My intention in writing this blog is to share the experiences I went through with my son, starting with the first manifestation of his illness and our journey through numerous subsequent episodes. I also want to provide commentary as a parent and psychiatrist on issues that these experiences bring up, such as how the diagnostic process works in Mental health, how to work with treatment providers, and medication issues. My hope is that reading this may be helpful for people with Mental health issues and also their families and friends.

Brittle

In diabetes, the concept of a “brittle diabetic” refers to a patient for whom the correct dose of insulin is hard to find. If the insulin dose is slightly too high they can become dangerously hypoglycemic, and if they are under-dosed their blood sugar can rise sky-high, with ongoing negative health consequences, possibly even reaching a level of diabetic ketoacidosis with impaired consciousness. The analogies with Bill’s bipolar illness are apt. Finding a combination of a mood stabilizer and neuroleptic that he could tolerate, given the side effects of these medicines, was already quite difficult. In addition, the doses needed to keep him stable were quite large, which then incurred greater side effects, such as weight gain, lethargy, and a general sense of malaise. It’s no wonder that time and again Bill sought to lower his dose of neuroleptics or discontinue medication altogether.

During his first hospitalization, he was thought to have schizophrenia and was treated with haloperidol. He had painful leg cramps known as extra-pyramidal effects, since the medicine affects the whole body, not just the brain. He was switched to Risperdal, another drug in the same class, which didn’t provide any additional benefit and continued to cause leg cramps, although less intense than those produced by haloperidol. Because of the side effects, his psychiatrist naturally prescribed as low a dose as possible, which, along with Bill’s own desire to minimize medication doses, may have in turn contributed to his frequent relapses.

The chief side effect of the mood stabilizer lithium is tremors, which Bill didn’t like because his hands shook, which made him self-conscious. Lithium is the oldest mood stabilizer and has the strongest evidence base for its mood stabilizing effects, against both mania and depression. An alternative, divalproex (Depakote), is also effective as a mood stabilizer, and this was commonly prescribed for Bill.

His mood could swing suddenly from euthymic (normal) to manic and then into depression. It was hard for his doctors to manage these rapid mood shifts, and they relied upon Bill to keep them informed about what his mood state was in order to make medication adjustments. He was often unable to recognize the upswings in mood until they had already begun to take hold, and by then he was often in the grips of a desire to keep his heightened mood with its concomitant sense of well-being, elation, and euphoria.

As it became more apparent that his psychotic symptoms carried a strong manic (as opposed to schizophrenic) flavor, his psychiatrists switched him to the so-called atypical neuroleptics, a group that includes Seroquel, olanzapine, and clozapine. These drugs produce more calming and sedation while at the same time having strong effects on thought disorder, hallucinations, and delusions. Bill liked the antipsychotic effect as well as the sedating effect because it helped him sleep. However, he was always reluctant to give up the manic symptoms, which he enjoyed.

Trying to intervene long distance

I was apprehensive about the fact that Bill now appeared to be having somatic delusions or at least a heightened somatic focus, not uncommon in mania. “Are you sleeping OK?” I asked him.

“Yes,” he assured me (even though his journal showed he had already started to sleep less).

“I’m going to call the Recovery House staff to let them know I’m worried,” I told him. I called to let them know that Bill seemed more unstable and asked if he could get some extra doses of medication. Although they told me that they would call the doctor providing on-call coverage, I later found out that he didn’t receive any extra doses of neuroleptics.

As a family member, this is one of the most difficult aspects of trying to provide support—staying in touch but really unable to have a meaningful impact on the treatment course. This is extremely frustrating since the extra information to convey—that you know they’re hiding their meds, or they’ve mentioned hearing the voices again, etc.—is vital information that informs or should inform the care plan. It also brings up family issues: Am I being too intrusive? Do I have the right to disclose information that my family member hasn’t given me permission to disclose? Will this damage my relationship with them? These issues all make the position of being on the sidelines and yet privy to critical information even more frustrating.