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Jeremy Andrew Davis, a writer and film director, always experienced severe panic attacks but never understood the cause behind them. On seeking help, many doctors and therapists also often dismissed his symptom, without probing much to identify the underlying cause. Only in 2021, after nearly a decade, did Davis get a diagnosis — that he suffered from a rare disorder known as Alice in Wonderland Syndrome (AIWS), sometimes also called Todd’s syndrome.
However, it was not just panic attacks, AIWS also caused episodes of anxiety which were “severe” and “traumatic”. “During an episode, I would feel like I was dying. Sometimes I would not recognise my own bedroom or house, or even remember my own name. Eventually, these episodes would pass, sometimes after 15 minutes and sometimes an hour, but then I would still not feel like myself for long after that. This even affected my sleep and mental health,” Davis told indianexpress.com, adding while this condition is considered rare, “it is far more common than the medical profession realises”.
“Further, there is also a great deal of stigma surrounding it, so patients are far less likely to share the symptoms as they fear they might be labelled ‘crazy’,” he said.
What is Alice in Wonderland syndrome?
According to Dr Sonali Bali, Consultant–Psychiatrist, Paras Health, Gurugram, AIWS was first identified in the 1950s by Sir John Todd, a British psychiatrist, who noticed that the symptoms resembled those experienced by the character Alice Liddell in the novel Alice in Wonderland by Lewis Carroll. “It is a condition marked by changes in temporal perception, body image and visual perception. Individuals with this syndrome may experience a distorted sense of their own size, perceiving themselves as either larger or smaller than their actual size. Additionally, they may perceive objects in their environment as either moving farther away or closer than their true distance. It can impact multiple senses, including vision, touch and hearing, and can also lead to a subjective feeling of time passing either faster or slower than usual,” she elucidated.
While the precise cause of AIWS is not fully understood, Dr Bali noted that it is thought to stem from atypical electrical activity in the brain, which disrupts the normal blood flow to the regions responsible for processing environmental stimuli and visual perception. “This abnormal electrical activity can be triggered by various factors, including migraines, infections, as well as other potential causes such as head trauma, epilepsy, strokes, tumours and certain medications,” she informed.
Adding, Vishnu Priya Bhagirath, a counselling psychologist, said that the symptoms of AIWS primarily involve perceptual distortions, which can include micropsia (objects appear smaller), macropsia (objects appear larger), metamorphopsia (objects appear distorted), pelopsia (objects appear closer), teleopsia (objects appear further away), time distortion, visual illusions and auditory distortions.
Misconceptions surrounding the syndrome
Bhagirath continued that one of the most common misconceptions around AIWS is that it is a purely psychological condition. “In fact, it is a neurological condition that affects perception. Some people mistakenly believe that it is solely related to mental health issues. However, AIWS is considered to be a result of abnormal brain activity rather than a psychological disorder.”
On similar lines, Saumya Pahwa, a clinical psychologist shared that it is often mistaken for psychological disorders such as psychosis, schizophrenia or bipolar disorder as the visual distortions may come across as hallucinations.
Another myth surrounding the syndrome is that it is rare. “AIWS is often considered a rare condition, but its actual prevalence is difficult to determine. The lack of awareness and underreporting of symptoms may contribute to the misconception of its rarity. It is possible that AIWS is more common than currently recognised, particularly in individuals who experience migraines,” Bhagirath said.
The connection between COVID-19 and AIWS
Dr Rishi Gautam, Assistant Professor of Psychiatry, George Washington University, Washington DC, USA said that there have been some case reports in medical literature pointing towards COVID being linked to AIWS, but further research is needed to identify causation.
Similarly, Pahwa quoted a study published in the Journal of Clinical Cases & Reports, and said: “A 5-year-old boy developed AIWS like seizures in form of telopsia of the arms and legs, two weeks after COVID-19 infection diagnosed by PCR-testing. The child had no migraine episodes, nor any familial members with migraine. Till date of seizures, the child has never been ill and never took drugs or pharmaceutical medication,” she said.
The research study further suggested that cases of AIWS seem to be more present and obvious after COVID-19 infection in children. “So, coronavirus could act as a trigger in AIWS in childhood and should be closer evaluated by further cases,” it read.
Treatment
The experts note that there is no specific cure for AIWS except for symptomatic management. These include:
*Treating underlying conditions: If AIWS is associated with migraines, treating and managing migraines may help reduce the frequency and severity of AIWS episodes. This can include lifestyle changes, identifying triggers and medications prescribed by a healthcare professional.
*Medications for symptom management: In some cases, medications used to treat migraines or epilepsy may be prescribed to manage AIWS symptoms. These medications can help reduce the frequency and intensity of episodes.
*Stress management techniques: Stress and anxiety can sometimes exacerbate AIWS symptoms. Learning stress management techniques such as relaxation exercises, mindfulness or therapy can help individuals better cope with their symptoms.
*Migraine preventive measures: Since migraines can be a common trigger for AIWS, adopting measures to prevent migraines can indirectly reduce AIWS episodes. This can include getting adequate sleep, managing stress, regular exercise, maintaining a balanced diet and avoiding known triggers such as certain foods or environmental factors.
*Education and support: Understanding the condition and its episodic nature can help individuals feel more in control and alleviate anxiety. Support from healthcare professionals, support groups or online communities can provide valuable information, coping strategies and a sense of community.
Concluding, Bhagirath said that it is important to note that the effectiveness of treatment and management strategies can vary from person to person. “Consulting with a healthcare professional such as a neurologist or headache specialist, is crucial for proper evaluation, diagnosis and developing an individualised treatment plan for AIWS. They can provide personalised recommendations based on the specific circumstances and needs of the individual.”
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