People don’t always really talk about how tiring it is to experience a severe mental health episode. My psychiatrist increased my lithium dose after my last update. He didn’t even hesitate, so at least I know he has my best interests at heart.
The first few days after that were good enough. My body felt this immense relief, like I could finally relax. And I was very tired. I rested that week before I took a trip to Seattle for a concert with my friend, during which I came down with a cold, probably from all the stress and changing weather or whatever. I’m having trouble remembering that trip, though I just got back home a week ago.
I remember I had fun. So for a week or so after the lithium dose increase, I was doing better. But I got back home and kind of fell apart. I wanted to take a shower on Friday. I couldn’t make myself do it until yesterday, Sunday. My sense of time is seriously warped, because it feels like I put it off for a week. On Friday, I got myself drunk as a means of self-punishment. And I’ve been in bed ever since, struggling against the urge to self-harm, trying to stay asleep for as much as I can. The last month has been hell, and it feels like it’s been this way for the last six months, not just one. It feels like everything is falling apart, and I can’t even bring myself to care.
It feels like I’m drowning. The only thing my friends and family can do is sit on the other side of the glass and watch me. I feel like if they threw a life preserver out to me, I wouldn’t even grab on.
I wonder if this is partly due to my inability to handle stress. I recently joined a dating app, and that’s going about as well as I expected, considering the fact that I’m in a complicated position emotionally and tend to think most people are repulsive. But I’ve had a couple matches, and I think I don’t handle the stress of meeting someone new very well at the moment. I know dating is typically a little stressful; like I said, I don’t handle stress well. And now I’m having this sort of episode, which I can’t imagine is going to make anyone particularly interested in getting to know me more.
I’ve also been hearing voices again, off and on. I try to have music playing all the time to offset them. My auditory hallucinations are most often in my head, as hallucinations aren’t always outside the head. I hear other people’s voices in my ears, having random conversations. It frustrates me because I don’t know what they’re talking about, and they ignore me when I confront them. This has been going on for somewhere between two and three months now.
I met with my psychiatrist again today. First of all, he pointed out that I am depressed. What gave it away, I wonder? Then he gave me a long look and said, “We need to have a talk.” My first thought was, “Oh no, he’s going to suggest inpatient treatment.” But he went on to talk about a very old antipsychotic: clozapine (Clozapil).
We don’t know why clozapine works. But we do know that, for patients like me, it works when nothing else does. My psychiatrist isn’t happy with the progress we’ve made, and obviously neither am I. He put me on lithium, which changed everything for me, but due to my CKD, I can’t take as high of a dose of that as I need to see the most benefit. And that only addresses the mood aspect of my schizoaffective disorder. I’m still experiencing hallucinations and paranoia, often to the point where I don’t want to leave the house. I’ve been on many antipsychotics that double as mood stabilizers: risperidone (Risperdal), aripiprazole (Abilify), olanzapine (Zyprexa), and now cariprazine (Vraylar) and lurasidone (Latuda). Possibly others many years ago when I was first getting treatment. None have managed to effectively treat my schizoaffective disorder. So why hasn’t he suggested clozapine before?
Clozapine, like all medications, has risks. It was first developed back in 1958 and was marketed until 1970, when it was banned across Europe due to patient deaths. One complication related to clozapine–in approximately 1 of 100 cases, not an insignificant number–is agranulocytosis, which means a lowered white blood cell count. This increases the body’s chances of infection, and if it goes untreated, can have fatal consequences. To combat this, when they prescribe clozapine in the US, the patient is required to do blood labs every week for six months. Then, every two weeks for six months, and then monthly for the remainder of treatment. These labs are shared among the prescriber and the pharmacy, and a third entity I can’t remember. If your white blood cell count drops, they take you off the clozapine.
My psychiatrist also made a point to say how sedating clozapine is. He prescribes it for the dose to be spread out in three parts over the course of the day just to make the sedating effects more manageable, for the first few weeks at least. He really, really drilled the sedation side effect into me, so I’m assuming I’ll just be in bed a lot for a while. Honestly, the results wouldn’t be much different from what they are now–I’m almost always in bed now, just because of depression rather than exhaustion.
These are in addition to the same generic side effects of most antipsychotic medications: dizziness, nausea, dry mouth, weight gain, etc.. Clozapine does have a lower tendency of causing tardive dyskinesia, or TD–involuntary and repetitive movements of muscles, typically around the mouth and tongue–than other antipsychotics.
So clozapine is our next move, I think. It comes with a heavy upfront cost–the blood monitoring and the significant sedating side effects–but nothing else is getting me where we want me to be. I have an appointment with my psychiatrist in two weeks where I will give him that decision, and he’ll get me started on it.
We’ll see how I hold up until then…
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