As I continue living with this disease, Lewy body dementia, I have some post-game analysis on one of the most terrifying stories I’ve written about all this.
The post, which is on this blog, is headlined ‘How I stopped the horrific hallucinations that threatened my family, my sanity and my life.’
I am writing to add some nuance to the declaration in that story that I took one wonder pill — primavanserin — and ‘poof’ the ‘hallucinations went away.
That’s an oversimplification and I am tweaking the post a bit to better reflect reality, and you know how much I appreciate reality.
I do believe in the ‘wonder’ drug, primavanserin (Nuplazid), and that it was instrumental in helping me climb out of my hallucinations and back into reality. But the issuance of that new medication was part of a total review and adjustment of all my medications.
We went to several doctors where I received prescriptions for a medley of medicines. I do remember believing that I could use the carbodopa/levadopa on a sort of use as needed situation which led to me overmedicating myself, I suspect.
Carbodopa/levadopa treated the Parkinsonian effects of my Lewy body dementia, enabling me to write, walk easier and rid myself of that horrible, hard-to-describe feeling inside. I now think the increased use of that carbadopa/levadopa coupled with doses of anti-anxiety medication, an antidepressant and seriquol sent me into a psychosis, driven by my Lewy body dementia, where I was immersed in an alternate reality.
Once dropped into this state of unreality I had a hard time communicating to my caregivers what I felt was going on.
We sought opinions from several doctors and settled on a plan from Dr. Kasia Rothenberg, MD, PhD, at the Cleveland Clinic. She added the Nuplazid, and cut back on doses of just about everything else I was taking.
I found it interesting that as my medications were re-configured, my hallucinations built a story around it.
In these latter stages of hallucinations, I had gained control again of my house and delivered a dramatic speech to my nemesis, Red John, and his family telling them they had to leave my house.
And I haven’t had the hallucinations since. Well, I should qualify that. I still see Red John and other cohorts in various patterns, in crumpled bed sheets,, in the windblown movement of trees and bushes. Red John is sometimes smiling like we were old buddies, other times the look will be menacing but I can make it go away by looking away. These glimpses are a far cry from the immersion into another world that I went through last summer. Thank God.