Dear Readers,

You will notice that we have been focusing on the role of medication in mental health recovery in recent posts. One of those offerings was a podcast discussion between Windhorse clinicians with a collaborating psychiatrist, Earle Shugerman, and another was a written excerpt on the Windhorse view of medications from the core text, Recovering Sanity, by Dr. Ed Podvoll. The perspective of mental health professionals, as in these two offerings, is obviously important, but it is incomplete. What of the view from actual clients—who have first-hand experience of psychiatric medications? Most clients come to Windhorse on various prescribed medications and remain on at least one, albeit ideally at a reduced dosage or after changing to a more effective drug with fewer side effects.

In order to shed some light on what it means to take psychiatric medication, I spoke with a group of current clients and others with lived experience about the road they had travelled. Rather than recording the dialogue, I took notes on what was shared. To protect each person’s privacy, I have not used names or other identifying information—other than gendered pronouns. Not surprisingly, experiences varied, as did the speakers’ senses of the value of medications in their own mental health journeys. Allowing me to listen to their stories was an act of trust, and my goal here is to respect them by accurately representing what they shared—using their own words whenever possible. Because there was more than enough rich material from the discussion, it will be presented in two written posts. The following is Part One.

Thank you for reading,

Lori S. Heintzelman

Considering the Experiences of Medications and Whole-Person Health—Client Perspectives (Part One) 

By:Lori S. Heintzelman

As I thought about the topic of personal experiences with psychiatric medications, I wanted to remain open to whatever clients felt was important.  At the same time, I had prepared some basic questions that could serve as a starting point. Among those questions was whether those I spoke with generally found medications helpful. I also had some notion that alongside usefulness, there were tradeoffs (e.g. side effects). There was also the question of how meds work—do they make things clearer, and what was the effect on both cognitive processes (like memory) and emotions? There were other areas of inquiry I had not anticipated, and the answers were more complex as well.

First, most clients had been through years of trial and error around prescribed psychiatric meds—taking particular drugs and in various combinations, with periods of being on them, at reduced dosages, and off them altogether. And most agreed that these drugs are a fact of their lives—even if they are currently not taking such medications. They spoke initially and candidly about managing side effects.

Side effects are, indeed, common—and some are more familiar than others. Lethargy is among them. One client spoke of how his meds made him really tired within the first hour of ingesting them, but that he adjusted to that over time, acknowledging overall benefit. Another client, clearly ambivalent about medications, reported that they make him feel tired or discombobulated.  More than one client spoke about weight gain, which is a known side effect of second-generation (also known as atypical) anti-psychotic meds and is particularly unwelcome. One client said that she went from being quite small to having gained over 100 pounds. She feels hungry all of the time, which is unfortunately paired with a slower metabolism for processing what she does eat. Another reflected that weight gain and tiredness are depressing in themselves, which can reinforce a cycle of negative feelings.

One person who has long engaged with mental health systems related that he had been taking a particular older drug for several decades, and it was one of the few that worked well for him. He noted that he was very sensitive—“most drugs make me sick.” When I asked what that consisted of, he explained he got a sick feeling in his head and body—”like strobe lights going off.” Unexpectedly, the drug that he counted on has been recently discontinued. He even called the manufacturer to confirm that it was no longer available. So, he explained, he had to go off “cold turkey”. The drug chosen to replace it has the weight gain side effect. He was furious about that, even as he acknowledged that he has felt somewhat better with the new drug.

Another client experiences the side effect of akathisia, which she described as a scary feeling of restlessness—which makes her “feel like jumping out a window.” She noted that she has taken beta blockers to help with that sensation. This points to an additional side effect of some medications: they bring about other mental or physical health issues, which then need to be addressed. The solution often takes the form of an additional medication. One client was given Adderall at age 17, which, she said, “gave me a psychotic break”. Medications given to treat the latter made it worse. She summed it up by saying, “I take drugs to deal with the horrible things drugs have done for/to me.” She feels they are a necessary evil in her life. She did go off all medications at one point early in treatment, but it was not good. And as a result of changes in her nervous system, she can’t take anti-depressants. She reflected that had she never gone on any meds, she might have lived a better life.

So, what of going off medications entirely or at significantly reduced dosages? Regarding whether that was desirable, or even possible, the responses varied. The issue also involves whose idea it is to try this route. One client addressed the experience of an early incarnation of her mental health team wanting to wean her off all meds. Albeit well-intentioned, it was not successful, and she regretted going that route. She identifies as schizo-affective, is currently on regular medications, and said that “it would take a big shift for me to reduce again.” She followed up with, “The idea (of being medication-free) is not the fact.” Another said that his brother asked if it was time to go off meds, to which he replied, “Have you seen me off meds?!”

The issue of choice around medication was significant for the clients I talked to, especially those who were minors when they first were prescribed psychiatric meds.  One, whose mental health issues surfaced at age 13, said, “I envy people who got a chance to decide. I was force-medicated at 17 (during a hospital stay). I would have preferred other ways to address the problem.” Her attempts to refuse were not heeded because of her young age. She later pointed to more recent neuroscience about how the brain isn’t even developed until about age 25. She spoke to how medication interfered with her developmental path. Because of medication during her teens, she feels frozen, “like I didn’t learn to deal with things.” Another’s concerns about medication possibly being prescribed at too young an age extends to those in group settings, indiscriminately and as a convenient form of behavior management.

I asked about what they understand the primary purpose of meds to be. My own bias about functionality as the goal was revealed when I asked, “What’s more important —to feel good or to function well?” The folly of my question, as posed in either/or terms, was apparent when one client responded quickly: “If you can’t feel good, you’re pretty much sunk.” At the same time, another suggested that “the point of meds is not to make you happy.” She felt that pharmaceutical company advertising—directed at vulnerable people—was misleading i.e. promising more than it could deliver. Another said, “I wanted my authentic process”—even if that meant she wasn’t terribly capable of navigating the demands of everyday life. This theme of authenticity was apparent throughout. One client expressed a belief and a fear that psychiatric meds fundamentally change people—“they don’t seem like themselves.” Functionality is clearly not viewed as all there is to life. In fact, the greater clarity that came with many medications, which I assumed would lead to improved function, was not always welcome. One said of her manic break in her teens, where she was given lithium and came out of the mania, that it made her more aware than she wanted to be. “I was not on board with being back in the world,” she said, because of the anxiety it produced.

This anecdote about the power, and risk, of medications to break through extreme states calls to mind a statement made by Ed Podvoll, “The major point of medication usage is to ensure that the integrity of the wakeful mind is protected.” While increased awareness is essential to recovery, wellbeing on all levels needs attention. And in Windhorse’s whole-person approach, the waking up is tended with caution and considers the wishes of the client. The issues of personal choice, social supports, and true collaboration with professionals in this process of awakening will be taken up in Part Two. 

Lori Heintzleman began working for Windhorse in 2008 on a very part-time basis, offering technical writing services, light research, and administrative support.  She entered the clinical realm as a Housemate in 2011.  Currently Operations Coordinator, she also acts as a Basic Attender.  Lori has a PhD in Linguistics, with an emphasis in sociocultural issues such as identity formation. Although immersion in the mental health realm is not the career she envisioned for herself, she finds it a natural fit for her educational background and her values.