I started a course on “Brain Health” today, which is part of a research study being carried out by CAMH. Incredibly happy to be part of the course and study, but some of the topics discussed were a bit .. heavier and led to some rumination, and more feelings of helplessness as I continue to try to recover from my psychiatric experiences. It led to a long social media post elsewhere and I realized that the content may be better shared here. It may be a little bit repetitive, but that’s the joy of PTSD… revisiting traumas or injustices experienced, and the feeling of “unescapable shock”, a term I learned when reading The Body Keeps the Score. I am still living in unescapable shock that I can’t find a way to communicate adverse/paradoxical side effects of medications in a way that is heard and seen.

I’ve had medication make me “split”, according to medical reports. And during those times I acted in ways that alienated me from many people. I barely remember it and while I have to accept what’s happened… it’s incredibly painful to lose the support of friends and loved ones because I was “mentally unwell” and unable to explain my behaviour otherwise. It’s also damaged (in some cases irreparably) new connections I’d made since discovering I was autistic, which has isolated me further. I have to accept what’s happened, because blaming medication feels like an excuse. But… there is medical evidence that people with neurodevelopmental conditions suffer higher incidence of paradoxical reactions to certain medications. Yet it doesn’t seem possible to have those reactions acknowledged. If this goes unnoticed it can be devastating to one’s ongoing care and treatment.

If someone is in distress and is given medication to manage agitation or excitation before they are assessed, how can medication side effects be differentiated from symptoms of a psychiatric condition if they are assessed before the effects of medication wear off? This is a question that seems to be unanswerable, so far.

There’s been a substantial increase in adult #Autism and #ADHD diagnoses (and even more who are undiagnosed), that are frequently confused with mood/personality disorders, especially in women… and it really worries me to think about how many others this could impact.

In my experiences, paradoxical reactions are often dismissed because of low prevalence. Apparently it’s under 5% in general population. But that number jumps to 15-30% for those with neurodevelopmental conditions. And if treatment is involuntary, there could be a >60% chance of paradoxical reaction in people with NDD and an increase to >20% chance in general population (more likely related to trauma of the event).

Medications used to manage patients in distress are usually a combination of antipsychotic and benzodiazepine. Both have higher incidence of paradoxical reactions in the NDD population. But if the tranquilizing effect ultimately sedates/induces sleep, the effects would only be seen upon waking.

Effects of those medications can include agitation, aggression, restlessness, and disinhibition; all of which can be seen as part of several serious psychiatric conditions. Many of these conditions are ultimately treated with the same classes of medications, so it can lead to a cycle of medicating distress.

Benzodiazepines can also cause anterograde amnesia, so an individual could have zero recollection of behaviours exhibited while medicated. I had tried multiple times to tell professionals that I felt like I was losing time, or blacking out… but I’d have never known about other behaviours if I hadn’t gone through multiple reports. And any effort I’ve made to highlight these concerns have gone ignored. 

I don’t know how to get help with this, and I keep trying. It’s scary to know I can’t feel safe accessing medical care in a crisis but it’s where I’m at these days. It can be a really dark place, especially when it often feels like I’m facing it alone. 

But it’s not just about me. I keep reading more accounts of similar experiences… and so I feel compelled to add my story, in case there is someone out there fighting a similar battle, or trying to support a loved one.

If you read this, thank you. I wish that during those times, I could have found a way to communicate what was happening more clearly, but I wasn’t able to. Now, all I can do is move forward and keep advocating for understanding, and hopefully have some impact in effecting change. And survive this for my child’s sake.