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Look Again: Mental Illness Re-Examined

SEASON 3 | EPISODE 6: Psych Meds: The Whole Story

Summary

Like any prescription medication, Abilify, Risperdal, Clozapine, and other anti-psychotics have side effects. And like any medication, they are prescribed to help a person manage an illness. Anti-psychotics can help with a number of different illnesses, but often used to help manage a person’s symptoms of schizophrenia, including paranoia, delusions and hallucinations. However, there’s a movement that wants to shift mainstream thinking away from using medication to manage the symptoms of a serious mental illness. It’s encouraging people to accept and live with the symptoms of serious mental illness, symptoms like voices, hallucinations, and other symptoms. It’s a controversial topic and we’ve brought back a familiar voice from our first season – Dr. Diane McIntosh, Psychiatrist and Clinical Assistant Professor at the University of British Columbia. In this episode, we talk about the use of medications in treating serious mental illnesses like schizophrenia. Resources:

Resources:

Dr. Diane McIntosh – Bio

Blindsided – Dr. Diane McIntosh’s podcast

tAntipsychotic Selection Is Important for Reduced Nonadherence in Schizophrenia

Look Again Season 1, Episode 5: The Truth Behind Psychiatric Medication

Anti-Psychotic Medication – CAMH

Transcript

TRANSCRIPT:

00:00:05

Clip 1: Who wants to take a pill for the rest of their life. It’s not like you sign up and go, Oh, goody, woo! I’m taking a pill for the for the rest of my life. I have a disease that people cannot see. It’s not like breaking an arm. It’s not like cancer where everyone’s sorry for you because you have to go chemotherapy. Everyone looks at you and says, Oh, you don’t need that pill. Just think positive. And if it were that simple, don’t you think I would try that? Of course, thinking positive is part of my makeup, but it’s not the answer. I have an organic brain disorder where my brain does not produce the chemicals that other people produce. When I get depressed, I get depressed. When I get manic, I get manic. And when I hear voices, I cannot control them. It doesn’t matter what I do. My last psychiatrist, he said, You’re going to have to live with the voices for the rest of your life. You’re going to have to figure out how to manage them. And every drug I’ve taken, none of them have worked. It’s not something like I wake up every day going, I’m in joy. I’m taking my meds. But part of it is now I am a little joyful that I have a medication that keeps me stable and my thoughts are my own. And I can manage the voices without doing what they command me to do. Because if I did what they commanded me to do, then I will either kill myself or kill someone else.

00:01:29

Faydra Aldridge: Clozapine. Abilify. Risperidone. All are just a few of the many antipsychotic drugs available today. These drugs, like any other prescription drug, has their side effects, but they can also help a person manage their symptoms of schizophrenia, including paranoia, delusions and hallucinations. And yet there’s a movement that’s been picking up a lot of speed that wants to shift mainstream thinking away from medication towards a greater acceptance of living with the voices and the hallucinations that come with a serious mental illness. It’s a controversial and hot topic right now, but that’s what this season is all about. Today, we brought back a voice you may remember from our first season, Dr. Diane McIntosh, psychiatrist and clinical assistant professor at the University of British Columbia. And we are going to be talking about the use of medications when treating serious mental illnesses like schizophrenia. Dr. McIntosh, it’s wonderful to have you back on the show. Thanks for being here.

00:02:30

Dr. Diane McIntosh: Thanks so much, Faydra.

00:02:32

Faydra Aldridge: Okay. So let’s start off today’s show by talking about the different types of medication. I understand that there are two main groups of antipsychotics. So what are they and how do they work on the brain?

00:02:47

Dr. Diane McIntosh: Well, I would argue there are several different groups or types of antipsychotics, and actually each one is a distinct entity. And that’s why there are many people who have tried different ones that took time to find the one that was right for them. But generally, we classify antipsychotics into two groups. One is the sort of older conventional antipsychotics, the only ones that were available more than about 20 years ago. And then the newer, what are often called atypical antipsychotics. These ones have some of the same challenging side effects that the older ones have, but also less of some of the challenging side effects that the older ones have. They’re all effective for treating schizophrenia, but every drug works. It doesn’t mean they work in every brain. And now we have some newer ones in the atypical group that have some added benefits that they have some benefits for depression or anxiety, as well as some of the more challenging negative symptoms associated with schizophrenia.

00:03:50

Faydra Aldridge: So how do you, as a clinician, Dr. McIntosh, decide whether to give an individual a first generation antipsychotic or the second generation or atypical antipsychotic?

00:04:03

Dr. Diane McIntosh: I have stopped using first generation antipsychotics completely and have for many, many years. And that’s because of the kinds of side effects, the challenges associated with those older age. And so the reason that I tend to use some of the newer ones, because I treat people that have mood issues, anxiety issues as well. Those tend to be a little bit better. But there are patients that do better with some of the older atypical agents, olanzapine, clozapine being an excellent treatment. They come with a lot of side effects and one of the biggest challenges is related to the weight gain or metabolic syndrome that sometimes goes along with these medications. The problem is that disorders like schizophrenia, bipolar disorder come with challenges related to metabolic syndrome and weight. So you put those two together, both the medication and the propensity associated with the disorder. We have to be really careful about our drug choices and trying to reduce the risk of weight gain, metabolic syndrome and other side effects as much as possible. And now we’re going to pause and take a moment to listen to this person’s experience taking antipsychotic medications.

00:05:21

Clip 2: For years, I struggled with trying to find the right meds, and I’ve been on a lot of different antipsychotics, different antidepressants. I’ve done lithium, abilify, stelazine, haloperidol, trazodone, seroquel and none of them worked until this past year where I just, my past admission to hospital, the olanzopine was what they put me back on. And for a year now, because I’m also sober, can relate to what I was saying about self-medicating with marijuana. And I also did other drugs as well that were thinking that I could help my mental health that way. But just over 14 months ago, I, I quit everything and went back into the AA programs and a program. And I’ve been sober for 14 months now, and that has been my lifesaver. So two things happen. My substance abuse is now stable and I’m in recovery and my mental health is now stable. And I take my medication every day. And I realize now that for the rest of my life, I can never come off this medication, because if I don’t want to remember or relive the experiences that I had in psychosis, then I need to do the right thing. And the right thing is to stay on medication and not drink alcohol or drugs.

00:06:41

Faydra Aldridge: So, Dr. McIntosh, listening to that clip and based on all of your experience, she listed so many medications. So why is it so difficult to find the right combination?

00:06:53

Dr. Diane McIntosh: I think what she said, all of it was so critically important and there were a lot of different layers that I think are worth exploring. First of all, we know that all of the Health Canada, the FDA approved indicated medications work because they’ve had studies that back them up and years of experience in the use of these medications. But in reality, they don’t work for every brain because every individual is unique and has unique needs. So we need to unfortunately, because we don’t have lab work or X-rays, radiographs, it can say, okay, you have this kind of disorder that is going to require this treatment. We have to do a lot of trial and error. The other part that’s important is the fact that each individual has side effects that they would find completely intolerable versus ones that they can live with. So this is truly a partnership. It should be between the prescriber and their patient to find out what works best for them, not just from a is it affective perspective, but also from a tolerability perspective. She mentioned something that was also critically important, which was her sobriety and the fact that when especially young people who have a new onset of schizophrenia or bipolar disorder often will use substances, whether it’s alcohol, cannabis or other substances to self-medicate or maybe just because they like using them. That really throws a wrench in the works when you’re trying to find a medication that works. So you can see that she tried a number of different ones. None of them worked for her until she was put on the olanzapine . But she also was using multiple substances which could have confused the picture. The other challenge here is with adherence that people don’t like. I wish they weren’t called antipsychotics. They don’t like to take medication. They certainly don’t want to take a medication label like that often. They’re hearing erroneous information from other people that have negative views. It’s really hard to take your medication every single day, particularly if there’s side effects that you don’t love. So the combination of substances, challenges with adherence and the fact that our medications are not perfect make it really difficult to find the right treatment and make it personalized. Personalized medicine means the right treatment for the right person at the right time.

00:09:14

Faydra Aldridge: So how do we know when a drug is actually working or not working?

00:09:19

Dr. Diane McIntosh: We have what are called clinical scales that we can use so that the most objective measures that we have, we’re all supposed to be using these clinical scales in our day to day interactions with our patients. So we have measurements that we can follow over time. And of course, the most important thing is the conversations that we have with our patients about their experiences, how they’re functioning, what their quality of life is like. So it’s not just the symptoms, although the symptoms are critically important to try to manage completely, but also how are you living your life? How are you getting things done? Are you enjoying your days? Are you able to do the work or be in school or parent your children effectively? All of those pieces go together to know this medication is working.

00:10:04

Faydra Aldridge: So how long does it typically take to know if a drug is working?

00:10:09

Dr. Diane McIntosh: This is probably going to startle you, Faydra, but it takes about two weeks.

00:10:13

Faydra Aldridge: Two weeks. Wow.

00:10:15

Dr. Diane McIntosh: And too often I meet patients who have been on the same treatment for six months a year. They still have significant symptoms and nobody’s changed anything. And critically, it takes about two weeks. If nothing is happening at two weeks, there is no improvement at all. The likelihood that that drug is going to work is almost none. Now, that makes people anxious. Sometimes when I teach this, although there’s a whole bunch of data to support this. So I say, okay, in two weeks, have a follow up, see how things are going. Check in with your patient. Are they having any side effects? Are they managing to take the medication most days? Give it another couple of weeks. But you should know within a 4 to 6 week period, max. Is this drug going to help? If you’re not finding that, you have some significant response to that medications, significant changes in functioning, it ain’t going to work and it’s time to try something else. And unfortunately, we have not had that kind of approach to psychiatry, nor do we have access to care that’s adequate to manage to have that kind of connection and make sure that people are continuing to have a positive experience with their medication.

00:11:29

Dr. Diane McIntosh: Now, Dr. McIntosh, we’re going to play another clip from someone describing their experiences being on antipsychotics.

00:11:39

Clip 3: Being going on and off medications since I was 16. So it feels like a long time anyway. But truly, the biggest thing that frustrates me is the negative side effects of these medications that you’re taking or I’m taking because they don’t really talk about that a whole lot, like the antipsychotics that they prescribe are so sedating, like they give you a brain fog. Like it really feels like you’re almost like a zombie. I may be overgeneralizing a bit, but every single antipsychotic that I’ve been on has had some sort of similar effect in that regard, and it’s not enjoyable. I don’t want to take it, but I know I have to because it at least dissolves some of the hallucinations that I’m experiencing and some of the delusions that I’m experiencing.

00:12:26

Faydra Aldridge: So in that clip, we heard some of the delusions. Dr. McIntosh why do some symptoms still exist even when taking medication?

00:12:36

Dr. Diane McIntosh: As we spoke about before, people often struggle to take their medication every day. I never ask anyone anymore, Are you taking your medication? I ask. How often do you take your medication? Because it’s hard to take it every day. We have better medications that are less sedating. We need to be much more effective in personalizing treatment and listening to the side effects that people are experiencing and trying to mitigate those side effects so people will stay on their medication. I mean, that very short clip of what is wrong within psychiatry practice. We don’t listen. We don’t address symptoms. We’re fearful of combining medications somehow. It’s wrong to ask someone to take more than one medication. But I think most people would like to have their symptoms fully managed and manage those side effects simultaneously by being thoughtful about using combinations. If we do it in high blood pressure and hypertension, if we do it in diabetes, why can’t we do it in another medical disorder, schizophrenia? We have to be more thoughtful about our treatments. We need to listen to our patients both the challenges that they’re experiencing, because what happens is if you’re not taking your medication or you’re having side effects you don’t like. The drug doesn’t work, it doesn’t get optimized. We don’t manage every symptom. And we know, again, a ton of data to show us the importance of managing every symptom. Some of our disorders are neuro-progressive, which means they can get worse over time. So we want to try to manage every possible symptom. But if someone saying, Well, you’re zombified me, so I’m not taking anymore, we got to do something different. We got to make a different choice. And it’s another piece I want to mention. We need innovative treatments in psychiatry. The ones that we have are not fantastic. They’re difficult to take. So we need to make sure that we’re being creative in our pharmacology to help patients to be able to take these medications. But even more importantly, we need new treatments. Recently, we got a new treatment in depression called esketamine. It’s a nasal spray. That’s the first new mechanism of action in 30 years for the treatment of depression. We are still having the same mechanism of action that we have used forever in schizophrenia. We need new treatments, and the way that we get those is by having pharma industry. It has to be very well regulated, but they’re not going to bring treatments to Canada if we can’t do trials and get them covered in Canada. And this is the greatest barrier for so many patients is there in tolerability. So the side effects of medications. They don’t take them and they’re not optimal.

00:15:18

Faydra Aldridge: You’re listening to Look Again. Mental Illness Re-examined. A podcast brought to you by the B.C. Schizophrenia Society and B C partner organizations. I’m your host, Faydra Aldridge. This podcast would not be possible without the support of the community. From the bottom of our hearts, we want to thank you for caring about serious mental illness and everything that’s around it. Together, we truly can make a difference.

00:15:45

Faydra Aldridge: Welcome back to Look Again: Mental Illness Re-examined. We’re talking to UBC Clinical Assistant professor Dr. McIntosh about the medications used for various serious mental illnesses and how they work. But now we’re going to switch gears and talk about the movement that’s been happening quite slowly for decades, but seems to be picking up a lot of speed lately, which is living with the hallucinations and choosing not to medicate. So in May of 2022, the New York Times Magazine published parts of an author’s novel about this no medication movement. And some people hailed it as the way that we should be going with treating mental illness, while others feel it’s irresponsible, creates harm. And it actually does the complete opposite of removing the stigma around illnesses like schizophrenia. Dr. McIntosh, over to you. What are your thoughts on this movement?

00:16:39

Dr. Diane McIntosh: I would say that psychiatry is responsible for this movement, and that is because we have not done a good enough job of educating, of listening and helping our patients to find the best possible treatment for them. And also, the reality is that we don’t have a full understanding of where schizophrenia comes from. We know that there is a biological genetic risk associated with it. There are psychological risks and social risks that all come together, but we don’t have the whole story. So there are lots of people and factors that go into the responsibility for this movement. But it’s such a sad movement in my mind because of those failures. People will make a decision not to treat a very serious mental illness, and the outcome of those decisions can mean a massive decline in quality of life, changes in relationships and inability to parent or to maintain partnerships and inability to work or go to school. All of those issues are very real. When a serious mental illness, whether it’s bipolar, schizophrenia, depression is untreated.

00:17:54

Faydra Aldridge: Dr. McIntosh, earlier you said you don’t like the term antipsychotic drugs. What term would you use if you could change the name today to something else?

00:18:05

Dr. Diane McIntosh: It’s a good question because the big drive in the world of psychiatry is talking about a mechanism. And most people aren’t comfortable using the term dopamine antagonist or dopamine partial agonist. So what the way I talk about it is I use it terms like these are medications to treat psychotic symptoms because antipsychotics, particularly the newer ones we use as antidepressants, they work to treat anxiety as well. So most medications have more than one use mood stabilizers that we use to treat bipolar disorder. Most of them are anticonvulsant medications, so we use them for seizures. So I try to use medications mechanistically. What is the mechanism of action? What is its job? And then how can we use that most effectively to help that patient manage their symptoms? So antipsychotic is a misnomer. Patients want quality of life that’s at the top of the pile, right? I want to enjoy my life. There is always something else we could do. There’s always a path ahead. But it requires access to care. And this is the greatest challenge in our health care system now is no one can access high quality care.

00:19:16

Faydra Aldridge: As you said, the relationship between the person living with the illness, clinicians such as yourself and family members, that circle of care.

00:19:26

Dr. Diane McIntosh: Psychiatry has always had this thing about, you know, don’t talk to anyone else. There’s only the patient and obviously we have to get permission. I can’t just talk to anyone I want to. But that’s why so early in the relationship, I started asking people, Who do you love? Who can you bring in here? Can you audiotape or videotape our discussion? Because I know your husband’s worried about the medication that you’re on to engage the patient on every level and help them to feel like, okay, this is my story. I’m Diane, the Navigator. You drive the ship and I want to help you to get through those rocky periods as quickly and swiftly and safely as possible.

00:20:04

Faydra Aldridge: This is one thing that I’ve never understood. If a child or young person is diagnosed with type one diabetes, they bring in the family to be able to practice giving an injection. And yet with mental illness, there’s this hesitancy to bring in family members to be able to allow that family member who loves and cares for that person to be able to be a part of that journey.

00:20:26

Dr .Diane McIntosh: Yeah, well, it’s just not the way I’ve ever practiced. I mean, obviously the agency belongs with my patient. They get to decide who they love and who they want as part of this. And I don’t care who it is, everyone can be part of the discussion, but it has been a conundrum to me from the get go is why would we not talk to people who love this person and can help to support them? We know social support is the greatest protector of your mental health, so why wouldn’t we want to be part of that whole solution? I don’t know.

00:20:56

Faydra Aldridge: And one final question. If there’s somebody who is paying attention to this movement and is starting to listen to some of those voices that are out there talking and trying to get more people to join this bandwagon, what would you like to say to them about the effects and the benefits and the outcomes of using medication?

00:21:20

Dr.Diane McIntosh: I’ve always tried to practice medicine and to be a psychiatrist treating people as I would like to be treated and of course, having children, how would I want my child to be treated? And it’s heartbreaking to me that someone’s child is making a choice not to take medication because they feel let down, because they haven’t found the right treatment, because their side effects haven’t been addressed, because they’re struggling with addiction. And the reason it breaks my heart is because I know the impact it has on their whole life. These symptoms are not benign. Having auditory hallucinations, experiencing delusions every day are not benign. More importantly, is the risk that happens to that individual, their risk of suicide, the risk to their relationship. Those are my greatest concerns when symptoms go untreated. And it just feels like a real failure of our system, that this has become a movement that’s been able to gather some steam.

00:22:19

Faydra Aldridge: Dr. McIntosh, thank you so much for being here today. We always learn so much from you. So thanks for being here.

00:22:25

Dr. Diane McIntosh: Thank you, Faydra. It was my pleasure.

00:22:28

Faydra Aldridge: And a huge thanks to you, our audience, for joining us for this episode. Together, we can change the narrative around mental illnesses like schizophrenia and end the many myths and stereotypes that still exist today. If you have any questions or any comments, tweet us @BCSchizophrenia. And to get our latest episode, be sure to follow on Apple Podcasts, Spotify, or anywhere you listen to podcasts. And if you want to hear more about how schizophrenia affects families, we have another podcast for you three moms from the East Coast, West Coast and Middle America host a unique podcast about mental illness. Each host has an adult son with schizophrenia, and they’ve written acclaimed books about their journeys. They say it like it is with the goal of helping families learn more about serious mental illnesses. Listen to Schizophrenia: Three Moms in the Trenches wherever you get your podcasts. We hope you join us next episode again. Talk to you soon.

00:23:30Narrator: This podcast is brought to you by the B.C. Schizophrenia Society and the BC Partners for Mental Health and Substance Use information. Where a group of non-profit agencies providing good quality information to help individuals and families maintain or improve their mental well-being. ABC Partners Members are Anxiety Canada, B.C. Schizophrenia Society, Canadian Institute for Substance Use Research, Canadian Mental Health Association’s B.C. Division Family Smart. Jessie’s Legacy. The North Shore Family Services Program and Mood Disorders Association of B.C., a branch of Lookout, Housing and Health Society. The B.C. partners are funded and stewarded by B.C. Mental Health and Substance Use Services, an agency of the Provincial Health Services Authority. For more information, visit www.heretohelp.bc.ca.


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