NADD Bulletin Volume II Number 1 Article 3

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These Pills Make Me Feel Funny: Helping People with Developmental Disabilities Balance the Effects of Psychotropic Medications

Michael W. Barath

Many of you reading these words have first hand knowledge of the benefits and risks of taking medications. Whether it’s for ourselves, the people we work with, or our children, the right drugs at the right dosage can provide great benefits.

Psychotropics are the most prescribed class of drugs in the U. S. today. They are the drugs that influence the mind. They affect neurotransmitters which in turn affect feelings, thoughts, moods, perceptions, and behavior. They include antidepressants, antianxiety agents, and neuroleptics, the drugs used to treat mental health problems. Whether it’s Prozac to manage depression or Risperdal for psychosis, there is no doubt that the correct balance of medication can enhance a person’s quality of life, if not outright save that life.

But psychotropics have many serious side effects. They range from mild allergic reactions to more serious symptoms. Some of the most common are gastrointestinal distress such as nausea and diarrhea, and disturbances to the nervous system, such as insomnia, fatigue, nervousness, and irritability. Some of the side effects impair day to day functioning and quality of life. Others, more serious, include tardive dyskinesia, a permanent neurological condition characterized by dyskinetic movements.

In addition to side effects, individuals can experience serious withdrawal symptoms, especially if the drugs are discontinued quickly. Symptoms include agitation, aggression, a decrease in inhibitions, and sleep disruption. These symptoms can be softened by a slow withdrawal from the drug, but gradually getting off the medication is no guarantee the symptoms will not occur.

I’d like to share my own experience with prescription medications. I’ve been living with clinical depression since my early teens. As an adolescent I remember feeling so bad about myself, so lifeless and useless, that I’m lucky to have made it through high school. At its worst I felt hopeless and lost, with little chance of living a normal life. Feeling isolated from family and friends, I often fantasized about walking into the woods with a shotgun and ending my life. At its mildest, I was colored by melancholia, sad, alienated from friendships. Always with me, it never had a name. That was a time when few doctors understood depression, and safe, effective medications had yet to be developed. These feelings stayed with me through my 20’s, and into my 30’s, when I was finally diagnosed by a good psychiatrist who not only listened to what I had to say, but included my opinions in treatment options.

He prescribed Prozac. Despite the sensational press at the time I was not afraid to take the drug, mainly because I trusted my doctor. I started on 20mg of Prozac, once per day.

Prozac did not radically change my life. It didn’t transform my personality. It didn’t elevate my mood or make me high. What it did was give me a base, a foundation from which to build. Up to that point my life was like building a house on quicksand. No matter what the plans, no matter how hard I tried, things always crumbled and I didn’t know why. Prozac gave me enough stability to learn new skills, to stay at a decent job, to finish graduate school, and to get on with my life.

Despite periodic setbacks, I stayed on Prozac for seven years until the drug began to lose its effectiveness. I spent longer and longer periods seized by depression until fear forced me to seek help. Again, I was lucky to find my current psychiatrist, one who not only heeds my suggestions, but is very empathetic and caring. In October 1997 we stopped Prozac and began Effexor, a powerful drug which must build up slowly in the body. I started at 18mg for one week, then 37mg the next week, slowly increasing the dose until I was at 225mg per day. But the drug is not without unpleasant side effects: nausea, bloated stomach, irritability. After two weeks at 225mg per day the side effects were so intrusive that we decided to try another medication.

Getting off Effexor was harder than getting on it. I slowly backed off for one month until I was back down to 37mg per day. When I stopped completely and began taking Wellbutrin, I felt fine for a few days. But then I began experiencing some very odd feelings: vertigo, dizziness, a fogginess in the mind, not to mention fear from not understanding what was happening to me. It worsened, until three days later, I could barely stand without toppling over. I couldn’t drive, I could barely walk. On a Sunday I put a call in to my psychiatrist, who called back within 15 minutes. He explained that I was probably feeling withdrawal symptoms from Effexor. He suggested I stop the Wellbutrin, and restart Effexor. I did, and the symptoms disappeared within two hours. It took another six weeks to stop Effexor completely. Each time I tried the vertigo returned and I would take just enough to alleviate the symptoms. But when I finally stopped and began Wellbutrin, a more serious problem developed. The Wellbutrin produced a paradoxical effect. In other words, it made me more depressed. And when I say depressed I don’t mean just a little bit sad. I mean Hopeless. Deadly. I spent an entire day in bed, crying, unable to get up. We stopped Wellbutrin and restarted Effexor. It was a week before I was stable again. After all that trouble I now take 75mg of Effexor each day, just enough to manage the depression without causing serious side effects. I’ve accepted the fact that I need to take medication to manage my depression, and I’ll most likely take it for the remainder of my life. The alternative is worse. I still experience mild side effects, but I take solace knowing that if I have a major problem, excellent medical assistance is only a phone call away.

Contrast my experience to that of a person with mental retardation, particularly a person with a dual diagnosis.

At Whipple Dale Center, the large adult workshop where I’m employed, we serve over 300 persons, each with some kind of developmental disability. Unlike 20 years ago, when most of the people in sheltered workshops presented with Downs Syndrome and other forms of mental retardation, today’s workers have a wider range of problems. Of the 300 individuals now at Whipple Dale, 61 have an additional mental health diagnosis, with another 20 or so who exhibit serious mental health problems, but have never been officially diagnosed. The influx of persons with mental retardation and additional mental health concerns demanded a change not only in our system of providing care, but in our personal philosophies as well. Gone are the days when our most persistent problem was teaching vocational tasks to a person with mild retardation. To be effective staff we are now required to seek knowledge about the nature of mental illness and the complexities of medication. Currently, 120, or 40% of the folks at Whipple Dale are on one or more kinds of psychotropic medication, prescribed for conditions ranging from depression to schizophrenia.

Experts argue whether or not people with disabilities need treatment with psychotropics as a routine part of their care. But according to sources, 30% - 50% of adults with MR/DD living in U.S. institutions, and 25% - 40% of those living in the community take at least one psychotropic medication (Reiss and Aman, 1998). Yet despite the large percentage of this population who take psychotropics, they face singular problems in their adjustment to and regulation of their meds. Limited input into their care plans, communication barriers, and misunderstanding by caregivers combine to aggravate their problems.

Unlike me, who was able to experience a single medication over a long-term period, people with developmental disabilities may have their prescriptions changed frequently, with little or no input into the decision to do so. Individuals may not remain on a specific medication long enough to judge its efficacy. In fact, with each change in residence, with each emergency hospitalization or trip to a Crisis Intervention Center, a different doctor may alter the type or amount of medication.

Take, for example, “Ross,” a man in his late 40’s who has spent 40 years of his life in institutions or psychiatric hospitals. Although he has lived in a group home for over 5 years now, Ross’ chronic problems still require temporary hospitalizations, lasting anywhere from 3 - 10 days. During the past year, when Ross was hospitalized 8 times, his medications were changed 8 times. Drugs discontinued by one doctor were reordered 2 months later by another doctor in a different facility. Dosages were moved up and down, administration times were changed, and other drugs were stopped outright. During this time Ross’ behavior was unstable and he frequently became aggressive. He repeatedly complained of dizziness, nausea, and fatigue, and frequently screamed or tried to run away. Yet, despite our awareness of his medication disruptions, those of us around him were quick to dismiss his complaints as purposeful behavior. It was simple to assume his actions were designs to escape work or gain attention, rather than complications from his ever-changing med regimen. Unfortunately for Ross, and many like him, it’s easy to misinterpret what he’s trying to tell us.

One of the most pervasive problems for persons with mental retardation is difficulty with communication, a major obstacle to effective treatment. Yet, physicians rely heavily on self-reporting by their patients to know when medication is working. Cognitive functioning interferes not only with an individual’s faculty to understand the questions being asked, but actually impedes the ability to understand what is happening internally. Changes caused by medication may be so subtle that the person does not understand the changes when they occur. Even if she senses something is different, she may have a hard time putting those thoughts into words. Complicating matters even more, physical concerns such as an undeveloped palate or spasticity affecting the throat muscles make speech difficult to understand.

We depend, then, on our observations as staff and parents to report changes to the physician. While observation may seem the best method, the information we gather is most likely incomplete, and often outright inaccurate. Despite our best intentions, especially when we’re close to someone who exhibits the same annoying behaviors day after day, it’s difficult to be objective. It’s very easy to read our own biases into interpreting someone else’s actions. Even with excellent training, the most experienced of us have difficulty distinguishing medication side effects from willful behavior.

Answers to these issues are not simple. Many doctors lack expertise when treating persons with developmental disabilities. Medical schools provide inadequate training regarding dually diagnosed individuals (Reiss and Aman, 1998). And too many physicians still dismiss problems, whether it’s learned behavior or serious mental illness, as being inherent to mental retardation.

We, ourselves, as professionals and parents, often lack understanding. We are quick to dismiss all challenging behavior as something that can be controlled, or turned on and off at will. A review of recent medication changes may indicate otherwise. Such information, while providing important clues to understanding behavior, doesn’t excuse a person for the way he acts. It may, however, help us devise better ways of working with him. More importantly, we may treat others the way we expect to be treated for things beyond our control: with respect, dignity, and understanding.

Medication therapy, when practiced effectively, may be beneficial for some of us. When monitored or applied haphazardly, it may intensify problems for others. Someone like myself, who has the ability to self-analyze, and access to above-average medical care, has a good chance of striking a balance between the advantages and disadvantages of psychotropic drugs. The people we serve, however, our sons and daughters, our residents in group homes, our workers in supported employment programs and sheltered workshops, don’t have it as easy. It falls to us, staff and parents, to monitor that balance for them. And with a little knowledge, some understanding, and an open mind, we can.

One of the most important things to remember is that drugs don’t magically solve problems. Like my experience with Prozac, they don’t automatically cure unhealthy thoughts or behaviors. They provide stability. And then learning can take place. One of our most fundamental roles is to provide that learning, to provide those supports. For, as a young man once told me, wise beyond his 28 years, most of which were spent in a psychiatric hospital, “Even when I take my pills every day, Michael, I still need you to help me.”

References

Reiss, S and Aman, M, eds. (1998). Ohio State University: The Ohio State University Nisonger Center.

For further information contact:

Michael Barath
3748 Bellwood NW
One-Time Rights
Canton, OH 44708