Columns

When serious medication side effects are merely hypothetical, it makes it easy to be an advocate for medication "compliance." After all, psychiatric disorders are real diseases that need real treatment--if we are to be well. The medications available are a better choice than trying to tough it out, go without medication, and end up with a very bad outcome, such as repeat hospitalizations, incarceration due to behavior caused by psychosis, and a deterioration in basic functioning.  

However, taking medication comes at a heavy price. I have a friend who gained over a hundred pounds in a short time period due to psychiatric medication, has lived with this weight for about two decades and is unable to get back to a normal weight. Many psychiatric medications affect metabolism, and make it much harder to exercise due to their sedating effects.  

(Psychiatric consumers can’t take appetite suppressants because they are stimulants, which therefore can cause us to have severe symptoms of mental illness and can trigger a manic or psychotic episode.)  

Yet, other than weight gain, there is another side-effect of antipsychotic medication, called "Tardive Dyskinesia." Psychiatrists claim inaccurately that this is a rare effect of taking antipsychotics; I was told it occurs in about one percent of those who take antipsychotic meds.  

It begins with an uncontrollable "rolling" of the tongue. And then this worsens, spreads to the face, causing facial contortions, and eventually affects the person's neck and upper body. This side effect not only causes a lot of suffering due to movements that the person cannot control--it is also very disfiguring.  

I was told by a psychiatrist that Tardive Dyskinesia is sometimes irreversible, and can actually worsen when and if the antipsychotic medications are discontinued.  

"Atypical antipsychotics," when they first became available, were promoted as the latest and greatest thing, and were accompanied by claims that they didn't have the same side effects as the older medications. The newer medications, such as Olanzapine, Risperdal, Seroquel, and Abilify, are stronger than their predecessors. The advent of the newer medications seems to have coincided with the falling apart of much of the psychiatric consumer/survivor movement.  

Contrary to initial claims that these medications were better and didn't have the same side effects, these newer, stronger medications also can cause Tardive Dyskinesia, perhaps more frequently than did the older medications.  

When a medication first hits the market, its long term side effects are essentially unknown until people have been ingesting them for ten years or so. This is applicable to all medications and not just psychiatric ones. The American public is one big pool of experimental subjects for the drug companies.  

The claims of the drug companies that "Atypical" antipsychotics didn't cause the same side effects as the older ones came at a time when the side effects were unknown due to the drugs being new. 

My friend who gained all of that weight also developed early stages of Tardive Dyskinesia. That person had taken antipsychotic medications only in small dosages, primarily for sleep. This individual stopped the antipsychotic. (She was able to stop the antipsychotic because she has a bipolar diagnosis. People with a schizophrenic diagnosis are not usually at liberty to stop an antipsychotic unless it is replaced by another, similar-acting drug.)  

It is still unknown if this woman's tardive dyskinesia will go away. So far, this symptom seems to have partially subsided.  

This week's column is not intended to make people with psychosis go off medication. We have an actual disease that will get worse without treatment. In some instances, switching medications to a different antipsychotic might be an option. Different people react to different medications differently. While one person could take Prolixin and get this side effect, someone else could have this reaction from Risperdal. I am not encouraging noncompliance with treatment for people with severe psychiatric disorders. I encourage working with a psychiatrist who is hopefully one of the conscientious ones, and together arriving at the best solutions.  

When I took Risperdal for a number of years, I eventually became unable to tolerate it. The muscles in my neck tightened and gave me a pinched nerve, causing extreme pain in my arm. It took a number of months of trial and error before I could figure out that Risperdal was doing this to me. I switched to something else and haven't had that problem since then.  

When a potential side effect of a medication is merely hypothetical, it is far easier to dismiss compared to when it actually takes place.  

These are serious medications intended to treat serious illnesses. If I had an alternative to taking these medications, I would opt for it. It is important for people to realize that many of us who must take psychiatric medications are brave people, often making a huge sacrifice.  

The medical establishment, that profits substantially from our illnesses, owes it to us to do research for a treatment that will fix tardive dyskinesia, and, furthermore, owes it to us to create medications for mental illness that do not ruin our lives.