Auditory Hallucinations Simulation

I hope technology will help us to simulate others’ experiences. This is especially needed in psychiatry. I often found myself lacking appropriate words to describe what I felt. My previous psychiatrist misdiagnosed me with schizophrenia. There is currently no lab test to verify whether someone does have schizophrenia, my diagnosis was based on a verbal consultation. I don’t know what people with schizophrenia experience so I can’t know whether my experiences were actually similar or not. Did we all feel this extreme fear in the same way or was ‘fear’ just a common word that we used but our experiences were actually different? I’m sure many people out there, like me, dream of a machine that would allow us to project our feelings onto someone else. We don’t have such an invention at the moment, but the first step is through the use of audio and video. I discovered an interesting representation of auditory hallucinations on YouTube, link below. I know that it doesn’t convey the emotions that a person could be experiencing along with the hallucinations, but it is a start in explaining how schizophrenia/psychosis can affect a person.

Auditory hallucinations – representation

It’s better to listen to this audio in headphones in order to get a better simulation of the surrounding sound. Put on your headphones and try to go through the whole length of the audio. It’s quite unpleasant. It’s nice to know that any second you can pause the video. With real psychosis unfortunately you don’t know when it’s going to end. Psychosis also is usually not just hearing voices that aren’t there, it’s thoughts and emotions – panic, fear, distrust. How can someone know that they are having a psychotic episode versus rational thoughts that are unpleasant? The line is not clear. Recently I had an episode at work during which I kind of heard my boyfriend’s voice inside my head saying that what I did was a ‘low level job’, ‘it was pointless’, that he wouldn’t do such a job, that I was wasting my life. Was that a psychotic episode caused by my immune system acting up or does everyone experience such moments? I would say it was closer to psychosis as it was similar to the audio representation – the voice was not part of my thoughts, it was inside my head, but I could not control it. This seems similar to what people with schizophrenia describe about auditory hallucinations, but then many people without schizophrenia also complain about inside negative ‘voices’. Perhaps by ‘inside voice’ in general people really mean thoughts, and these are more under their control, unlike the hallucinations.

Below is another video of schizophrenia simulation. As one comment states, “This is KINDA accurate but you can’t really recreate the feeling of panic and doubt and paranoia. During an episode you’re possessed by so many emotions that a video just can’t convey.”

Schizophrenia Simulation

What I experienced in the most acute stages of encephalitis also could not be portrayed well with just audio or video. What I experienced was primal fear. Imagine maybe being in an airplane, a long trans-Atlantic flight. You are going 900 kilometers per hour, ten thousand meters above the ocean. Suddenly there is severe turbulence. You’ve experienced turbulence before, but not of this magnitude. You hope it will cease soon, because the pilots know what they are doing, right? But it doesn’t, there is another fall through the air, you can feel it. Perhaps before the turbulence started you were reading a book, do you think you will be able to continue? Or you were talking to the person you are flying with about housing prices, will you be able to hold the conversation, or will you be overwhelmed with the primal fear? The fear that we experience when we are suddenly reminded of our mortality with an added rush of adrenaline. And not just our mortality, but also the mortality of people who for us make our world. That’s what acute encephalitis episodes were like for me. It was like constantly being in that passenger plane above the ocean in severe turbulence. And if that goes on for long enough, when the fear is constantly present, you may then actually start to wish for the situation to resolve in any way, as long as it resolves quickly. I mean that you may wish for the plane to just fall quickly, you no longer believe in safe arrival, but you just want to already escape the fear and the anticipation of pain.

Autoimmune Encephalitis vs. Schizophrenia

I don’t have schizophrenia so I can’t say that I experienced it, but I was misdiagnosed with it, therefore it’s possible that some of my experiences are similar to those of people with schizophrenia. Unfortunately autoimmune encephalitis is often  misdiagnosed as a psychiatric disorder. I spent a lot of time in the Understanding Hashimoto’s Encephalopathy Facebook group and after talking to the women there, the commont story that emerged was that most of them were initially referred to a psychiatrist and treated with antipsychotics/antidepressants/benzodiazepines. I say women because the group members are mostly female, probably over 90%. Autoimmune diseases affect women more often than men and this seems to hold true for autoimmune encephalitis. Schizophrenia on the other hand is more common among males.

I am not a schizophrenia expert, but since my psychiatrist assumed that I had it and I was treated for it, from experience I can say that schizophrenia is usually treated with antipsychotics such as risperidone and olanzapine. Psychotherapy can also be recommended but in addition to the antipsychotics, it would not be enough on its own usually. Autoimmune encephalitis does not improve with antipsychotics. AE is inflammation of the brain that is caused by the immune system and it required immune suppression such as IV steroids, IVIG or plasmapheresis. Many patients have to stay on oral immune suppressants such as prednisone or Cellcept. Some get regular Rituxan infusions. Some patients do take antidepressants or antipsychotics in addition to the immunosuppressant treatment, but the first step should really be suppressing the immune system.

Autoimmune encephalitis often does cause psychiatric symptoms such as intense fear, panic, paranoia, delusional thoughts and depression. All these symptoms could be present in patients with schizophrenia. Schizophrenia is also much more common than autoimmune encephalitis, it affects about 1% of population. Since psychosis due to autoimmune reaction is quite rare, it’s reasonable for a psychiatrist to assume schizophrenia, schizoaffective disorder, or psychotic depression. I do think though that if the psychosis is present along with physical symptoms, a blood test for autoimmune conditions should be performed as well. I don’t think schizophrenia is associated with facial swelling, lightheadedness, brain fog, extreme fatigue, etc. Autoimmune encephalitis on the other hand does cause all these physical symptoms and more severe ones as well such as seizures and going into a coma. Also I think that if a patient has tried different antipsychotics for several months and has not responded to them, it’s probably time to consider that there might be a different cause and perform further testing. My psychiatrist for some reason did not consider this. I was not aware of existence of autoimmune diseases, it was my mom who suggested specific blood tests.

BBC – Some psychosis cases an immune disorder

Further on, once I started reading more about causes of panic, anxiety, and mood swings, I bought a glucometer and decided to check my blood glucose. My fasting blood sugar was checked previously at the hospital and it was fine, but after performing my own measures, I noticed a problem. After specific meals that contained high glycemic index foods, my blood sugar could stay at higher than 11 mmol/L two hours after eating. Diabetes UK states that blood glucose over 8 mmol / L two hours after a meal is of concern. Later on I spoke about these results to a doctor and she said I may have hyperglycemia. I also noticed feeling psychologically worse when my blood sugar was high. My point here is that if you are not responding to antipsychotics, there are further things to investigate. There is autoimmune testing – high levels of thyroid antibodies could indicate Hashimoto’s encephalitis, there are also other types of autoimmune encephalitis with different antibodies (NMDA receptor encephalitis, for example). TSH, free T3, and free T4 is a standard test to check the thyroid function, hypo/hyper thyroidism can also cause psychosis. Diabetes/hyperglycemia can affect your mood. Usually fating blood sugar is checked, but I would also verify blood glucose levels two hours after a meal with high glycemic carboydrates.

Diabetes UK – Diabetes and Hyperglycemia