auditory hallucinations

“A catatonic woman awakened after 20 years. Her story may change psychiatry.” (Her schizophrenia was an untreated autoimmune disease)

June 16, 2023 By Trudy Scott 8 Comments

Today I’m sharing some highlights from a recent eye-opening article in the Washington Post: A catatonic woman awakened after 20 years. Her story may change psychiatry

Before she became a patient, April had been an outgoing, straight-A student majoring in accounting at the University of Maryland Eastern Shore. But after a traumatic event when she was 21, April suddenly developed psychosis and became lost in a constant state of visual and auditory hallucinations. The former high school valedictorian could no longer communicate, bathe or take care of herself.

April was diagnosed with a severe form of schizophrenia

April was hospitalized, medicated and eventually institutionalized. It got to the point where she no longer recognized her family and she became catatonic, “unmoving, unblinking and unknowing of where or who she was.”

Twenty years after April’s original diagnosis it was discovered that she has an autoimmune condition. Dr. Sander Markx is director of precision psychiatry at Columbia University and I have so much admiration for his dedication to the field and the fact that he facilitated this testing and discovery so long after meeting April, when he was a student:

Markx and his colleagues discovered that although April’s illness was clinically indistinguishable from schizophrenia, she also had lupus, an underlying and treatable autoimmune condition that was attacking her brain.

After months of targeted treatments – and more than two decades trapped in her mind – April woke up.

April’s transformation is truly heartwarming and it’s wonderful that the doctors plan to do similar testing and offer similar treatments for others living with schizophrenia who are in mental health institutions in New York State.

Researchers in other countries are making similar connections and it’s really exciting to read that they are recognizing that “underlying autoimmune and inflammatory processes may be more common in patients with a variety of psychiatric syndromes than previously believed.”

We can and should be doing better when looking for root causes

I believe we can and should be doing better when it comes to looking for root causes. Many individuals may have an autoimmune/inflammatory condition and many may have other root cause/s. If I was on an advisory panel these would be my recommendations:

Use this powerful outcome to really turn psychiatry on its head and screen for lupus and other autoimmune conditions in every single person with schizophrenia. Dr. Markx “believes highly sensitive and inexpensive blood tests to detect different antibodies should become part of the standard screening protocol for psychosis.”
Do the same for every single person with mental illnesses and illnesses with a behavioral aspect – including anxiety, depression, bipolar, OCD/obsessive compulsive disorder. ADD/ADHD, autism/ASD (autism spectrum disorders), developmental disorders and neurological disorders.
Go beyond autoimmune screening and do a comprehensive functional medicine and nutritional deficiency assessment for every single person, including low serotonin, low GABA, low vitamin D, low zinc, low vitamin B6, hormone imbalances (sex hormones, adrenals, thyroid health), gut health, liver health etc. This includes testing for infections (such as Lyme and strep), looking at toxin exposure (phthalates, mold, heavy metals) and medication side effects.

If you’re new to the concept of root causes and functional medicine/nutritional testing these two blogs will be helpful. They are specific to anxiety because I work with anxious individuals but much of it can also be applied to other mental health and even physical health conditions (like rheumatoid arthritis and say multiple sclerosis):

Functional medicine and nutrition for maintaining symptom resolution in the long term

As you read in the article, April received “short, but powerful “pulses” of intravenous steroids for five days, plus a single dose of cyclophosphamide, a heavy-duty immunosuppressive drug typically used in chemotherapy and borrowed from the field of oncology. She was also treated with rituximab, a drug initially developed for lymphoma.”

Incredibly, she recovered completely and was eventually discharged from the psychiatric hospital and has been living in a rehab center for 3 years. Unfortunately “she has recently regressed because she was not receiving adequate maintenance care.”

I see the next step for April and others like her, is maintaining resolution of symptoms in the long term. This is where functional medicine and nutrition shines.

The ISNPR shared this about Nutritional psychiatry in 2015 in a letter published in World Psychiatry, the official journal of the World Psychiatric Association:

In addition to dietary modification, we recognize that nutrient-based (nutraceutical) prescription has the potential to assist in the management of mental disorders at the individual and population level.

In other words, diet and nutrient-based approaches need to be included for mental health treatment and for prevention. One of many examples is the ketogenic diet which has been shown to reduce auditory hallucinations and delusions in those with schizophrenia. Another is the low carb diet helping to reduce bizarre intrusive thoughts. And the SMILES trial was the first randomized controlled trial to show that dietary improvement can actually treat depression.

Specific nutrients can be very powerful too. One example is a case where a woman in my community experienced a drastic reduction in intrusive thoughts, anxiety and fears (and better sleep) with GABA, tryptophan, 5-HTP and the pyroluria protocol (zinc, vitamin B6 and evening primrose oil). More on the blog. Intrusive thoughts can be alleviated with a similar combination of nutrients and by addressing hormonal imbalances too.

These blogs/research illustrate a few of the many root causes of schizophrenia and psychosis other than lupus:

When it comes to autoimmunity in general I refer you to the work of Dr. Tom O’Bryan, Dr. Izabella Wentz, Dr. Terry Wahls, Dr. Amy Myers and others who teach about using functional medicine and diet for reversing a number of different autoimmune conditions.

The above approaches can all be explored and used when individuals are initially diagnosed too. But keep in mind that there is no one size fits all and it’s a matter of finding the root causes for each person.

We are moving in the right direction and there is hope but…

We are moving in this direction, awareness is growing and there is hope. But I know we can get there sooner.

What Dr. Markx and his colleagues have discovered and shared with the world will hopefully help us get there much more quickly.

(You can read the whole story here and a similar transformation experienced by Devine Cruz.)

I’m thrilled for April and Devine and their families, and appreciate them sharing these stories with the world. Let’s hope their stories do change psychiatry!

Resources if you are new to using amino acids as supplements

If you are new to using amino acids as supplements, here is the Amino Acids Mood Questionnaire from The Antianxiety Food Solution (you can see all the symptoms of neurotransmitter imbalances, including low GABA, low serotonin and low endorphins).

If you suspect low levels of any of the neurotransmitters and do not yet have my book, The Antianxiety Food Solution – How the Foods You Eat Can Help You Calm Your Anxious Mind, Improve Your Mood, and End Cravings, I highly recommend getting it and reading it before jumping in and using amino acids on your own so you are knowledgeable. And be sure to share it with the practitioner/health team you or your loved one is working with.

There is an entire chapter on the amino acids and they are discussed throughout the book in the sections on gut health, gluten, blood sugar control, sugar cravings, anxiety and mood issues.

The book doesn’t include product names (per the publisher’s request) so this blog, The Antianxiety Food Solution Amino Acid and Pyroluria Supplements, lists the amino acids that I use with my individual clients and those in my group programs. You can find them all in my online store.

If, after reading this blog and my book, you don’t feel comfortable figuring things out on your own (i.e. doing the symptoms questionnaire and respective amino acids trials), a good place to get help is the GABA QuickStart Program (if you have low GABA symptoms too). This is a paid online/virtual group program where you get my guidance and community support.

If you are a practitioner, join us in The Balancing Neurotransmitters: the Fundamentals program. This is also a paid online/virtual program with an opportunity to interact with me and other practitioners who are also using the amino acids.

Does this heartwarming story give you hope for psychiatry?

What do you feel we should be doing to advance nutritional psychiatry even more quickly?

Can you or a family member relate to this and what did you discover in terms of testing and nutritional support/functional medicine?

Feel free to post your feedback and questions here in the comments.

Alice in Wonderland Syndrome – is there a pyroluria connection?

June 25, 2021 By Trudy Scott 48 Comments

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.