Changing Antipsychotics

by Jay Paul

Last week on this blog, I gave a rundown of what has been ailing me for the past five weeks—namely, wooziness. We still don't know what was causing it. A celiacs test came up negative. But in the course of investigating it, we found that my prolactin levels were twice as high as they should be. Prolactin is the hormone that in women causes them to lactate when pregnant. Risperidone, which I was on a low dose of, can cause prolactin build up because of its effect on the pituitary gland.

So I am now off risperidone and on a low dose of olanzapine. Olanzapine causes you to gain weight more so than other antipsychotics. I have had problems with that for the last 25 years. I have recently been losing weight. So far, I am two days into the olanzapine, and I have lost some weight. My strategy is to eat set amounts only at mealtimes and not eat according to hunger. This is not easy. We'll see if I succeed.

Two things concern me: olanzapine can raise prolactin as well, although it is not as bad an offender as risperidone. And I feel sedated, particularly in the afternoon. This concerns me because after 13 years on Seroquel, between about 1997 and 2010, I suddenly got hypersomnia— a medical condition which means you sleep all the time. It took the sleep doctors a while to figure out that it was a side effect. I worry about sleeping all the time on olanzapine. 

I worry about a lot of things right now—constantly and obsessively. Thank goodness I am not worried about having a computer in my body, having my thoughts monitored, or sleeping through nightly break-ins into my apartment. I once had all of these delusions. Now, my worries are more grounded and possible: will olanzapine give me diabetes, will it cause me to sleep all the time, will it keep my prolactin high, what do I do if it doesn't work out since most classes of antipsychotics have given me serious problems?

Why do I worry constantly? I suspect it's from going off the risperidone. Stopping an antipsychotic can stimulate aspects of the brain that were previously suppressed. Anxiety is a possible result. So, yes, I am anxious from coming off the risperidone and sedated from going on the olanzapine.

In the case of both risperidone and olanzapine, I was on the lowest doses possible without splitting the pill. Still, I have these reactions.

A psychiatrist once told me that I am extremely sensitive to these medications.

What does it feel like to be anxious and sedated at the same time? It is not pleasant. I have kept up my walking and meditation in spite of the difficulties, and I sometimes come face-to-face with how miserable I feel while meditating. When the mind calms, truth sometimes reveals itself. It makes for an unpleasant meditation, but I usually make it through until the timer goes off—50 minutes twice a day.

As far as walking goes, I have kept it up even though the withdrawal from risperidone sometimes makes me nauseous. I also sometimes feel clumsy and uncoordinated. The wooziness I had previously seems to have gone away.

The alternative to not meditating and walking is to just sit around my apartment without scheduled activities. The anxiety would really kick in, then. I need to keep going.

What's my hope? In a few days I hope the anxiety from the withdrawal abates, the sleepiness from the olanzapine also abates, and I start feeling like my normal self again. I haven't felt normal in five weeks, now. This is very possible. In June and July, while on the low-dose of risperidone, I felt better than I have in decades in spite of the pandemic and the political unrest.

At some point, I will get it back. 

Sometimes, I wonder if I could go off antipsychotics. I have friends who have successfully transitioned to a med-free life who were in as rough a shape as I once was. I also have friends who have tried getting off of them and disaster struck. My luck so far in being taken off them has been bad. I don't want to put my family through the misery of my going through another period of delusions and hallucinations. 

If olanzapine doesn't work, it's back to Vraylar. According to my psychiatrist, that is our last choice. After that, it's off antipsychotics and using therapy to deal with any problems that may ensue. 

Things are tenuous right now, but they are not bad. Some others have it much worse—I am not in prison, starving, or being oppressed. And perhaps I've painted a more negative picture of my current situation than is warranted. After all, I don't feel great and the anxiety causes me to see potential pitfalls everywhere. I have this sense of doom, that something terrible will go wrong. The thing about my premonitions is that they never come true.

Maybe in a month I will be sailing along on olanzapine with safe prolactin levels. Let's hope.