder or worsening OCD. We’ll never really know for sure. But the doctor misdiagnosed akathisia and mistreated akathisia. And then she decided to increase the akathisia-inducing drug, which was Zoloft. So on October – I think it was November, rather – Natalie’s Zoloft went from 100 to 150 milligrams. It was 50 percent increase unbeknownst to us. And Natalie was only 110 pounds. And then on February 4th, 2013, when Natalie was 19 and about five weeks old, she was having flu-like symptoms, she was tired all the time, she was vomiting, she was shuffling her feet when she was walking, she thought she had the flu.
So what happened was she was a freshman in college and she called the doctor on February 4th, the psychiatrist, and said, “I’m too sick to come in; I’m afraid I have the flu.” I think she must have been weepy on the phone, too. I’ll never know for sure because we were never able to get Natalie’s full medical records because after her death the doctor claimed that they were destroyed in an office flood. I don’t kid you.
But what happened was, over the phone on February 4th, 2013, the doctor, without ever seeing Natalie, without ever doing any kind of clinical assessment, she told my daughter, Natalie, to start taking the maximum legal dose allowable of Zoloft, and since Natalie had the drug in hand, she didn’t need to go to the pharmacist and get more of it or ask me. So Natalie actually took the maximum legal dose of Zoloft on February 5th, 2013. That was the first day. And on February 6th, 2013, Natalie died a Zoloft-induced psychotic death. She died a terribly violent, terribly uncharacteristic death, and what the medical experts found after Natalie’s death, when she was under the influence of the 200 milligrams of [Zoloft] for a tiny, tiny body, is that the drug maximizes in about five or six hours.
So Natalie had a normal day that morning. She went to the orthodontist. She was very forward thinking. She printed out her homework for college. She baked Valentine’s cookies early, icing them – totally normal – texted her friends about their weekend plans. And then around five to six hours after taking the maximum legal dose of Zoloft, she wrote down a quick note and said, “I keep coughing up blood,” and she probably in much of a haste and a psychotic, very restless, terrible akathisia-induced stupor, she violently ended her life.
AM And you don’t consider Natalie’s death a traditional suicide.
KG Right. What I would really like to share is that these kind of deaths and what happened to Natalie are not traditional suicides and we do a real disservice to those who have died in this manner, but we also do a disservice to ourself by not discussing accurately the facts. So Natalie’s death is what is called iatrogenic, and iatrogenic means caused by medical error or medical intervention. Natalie died under a drug-induced, agitated state called akathisia. It’s not a traditional suicide. Most people who die of self-sustained injury while suffering from drug-induced akathisia, they don’t want to die. They want to end this unimaginable suffering. And that’s what happened with Natalie. I’m certain that she did not want to leave us, but she thought that this was the only way to end this terrible, terrible what we now know as a drug-induced disorder. So I don’t think of Natalie’s death as a suicide, and I don’t call it that.
What happened to Natalie is a chemical abduction, and it’s a chemical kidnapping. And Natalie exhibited a lot of signs of drug toxicity in the weeks and days before she died, but because I was never informed – I knew that there were changes, but I didn’t know what they were. And I remember remarking on some of the changes, like when she started shuffling her feet, I told her father, maybe she cut herself shaving by accident and she doesn’t want her thighs to rub, or maybe she’s got a rash. I was trying to figure out why she couldn’t walk when she was shuffling her feet. But that brings me to the physical nature of these chemical abductions.
Natalie had skin crawling. She complained of headaches, nausea. She had a different kind of walk, very much noted in the medical research. These are signs of drug toxicity. Even if you got this drug for depression, which she didn’t, depression doesn’t cause these kind of things. And so we need to look at this as just a drug toxicity. It’s somewhat unfortunate that akathisia causes so many mental health-type symptoms, and it’s unfortunate that one of the hundreds of drugs that causes akathisia tends to be given for supposed life challenges in the mental health area, because what that does is it makes it more difficult for the average person to understand that these symptoms are drug toxicities. They have nothing to do with whatever you may have gone to the doctor for, your situational challenges in life.
I want to end, if I will, or at least get in really important point so that people don’t think that perhaps I’m not certain or that I’m a grieving mother who’s looking for answers in a difficult situation. I assure you I’m not. I’m grieving, but I’m not looking for answers; I got those answers.
After Natalie died we contacted several international, well-respected medical experts, and the first time I ever heard the word akathisia, Andy, was about four weeks after we buried Natalie. I was interviewed for 90 minutes. It was all taped. The person that interviewed me said, “I’ve heard hundreds of these cases.” He testifies in several court cases when this happens. And he said, each one is worse, seemingly worse than the one before. But Natalie’s case was like a textbook in terms of the symptoms and the time and when she died. And after she died, we had her blood tested after her death. We had to fight the coroner to get the blood because the coroner doesn’t test for these things, and they told us in Virginia they didn’t know if they would have enough of Natalie’s blood left to give us, which was quite disturbing.
But anyway, we were able to get some blood from my child who had died and we sent it off to a lab. And you can have a couple different kinds of blood tests run. The tests showed that Natalie was not able to quickly and efficiently destroy the toxins as fast as they were prescribed. So Natalie’s after-death blood test showed that you could have 200 milligrams prescribed, which is supposedly a therapeutic dose, although it’s the maximum dose for anybody; she was so tiny. So you could have that prescribed, but you could end up with maybe a big overdose that built up in your brain.
AM I wanted to get back to the diaries that you mentioned. So I’m assuming that these are words that she wrote that you only were able to see after she took her life. Is that correct?
KG Yes. After Natalie ended her suffering, I then found the diaries, and it was an eye-opener. I will just say that I knew Natalie very well and we were very close. Her last summer of life before she ended her suffering, we went to Jamaica and had a mother-daughter high school graduation trip. You know, people might think, hmm, why wouldn’t your child have talked to you about some of these things that were happening her last weeks of life as she was increasingly poisoned? And I’ll just say, the sad irony is that Natalie, who loved me very much, I’m certain she didn’t want to worry me. It wasn’t that she didn’t trust me, but she didn’t want to worry me. And also, Dr. Peter Breggin, a very, very well respected psychiatrist and medical expert, he states that when you’re suffering the initial akathisia, at least in Natalie’s case, that after the doctor increased it by 50 percent, Natalie probably had periods of akathisia and maybe periods of mild psychosis, but they were intermittent as the drug was, you know, maximizing in the system and then she was processing it out. But on the day of her death, after the second day of 200 milligrams, she had a buildup and was quite psychotic from the drug, and unfortunately didn’t live long enough to process it out.
AM And having written that her death would not be worth mourning, that might be a tip-off as to her thinking in terms of sharing this information with you.
KG Yeah, it’s really important because the quick – she wrote a very quick note and it was very quick and it was written hastily, and how I know that is because it was ripped out of a notebook so fast that the paper was ripped. And this is a person who I said at the beginning was very methodical and meticulous. But what it said was, “I’ll be happier this way.” It didn’t say I was depressed, it didn’t say I hate my life; it said I’ll be happier this way. And it was left next to the note that said “I’m coughing up blood.” But the ending of the note – it was quite sad. It said, “Move on, I’m not worth mourning.” And I think what that was is she had suffered so long, with so many symptoms that she was told that she had all these diagnoses or possible ones that were so awful, I imagine that Natalie felt that there was no hope for her and that she was a burden, even though she wasn’t a burden. Leading up to her death I am certain she believed what the doctor told her and that is that you have a serious mental illness; we don’t know what it is but there’s no cure.
AM In this story, there are a lot of reasons to be angry. Is anger still something that you’re working through, or has that receded at this point?
KG That’s an interesting question. Yeah, here we are in 2019 and Natalie died in 2013. It gets easier to talk about it and probably because it’s not as shocking to me since I’ve had six years to digest that my child’s life was taken from us. It doesn’t get any easier missing her.
As far as the anger goes, I have to say, I’m always going to have anger when I consider these things: It was more than a hundred years ago that a Czech neuropsychiatrist coined the term akathisia. More than a hundred years ago he coined the term akathisia, and here we are in the 21st century and doctors don’t often even know the word, so that makes me angry. It makes me angry that before my daughter was ever conceived in 1993, the drug companies that made this product knew that it caused akathisia and they knew that akathisia caused unwanted death. So when I look back at all these things, yeah, it makes me angry. But what keeps me going is I realize that by talking about this, people can be safer health care consumers in all sorts of ways to include informed consent in all sorts of products and all sorts of medical devices. And so I guess my anger is channeled in a positive way. I get letters and calls and emails from people who say that seeing Natalie’s story has helped them be safer and make better decisions for themselves or their family. And that is very gratifying.
AM Do you want to say anything about the impact that it had on your family? You mentioned that you have a son younger than Natalie.
KG Sure. I do want to mention that. I’m glad you asked.
You know, when a person dies a self-sustained death while suffering the adverse drug effect of akathisia, it’s often mislabeled as a suicide, and that is a very damaging thing to the family, especially to surviving siblings, because it makes surviving siblings experience shame and/or worry that maybe this is something that would run in the family. And while I certainly don’t think there should be any shame even around a non-drugged self-harm death, it was difficult for my son, who was only 16 at the time, to realize what was really the demise of his sister. So I think the American Foundation for Suicide Prevention – when you talk about anger, the American Foundation for Suicide Prevention is supposedly a nonprofit grass roots that exists to reduce suicide. I found out after Natalie died they are pharma-funded; they take a lot of pharma funding. And if you go on their website, you will find nothing at all about akathisia. You will find nothing. And I find that very disappointing, because if we are really going to reduce unwanted, akathisia-induced deaths, we have to tell people what akathisia is and how to properly treat or avoid it.
AM What is the most important thing that someone listening to this can take away from your experience?
KG I hope that our listeners today will benefit from the knowledge I’ve given and they will trust their gut, because I think whether it’s this kind of adverse drug effect akathisia or another adverse drug effect, parents especially – parents, you are the expert on your child. I too was somewhat abducted because as she had more and more symptoms of drug toxicity, but we didn’t know it, I lost my gut instinct and I trusted people that in the end I think shouldn’t have been trusted.
So I’ll say please, get the information; go on alternative sites that maybe have nothing to do with pharma; have independent information about what were the drug effects that actual users experienced. Rxisk.org is an organization where you type in a drug name and it will give you listed effects that actual consumers experienced. So I think knowledge is power, but don’t give away your gut instinct.
AM Well, thank you for sharing your story with me today.
KG Thank you, Andy. It’s a really big topic and I so much appreciate the time you gave me today. Thank you.
If you'd like to find out more and get the best information about this important topic of akathisia, the MISSD website is a great place to start.
[Wendy Dolin] "If you go to our website, the section that says What Is Akathisia? you will see the two MISSD videos, as well as we have an educational PDF that you can print off. We also are on Facebook and Twitter. If you like this podcast, learn more about akathisia and just send it to your contacts."
That's MISSD founder Wendy Dolin.
You've been listening to the Akathisia Stories podcast. We'll have another episode next month. If you'd like to share your own story for this podcast, please email email@example.com and please share this podcast and subscribe. I'm Andy Miles and I'd like to thank Kristina Gehrki for her time and candor, and I'd like to thank you for listening.