EPISODE 2: GAIL REGENBOGEN
[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.
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happy" man Gail had known him to be through 30 years of marriage, to someone who was [Gail Regenbogen] "quiet and withdrawn." "This was three weeks into the course of the Cymbalta. And 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.’ 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'll have Gail's full story in a moment. First, I have this MISSD update, provided by Kristina Gehrki, whose akathisia story we will hear on an upcoming episode of this podcast. Kristina writes:
MISSD was recently in London presenting to hundreds of doctors attending the Royal College of Psychiatrists’ International Congress. The MISSD presentation, entitled, “Preventing a Crisis Before It Happens: Identifying & Responding to Akathisia," was well received. Comments after the session included:
“We need to hear more often from service users."
“Doctors can learn much from listening to patient experiences.”
And: “Akathisia training should be mandatory for all medical professionals.”
While akathisia is an adverse drug effect unrelated to mental health challenges, the MISSD presentation to the Royal College of Psychiatrists was particularly important given that akathisia is caused by several different drugs commonly prescribed by psychiatrists.
To improve patient safety and reduce risks, psychiatrists and residents in training need to understand, identify and respond to akathisia before it becomes a crisis.
My thanks to Kristina Gehrki and Wendy Dolin for that update.
Gail Regenbogen was born 63 years ago in Detroit, Michigan and raised 14 miles north of Chicago in the village of Wilmette. She attended New Trier High School and went on to study elementary education and history at Bradley University in Peoria, Illinois and was an elementary school teacher in the Chicago public school system. She married Howard Regenbogen in 1980; they raised three daughters together. She and I spoke in June 2019. Here is our conversation.
AM So can you tell me about Howard and the marriage that you had, and give us that back story leading up to –
GR OK. So by education, he was a criminal attorney but was involved in a family furniture business. We had met in 1978, the winter of 1978, and we married in March of 1980. We were married for 30 years. And in the fall of 2010 he started to develop some shoulder – a shoulder injury. He was a tennis player, his first love. And he wasn’t able to play as much or as hard as he would have liked and so he was a little stressed out. It was – he was in retail and the economy wasn’t great. So he had a lot of work-related anxiety, as well. And I suggested he go talk to someone because I was afraid he’d, you know, stress himself out so bad over the situation, which wasn’t worth stressing himself out about.
We had a great marriage. We had three adult children. One of them was still in college, one was married, and they were all self-employed, doing well, great relationship with their father. There was nothing to worry about. We were financially secure.
And he took my advice and went to a doctor that his internist recommended, a board-certified psychiatrist. And he went into the office, suggested that he needs to talk to someone to kind of reduce the level of stress he has and the anxiety over not being able to play tennis, which was his stress reliever. And the doctor said to him, “There’s really nothing that talking will do; I have a drug that’s going to make you feel great; it’s going to take about four to six weeks, but you’re going to feel great,” and threw some samples of Cymbalta at him, which is an SSRI.
Within weeks, I noticed a drastic change in his personality. He developed a rash on his face. He had some flu-like symptoms, which, you know, I just kind of brushed off as him maybe, you know, having a little case of the flu. And we went out to dinner in the middle of November. It was my daughter’s birthday and we were out with my three adult children and their significant others. And everybody noticed that my husband was very quiet. Usually he is a very outgoing, happy, you know, sort of person, and he was pretty depressed, which was not characteristic of his personality.
AM And so this was how many weeks into that –
GR This was three weeks into the course of the Cymbalta. 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.
AM And was that – would you say that was his attitude about it too?
GR Yes.
AM So when the doctor suggested that talking was really not going to have – be much help and prescribed this drug, Howard basically thought that that seemed to make sense and –
GR Like this was a golden key; you know, this would be the answer to his issues. So yeah, it made complete sense to him. I mean, here’s this fairly prominent psychiatrist in Winnetka who prescribes a medication for him, and, you know, he was brought up to believe that doctors know what they’re doing.
So after that night, I had a small dinner at my house with some family a week later and my sister-in-law called me the next day and also mentioned that she noticed my husband seemed to be a completely different personality, and she had noticed that he seemed withdrawn. And usually he’s the life of the party. And he was real quiet and withdrawn, and she wanted to know if he was OK. And I said, well, I think he might, like, for the first time – because he had never been – you know, I mean, you would never diagnose him as a depressed person ever. He had agitated anxiety always; you know, he worried about things, you know, like: “Oh, why did we plant the tree so close to the front door? In 20 years it might be a problem.” You know, things that – typical, you know, anxiety.
AM But this was the first time that it was necessary – that he found it necessary to seek the advice of a psychiatrist?
GR Well, he had had a panic attack maybe about 10 years earlier. We were on vacation and he thought he was having a heart attack. And when he settled himself down and realized that it wasn’t, I said, “I think you maybe just had what’s called a panic attack.” And he went to his internist, who then also sent him to a doctor, and they gave him, you know, like a benzo, to relax if that ever happened again. And he also was taking Ambien. So he occasionally had to see a doctor, I think twice a year, just to, you know, refill a prescription, if he needed it, or whatnot. But he was never diagnosed with depression ever at any time.
AM And never had shown this sort of behavior.
GR No behavior like that ever and no suicidal ideation at any point in his life.
And so when my sister-in-law called and made mention of it, I said to my husband, “This is not OK; something isn’t right, and you need to get off of these drugs.” And he said to me, “You’re correct; I don’t feel right.”
So we went to his doctor, who I had never met before.
AM And when you say drugs, you just mean the one –
GR The Cymbalta and the Ambien.
AM You were thinking of them together, then.
GR Correct.
AM You were thinking that they were possibly having a –
GR Like I kept saying, “Get off this” – I called it a cocktail of drugs. But I knew in particular it was the Cymbalta that seemed to be creating a problem.
So I said to him, “I want to see your doctor along with you; I want to go with you and I want to, you know, figure out what’s going on here.” So he agreed. And he made an appointment, and the following week – this is now six weeks – no, five weeks – I think about five weeks; maybe four and a half, five weeks into it – we went to the doctor and I said to him, “Hi, I’m Gail; I’m Howard’s wife, and I just want you to know that I think the drugs that you have put my husband on are not good for him and I really think he needs to get off of them.” And I said, “I’m not comfortable with what I’m seeing.”
AM And why did you think it was your role to do that? Was he also telling the doctor that?
GR I thought it was my place to go with him to see the doctor because I was afraid that my husband was sort of – he was sort of getting scared. You know, he was just – he knew something was happening. He couldn’t quite pinpoint it. And I was afraid that he wasn’t going to be able to convince the doctor that the drug was not good for him, because the doctor – he had called the doctor maybe a week earlier when he wasn’t feeling well, and the doctor said, “These drugs take time.” So I was afraid he was going to come home and say, “OK, you know, I need another couple weeks.” I knew right then and there – I have really good instinct; I always have good intuition, and I knew that something wasn’t right. I felt it. So I insisted on going with. I wanted to be an advocate for him.
And so the doctor looked at me – when I said to him, “I think these drugs are hurting him, not helping him,” he looked at me and he said, “Who’s the doctor, you or I?” So with that, I kind of kicked my husband under the table, like we’re done with this man; you know, this is not OK to talk to me like that. And I said to him, I go: “I understand, but I think these drugs are hurting him and I want him off of them.” And he said, “I’m the doctor, you’re not; let me decide what works.”
Then the doctor – I started to explain to him all the side effects that I was seeing, that I assumed were, you know, reaction to the drug, and he then agreed with me that this was not the right drug for him but that he needed to be on another SSRI, that he had to be on a drug, that that was the only answer for him, and that we’re going to change the one that he is on and switch it to another one. And me, being, you know, also raised to believe that doctors kind of know what they’re doing, I suppose – and I know nothing about drugs; I’ve never been, you know, heavy into drugs in my life, so I just said OK, thinking, you know, maybe this wasn’t the right one, another one might work. So he said to me, “I’m going to put him on Prozac, but I can’t just take him off of the Cymbalta; I have to add the Prozac and then slowly wean him off of the Cymbalta.”
Again, I know nothing about drugs. I’m not a psychopharmacologist. I don’t know anything about adding and subtracting a drug dosage. So I agreed; I said OK. And he said, “For a week I want you to be on both, and then I’m going to slowly take you off of the Cymbalta.”
AM So when you went in for that appointment, because this doctor had said we’re just going to put him on this drug, there’s no need to talk, had he been seeing Howard on any sort of regular basis, or was this kind of a follow-up from that initial –
GR So when he switched the medication, that was the second time he had seen him. He put him on the drug and didn’t want to see him again until six weeks when he said it was going to take effect.
AM So to me, the fact that he’s so insistent that Howard needs this, this is the only course of action – I mean, it’s troubling because he hasn’t been seeing him on any sort of regular basis to know how Howard is doing.
GR Correct. And that’s what psychiatrists do. They believe that you’re – you know, many of them; I shouldn’t generalize – but many of them believe that drugs are the answer. And I just want to tell you that I’m not antidrug. I do believe that a lot of people could not live their lives without these drugs. They help millions of people, you know, be the best that they can be. But there are side effects, and unfortunately, my husband was a victim of a side effect. You know, there are a percent of people that take these drugs that can’t handle the serotonin.
AM And at the time of that prescription, were the side effects spoken about? For example, did the doctor indicate that any of these things might happen or –
GR Absolutely not. He had no answer to any of it. He just said, “I agree with you; the drugs seem to not be working well for him,” but he did not say, “Yes, I know that a rash on your face and, you know, a stomach issue and urinary issues are all side effects of this drug.” He did not, you know, did not say a word.
AM And there was no discussion at the time of prescribing the drug initially of possible side effects?
GR Correct. Zero. Zero. And just threw some samples at him when he was in his office and said try them, they’re great.
So he switched him to the Prozac. A week later – it was right before Christmas vacation; my parents own a home in Florida; we always spend Christmas down there with them –
AM And this is the week in which he’s on both.
GR Correct.
So I left to go to Florida. My father had not been doing well. So my husband was going to fly down with my children on Sunday and I went down on Tuesday, four days, five days early, to spend some time with my mother and my father because my father was not doing well.
And my daughter, who was in her mid-twenties at the time, was living in the city. I asked her if when I went to Florida early if she would stay at the house with her father, because I was worried about leaving him by himself; he didn’t seem to be himself. And she agreed.
So I leave on a Tuesday. On Wednesday, he’s supposed to go off of the Cymbalta and just be on the Prozac. He had such debilitating withdrawal that day that my daughter didn’t know what to do. She said my husband called the psychiatrist, his doctor, from the house phone and my daughter was so concerned with my husband’s behavior that she listened in on the other line of the phone conversation to hear what was going on, and the doctor started yelling at my husband when he said: “I’m not feeling right. I feel like I’ve got some – like terrible withdrawal from going off the drug. I’m jittery. I’m uncomfortable. I don’t feel right.” And the doctor – my daughter said the doctor yelled at him and said, “Well, then stay on it for another week and let’s see what happens.”
So my husband went back on the drug. So now he was on two drugs now for a second week. And what I didn’t know then but what I know now was he was slowly building up what’s called the serotonin syndrome. He had an overdose of serotonin which his liver could not filter out. And he came down to Florida, went off the second drug, basically slept the entire vacation, took Ambien to sleep during the day because he was going out of his body – I mean out of his skin; he felt like he had bugs crawling all over him. He had hypothermia, which at the time, again, I thought he was coming down with the flu. He was out by the pool; it was 80 degrees; he had a sweatshirt on; he had a towel over him. You know, I was shocked.
AM And at this point, some of those symptoms are characteristic of akathisia.
GR Well, they all are. They all are. Now I know they’re all classic symptoms. But at the time, who would know? You know, I had never heard the word akathisia. I knew very little about a serotonin syndrome.
AM Is serotonin syndrome a condition that you also learned of after he took his life?
GR Correct. Correct. I did a ton of research and found out that what happened to my husband was, from being on the two drugs — and particularly, I think, the Cymbalta started it off – he could not – his liver could not process the serotonin, so it backs up and goes to your brain, and in his situation, he had a serotonin syndrome, which led to a side effect called akathisia, which then caused him to take his own life.
AM And before we get into any details on that, I wanted to back up and – so when you had that dinner, that family get-together and several people were concerned about his demeanor and his behavior that night, in the intervening days and weeks between that night when you were out together and where you now are in this timeline, how would you characterize his general day-to-day behavior?
GR He had – some days, you know, he really – my daughter was a high school cheerleader and he would say to her, “Lauren, I’m going to beat this; you be my cheerleader; I gotta get out of this funk I’m in.” I mean, he identified that he was not himself. Yes, he was not happy. He seemed withdrawn. He was trying really hard not to present himself that way; you know, he wanted to try to – he didn’t want to make anybody feel uncomfortable around him, so he tried really hard; he kept saying, you know, “I’m going to beat this feeling.” And he lost about 10 pounds, which was – I mean, we were excited because he was a little bit – he was always trying to lose a few pounds, so everybody was all excited; we didn’t know, of course, that was also another side effect. But he had lost a lot of weight and his appetite was like zero. His interests – my husband was like a high school basketball fanatic, loved – or college basketball – loved the sport. My son-in-law is from St. Louis, and he went to University of Illinois, and St. Louis and Illinois were – I think were playing a game against each other, and he wanted to go watch the game at a bar. We were on vacation and my husband really wanted to go, and he said, “I think I’m going to go out tonight; I’m going to go to the game.” We get to the bar, sit down to have dinner, and within 10 minutes he couldn’t – he couldn’t sit still; he was pacing back and forth, and finally, he said to me, “I can’t stay; you have to take me home.” I mean, he just was not himself at all.
AM So during this time that we’re talking about, was he functional in the sense of going to work every day and performing the sort of normal duties of his life but just in this lower energy kind of way?
GR Yeah. I mean, yes. He was. I mean, he would come home a little early from work.
Right before we left for our vacation, I identified with my husband that I thought these drugs really were just still, you know, not good for him. And he pretty much agreed with me and he said to me, “Let’s go on vacation, let’s enjoy the holiday, and when I come back, I’m going to make an appointment with a new doctor.” So I said, OK, sounds perfect.
We get back from Florida and he’s really not doing great and we go out New Year’s Eve. We get back the day before New Year’s, and that afternoon, and he lays in bed; he’s sleeping for a couple hours; he gets up around 4:00, and I said, “Are you sure you want to go to the party we’re invited to?” He goes, “Yes, I do, I want to go.” So he forced himself to get up and get dressed. Everybody there, like, would come up to me – came up to me and said to me, he doesn’t seem like he’s himself, he doesn’t seem right.
So the next day I said to him, you know, I’m really concerned. Well, what had happened is, when we were in Florida, my father had a high blood pressure machine because he had high blood pressure. So he would take his blood pressure every day. So my daughter was fooling around with it and she said to my husband, “Dad, come on, let’s take your blood pressure, see if you’re normal.” So she took his blood pressure and it was very high. My husband had no history of high blood pressure. So we took it for a couple days straight and we identified that he now had high blood pressure, which is also another side effect of this condition. So he called his internist from Florida and said, “I think I need to see you when I get home; I now have high blood pressure and I’m concerned.”
So he made an appointment with her on a Thursday after we got home, and I told her what was happening. I went in with him and I told her about the drugs and everything that’s happening. And she said: “I agree with you that these drugs are really hurting him. He’s got to get off of them.” She said, “I’m not a psychopharmacologist; I know nothing about taking people off – you know, putting people on and off of drugs.” She goes, “You need somebody really good to do this.” And she had said to me, later on, after he had passed away, she said, you know, “Gail, after you left the office, I talked to him for about an hour and he was so excited about your kids and what they were doing with their life, and he was so happy with, you know, your relationship.” And she said, “If I thought at any point he had any suicidal ideation,” she said, “I would have marched him right into Northwestern Hospital.” She said he was perfectly fine; she said we both agreed he had to get off these drugs, that there were other ways to deal with it. And so we were on the same page.
So that was on a Thursday. The following week he killed himself. I woke up that morning. He was on the computer. We were planning on going to Greece that summer and he was planning our trip, and it was right before Valentine’s Day and he was looking for something for me for Valentine’s Day. He was online talking to a jeweler about a necklace for me. And he seemed great. I mean, really good. And ever since he was diagnosed a week earlier with the high blood pressure, he made me make him lunch every day, so he was trying to be healthy, you know, and trying to take care of his issues.
So we went downstairs. He was getting ready to leave for work. It was about 9:00. He runs out the door. All the sudden, he runs back into the kitchen and he goes, “Oh my god, I forgot my lunch.” So I grab him his lunch, give it to him, and he goes to work and I go to meet some friends for breakfast. And after breakfast, I get back to my house and I call my husband and he doesn’t answer. And it’s unusual that by 11:00 he hasn’t called me yet just to see how I am. We would talk several times a day.
AM Which speaks to the kind of relationship that you had.
GR Yes. Yes. And so I called his store that he was managing and nobody answered. And I was concerned.
AM Which must also be weird because it’s a store.
GR Very weird. Very weird. And he’s always, you know, on time, someone’s always – so maybe he’s getting deliveries out in the back, he’s getting the trucks ready. So I patiently waited, and about a half an hour later, when I didn’t hear from him and his cell phone didn’t answer and nobody was at the store, I got concerned. And then people just started calling me because they were going to try to get in to go to work and he wasn’t there. So I got nervous. I called my sister-in-law, who ran over as quick as – she lived in the city but she got on a train and came out to the suburbs – and I said, “I don’t know what to do; he’s missing; I don’t know where he is.” So I called the police.
AM OK. And until this time, you had some – you know, many causes for worry, but it sounds like you never had another incident like this where you just were alarmed.
GR Never. Really never. And, I mean, I was shocked. I mean, I was in shock because – if I would text my husband or if I would call him, within – no matter what he was doing – within 10 minutes he would call me back or even send me a text, “Busy, can’t talk now.” And when I got no answer from him for probably now was going on maybe an hour or two, I was very concerned. So my sister-in-law came over, and in the meantime, I called the police and the police came over and they went on his computer to see if there was anything they could get out of that, and he said, you know, “I don’t know if you know what’s on this computer; you know, you may not be comfortable if we find things.” I said, “I promise you, my husband was an open book; we had an amazing relationship; he shared everything with me; there is nothing I don’t know.” So we went on the computer. We found nothing. You know, because he said lots of times they have girlfriends; maybe he’s in a hotel with a girlfriend; let’s look at his credit cards; see what’s charged on it. I said, you’re not going to find anything.
We started calling all the hospital emergency rooms. We thought maybe he was in an emergency room. We got nothing. We called all his credit cards to see if there was any purchases made, if we could track where he was. We found nothing.
So this went on for quite a few hours. Police left my house, said, you know, they’ll send cars around, they’ll look for him, they’ll see if they can find anything. Nobody could really come up with anything.
And it was maybe – my brother-in-law left work; he came over. Now we’re about 2:00 in the afternoon and I’m getting really concerned. My brother-in-law comes over around 2:30, quarter to 3, and he says to me – my brother-in-law is very smart, and he said to me: “Where would he go? Is there anywhere he’d go?” And I said no. He goes, “How about your parents’ house?” My parents have a condo in Northbrook, and they were in Florida for the winter. I said “No, he would never go in their house without me.” I mean, he just – you know, he would never walk in my parents’ house without telling me he was going there or me going with him. You know, he was very respectful of their place. He goes, “Let’s go over there and let’s just check it out.” So I go in my laundry room to get my mother’s keys, which I keep on a hook, kept on a hook in the laundry room, and they were missing. And all the sudden, I remembered that before we went away on vacation my parents had asked me to bring something down from their house, so my husband and I went there at night to get the papers that my father needed, and I must have left the keys to my parents’ place in my husband’s car.
So what I now know was he was driving to work. What Dr. David Healy has told me, who – I’m not sure if you know who Dr. David Healy is; he is an internationally renown psychopharmacologist out of Wales. He was one of the first to identify the connection between SSRIs and suicide in the early ’90s. And I had spoken to him. I had met with him and he had told me that –
AM At what point did you speak to him?
GR After my husband passed away I started doing some advocacy work and I had met up with him on several occasions. And what he had said to me and a group of people was that when akathisia hits, there’s about a 10-minute window, and when it hits you – you’re perfectly fine until it hits you. And you feel like your body’s on fire, death is a welcome relief, and you don’t even know who you are. It wasn’t like it hits you and you could say, oh my god, I got to call my wife and tell her I’m freaking out. You don’t even know who you are. All you know is you need to die. And so he must have started feeling it coming on as he was driving past my parents’ condo, which is on his way to work, and he must have, in my opinion, gone there to settle himself down before, you know, it all happened, because he walked into my parents’ home and when we found him there, his shoes were at the front door; he took his shoes off. If you’re going there to kill yourself, I’m not sure you want to take your shoes off at the front door. Took his shoes off, took his wallet and the change out of his wallet and stacked it up like he does every night next to the bed, and he laid down. And then what we’re thinking is that the akathisia kicked in and he paced a little bit. He knew my father had a gun at his house, had had it for years, never used it. And my husband knew where it was. So my guess is that he went to get the gun and then used it on himself. And by the time we found him – it was about 3:00, 3:30 in the afternoon when my brother-in-law came over and suggested us going there. When I saw my keys missing, I said, “Oh, you’re right, he’s probably there.” And I was excited when we pulled up into the parking lot and I saw his car there with his little lunch in the front seat because I thought he’s probably sleeping and I was giving him a hard time about, you know, how much he was sleeping lately, so he probably was afraid to come home; he didn’t want to start with me so he just went to my parents’ to rest.
AM So this is relief for you when you pulled in.
GR Relief. I’m completely relieved. I think, oh, god, he’s fine, he’s just sleeping.
So anyway, so we found him there and we called the police because I had no key to get into the place because he had my key. So we called the police and we said, “We found him; he’s at my parents’ house.” So the police came over and they had to break into the door and I thought, oh, god, he’s going to kill me when he finds out that I’ve sent the police there to get him. I stayed in the lobby of the building; they didn’t want me to go up. One of my daughters was with me. She had found out he was missing; she came running over. Then another one had called home and she knew something was wrong, so she – so I was sitting there with two out of my three daughters, and –
AM And at this point you’re still feeling that sense of relief and hope that --
GR Yes, but also like there was a little part of me that was scared. You know, I was a little scared. But I really thought he was going to be fine.
AM Did the police presence and their sort of telling you to stay in this one area, did that kind of increase the fear that you had?
GR Yes. Yes. Yes. Yes, because I think they were fearful that they were going to find something that they didn’t want me to see.
AM And maybe that hadn’t even like necessarily been front of your mind –
GR It was the last thing – if you had a million people in a room, my husband was the last person that you would think would ever do something like this. So yes, that was not even like a thought in my head. But I have to tell you, there was a little bit of an edge that something wasn’t right. But I never in a million years thought he killed himself.
So the police go up and within five minutes they come down off the elevator and they say to me, “I’m very sorry.” And the rest – I started screaming. I mean, I don’t even remember, you know, what happened next. It was a blur for the next couple hours. And then that night I had a house full of friends come over and one of them said akathisia. I said what? Akathisia. And they spelled it for me. You need to look into this. I have a feeling your husband was a victim of a drug reaction.
AM And so the friend who said that – what was that information based on?
GR She had a friend that had lost her husband six months earlier and they had found out that it was the result of a drug-related incident, that he had a drug reaction, and it was called -- akathisia is what the term is called. And she had heard about it and had lived through it with her dear friend and her late husband, and she said to me, “Your husband reminded me of Stewart,” which is the name of this gentleman who had passed away. And she said, “I think you need to look into this; I have a feeling something isn’t right.”
So that night, one of my friends who was over, who’s a doctor, went on his little PDA and looked at the drug reaction with Cymbalta and Prozac and it said lethal combination, never to be given together, unless all other measures were used, and for sure not for two weeks. And anyway, it all started to fall into place and that night I stayed up all night and I researched akathisia, suicide, SSRI drugs –
AM While being deeply in mourning.
GR While being deeply in mourning, but I knew that I needed to do something to find out what happened. And when I realized by early morning that my husband was very highly a product of this drug reaction – I mean that this definitely occurred – I called the Cook County coroner and I begged her to do a toxicology report and find out if he had not lethal but toxic levels of the drug in his body. And after pleading with her for about 20 minutes, she finally agreed to do it, telling me that they didn’t have the funds to really do this type of stuff but she agreed to do it for me and called me back about 12 weeks later and thanked me for making her do it, pushing her to do it, and told me that my husband had toxic – not lethal; lethal would have been way lower; it would have been an overdose – he had toxic levels. It was a slow buildup in his body. Normal was 75 to 125 milligrams, I believe, and he had like 275. I mean, he was way off the charts. And, you know, I had an answer to what happened. I mean – then I started going a little bit berserk because I thought, well, here’s a doctor who blew my husband off when he was calling him with all kinds of signs. So I got my husband’s cell phone records and found out that while we were on vacation the previous week and a half ago, he had called his doctor 10 times and 12 times on two different days.
AM And you didn’t know that –
GR And I did not know that. He didn’t want to upset me.
And one night, about 7:00 at night, the phone rang and he was talking to his doctor, and when he got off the phone I said to him, “Why is your doctor calling you at 7:00 at night?” He goes, “Oh, I just put a call into him; I told him I’m still not feeling good.” And I said to him, “Well, what did he say to you?” He said, “He yelled at me and told me, I told you it takes at least six weeks for these drugs to click in.”
I was a little bit shocked to see that my husband had called 10 times in one day and 12 times in another day, and we’re on vacation and my husband clearly is suffering, and I would have thought that the doctor would have said either, A, go to an emergency room, something is not right, or, B, let me talk to your wife and see what she’s experiencing and what she’s seeing. He did neither of those two and just yelled at my husband and said to him, these drugs take time, you know, you need to wait and see what happens in a couple more weeks. Unfortunately, my husband did not have a couple more weeks.
AM So it took about 12 weeks, you said, for the toxicology –
GR Maybe about 10 weeks I think I got the result. My husband died on January 13th, 2011, and I would say mid to late March I got the tox report.
AM But during that time, based on the research that you were doing, it doesn’t sound like you would have much doubt that he had akathisia.
GR I was a hundred percent confident that that report was going to come back positive because my daughter, my youngest daughter was a teacher and my husband was sitting outside with her one day; she was grading papers and he wanted to keep her company, and again, it was about 90 degrees out and he’s outside – I have a picture of him that I kept looking at – wearing a sweatshirt and a towel around him. He was shivering. So he was experiencing hypothermia, which is a side effect. He had stomach issues. He also, when he went to his internist, when we got back from Florida to deal with the high blood pressure, he found out that he had a urinary infection, as well. He went to his urologist as a follow-up. So those are all side effects, as well, of the akathisia. So he had every side effect. So yes, I was fairly certain, after researching as much as I did over those 12 weeks, that there was no chance it was going to come back negative.
AM I’m sure you had some interest in talking to this doctor who had failed you so much. Did you talk to him?
GR So, interesting, right before my husband passed away, he called the doctor in preparation for his new appointment with a new doctor and said to his old doctor: “Can you get my medical records all together for me? I’m actually going to seek a second opinion.” So, unfortunately, my husband died within a few days of that so he never got to pick up the medical records, but I wanted to see what was going on, so I actually went into his office two days after my husband passed away. I got myself out of my house and went to the office and got the medical records. There was an envelope waiting for me with my name on it, not my husband’s, and inside it it said, I’m sorry for your loss. Now, he must have seen an obituary or something. And while I was in the office, I saw him look at me; he was walking by and he turns his head and didn’t even, you know, didn’t even approach me, didn’t say, like, oh my god, what happened? Completely ignored me.
AM Well, to me, that just reflects the kind of indifference that he seems to have had from the outset.
GR Correct. Correct. And I started proceeding with a lawsuit, which went on for about four years and we just ended up dropping it because, you know, they wanted to go to trial and –
AM Well, who was the target of the lawsuit?
GR His doctor, his psychiatrist, for medical malpractice. I was doing a medical malpractice lawsuit. And the doctor didn’t want to settle and they wanted to go to trial. It was complicated and I just – it was four years and it just wasn’t worth it for me to put my kids through it anymore, and for various reasons I just – I dropped the lawsuit.
AM And he is still –
GR I do believe that he learned some kind of lesson. The whole reason for bringing the lawsuit was so that this could never happen to anybody else. So I think in the interim of the four years that the lawsuit was pending, I think he probably educated himself enough that he realized what happened and learned enough that this probably will not happen again to another one of his patients. I’m hoping, anyway, that he was smart enough to do that.
AM Yeah. And in the intervening years now, because it’s been –
GR Well, it will be nine years in January.
AM You have taken this effort elsewhere and tried to educate as many people –
GR Correct. So I sit on a board of a non-for-profit called MISSD, which raises awareness about the side effects of not only SSRIs but many drugs, and I have been to Washington at a conference called Selling Sickness, which addresses, you know, the side effects of not only drugs but, you know, other devices and medical negligence.
AM And you continue to do this work.
GR And I continue to do this. I just continue to be a part of an organization that’s just doing wonderful things to educate the public about the side effects of drugs.
AM What things has that involvement with MISSD brought to your life? You’ve come to know all of these other people who have, if not very similar stories, at least somewhat similar stories, and you know, I’m sure that they’ve had an impact on your life, and you would not have otherwise met them.
GR Correct. And also, you know, first and foremost, I feel like my husband’s death was not in vain, because I’ve been able to educate so many people and teach, you know, so many – well, teach them my story so then they can then go out and teach that story to other people, and I’ve had so many people over the years tell me that because of my story, they were able to get someone off of a drug that they thought wasn’t looking good or prevent something that possibly could have happened because of my story. So I feel good about that.
AM And I know that you yourself and MISSD as an organization – neither is antidrug.
GR Correct.
AM But, looking back, putting aside the lethal side effects that the drug had, do you think Howard should have gone on that prescription to begin with?
GR Absolutely not. Absolutely not. I don’t think he was a candidate for an SSRI at the time. I think that what he needed was a good therapist to talk to him. I’m not sure that drugs were the answer for him. Again, he never had any depression and he never had any suicidal ideation. He had a little agitated anxiety. I’m not saying that a little benzo once in a while, like Lorazepam or Klonopin, wasn’t a good idea to calm him, you know, when he got a little worked up.
AM As a one-off.
GR As a one-off – but certainly not a prescription for an endless supply like his doctor gave him, plus giving him Ambien. Ambien is a drug that should be used two weeks at a time, you know, if you’re having some sleep issues, but it’s not a drug that you should be on for months or years. He was completely mismanaged with drugs. Completely. I mean, he had a doctor who just wasn’t paying attention. And during one of the depositions, during my – while I was continuing with my lawsuit, his doctor did say that it’s not cost-effective to do therapy, that, you know, it’s much cheaper to – basically what he let on to acknowledge was that it’s just cheaper to throw a drug at someone than to spend time, you know, working in therapy with them, and that, you know, these drugs are supposed to work. And if they don’t, well, that’s your problem.
AM Are there other things that you came to learn or see in the course of pursuing that lawsuit?
GR Well, I’ve met so many people who have lost somebody to suicide and many people who haven’t as well that have just been thrown one drug after another. I think that we live in a world where, you know, drugs are the answer to everything, and they’re just not. And you know, what upsets me the most is – again, I’m not antidrug and I do believe that these drugs save the lives of many people that could not function, you know, couldn’t get out of bed or walk out of their house without the use of antidepressants. So for several people, a group of people, these drugs are wonders. But there are a lot of people that they are not OK for and they’re just thrown as the answer to everything.
I learned that in the late ’80s when Prozac was being approved, they had a control group that developed akathisia. And one of the antidotes to akathisia is a benzo. So they then threw benzos at this group. The FDA came in and they said, hey, look, everything’s great. These studies were hidden for years, and when the papers all came out, you know, we found out that they knew about these drugs, the side effects, from the very beginning and there was zero transparency; you know, everything was hidden.
So I say if you’re going to put a drug out there, let the public be aware of all the side effects, including the ones that you don’t want them to know about, I mean, and then it’s there choice to take it if they want. You know, it’s sad to me that you could have 18 bad drug trials and a few good ones and a drug gets approved.
AM Yeah. And was there a period of time where you were assigning any blame on this to yourself?
GR Not really because I really felt that he was – that we were on the right track, you know. It’s not that I think doctors are the end-all and have the answers to everything. Let’s be honest; they’re practicing medicine. They’re practicing, and if something works, great, and if it doesn’t then they try something else. But I have been raised, like I said, to believe that doctors, you know, know what they’re doing. And so – and again, I never did drugs in my life, so I really don’t know much about drugs and the side effects, and certainly not SSRIs. So I thought, OK, you know, this isn’t helping him, it’s hurting him, but never in a million years did I ever believe that an SSRI could cause someone to kill themselves if they were [an] otherwise happy, high-on-life type of person, you know. I mean, I know that SSRIs have been involved in suicide when people are clinically depressed and then when they take an SSRI, they get happy enough that they then have the strength to do what they want to do. But I never, ever heard, you know, that an SSRI could turn someone who completely had no suicidal ideation whatsoever into a suicidal person, ever.
AM Yeah. I know that this is not your – this is a technical question and this is not your background, necessarily, but why does someone like Howard have this serotonin overload and other people who are taking the medication and maybe taking it for years avoid that?
GR So what I’ve been told – and again, yeah, I’m not a medical doctor, but what I’ve been told is that there is an enzyme in your liver that you have that can process serotonin. And they say – I think the numbers are around 7 percent of people that can’t process the serotonin properly. I think it’s higher. I think people just don’t know – you know, someone kills themselves and they go: “Gosh, what happened? I don’t know; you know, I didn’t expect it.” Well, if they don’t know about the side effects, they’re not being tested, you know, they’re not reporting statistics. So, but what I’m told is about 7 percent of people do not have the enzymes to properly process the serotonin, which then backs up in their brain and they call it a heart attack of the brain, and, you know, you lose your whereabouts.
AM And so that’s what you think happened –
GR Correct. That’s what I’ve been told, so yeah.
AM So what is the most important thing that someone listening to this can take away from your experience?
GR I think you have to be your own advocate. You know, if something doesn’t seem right, if it doesn’t make sense to you, then it probably isn’t right and that you need to use, really, your own common sense in dealing with, you know, any situation, particularly medical advice. You know, I’m not telling you that telling someone that they should be, you know, altering drug doses or not, but if you feel that something isn’t right, that the person who’s on a medication isn’t reacting the way they should, or you see signs that are not OK, you need to get help immediately, even if it’s to go to an emergency room. But you definitely need to use common sense and your own instincts, because, looking back on it now, I mean, I was so naive, but looking back on it, if I would have dragged my husband to an emergency room, I could have saved his life.
AM So you have a very vivid memory of all this. Was there a point during — at which you wrote any of this down?
GR Yes. So maybe within the first week of when my husband passed away I took out a piece of paper and a pencil and I sat and I wrote the entire story, from the minute he started going on the drugs to the day he died, because I never wanted to forget really any of the important details of what happened. And I knew that as the years go by, as good as our memories are, they start to fade and the details sort of blur into one another, and I just thought it was important to document it and have it. So I do have a little essay, I call it my little essay, of his story.
AM And is this something that you ever refer to?
GR I did. In the past I have. I have really not looked at it in quite a few years. But I did. In the very beginning I used to read it a lot. It was hard for me to conceptualize what happened. I mean, it just was unfathomable that this would have happened to him. So yeah.
AM And it also provided you a tool in the lawsuit that you pursued?
GR Correct. So I had all the details, you know, pretty clear. You know, I didn’t want to forget any of the important facts, and, you know, when you have pain, sometimes you blur, you know, so I didn’t want that to happen.
AM I assume the answer to this is going to be similar to what you’ve been kind of articulating, but what motivates you to do an interview like this, and is it a painful experience recalling this?
GR So to me, I wouldn’t – I would not call it painful at all. I actually feel so good that I actually can tell my story to educate other people. I think education is so important. Had I have known anything about these drugs or any of these side effects before my husband started taking them, I wouldn’t be here telling my story. So if I can change, really, the life of just one person by speaking out and educating, that’s important to me.
AM So, it’s 2019; you’ve been in a relationship now I think for more than three years, and you’re engaged.
GR Correct. Yes, we plan on getting married. That is correct. So I was fortunate enough: I waited a couple years until I felt like I was normal, and I started dating. It was important for – my kids thought that, you know, it would be a good idea. And you know, nobody wants to be by themselves. I felt like I was young and life is really for the living and I had a lot of life to live. So I started dating. Met some nice people; went out with several dozen different people.
AM Several dozen.
GR Well – (laughs) –
AM I know how it is! (Laughs.)
GR Sometimes just one cup of coffee or something. But yeah, so about a little over three years ago, one of my husband’s very, very close friends called me up and said, “I ran into somebody, he is available, he’s divorced, was married for many, many years, and great guy; I really want you to meet him; I think you’d like him.” Anyway, the rest is history. And he’s amazing, and we’re great. So there’s a happy ending.
I also now have seven grandchildren, five and under. So that’s, you know, takes up a large part of my time, spending time with them. And my kids are all married and they seem to be functioning really well and happy, and so life does go on and everybody’s doing well.
AM And how long would you say it took your immediate family to kind of work through –
GR So, I’m not sure that we’re really ever over it. I mean, as happy as I am and I really am as happy – I never thought I could ever be this happy again. I still break down and cry over – if I drive by something that brings back a memory, or I look at a picture that I have a remembrance of, I’ll cry. So I don’t know if you ever get over it. My kids, I would say they’re doing as well as they possibly can, but there are times when I’m not available, or if I have a little argument with one of my kids and they start crying, “Well, you’re all I have and I can’t call Daddy and you’ve got to deal with it.” And you know, there’s still the pressure of being the only parent, and my kids are into their 30s now. So they’re not babies, and they weren’t when he died, either. But it’s still hard for them to go through Father’s Day and not have a father, which we’ve just done, and a birthday, celebrate his birthday when he’s not here. You know, well, he would have been this old and this old and this old. And, you know, I now, like I said, have seven grandchildren, and they don’t have a grandfather, so to speak, on our side. And so there’s always a reminder that he’s missing. There’s always some sadness. But you know, I look at the glass half full. I think, if anything, I am the best version of myself that I’ve ever been in my entire life, because of the situation. I’m much more compassionate. I’m much more understanding. I just want to enjoy life. I know the fragility of it and how fragile it is, how we could be gone tomorrow. So I enjoy life in a way that I never was able to allow myself to in the past. I don’t worry about things that don’t need to be worried about anymore. I’m just a much better version of myself.
AM Is that also true with any anger or residual anger you feel toward that doctor? Is that something you just –
GR Yeah. So I let go of that anger because we all know anger is – just hurts us. You know, it’s not healthy. Yeah, I’m sad that a doctor mismanaged my husband and I lost an amazing partner, and my kids lost a phenomenal father. That made me angry for a long time, but I let go of that. You know, in life, everybody – we make mistakes and he made a big mistake. And I don’t think his intention was for the outcome to be what it was. But being angry doesn’t really help anybody or anything, so no, I let go of that anger a long time ago. I’m sad. You know, I still am sad. I’m really happy with my life, but there’s still a sadness. The family unit is forever changed. My kids’ DNA is forever different.
AM Well, thank you for this conversation, and I wish you the best.
GR Thank you very much.
Gail spent several years volunteering at Lurie Children’s Hospital after her husband passed away. She says she wanted to be able to comfort parents when they were experiencing loss, having just experienced her own tragic loss. There is more about that and her involvement with MISSD in the “webcast extra” available at studiocchicago.com/akathisia-stories. Gail is retired now and currently spends time with friends and family, including her seven grandchildren, travels all over the world, and is involved in several different philanthropies. Her wedding day is set for some time in 2020.
If you'd like to learn find out more and get the best information about this important topic of akathisia, the MISSD website is a great place to start. You can find it at missd.co. That's M-I-S-S-D dot C-O.
[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 studio.c.chicago@gmail.com. And please share this podcast and subscribe. I'm Andy Miles and I'd like to thank Gail Regenbogen for her time and candor, and I'd like to thank you for listening.
podcast Extra
AM So you are involved with MISSD. How did you come to be involved with MISSD?
GR So when my husband passed away, my girlfriend who told me about the akathisia, to look into it, introduced me to Wendy –
AM Whose husband had just taken his own life –
GR Six months to the day. So I called her, or maybe she called me. I can’t even remember. We were in contact with each other within maybe a week or two of my husband passing.
AM And you had not known each other?
GR We knew of – I knew of her. And I think she might have known who I was, but we had absolutely no relationship whatsoever. We had mutual friends. I had never met Stewart, never even, you know – I had no idea who he was, other than I did see in the news, six months previously, that some man jumped in front of a train and committed suicide.
AM You had read that in the news?
GR I had heard it on the news. I had seen it – I saw it on the 10:00 news. And my reaction was, what crazy person would jump in front of a train? Not knowing that, you know, there is this condition that causes someone to do something they otherwise maybe would not want to do.
So I got in contact with Wendy, and we met for the first time maybe about six weeks after my husband passed away.
AM Sorry to interrupt, but is the friend who told you, who basically said that word to you, akathisia, was she aware of it because of Stewart Dolin?
GR Correct. Correct.
AM OK, so that’s the case she was –
GR Referring to, yes. And so from the day that Wendy and I met, we became, you know, great friends. I mean, we just connected on many different levels.
AM Well, your stories are so similar.
GR Yeah. And, you know, our husbands seem to be very similar in many ways and we just had a lot in common. You know the saying, misery loves company. I mean, who else – you know, you talk to someone and they say to you, “Oh, I understand how you feel.” No, you don’t. You might have empathy for me, and you might be able to be sympathetic, but you don’t know what it feels like to lose your husband and have children without a father for no reason, you know, no good reason at all. So there are many nights that Wendy and I sat on the phone together and just cried. You know, she just understood where I was coming from and I just got her. So we just became very, very close friends. And she said to me, months after, you know, we became friendly, I want to do a foundation, a charity in Stewart’s memory. And I knew that if I went on to do something like that, it would be hard for me to move on with my life. I get caught up in things and just – I knew it was healthier for me to be a part of someone else’s mission, rather than to start my own. I thought it was healthier for my family, as well. And so when she said to me she was going to do it, I said, I’m in. So I’ve been in from the ground up.
One of the things I also did that has nothing to do with akathisia, but I volunteered at Ann & Robert H. Lurie Children’s Hospital in Chicago, pediatric hospital, and I worked on oncology and hematology and I really felt like it was important for me. I had gone through a profound loss and I knew, even though my children were adult children, I knew for me that if I wasn’t OK, my kids were not going to be OK. They looked to me. And so I thought, well, what better than to volunteer at a hospital where there are children that are, you know, obviously dying from illness and these parents have other children that still need them. And you know, when you lose a child, you get lost, and I just wanted to work with these parents so that I could try to explain to them how important it was – it is for them to be strong and to stay positive for the children that they still have, that are still with them, and not to bury their sorrows in the child that they lost. And you know, it’s not a good situation for the whole family when you end up losing yourself in a situation like that. It’s so easy to do and yet so hurtful and harmful to the rest of your family in the long run.