EPISODE 5
“What is Akathisia? Just Call It Delirium,” a conversation with Dr. David Healy
Heather and Lee are joined again by Dr. David Healy. We discuss akathisia — what it is, who it affects, and what to watch for, as well as a range of consequences for this treatment-induced harm. (This is part three of three with Dr. David Healy.)
TRANSCRIPT
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LEE: Awareness is power.
HEATHER: And it can save your life.
LEE: Welcome to our podcast, “Know Risks.”
HEATHER: I’m Heather.
LEE: And I’m Lee. We’re two moms, a lawyer and a nurse, who were brought together by a misfortune. Both our children were harmed by adverse drug reactions.
HEATHER: The purpose of this podcast is to educate people on the risk of any health treatments you put in or on your body.
LEE: We feel if we’d been properly informed and been our own experts, our children would not have been harmed.
HEATHER: In today’s world, with medicines being incentivized for profits, you need to educate yourself. Know the risk of health treatments and it can protect yourself and your loved ones from being harmed.
LEE: Thank you for joining us today on our episode “What Is Akathisia? Just Call It Delirium.” We are joined again by Dr. David Healy and we’ll be discussing, what is akathisia, who it affects, and what to watch for, as well as a range of other relevant topics.
Here’s Heather with a little bit more information about Dr. Healy before we get started.
HEATHER: Thanks, Lee.
Dr. David Healy; read his full biography
Dr. David Healy is a world-renowned psychiatrist, psychopharmacologist, neuropsycopharmacologist, scientist, and author. He undertook his doctoral research on the serotonin system on which antidepressants work, while qualifying in psychiatry. He moved to Cambridge University for higher training in psychiatry and to engage in post-doctoral research.
He has since been a Professor of Psychiatry in Cardiff University and Bangor University, working clinically in the NHS for 30 years, before recently being appointed as a professor of Psychiatry in the Department of Family Medicine at McMaster University in Canada.
His main area of research includes the contribution of psychotropic drugs to suicide, for which he was one of the very first researchers to make this link; the adverse effects of these drugs; the conflicts of interest between pharmaceutical companies and academic medicine; and the history of pharmacology.
He has published 25 books on medicine, primarily on physical treatments and the development of the pharmaceutical industry, including the standard histories of antidepressants, antipsychotics, and mood-stabilizers. He has authored over 60 chapters in books on similar issues, over 200 peer-reviewed articles, and over 250 other pieces, for the most part dealing with the impact of medicines on health care.
He has been involved in numerous legal cases, centered primarily on the harms of treatment. He has acted as an expert in numerous cases in the United States involving suicide and psychotropic drugs, and he has publicly and internally provided testimony and consultation to the Food and Drug Administration (FDA) regarding psychotropic drugs and their effects.
Dr. Healy was the leading expert in my son O’Shea’s wrongful death case. You can listen to his testimony and view other materials from the lawsuit on our website, knowrisks.org.
LEE: So today again we’re very fortunate to have David, Dr. David Healy, here again with us today. Welcome. And, you know, I think one of the topics that we would like to know a lot more about and I know that Heather is more knowledgeable than I am, just through her journey with her son Shea, is this akathisia and, you know, it’s a term that I hadn’t even heard, actually, until I met Heather and she was telling me about Shea’s story, so maybe you could give us a little bit more into that, David.
DAVID: Yeah, sure, OK. And one of the best gifts the pharmaceutical industry has ever had is the word akathisia because no one really knows what it means, OK, and in particular, when it comes to court cases and legal cases and things like that, you know, it’s this medical term that gets thrown around that juries don’t know what it means and lawyers don’t know what it means. So it’s very difficult to convey to a wider world what’s going on. But I accidentally, literally just a week ago, having dealt with akathisia for years and years and years — actually more, decades — just a coin dropped, that if we changed the word akathisia to the word delirium everything changes.
OK, now what I mean by delirium: What I mean by delirium is that it’s been well known for hundreds of years or more, maybe even thousands of years, that when people have a high fever or when they’re poisoned by some odd food that they’ve eaten and things like that, you know, they’re not themselves; they’re not thinking straight; they may be confused; they may be thinking other people aren’t the people who they appear to be and they lash out, and they may think that they’re being chased or persecuted or maybe even poisoned, which they are being poisoned, if they’re being poisoned by things like possibly mushrooms and all. So they react to all this in a way that’s very agitated and not reasonably, OK? Now, when somebody possibly kills someone else when they’re delirious, it’s been known for hundreds of years or it’s been generally accepted for hundreds of years by the legal system that they’re not responsible for their actions, OK? Now, 200 years ago a man called Philippe Pinel, when he was handling patients who were crazy — I mean, he was actually the first person who had the opportunity to get a few hundred people who had what we would now call mental illness in the one place, OK, and to look at them, and he looked at them for months and months and figured well, look, there’s a bunch of them who are raving mad; these are the people who we would call delirious. And then there’s a bunch of them who aren’t raving mad; they’ve just got crazy beliefs; they think, you know, they’re actually responsible for World War II or whatever, or they’ve killed all the people that they love and things like that when, in fact, they haven’t. And so they’re mad but they’re not delirious, OK? Now, legal systems since then, for the last 200 years, have had great problems trying to work out how responsible are people who are mad but not delirious? They’re agreed the people who are delirious are not responsible, OK?
Now, here’s the trick: When you come — when you go on an SSRI or one of the antipsychotic group of drugs and you do something awful like try to kill yourself and then take a legal act against the pharmaceutical company or maybe you kill others and the legal system is trying to work out what to do with you, the usual argument from lawyers is well, this person’s got a mental illness, and even though they’ve got a mental illness, we hold them responsible for what they’ve done, OK? But if you’ve been poisoned, if you’re delirious, we don’t hold you responsible and you would walk out of court free. The trouble is, nobody has been talking about being poisoned, being delirious as a result of the drugs that you’ve taken. And the reaction of the court is, I’ve just found out last week, is to think that FDA would never approve a drug that caused people or might cause people to become delirious; they simply wouldn’t do it, you know. So if you reframe this as there’s a bunch of drugs that can cause all of this, from the antibiotics to the antidepressants to the antipsychotics, that can make some of us — and in some cases with these drugs, quite a few of us — can make us delirious if they don’t suit us. We’re being poisoned, and it’s not as though we’re being poisoned by our husband or wife or whatever; we’re being poisoned by the doctor who put us on the drug, who will often fail to realize that what they’ve done is poison.
Let me give you three cases that I think help bring things out that I’m actually dealing with just now. One was a man from Minnesota who was happily married, he had three children, he was running his own business, and he was under a lit bit of stress, you know, the kind of stress where you’re not actually sleeping all that well. So what do you do? You go along to your family doctor and you say, look, I’ve had a few nights of poor sleep; can you give me something to help my sleep? And the family doctor did, as a lot of them do, they gave him an SSRI. And he came back a week later and he was clearly more anxious and his sleep was worse. So the family doctor says, well, look, we’ll refer you to the clinic in the area, which was one of the premier clinics in the country. They had 54 psychiatrists, OK? So the man goes along to the clinic and there he meets a nurse. I don’t know what’s happened [to] all of the psychiatrists, whether they’ve gone into management or they’re out on the golf course or what, but anyway, he meets a nurse prescriber who looks at him and listens to the story and gives him some rating scales for being anxious, being depressed, and she says, look, what we’ll do is we’ll double the dose of the Sertraline. And he comes back after or a week or two to her and she gives him the same rating scales and can see that he’s worse, so it’s proven that he’s worse, and what’s the answer to that? Well, double the dose again of the Sertraline.
LEE: More. Oh, my gosh.
DAVID: And he comes back after a few weeks — well, a week or two — and he’s clearly worse again, according to the rating scales, and they decide to switch him from the SSRI he’s on to a different SSRI, and on the day that he’s due to go back to the clinic, he shoots his wife and shoots his three children and shoots himself. Now, this is a man who’s become delirious on treatment. If he hadn’t actually killed himself or whatever, you would say, look, he’s not responsible for what happened; this was not him doing — this is a textbook case of the kind of delirium that the antidepressant group of drugs cause. The clinic are there saying, well, they didn’t owe him a duty of care because he was at home; he wasn’t in their clinic, you know, in the evening and things like that. If he’d slipped on a banana skin, well, they would have had a duty of care; if he broke his leg after he possibly slipped on a banana skin in the clinic, they’d be responsible, but if he’s at home on these drugs they’re saying they’re not responsible. And they’re also saying — and here’s the key thing — and it’s true, which is nobody can predict when patients who have a mental illness are going to become violent. That’s true. No one can predict, even — you know, you may be crazy, but just because you’re crazy doesn’t mean you’re going to go out and kill people. But if you become delirious, it’s absolutely for sure some harm is going to happen, you know, either to yourself, to others. Are you going to fall over and break a leg or whatever, OK? Things are going to go wrong. So the clinic had missed out on their duty to recognize that when we give people — and he goes, let me put it this way to you, OK: If I’m a really good doctor and you’re socially anxious, I could treat you with alcohol. It works better than SSRIs, but we both need to remember that alcohol’s tricky; we don’t want you to be on it for ages and ages and ages, you know, but it may be useful when used for a brief period of time to help you over the problem. If you’ve got OCD, I can treat you with nicotine. It works just as well as SSRIs, and it may suit you better than an SSRI dose, whereas an SSRI may suit other people better. Or if you’ve got ulcerative colitis, I can use nicotine. Now, nobody would think we should be giving alcohol or nicotine to people to treat them because these are dangerous, but they’re over the counter, and prescription drugs are on prescription because we think they’re more dangerous than alcohol and nicotine, which is over the counter. But somehow when we give them a prescription, we start thinking well, they must be safe because FDA have approved these. Well, they’ve approved them to be on prescription because we think they’re dangerous, and the doctor or nurse giving them to us should be aware that we’re giving you a poison. We want to bring good out of the use of this poison, but it is a poison, and one of our duties is to keep an eye on whether you’re ending up poisoned, and if you are, we need to change course; we need to introduce an antidote or stop the treatment or whatever. We shouldn’t be doubling the dose of the poison.
LEE: No, doubling, tripling the dose and having all those, you know, ramifications.
HEATHER: Well, and yeah. And the other component with that is when you’re taking prescription drugs you’re supposed to be under the care of a physician or a health care provider, which, in those cases, we kind of give up some of our own —
DAVID: Absolutely.
HEATHER: — you know, our own, “oh, I think this” — “I know this” —
DAVID: Natural caution. Natural caution, yes. Yeah.
HEATHER: So then you’re kind of stuck in this where you’re thinking, ooh, I’m not feeling good; if I didn’t have that person telling me I should continue to take it, I probably wouldn’t because I think these symptoms or feelings are coming from this drug, whereas if we removed that component —
DAVID: Yes, absolutely.
HEATHER: — which is kind of what the doctor-patient relationship is in the States — and that, in a lot of ways, is the core of the problem for all these issues we’re talking about.
DAVID: Totally.
HEATHER: If we removed that, we’d be listening to our own — what our bodies are telling us and probably getting out of trouble quite quicker than being under the care of a medical provider because — you know, and we talked about last time just the violence of the system and you experience that when something like this happens to you, and I’m just — you know, I know in reading, you know, a lot of the cases you’ve been involved in, David, like, there’s been healthy people in trials — I think you were involved in doing those — who take these drugs and have people with no mental health problems whatsoever and have this delirium or akathisia or, you know, whatever you want to call it, and in a lot of cases, that delirium or akathisia needs to be really underscored that that leads to either violence against someone else or to yourself. I mean, if that’s not important to know, I mean —
DAVID: Sure. When I think about people who are delirious — and it’s curious; I think about my son when he was about three or four and he got a high fever and, you know, it was literally — he was there with a high fever and I was trying to calm him down, soothe him, and things like that, and he didn’t know who I was, you know. I mean, he maybe did in one way, but just he was acting like he didn’t know who I was. He was going round in circles; he was bumping into things, you know. Person who’s in this kind of state is going to come to harm. We don’t quite know what the harm is. If they have a gun and he thinks I’m there trying to interfere with him that he’s going to shoot me, or whatever, or else he’s going to kill himself, you know. So these are the things that can happen when you become delirious, which, in a sense, everybody recognizes. It’s a bit like having a high fever. It’s a bit like having a liver problem that causes you to be confused. In this case you’re on a drug, a physical thing; it’s not a mental illness. You are being poisoned. And once you say that, people realize that, you know, well, if you’re being poisoned, if things [are] going wrong, you know, we can’t predict just what’s going to happen, but we can be reasonably sure that something awful could happen.
LEE: And probably, too, like, you know, in the news — and Heather and I were just talking about this the other day is how many cases are not linked or maybe more so now but in the past? Like, when you think back, like, I know personally so many people. A friend of mine, her brother ended up jumping off a building. They had — it’s so hurtful for the family. I often think I should go back and ask her, was he on anything, but I don’t even think people were making that connection, certainly not before, and probably not even now in all scenarios when you hear about, you know, these teens with no mental illness ever prior and then going in and, you know, shooting a classroom of kids or — you know, I wonder, what is the connection there? It’s probably greater than we even know.
DAVID: Yeah, I’m sure you’re right.
HEATHER: Yeah, well, and part of the — yeah, part of the issue too — I mean, in Shea’s particular case, and David was the one that pointed this out: I had never really — I had understood that it was the drugs that were doing this, but in his case, in the records, he was, along with a host of other side effects that were causing him problems, he was hallucinating and it was really interesting to me to hear David speak to that in a deposition because — and the doctors attributed that to schizophrenia and that potentially he had schizophrenia, and, you know, David in that deposition was so emphatic that if you’re seeing things, if you’re hallucinating, that’s either, you know, a reaction to a drug or, you know, something — you have a high fever that’s making that happen. That’s not an issue, per se, of mental illness. And, you know, when our health care providers can’t even recognize what these symptoms are attributed to, how in the world, you know, can we expect anyone else? Because they’re going to deny that that’s even — that the drug is the problem.
And I just wanted to point out too, before I forget: You know, Lee, you were saying you didn’t know too much about akathisia, but when Charlie — and I know we’re talking about SSRIs right now, but with the fluoroquinolones I think Charlie and I know Shea had — one of his main complaints, early on after taking the Levaquin, was he had anxiety; he started having panic attacks in public. I don’t know if akathisia is kind of on a spectrum where sometimes it’s very bad and sometimes not so much others; that’s probably something David could speak to. But he wasn’t even the same and what he — the language he used for it was anxiety. But he just — he couldn’t barely even be around people; it just made him so restless and nervous. He couldn’t stand to be in public. And I think Charlie had some of that too. And this is a fluoroquinolone, you know, not an SSRI.
DAVID: Sure. And that’s the problem because when it’s caused by a drug — I mean, if you become delirious, you become anxious to begin with. There’s not anyone who’s delirious who isn’t anxious, OK? And one of the things that they have, first of all, is being anxious before they really lose it; before they become completely confused, they’re anxious. And you go to the doctor who hears them say they’re anxious and they say, well, we have the drug for you; we have an SSRI or a benzodiazepine or gabapentin or whatever. But these drug don’t work for delirium.
And the other thing that can happen — just linked into this; I’m going to bring you to a case which brings this out — is doctors, when they hear you talk about being anxious, they think, well — so, you know, they ask you, what’s going wrong at work or what’s going wrong at home? You know, they’re thinking about the typical mental things that cause us to be anxious rather than the physical things that cause us to be anxious, OK? And I had a lady who had — she had a mild anxiety, OK, and over the years, over a 20-year period, every so often she’d gone along to the doctors and the first one, when she was roughly around the age of 30 or thereabouts, gave her Prozac and she had a very bad reaction to it and halted it instantly, OK? And then some years later she got Amitriptyline, which is also a serotonin reuptake inhibiting drug, and this also caused her to react poorly, so she halted it. Then a few years later, after that, she got Citalopram, and that’s an SSRI and it caused her to react poorly, and she halted it quite quickly. So fast forward, then, to the time that — the instant that I get involved in happened and she’s feeling a bit anxious and she goes along to a doctor she knows who’s actually quite good but who gives her Citalopram, OK, and she has a bad reaction to it and she’s not a wealthy lady. Unlike the first man that I told you about who was able to go to the best clinic there was, this is a lady who really didn’t have money, and when the drug didn’t work out she couldn't afford to go back to the doctor so she went to a health and welfare clinic where she was seen by a nurse who listened to the story and it was clear that the drug she was on wasn’t helping so the nurse decided to give her Prozac. And the lady didn’t make the link back to the Prozac she’d had 20 years beforehand, so she went home with this, called the clinic after 48 hours and said, look, I don’t think these pills are suiting me, and she gets told, well, look, you need to keep on taking them till you see us again in two weeks’ time. She goes back in two weeks’ time and her husband’s with her and he says to them, look, you know, you really don’t realize she isn’t that well; she’s very agitated, she’s talking about harming herself, and this is not the normal her. And at the clinic she makes it clear that she hasn’t had all of the Prozac that she ought to have taken because, again, her view is these aren't suiting her. She does take some pills during those two weeks but not all of them. And the clinic say, look, you really need to take them properly; you need to take them every day. And she’s not happy with this. They don’t — their view later is they say, look, they hear her say she’s anxious but they think she’s got problems at work, and that’s what’s causing her to be anxious. They don’t link it to the pill. They hear that she’s begun to drink more and they don’t realize that actually red wine can be one of the best treatments for the problems that SSRIs cause. They listen to her husband say she isn’t doing anything around the house; she’s not even looking after her own personal hygiene well, and they’re just thinking well, this is the mood disorder; this is nothing to do with the pill. So a week later she drives back to the clinic and in the carpark takes a gun out and shoots herself in the face, doesn’t kill herself. She takes a legal action against the clinic and the nurses, who seem to be decent people, they’re quite up front about the fact that yes, they recognize these drugs comes with a black box warning, that, you know, the standard of care is that you should be recognizing that maybe what you’re seeing is being caused by the pill, but they say, look, we just put it down to when she talked about being anxious at work, we just put it down to the work situation; when she talked about not keeping herself clean and not doing things around the house, we thought, well, things aren’t good between her and her husband. They didn’t make the link to the pill and, you know, that’s the kind of thing —
LEE: Yeah, the lady was making the connection. And it’s funny because I know that Heather has said this — and you were touching on it, Heather — but when you’re prescribed something by a health care professional and like in this scenario where she was told, no, keep going, Heather was mentioning, when we were talking about it another time, which I thought was really good, is if you went to a drug store and you bought something over the shelf, or just even on the shelf, and you started to take it and you thought, ooh, I don’t like the way this is making me feel, you would stop!
DAVID: Yes, exactly.
LEE: But when you’re prescribed, you’re trusting these people and you’re then being told, even when you try and voice, hey, I know you told me not to stop but they’re kind of making me feel weird, and then you’re told to continue, like, you think that’s what you’re supposed to do, then you kind of rule out in your head, like, it must not be connected. And I guess too, like, there’s them not listening to her, but also maybe her not being aware of what this drug could cause because then you might even make a stronger connection, like, so was she properly informed if you get this, this, and this, it’s actually a side effect of the drug and you should stop immediately? Who knows? But that’s not happening very often.
DAVID: There is that, but I just — there’s a lady who many, many years ago brought this home to me. She was a lady who was on an SSRI and she was put on an SSRI because her daughter had also been put on one and it did seem to suit the daughter when she was anxious, so if it suited the daughter there was a good chance, you know, the mum was the same genes, it’s going to suit her, but it didn’t. And it caused her a bunch of different problems; she became breathless and things like that, which you can on these drugs. She became more anxious and things like that. And she came to see me and I said, look, it’s your — I mean, she told me it was the drug and I sort of was a brilliant doctor because I said, you know what? I think what you just told me is correct, OK? (Laughter.) So anyway, I wrote a note — and, you know, the whole point behind this is I send a copy of the letter to the doctor to the lady as well, so she has a letter telling the family doctor her problems are being caused by the pills she was on; we need to change this pill. She has the letter as well, OK? And she comes back a few weeks later and she’s still on the same pills and I’m saying to her, why didn’t you get them changed? OK, you know, you have the letter there saying the pill is causing it; why didn’t you raise this with the family doctor? And she said because she’s scared. Let me explain: This was not a fragile lady; this was a tough woman, OK, who is having serious problems and the doctor is the way out of her problems and when things get worse, she figures, well, he’s even more the way out of her problems now and the one thing she doesn’t want to do is to make him angry with her. And a lot of doctors get very angry. If you raise, you know, the question about could the drug be causing the problem, they read it as something in the area of well, you know, I wouldn’t try to harm you and what you’re saying is I have tried to harm you, you know. So a lot of people do feel that doctors who seem to be awfully nice people can turn nasty if you raise the issue about could the pill actually be causing the problem.
LEE: And especially if they’re relying on that doctor for other health — you know, referrals for other health problems, they don’t want to burn that bridge, like they might think this is the person that’s going to get me to the physio and to this appointment, so they don’t want to, like, lose that connection. I get it.
DAVID: And they don’t want to an entry in the medical record that hints that this is a difficult woman, you know. They don’t want that in there, which often turns up; when you get to see the medical records you see, you know, the doctor is —
HEATHER: Yeah, I know in my son’s records there were several comments that people picked up on that these doctors were kind of sick of me. They didn’t like I had their cell phone. They had told me early on that they couldn’t speak with me, almost like I was an overbearing mother, because I was just getting concerned about, you know, early on in this, when he had entered the mental health system, after I got the records after his death, because, you know, you want your child to be better, and Shea wanted nothing more to be better. He just — and he was a strong young man, but when you’re this sick and confused, it’s very easy to fall under the spell of the doctor telling you you need to take these drugs; that is your ticket to get better, and he resisted that a long time and I think at some point he just felt like I’m going to give this a try.
But this kind of goes back — we hinted a little at informed consent sooner. You know, the problem with this too, in identifying it before it becomes fatal, is my son’s informed consent was given months after he was already on these drugs, so he was signing the informed consent, which is almost a joke in this country, but he was signing off that he knew the risks and the benefits, which — the form is a joke, to begin with. It says — you know, he had — is there any alternative, any reasonable alternatives to taking this medication? It actually says “none” — (laughs) — just none. You know, how long will I need to take this? Years. So you’re being told early on, and I believe in a lot of cases after you’re already drugged — because these are some heavy-duty, you know, antipsychotics, mood stabilizers, and then, you know, for the problems to mask the symptoms he was having from these drugs, benzodiazepines, so I don’t even know how you give informed consent in that context, but I really think it speaks to the influence that the health care provider has over the patient, and in cases where you’re dealing with a patient who is an adult — you know, my son, when this started, was 20, which isn’t really an adult; you still want to be involved as a parent. But even with him giving his permission for me to be included and to know and speak to his doctors, they disregarded that, you know? There’s this very just a clear — we talk about family involvement. In the status and the health plans they all talk about the importance of family therapy, but it’s such a contradiction because in a lot of cases it’s really discouraged to have the family involved. And I think that that — without their involvement, if you’re going to be taking these drugs and the people close to you aren’t aware that this could happen, it’s almost impossible because you can’t expect the patient, when they’re dealing with all these strange things — you know, in Shea’s case hallucinating, anxiety, panic attacks. How do you navigate that? So their dependence on these doctors is incredible.
LEE: It’s the outside — the family and the friends or people in their lives that would be noticing that delirium, not the individual as much. I mean, they might start to feel something, but if you don’t involve the family or take, you know, what they’re saying — like in that case the husband coming into the nurse saying she’s not quite right. You know, like, they’re not going to be in a position after a while to even advocate for themselves.
DAVID: Well, I think the point that you made earlier, if you get this over the counter — and it’s probably worth repeating that a lot of antihistamines we get over the counter are SSRIs, and if we take them and they don’t suit us, we stop taking them. And almost all the SSRIs began life as antihistamines; they’re also antihistamines, you know. But given they become prescription-only antihistamines, everything changes, OK? And the person who’s on them will often recognize the problems; sometimes they won’t. The family will be the people. But all too often, even when the person comes to the family member who’s recognized things and says, look, I think the drug is doing this to me, and some of these things are fairly obvious like, you know, when you aren’t able to make love properly and you say to your partner I’m not able to make love properly; they’ve also noticed it, OK? But, you know, the usual message from the family is well, you should be doing what the doctor tells you. It gets in the way of our just natural common sense, you know, and then the whole idea about being able to go back to the doctor and say, look, you know, this isn’t really working out quite right. Well, as I said the point earlier, which is, a lot of us feel these nice people become nasty if you happen to mention this kind of thing.
LEE: So just going to kind of go backwards. So these antihistamines that you buy over the counter, a lot of them or all of them have the SSRIs?
DAVID: About half of the antihistamines over the counter are also serotonin reuptake inhibitors that can cause exactly the same things that SSRIs can cause. You can use them to treat yourself for being anxious, just the way you might use an SSRI, without having to go to the doctor, you know.
LEE: Wow. And so if somebody was — like, are there certain brands or is it just, like, different in every country? Like, is there — like, which brands are —
DAVID: Yeah, OK. This is the kind of thing that I should be able to answer for you.
HEATHER: (Laughs.)
DAVID: All I know is roughly every time I look at them, you know, half them turn out to be noradrenaline reuptake inhibitors and the other half turn out to be SSRIs. And as I say, drugs like Prozac come from — Lilly tried to make a noradrenaline reuptake inhibitor from an antihistamine, OK, and make about 40 different compounds, some of which are just inhibiting noradrenaline and some of which just inhibit serotonin reuptake, you know, and that’s actually where Prozac came from. Accidentally, you know, they found that the noradrenaline reuptake inhibiting drug didn’t work as well as they thought so they said, well, let’s try the serotonin reuptake-inhibiting one.
LEE: OK. So if somebody — because, you know, we’re going to have people listening to this podcast and you’ve just got me thinking — I don’t actually take antihistamines but people that I know do, so if they were to go and, you know, read the labels and they should be looking for the SSRI ingredient and really maybe watching or making — see if there’s a connection there. And is it something that would be accumulative, for example, if somebody took just an antihistamine because they were just having, like, a bad hay fever day or I know people will get like a bad bee bite or something and take it just once? Is it accumulative, like the more you take it the more likely you are going to have or could have this delirium or akathisia? Is it accumulative on how many you take, or is it like one pill could do the same?
DAVID: Sure. In very, very rare cases, just like with an SSRI or an antipsychotic, just one pill may be all it takes to do the damage. That’s rare, OK? In the case of antihistamine it’s usually a buildup. But if you get these things over the counter, as we pointed out, people usually recognize the problem and stop it. The problem can be, you get an antihistamine over the counter to help you sleep and you become agitated on it, and then you go to the doctor who says, oh, well, I think you’re depressed; let’s give you an antidepressant instead, which is a very similar serotonin reuptake inhibiting antihistamine in essence, and that’s where you’re further down the road of serotonin toxicity than either the doctor or you might have thought you were, because you’ve had the same kind of pill —
LEE: You already had that.
DAVID: — yeah, and a poor reaction to it and they’re just adding a more and stronger version of the same thing, you know, which is — there’s a great book on this, if anyone wants to read, called The Pill That Steals Lives.
HEATHER: Yeah, that’s a great book.
DAVID: This is by a woman called Katinka Newman, and that is just what happened to her. She was given an antihistamine to help her sleep, has a poor reaction to it, goes to the doctor who says I’ll refer you to a psychiatrist, who gives her an SSRI, and literally within a pill or two, she is there hallucinating and thinking she’s going to kill her kids and cuts her own wrists as part of her thinking that she’s — you know, that she needs to kill her children. You know, this is — and, I mean, this a great case of a woman who’s telling the system the whole way through that the pills you’re putting me on are causing the problem and the system not listening to her and adding more and more pills into the mix. And, you know, her family and her friends all say you must do what the doctors tell you. And it’s only when she can’t pay for more hospital care and gets thrown out to the National Health System hospital who, for whatever reason, cut all the pills she’s on — not because they don’t think that she shouldn’t be on pills; I mean, they give just as many pills, but for whatever reason, they cut the pill that she’s on and all of a sudden she has a window where she’s — you know, she’s able to see that yes, the pills have caused the problem and she refuses to take any more. I mean, they prescribe her more, but she’s recognized what’s going on and says, thank you and I’ll take these, but doesn’t take them and ends up well.
LEE: But in a lot of scenarios, my understanding and I’m not an expert in this at all, stopping cold turkey off some of these is as dangerous as the effects of them. It’s like — you know, in that woman’s scenario when she stopped she was lucky that she actually felt a little bit better. But is it not the norm that people actually are worse and there needs to be a way to get them off?
DAVID: Great question. Really great question. OK, and every program you ever see these days and every book you ever read and every article in, you know, Cosmopolitan or whatever, it says these drugs can — might say these can cause problems, but will always say, look, you know, don’t stop your medicines without consulting a doctor. Now, that looks totally responsible, and from a legal point of view, that’s what the media have to do and have to say, but it’s not clear to me that it’s the safest thing to do. I mean, again and again, you see people who are in this kind of position who go along to the doctor who says, no, your drug isn’t causing the problem; you’re a bit like a person who’s got diabetes who needs to have insulin for the rest of your life, and even if it’s causing a bit of problems, you know, you still need to have it. Doctors don’t recognize the problem when you go along to them. Yes, with withdrawal can also cause problems, but if the drug that you’re on is causing problems, one of the best steps to work out is it causing problems is to at least lower the dose.
LEE: Right, and see if it gets a little better.
DAVID: Yeah. What you’ve got to bear in mind is the person who is on the pills is in the best place to work out what’s actually happening, and if they can tweak the dose up or down they can begin to work out well, what’s the right way to go here? And it may be — you know, if they’ve only been on these pills for a brief period of time, coming off them straight away may well be the very best option. I mean, coming off cold turkey, you know, may well be the very best option. It’s not the case that going to a doctor is always going to be a good thing to do.
LEE: No, I get it because they’re not going to take you off, so that message of go and see your doctor is probably not necessarily the right one; more like, you know, you need to slowly work off if you’ve been on for a long time.
HEATHER: Well, that’s what so frustrating about it because what do you do? Because now you’re drugged and now you’re dependent on someone. And I don’t want to seem, you know, completely negative about this, but in just trying to reach a solution, in my mind, in the stories I’ve heard, by the time you’re drugged like that, by the time you’re at the point where my son was at with his doctors, but for me having some huge awakening, which I think we all know is very, very difficult when you’re in this because you’re dealing with a sick loved one — let’s face it: The three of us are here because this has affected our lives, you know? I’m at the point I am now because I lost my son. Lee is here because her daughter, Charlie, got very, very ill. David you shared with us in the prior episode that, you know, you lost a family member because, you know, your mother wasn’t listened to, and that kind of goes to the heart of this issue is that relationship we have with our health care providers. And it was attributed to some stereotypical, you know —
DAVID: Yes, exactly.
HEATHER: — “you’re neurotic,” you know? I mean, that’s someone’s life. It’s so hard to find a solution to this because I will tell you, in walking this walk with my son, when he was on these drugs, that would have been the furthest thing from my mind to tell him to just quit taking them all. You know, we knew things were going terribly wrong and we were just trying to find other doctors. But it’s just, you know — it seems like such a hopeless situation, you know, and now at the other end of it. But how do you get to where we are without this happening to us, you know, having it impacted personally in our families? Because those are the people — the people who have encountered this and have lived it are very open to listening and hearing about it. A lot of people listening to us right now are going to be people who are seeking support because something similar happened to them. But the ones that it hasn’t, I mean, there’s just a — they really don’t care, you know? (Laughs.) You know, how do you mobilize something here to try t raise awareness to prevent this from happening? And that doesn’t — there doesn’t seem to be a good solution to that.
DAVID: One of the things this comes back and the informed consent thing, when informed consent forms came out first it was about 1962 and they were being used to tell people you’re being given a research pill and we don’t know what it’s going to do and it might harm you, OK? And this has been done by university doctors. You know, they’re the ones who introduced them. Later, when the pharmaceutical industry picked up the running of trials, they said, oh, yes, we’ll keep informed consent forms, but they were awfully clever; they added in a little bit to tell you and me if we’re going to get involved in one of the company trials and we won’t ever show your data to anyone, which sounds good to us, OK, and it’s part of the reason that the companies say, well, we really can’t show the data from these trials to anyone, not even to FDA, is because we’ve told people that, you know, we won’t show your data to anyone. But in fact, if we were thinking about it, the one thing we all want would be, if we’re taking part in what they’re calling science, you know, we want other people to be able to learn from what happens to us. We do want the data shared.
If I go into a trial and I’m injured — let’s say I go into a Levaquin trial and I have the reaction that Shea had to this pill, OK, and the companies don’t let anyone see the reaction that happened to me, my involvement in a company trial will have put Shea and you in a state of legal jeopardy because the company’s able to say to you, nothing like this happened in our trials, when in fact it did. And if there was access to my data and you could see well, this person David Healy was in this trial and something the same happened to him, you could have brought me into court as a witness to the kind of injury; I would be saying, yes, this happened to me as well, or could have brought me to see the doctor that was then later treating him. You know, bring other people in to be able to say to the doctor, well, look, yes, just the same thing that seems to be happening to Shea happened to me. But the companies have been able to engineer informed consent forms so that they don’t inform us, they help them to hide the problems.
LEE: To hide. And that’s the most frustrating thing if you’re harmed too, to not have that out there, because there’s a lot of people that have been harmed and they just want their stories to be heard and recognized.
DAVID: Well, it isn’t just [for] stories to be heard, but if the story’s out there with Lee Ford’s name on her story, OK, you can bring Lee into court and cross-examine her, OK, and the jury can see whether they think, you know, this is a story that hangs together, OK, whereas if there are reports to FDA about the same kind of harm happening on this drug and the company lawyers say, well, there’s no names on these, we can’t bring these people into court, so it’s not evidence, Your Honor, whereas if your name remains with the report out there, it is evidence that the courts can’t ignore.
HEATHER: Yeah, this is really tricky in terms of navigating too, because, you know, you think about now the vaccines and you have a lot of people who are suspicious of the vaccines, and one of the talking points early on was this idea of privacy, our confidentiality. It’s no one’s business if I’ve had a vaccine or not; you know, I don’t need to share that with you. And that was, you know, really promoted in regard to the argument for bodily autonomy, but when you really look at some of these arguments that come up, you wonder where they originated because it really — you know, and that has to do more with vaccine mandates and those type of issues, which were kind of opening that up. But this whole idea, especially in the States, of the confidentiality of your medical record, I mean, it’s almost viewed as sacred through, you know, HIPAA and regulatory law. We’re really not — where making our health care decisions and treatments and status public is really discouraged, as almost like a personal right. And I think what we’re trying to do through this is, I mean, we’re talking candidly about it; I think that that’s an avenue to try to change things, you know, is to try to make these stories, give them faces and names and really promote that, and I hope we could do that. But yeah, it’s really confusing and I want to be careful. You know, we’ve talked a lot about what happened to us, Lee and I, and, you know, I know from my experience as a parent you carry a lot of guilt for not helping your child the way you should have, not listening, but I really think we have to balance that to our listeners too; you know, if you’re going — this is a difficult situation to be in; this is hard and it takes a lot to really — once you’re stuck in it, like my family was, it’s really difficult to get out of it, you know? It’s almost like you are dependent — you can have all your hunches and you could know what needs to be done, but how do you now fix it? You have to find someone like a David Healy. You have to find, you know, some — we might be able to groom ourselves to be experts as much as we can in certain areas, but I’m a lawyer, you know? Lee was a nurse; she was in the health care — but I couldn’t treat my child, you know? The best chance I had was to find somebody who could help.
DAVID: Sure. But if things go wrong, we’re not talking about treating; we’re talking about something legal. How do you work out if this drug has caused that harm? And in a sense, it’s common sense. You know, it’s being able to say, well, look, before they had the vaccine or before they had the pill, they were fine; two days later, there’s this problem. Unless you can think of some other reason why this has happened, then the likeliest explanation is the drug or the vaccine or whatever, and it’s sticking to that. Now, it may be that you don’t need a doctor or researcher or whatever to work out how the drug has caused the problem and what else might be done to help treat it. Like, for instance, in the problems with the fluoroquinolones we still don’t really know how they cause the problems they cause and we don’t know quite what to do to put these things right, but, you know, in terms of trying to work out has Levaquin caused the problem that my son or my husband or my daughter or whoever has now, that’s a common sense thing and the person living — either the person themselves or the person living with them is one’s best place to say, well, yes, this looks like it’s done that, OK? And part of the problem with doctors is, you know, they miss the obvious so easily. You know, they figure that if they don’t know how it causes it they can’t say it has caused it, you know, but that’s all wrong.
LEE: Like, I know in Canada — a couple things: The appointments, the way the doctors are — like, can bill, they have a very short amount of time. They’re not — now they’re not even able to do full physicals on people unless there’s some very, very serious problem. It’s very piecemeal. So something like with the fluoroquinolones, it’s a multi-system side effect, so they would potentially be looking for the most obvious — that was one of the first black box warnings was the tendons, and if you don’t have that they’re just assuming that it can’t be related. But also, like, both Heather and I were in legal cases with our kids and the harm that was caused, and they actually turned around in my case and made me — like, I already felt guilty enough; you always do when you have let your child get a medication and, you know, is harmed by it. But they actually turned it around on me and said, well, why didn’t you stop it? (Laughs.) And I didn’t stop it because I didn’t know that those were side effects that it needed to be stopped. You know, it wasn’t me experiencing [it] and my daughter was younger, so — but they try and twist it around so in one case they’re saying, take it as advised and don’t stop the medication — you know, you hear that all the time with antibiotics that you’ll develop, like, a resistance and everybody is — you’re trained that. But then it comes back on you; like, it’s like your fault that you didn’t stop. So it is tough, right?
HEATHER: I remember one of the defenses from Shea’s doctors that they put forth was if he was having these problems, why didn’t I get him adequate care? He was under their care. (Laughs.)
DAVID: Yes, I know, I know.
HEATHER: They were treating him! You know what I mean? Like, why didn’t I get him adequate care, you know? And then you get the whole issues with noncompliance and all that, but it’s like you were — I did get him care; I got him you. (Laughs.) You know? It’s just really discouraging how they just want to wipe their hands if something goes wrong.
But yeah, and, you know, I think doctors do have some responsibility. The only way the system is as it is, the only way we’re in the situations we are is because they allow it, you know? They allow this system to go forward the way it does.
DAVID: Sure. One of the problems, though, is just that, that they don’t realize that, you know, things aren’t safe, that the material they’re being fed about what the drugs do and don’t do, I mean, the harms they don’t cause, is what’s leading to a lot of the problems we have. And because doctors haven’t had the backbone to demand access to the data from company trials and things like that, they risk going out of business. I mean, you know, they are in a position where it’s increasingly hard to trust them.
HEATHER: And do they even need that data when there’s such a large, growing number of people like us? We’re telling them. We are the data. That’s us.
DAVID: No, no, no, sure.
HEATHER: But they don’t want to listen to us.
DAVID: And they’re even less likely to listen to them. I mean, I think what the vaccine story has shown is that people with obvious harms on these things are being told by doctors, well, you know, it can’t be caused by the vaccine. And from the very top, from WHO down through CDC and things like that, they say to doctors, if it looks like there could be a harm on the vaccine, you must look for every other possible cause before you think it could be the vaccine, when the vaccine is often the very obvious cause.
HEATHER: And just the opposite when bad things happen — (laughs) — you know what I mean? My father was very, very ill; he passed away last year. And he actually contracted COVID during that period and they took him over to the emergency room and stuff. He had no symptoms for COVID. He was having other problems. But I was amazed when I got the death certificate. He died two months after having COVID but, like I said, no symptoms from it; he was in his 80s; it just didn’t affect him; he didn’t even have a cold. But on the death certificate the cause of death was COVID. Just fascinating, you know? That kind of just tells you the mindset that, you know, these health professionals are in, and they know it’s not right, you know? My case took nine years of stalling and nearly a decade of, you know, just being pushed back and pushed back. And what the key is it kind of, you know, is a good way to see how hard this fight is — they knew. I have no doubt in my mind they knew they messed up. They messed up royally. But it’s just a race to see who’s going to wear down quicker, you know, because, you know, the hoops you have to go through to pursue these legal cases are just very discouraging and it’s a personal attack on you and your family and even the victim, you know, that they didn’t do what they were supposed to. So, you know, it just gives me so little faith in the health system.
LEE: Yeah. I must say, you were on such an incredibly long journey and it doesn’t get back Shea, but there is — it does feel good to have victory when you get some justice, if not just to have the story and validity and to be able to share and hopefully help others. You know, like when something is proven that they’ve been wrong or that they should — like in Charlie’s case, she shouldn’t have received something. It just validates everything and hopefully that story can get out there and prevent others and maybe stop — in her scenario, you know, it was a whole health clinic across a very large platform of doctors that were using that medication, so hopefully them losing a case will stop that prescription being used.
DAVID: I think when you see a few of these cases, one of the scary things, particularly Shea’s case, how much it took to get to the point Heather’s at now. It’s an extraordinary superhuman effort and you have to know a little bit about how the system works to stand any chance.
HEATHER: You want to do something, you know? You want to do something, but what would have the most impact? And I don’t know the answer to that. You know, we’ve discussed it quite a bit, but aside from this actually happening to you, it’s very hard to make any headway in getting the word out. And it seems like with this pandemic it’s even harder for those of us who are aware. You see these kind of violent reactions to you are even more intense, and I see it so clearly, but a lot of people don’t.
DAVID: Right. Let me ask a question of both of you and see how you react. What I’m going to say may be too controversial. It’s not something that I believe; I’m just saying, you know, if we’re going to force the system to change, how much are we prepared to resort to the tactics of the “dark side,” shall we say, OK? (Laughs.) And it’s this: I’ve written to presidents, I’ve written to the chair of supreme courts, one of whom I used to know on first-name terms, OK? I’ve written to ministers of health, I’ve written to the editors of journals, I’ve written to medical associations about all these issues in saying, look, you know, there’s no access to the trial data, all these articles are ghostwritten and the harms are airbrushed out of existence, and nobody argues. The Supreme Court agrees, ministers of health agree, the people who write the guidelines all agree. No one says anything you’re saying is wrong. But no one does anything. Now, what occurred to me listening to the news in the United States, just in the last few days, is you’ve got people like Tucker Carlson talking about the “great replacement.” White people are being replaced. So I’m left wondering whether it will be a good idea to get in touch with Tucker and say, you know what, Tucker? You’re right. White people are being replaced by the drugs that they get put on. It’s more white people than any other group of people. Other communities are more likely to be communities than white people and tend to be much slower to go to doctors to get pills for the different problems they may have. White people are the ones who are consuming most of these drugs and whose life expectancies are falling and whose reproductive replacement rates are falling, so white people are being replaced. And Tucker, don’t you think that you should start asking the pharmaceutical companies about why they’re doing this to white people? The other option maybe for Tucker is to get in touch with Joe Biden and say, well, you know, we should have a national health service so that these poor other people who aren’t white can get put on just as many pills as white people are on and maybe that would, you know, mean that, you know, white people —
LEE: Even out the numbers.
DAVID: Well, yes, exactly. Now, the issue is — I mean, you know, we’ve been playing nice up till this; is there a place for playing not so nice, trying to wake people up, you know?
HEATHER: And a reason a lot of minority communities are so adamantly against a lot of the treatments and the drugs that, you know, middle-class white people take in a heartbeat for their moods or whatever else, is because of their history. I mean, you could read the history of how they have been exploited not only by our government but by our health care system. So they have that knowledge. They have that knowledge in them. My family has that knowledge in them now.
DAVID: They know you should be slower to trust the system than the average white person is.
HEATHER: Right. If the health system is the source of lessening your lifespan or, in my son’s case, killing him, what do you have, you know? (Laughs.)
DAVID: We’ve lost something. We’ve lost the ability to get health to get to work for us. We’re actually working for it now. And the more pills we take the more likely you are to go in hospital and the more likely you are to die earlier and the worse quality of life you have. You know, the system’s not working to keep us out of hospital because “that’s not going to make money for us,” you know, so —
HEATHER: Yeah, so science is essentially killing us at this point.
LEE: It’s not the science. It’s the lack of science.
DAVID: Yeah, yeah.
HEATHER: Well, it’s what’s being — yes, it’s what’s being reported as science.
LEE: It goes back to what we talked about in one of our previous talks with you is just how the randomized control trials are being done and who’s looking at the actual raw data. So it’s not necessarily the science, it’s just not being — we’re not seeing the full picture. The information that’s coming out and that everybody is relying on is, you know, only a partial piece.
DAVID: True. But also, just linked into that, there’s just this thing which has come up a bit is you got to a doctor and they’re not listening to or seeing you, you know. What’s gone wrong? I mean, it’s the “why do you not believe me” factor, and that’s what we’ve got to get back. You know, you have a bright person who comes in to see you and says X, Y and Z, where on earth are doctors going if they’re not going to be listening to you, if they’re not going to be seeing you, listening to you, and working with you, you know?
HEATHER: Another reason why being your own expert is crucial.
Well, thank you, David Healy. It’s been a real pleasure having you with us today. On behalf of myself and Lee and all of our listeners, we really appreciate you taking the time to speak with us today. I only wish that I could have spoken to you when my son O’Shea was alive. Having a doctor like you who truly listens to his patients and their concerns is truly a matter of life and death and he’d likely be alive today if that could have happened. So I want to say thank you. We just appreciate your time on our podcast today.
Thank you for joining us today on this episode of “Know Risks,” and remember, being your own expert is the best way to prevent yourself or your loved one from being harmed.
LEE: And please join us for future podcasts and help support us by subscribing, providing some feedback, and of course giving us a five-star rating. You can also follow us on Facebook and Instagram at knowrisks, and check us out on website at knowrisks.org, where you can read our stories, suggest future topics, and share your stories.