I first learned about Alice in Wonderland Syndrome (AIWS) during one of the Anxiety Summits. I’m surprised at how many queries I get about this syndrome and the fact that everyone who has reached out also has the social anxiety condition called pyroluria or suspects they have it.
This 2017 paper, Alice in Wonderland Syndrome: A real life version of Lewis Carroll’s novel, describes it as follows:
Alice in Wonderland Syndrome was originally coined by Dr. John Todd in 1955. The syndrome is named after the sensations experienced by the character Alice in Lewis Carroll’s novel Alice’s Adventures in Wonderland. Alice in Wonderland Syndrome consists of metamorphopsia (seeing something in a distorted fashion), bizarre distortions of their body image, and bizarre perceptual distortions of form, size, movement or color. Additionally, patients with Alice in Wonderland Syndrome can experience auditory hallucinations and changes in their perception of time. Currently, there is no known specific cause of Alice in Wonderland Syndrome. However, theories point to infections such as the Epstein-Barr virus, medications such as topiramate and associated migraines.
You can read about all the types of visual and non-visual distortions in this paper: Alice in Wonderland syndrome – A systematic review. This paper also includes a list of conditions in which Alice in Wonderland syndrome has been described in the literature, with infections and migraines being very common. The authors also feel that what we see in the published literature may only be the tip of the iceberg:
Since 1955, no more than 169 case descriptions of AIWS have been published. The literature indicates that this may be only the tip of the iceberg, with many individual symptoms of AIWS being experienced (albeit occasionally and only fleetingly) by up to 30% of adolescents in the general population.
The published case numbers have increased slightly (this paper was published in 2016) and it’s reported that many of the 30% of adolescents with AIWS experience non-clinical symptoms i.e. they are not severe enough to need treatment.
I still find “up to 30% of adolescents in the general population” to be very surprising for a syndrome which was once considered very rare and is frequently misdiagnosed.
Read on to hear from some folks in my community who have reached out and described their AIWS episodes. They all have pyroluria and I’d love to know if there is a possible connection.
Everything either looks really far away but massive or really close up but tiny
Sallie, a mom in my community, shared about her son and what he experienced in the comments section of the pyroluria prevalence and associated conditions blog. During his episodes, everything either looks really far away but massive or really close up but tiny:
I believe he has Alice in Wonderland syndrome. I have taken him to GP’s, pediatricians, optometrists, opthamologists and no one knew what was wrong. I spent about 6 months researching the possibilities myself and came across AIWS. When I showed him some of the journal articles, he was so relieved to finally have an answer. Since then, I have had a gut feeling that pyroluria and AIWS may be linked somehow.
She believes his AIWS may have been triggered by an infection when he was around 6 years of age. He developed sudden onset of vomiting, fever and delirium:
Still to this day, he distinctly remembers this night and recalls (like it was yesterday) not being able to stop looking at his hands because they were changing size and how far away/close up they were.
Once he was old enough to articulate what he was experiencing, he was able to tell me he feels weird, like he needs to go to a pitch-black room and lie down. Sometimes it coincides with a headache.
Everything suddenly appears as if far away then everything either looks really far away but massive or really close up but tiny. He feels dizzy while this happens also. Stress definitely increases the number of AIWS episodes.
Infections are reported as one (of possibly many) root causes of AIWS: “Reported causes include infection (especially with Epstein Barr virus), migraine, epilepsy, depression, and toxic and febrile delirium.”
Infections are common mental health triggers. Strep as a trigger for PANDAS/PANS is a classic example. I blog about Bartonella and sudden-onset adolescent schizophrenia here.
He has pyroluria and stress increases the number of episodes he experiences. My question is this: is there a link between the dumping of zinc and vitamin B6 during these times of stress and episodes of AIWS?
The feeling of being extremely small somatically (or physically), like how you feel when in a football stadium
Mike is a 21 year old male and thinks he may very well have pyroluria based on the questions. He also shares this in the blog comments about his AIWS experiences:
I have experienced sensations similar to Alice in Wonderland Syndrome throughout my life, more so during periods of stress. The feeling of being extremely small somatically (or physically), like how you feel when in a football stadium.
Again, he has pyroluria and his symptoms are worse during periods of stress. Keep in mind that stress makes pyroluria symptoms more intense too.
She usually experiences objects/people smaller than what they are but her more pronounced symptoms are sound distortions
Brenda, another mom in the community, shared this about her daughter’s dreams and PMS on the pyroluria questionnaire blog:
I’m quite certain that my 17 year old daughter has pyroluria. I counted 23 symptoms that she definitely exhibits. Her dream recall is so poor that she insists she doesn’t dream at all. I’m going to start her on zinc, B6 and evening primrose oil right away. Her PMS/premenstrual syndrome is so severe that I had decided to see a gyno to discuss birth control pills. Of course I won’t after listening to your interview with Karla Maree (on the Anxiety Summit).
She also asked if I was familiar with Alice in Wonderland Syndrome and if so do I think it may be connected to pyroluria? She shares this about her daughter’s AIWS experiences:
My daughter has experienced occasional Lilliputian (trivial or small) hallucinations since childhood. She usually experiences objects/people smaller than what they are but her more pronounced symptoms are sound distortions. She hears voices/noises (real, not imagined) much louder than they are in reality.
She does not have migraines, has never had mononucleosis or any of the other conditions listed as possible causes of Alice in Wonderland Syndrome. That’s why I’m thinking it may be caused by nutritional deficiencies.
This was my introduction to this syndrome and I appreciate her for asking the question. I did some reading of the research and the word “hallucination” got me thinking that a pyroluria connection was possible. The original work by Dr. Carl Pfeiffer with pyroluria was with individuals with schizophrenia.
However, the second paper mentioned above does state that “AIWS is characterized by perceptual distortions rather than hallucinations or illusions and therefore needs to be distinguished from schizophrenia spectrum and other psychotic disorders.”
We clearly have much to learn and I’m still curious to find out how often these two conditions do overlap – pyroluria/social anxiety and Alice in Wonderland Syndrome.
Resources if you are new to pyroluria
Pyroluria is a social anxiety condition and the physical and emotional symptoms are caused by deficiencies of vitamin B6 and zinc. When you experience high levels of stress, vitamin B6 and zinc will be further depleted, so you may notice worsening symptoms and more anxiety. Here is the symptoms questionnaire and additional resources if you are new to pyroluria:
- Pyroluria questionnaire (from my book, The Antianxiety Food Solution):
- Pyroluria prevalence and associated conditions
- Social anxiety caused by pyroluria: oxytocin, the vagus nerve, pectus excavatum and Ehlers-Danlos Syndrome
- My book, The Antianxiety Food Solution, has an entire chapter on pyroluria
Have you (or a family member) had episodes of Alice in Wonderland Syndrome? And do episodes coincide with times of added stress?
Do you also suspect pyroluria and has the pyroluria protocol or other nutritional interventions helped to reduce or stop the episodes?
I’d love to also hear anything else you’re willing to share: age at onset, age AIWS stopped, do you suspect an infection as the trigger (or a medication or toxins or something else?), do others in the family have AIWS episodes and how would you describe your AIWS episodes?
Feel free to post any questions here too.