Dec 22, 2008
This is the closest I've come to recovery from tardive psychosis. I've had it for 10 years, most of the time, it was not known by anyone. Including science. There were sporadic case studies of this "hypothetical condition" and one that said "tardive psychosis is the hardest form of psychosis to treat". Let's change that to "was". It CAN be treated. And identified. But how did it start? The same as in the hypothetical case studies when an antipsychotic stops working at the same standard effective dose. That doesn't mean that's what it always is when that happens. But for me it was. I should have been on Clozaril earlier (generally what is done when multiple antipsychotics don't work or cause extreme akathesia). But I couldn't tolerate Clozaril. But now that I am on glycine and glutamate antagonists are in study given that they do not cause tardive dyskinesia after they are realized as medications this may never happen again. But it still needs to be treated.
I was first aware of it going off Klonopin in 1998. I did it the wrong way, too quickly and got extreme visual hallucination with full body withdrawal symptoms. That's normal and a good reason not to ever change any medication, especially a benzodiazepene without the directions of your psychiatrist. But when I went back on the Klonopin the withdrawal symptoms stopped. The horrifying visual hallucinations did not. Given that Klonopin treats tardive dyskinesia, it was treating that while it was happenning as well as the other culprit. That was tardive psychosis. It was Sept. 1998. I had exited the Bauhaus concert. Everyone was dressed as a goth (not myself and my friend, I just liked the music) and into nihilism in their talk. But then I saw the real thing, It was midnight and there was this homeless girl. And she was standing on the corner for a reason. Like anyone I felt sick. I wanted to give her some money to buy food. But she might just use it for drugs as appeared to be a heroin addict. And it might be taken the wrong way if I approached her. I walked away but like anyone else I wished there was something I could have done to help her. But there were disturbing visual hallucinations. And the Seroquel was working. I wasn't generally psychotic overall. That was the beginnings of tardive psychosis.
Multiple antipsychotics just wouldn't work. Or would work and at a standard dose stop working all of a sudden. I was started on Clozaril and was one of the few people to develop extra pyramidal side effects from it. Then I had abnormal movements. Those were diagnosed as tardive dyskinesia. The Clozaril didn't cause it (the reports of it causing that are extremely rare, however, in not causing it, it can reverse itself if caught in time as the brain can heal from other neurological disabilities, as psychiatry is learning, it does not cure it although its a good antipsychotic agent overall) but it didn't mask it either. I developed dissociative delusions. "I'm like "The Man Who Wasn't There" I said to my psychiatrist "I don't exist".
I already detailed my recovery with glycine but near to Halloween 2007 something "descended" on me. Disturbing perceptual hallucinations. But when I went off the Lamictal because it was causing extra pyramidal side effects (again a statistical rarity although one factually reported by my psychopharmocologist to the FDA) I of course became wildly manic (since then I follow provider's instructions closely). We didn't know what was going on. The glycine was titrated and it worked on psychosis extremely well. But the perceptual hallucinations turned into full dissociative states. One time I was even dancing with my alter ego. Now. Let's stop. I was "dancing". Why? I had to remain in motion from tardive akathesia. The Clonidine worked for a while as a mood stabilizer. And it helped on the dystonic and akathestic spasms. And in one study an alpha blocker helped tardive psychosis. Now let's take these two statements from my psychopharmocologist named to providers "recovered as well as on any FDA approved anti-psychotics or better" and "the level of psychosis is low to none but extreme during periods of abnormal motor activity".
The rhodiola I found out from the research neurologist helped. The Zofran I inquired about here and gained a very knowledgable answer (much gratitude) did as well. Now with Tenex (another alpha blocker) replacing the Clonidine and at a full dose the recovery is well under way. I showed my psychopharmocologist that collage I did and just before it was raised to the final dose I had grandiose delusions of wanting to control someone with psychotic thoughts of spiderwebs projecting from my arms. I was terrified. I looked down. My arms were frozen in motion in Parkinsonian form. I took the muscle relexant Skelaxin prescribed for that time of day. It stopped. Tardive psychosis. And thus this morning I thought of the reality of the delusions (the references as regards age are because I experienced child abuse although from no one alive now). "The Little Match Girl" was based on the author's mother's experience as a street beggar. And the collage I did with myself as Tiny Tim (although you can see in the collage it is distorted in a psychotic way but all the figures reflect cold, "feelings of detachment" and frozen limbs "Parkinsonianism") who was based on a real child with a severe orthopedic disability. But what did Charles Dickens accomplish? Much. Laws against child labor. Against child abuse. But why was I obsessing on this? My body was rigid in dystonic spasms. I took a pill of rhodiola. It stopped. Completely. My dopamine level had gone up. Tardive psychosis.
But what remains? I will look at the traffic lights and "taste the colors". Synathesia. But am I psychotic overall and thinking "they taste like candy"? No. My tongue is curled up to the roof of my mouth as is typical for tardive dyskinesia. The "matchgirl" is clearly neurological as it can morph to sparks or flames. I know when I see this what is going to happen. Tardive myoclonus. Get to the ground or you'll be there (and I've been ruled out for epilepsy and all other known causes). And the photo I posted is from 1998. I was experiencing "altered states" but I didn't know what. I was on a proper dose of medications and wasn't psychotic and have never taken recreational drugs in my life. The photo was changed with a filter to reflect what they looked like. But what were they? The onset of tardive psychosis.
But now ten years later, I obtained a recovery from a disability hard to pin down. And now it will be documented. With my notes incorporated. And it will take much research before it can be named as a criteria and exact treatment guidelines given. But rhodiola, Zofran and alpha blockers (among other agents, I did not try Tetrabenzene) are pointers.
And I do want this to be used to help other people so I may discuss these treatments, as a consumer, with a Parkinson's group I'm affiliated with. Because "tardive psychotic depression" and its treatment given that these anti-Parkinsonian agents will treat Parkinson's psychosis and depression. People with Parkinsons's often don't talk about neuropsychiatric aspects of it. I'd like them to. But as for other people with tardive psychosis and as to where they are, I think of that girl I saw on the street. I don't think she's still alive. They are. But they can be helped. And should.
But there would be much concern in me saying this because all antipsychotics, Clozaril aside have the potential to create tardive dyskinesia and now we may have something new to deal with as a potential long term side effect (although extremely rare) so I'll end on a positive note. Albeit a scientific one. A quote from a study on a new antipsychotic in development. What do I want? I think you know by now. "For everyone to have the mental recovery I did without the neurological disabilities". So my "tardive psychosis" is not "hypothetical" to you by now. But neither is my recovery with glycine. All the provider agencies I spoke to agreed that research should be in new treatment modalities and the glutamate antagonists were a very promising class. So if you question whether these medications will be realized I'll leave you with this quote. And if more were studied, the more potential there is for change. It was always within the IL movement the motto "if you see resistance to change find a way to overcome it". I don't see any resistance anymore. Change is now. Embrace it.
"Notably, patients treated with LY2140023 did not differ from
placebo-treated patients with respect to prolactin elevation,
extrapyramidal symptoms or weight gain. These data suggest
that mGlu2/3 receptor agonists have antipsychotic properties
and may provide a new alternative for the treatment