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Pyroluria

Alice in Wonderland Syndrome – is there a pyroluria connection?

By Trudy Scott 48 Comments

alice in wonderland syndrome

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:

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.

I was called a vulture for preying on sensitive people in a social anxiety group – because I mentioned pyroluria and a nutritional solution

By Trudy Scott 74 Comments

I was called a vulture

Earlier this week I was called a vulture for preying on sensitive people in a social anxiety group because I mentioned pyroluria and a nutritional solution in response to someone asking for help. I shared much of this on Facebook and the response has been huge – supportive, understanding and encouraging, and also something many of you have also faced and can relate to. I’m publishing it as a blog post too because I feel there are many takeaways and lessons we can all learn from this.

The person asking for help posted this:

I’m seriously stuck. I’ve been battling social anxiety disorder my whole life. I feel like my social skills have gotten worse during 2020-2021. Is anyone the same way? And If possible can anyone give me some good advice?

I posted this in response to the request for advice:

Look into pyroluria and the nutrient protocol – life-changing for me (and my clients – disclaimer: I’m a nutritionist)

And this is the response from someone else in the group:

So not medicine. I think as a nutritionist you shouldn’t be advising people to avoid actual medical help. Foods can’t help but most depression and anxiety isn’t stress based. It’s a biological chemical imbalance. Food won’t help it in the long run. As someone who’s had bipolar, depression, anxiety, social anxiety, insomnia and possible schizo. I have known people to get seriously ill from people that couldn’t manage to be actual doctors. I’ve lost a friend due to them being advised to stop meds and take some herb. Please unless you are actually here because you have social anxiety and such. Could you please leave and stop acting like a vulture over the sensitive people.

I get that it can be tough to grasp that nutrition and nutrients could be a solution for social anxiety but even with a response like this I will continue to share my message.

This was my response:

Correct, not medicine … nutrition. I had social anxiety and panic attacks and diet (gluten-free, caffeine-free, sugar-free etc) and nutrients like zinc, vitamin B6, GABA, tryptophan and more solved my anxiety. I’m passionate about creating awareness because I’ve seen “nutritional psychiatry” work for 100s of thousands of folks.

Please be open-minded … and google “nutritional psychiatry”, “gut-brain”, “pyroluria social anxiety” and “gluten schizophrenia” … you will be pleasantly surprised. It’s going to take some time for all this to be part of mainstream psychiatry but it’s in the research and awareness and acceptance is growing.

I’m sorry about your loss but I would never advise anyone to stop taking their meds. For folks who want to explore this approach we always work in conjunction with their prescribing doctor.

It’s also not very nice calling someone a vulture but I understand that the idea that food and nutrients could be so powerful when it comes to anxiety and mental health can be tough when you first hear about it.

Why I’m sharing this – it’s not for sympathy or to call this person out

I’m not sharing this here for sympathy.

I’m not sharing this to call out this person who called me a vulture or to judge or shame them.

I’m sharing it to illustrate the challenge we have with getting this message out.

I’m sharing it in case you’ve tried to tell a loved one or friend or colleague about the power of anxiety nutrition solutions and have had push-back.

I’m sharing here so we remember to have empathy for someone who doesn’t yet know or understand what we have learned and experienced (no matter what they say or how they say it or even if they have even been preyed on in the past so a comment like this may be justified in their mind).

I’m sharing here because I truly believe in the power of planting seeds of knowledge.

I’m sharing here because I believe everyone deserves to feel their absolute best every single day.

I’m sharing here because everyone struggling with anxiety and social anxiety deserves to know about the growing field of “nutritional psychiatry” in mainstream medicine.

This is why I’m sharing here and why I’ll continue to share nutritional solutions in groups where folks are asking for help for social anxiety, anxiety and panic attacks (and other conditions where pyroluria and neurotransmitter imbalances are common, and there is a role for diet and nutrients).

Why the disconnect and the possible role of neurotransmitter imbalances

I’m hoping all this can help you as you reach out and offer support to someone in an online group. And also help you as you share what you have learned or experienced personally when it comes to nutritional solutions for social anxiety/anxiety – with loved ones, community members, friends and colleagues who are sometimes less than receptive.

I suspect one big disconnect is comprehending that lifestyle/diet/nutrients could help with anxiety and mental health challenges. Heart disease, diabetes, high blood pressure and cancer are more recognized as being lifestyle conditions even dietary and lifestyle changes are not always implemented.

I also often hear this: “my anxiety or social anxiety or panic attacks are so severe (or so complex) there is no way nutrients and nutrition could help! I need medications for sure.”

If someone has nutritional deficiencies or neurotransmitter imbalances, that may also be playing a role in how they respond. For example, low serotonin can make you feel hopeless, fearful, negative, overwhelmed and even angry. This is in addition to feeling anxious and not sleeping well, so you’re more likely to be cranky and irritable.

Links to resources for you to share

Here are links if you need some resources to share or in case you’re new to some of this:

Tamara’s wonderful feedback about gluten and vitamin D

This was Tamara Underwood’s response to my vulture post and her powerful feedback about gluten and vitamin D:

That was a thoughtful response Trudy. I think when people have complex health issues, they think the solution needs to be complex. I had no idea how powerful nutrients could be until it solved my own health issues. Often, it is returning to basics and using foundational support in a targeted way.

I’ve had chronic migraines (3-4 a week) since I was a toddler. Tried every medication, label and off label, to manage them for 40+ years. Removing gluten was life changing. I’ve been migraine free for 8 years now.

Also, about 10yrs ago, I experienced a very dark, unexplained depression for nearly a year. Of course drugs and therapy are the first line treatments. Not sure why I was opposed to starting there but thankful. My Vit D was 4.1. I felt so radically better within a week of starting repletion that I went back to school for my MS in Clinical Nutrition.

I think about how different life might be now, 10 yrs later, had I not pushed for testing. Psych meds wouldn’t have improved my Vit D so I would have been prescribed all the variations and combos and told how complex my case was when it didn’t help. [One study supporting an association between low vitamin D and depression]

There are just so many toxicities, deficiencies, and imbalances worth exploring if your mental wellness suffers. I’m passionate about this subject and a big fan of yours Trudy.

I’m thrilled that going gluten free and addressing low vitamin D solved her migraines and depression. It’s so wonderful to hear Tamara was inspired to go back to school to study nutrition. She now does this work helping professionals (firefighters, EMTS etc.) who shoulder a greater burden of stress and trauma. Check out Underwood Functional Wellness. I appreciate her for allowing me to share here.

I plan to update this blog with more of the wonderful insights from my community on Facebook but folks are still actively engaging and I need to get permission to share here. Stay tuned for more.  You can also join the discussion on the Facebook post here.

Until then, feel free to post your insights, thoughts, experiences (and questions if you have them) in the comments below.

Let us know how nutritional approaches have helped your anxiety and/or other health issues?

What made you open to this approach and were you initially skeptical?

And let us know if you continue to share your success and plant seeds even when you get negative feedback – and why? And do you have resources you like to share?

Social anxiety caused by pyroluria: oxytocin, the vagus nerve, pectus excavatum and Ehlers-Danlos Syndrome

By Trudy Scott 19 Comments

social anxiety pyroluria

Pyroluria is associated with a type of anxiety characterized by social anxiety, avoidance of crowds, a feeling of inner tension, and bouts of depression. If you have pyroluria you may experience varying degrees of anxiety or fear, often starting in childhood, and you usually manage to cover it up and push through. You may build your life around one person, become more of a loner over time, have difficulty handling stress or change, and have heightened anxiety symptoms when under more stress.

It’s not well-recognized in the medical profession and has long been considered a genetic condition. More recently some practitioners have been proposing that it may be triggered by environmental toxins and that it’s not only genetic. Either way, symptoms can start to resolve within a week when low levels of zinc and vitamin B6, together with some other nutrients are addressed. Stress management is key. This can be emotional stress and the stress of toxin exposure, infections like Lyme disease, mold toxicity and even low blood sugar and gluten issues.

We would typically not connect social anxiety/pyroluria with low oxytocin, vagus nerve function or connective tissue disorders but if you read on you’ll see there are some interesting connections.

Oxytocin, social anxiety and zinc

Research has found that oxytocin levels correlate strongly with levels of social anxiety. A paper published in the Journal of Psychiatric Research looked at how variations in the oxytocin receptor (OXTR) gene is associated with an increased risk of anxiety, stress and depression in individuals with a history of exposure to early life stress. Supporting low levels of oxytocin can ease the threats of social interactions.

What is interesting is that zinc, a key nutrient for pyroluria, is needed for binding oxytocin to its receptor. You can read more about all this here: Oxytocin, social anxiety, pyroluria and autism

Sociability improves vagus nerve function and thriving at home alone

Increased sociability helps improve vagus nerve function. It’s all good and well to recommend getting out and hanging out with more people but if you have pyroluria it’s really challenging. It’s also hard work, very stressful and the added stress makes your pyroluria symptoms worse so it becomes a vicious cycle.

You can read all about this here: Increased sociability improves vagus nerve function: the role of social anxiety, pyroluria and low zinc. There is an updated section on social isolation during coronavirus and how some people are thriving being home alone.

Pectus excavatum and Ehlers-Danlos Syndrome

Pectus excavatum is an indentation in the chest wall and is related to problems with connective tissue. When it comes to pyroluria and pectus excavatum, this is what we see in common: social anxiety and depression, low zinc and low vitamin B6, dental crowding and sometimes Ehlers-Danlos Syndrome (EDS). I write more about this here: Pectus excavatum and pyroluria: is there a connection?.

I’ve written an entire blog on Joint hypermobility / Ehlers-Danlos Syndrome and pyroluria. Anxiety, depression, attention deficit (and hyperactivity) disorder, autism spectrum disorders, and obsessive-compulsive personality disorders are all common with EDS. Many folks with EDS report better less social anxiety, improved mood and often improved physical symptoms/reduced pain on the pyroluria protocol of zinc, vitamin B6, evening primrose oil and a good copper-free multi.

Resources for you

Please do share if you have pyroluria or score high on the questionnaire and have seen improvements in your social anxiety and any physical symptoms.

Essential tremor, dystonia, anxiety and cravings – diet, GABA, tryptophan, zinc and vitamin B6

By Trudy Scott 86 Comments

Essential tremor, dystonia, anxiety and cravings

Today I’m sharing how diet, GABA, tryptophan, zinc, vitamin B6 and other B vitamins can resolve essential tremor and sugar cravings in 2 months, and also resolve musician’s dystonia and social anxiety within 4 months.

According to Medical News Today essential tremor is a movement disorder that can cause hand tremors and “is among the most common movement disorders.” … “The tremor usually affects both sides of the body, but it may be more noticeable in the dominant hand. It tends to occur when the person is moving as well as when standing still. Genetics may be responsible for around half of the cases of essential tremor.”

Essential tremor – diet, GABA, tryptophan and B vitamins

This Croatian paper, Treatment of Essential Tremor with Multi-Modal Nutritional Therapy in a Teenage Patient, reports the “case of a 13-year-old boy with [essential tremor] causing severe functional impairment” over the previous 2 years.

“A multi-modal nutritional therapy approach” was used to target three possible areas that could be contributing to the tremors: a poor diet that was high in sugar, low GABA levels and low serotonin. These changes were implemented:

(i) diet (specifically adopting a Mediterranean diet)

(ii) GABA (through oral supplementation) and

(iii) L-tryptophan/vitamin B pathways (Triptobel oral supplement).

The papers states: “After two months of therapy, his tremor decreased significantly and he regained normal function.”

Once the essential tremor resolved, this teen was able to resume his plans to pursue a musical career as a guitar player (which had been put on hold due to the tremor and his inability to play). What wonderful results!

My commentary on the supplements and doses he used

I’m thrilled to see tryptophan and GABA being used for this condition and am really pleased to read this case report.  Here is my commentary on the supplements and doses he used for anyone wishing to try and replicate this nutritional approach (keeping in mind there is no one-size-fits-all).

  • He used 150 mg of the Triptobel supplement three times daily at 8 am, 1 pm, and 6 pm. One capsule of  the Triptobel contains 150mg L-tryptophan and a B vitamin complex of thiamine (vitamin B1), riboflavin (vitamin B2), niacin (vitamin B3), pantothenic acid (vitamin B5), vitamin B6, folic acid (vitamin B9), and cyanocobalamin (vitamin B12).  The total tryptophan dose was 450mg per day. A typical starting dose for someone with anxiety is 500mg 2 x day so his dose was on the low-end.  The Triptobel was also used at mealtimes and according to the label “on a full stomach after a light meal, preferably without protein.” I like to use tryptophan between meals (away from protein) and a B complex with meals so I’m intrigued by this application (but wonder when protein was consumed).
  • He also used 750mg GABA twice daily at 10 am and 4 pm. This is considered a high starting dose for the majority of my clients with anxiety and I start low and build up to this amount.

Anxiety and low mood was not mentioned so I don’t know if they were factors.

Sugar and carb cravings, and a potential role of gluten

It appears sugar and carb cravings were very likely a factor given that his normal daily diet contained “large amounts of refined sugars (chocolate, cake, biscuits, ice cream, etc).” The amino acids would have helped him with those cravings.

With regards to his diet, given how common movement disorders are with gluten issues, I would also consider I gluten-free diet which has been shown to have an adverse impact on neurotransmitter levels and B vitamins. Could gluten have triggered these nutritional deficiencies and the tremors?

And now to share a very similar case in an adult male … with a different and yet related approach.

Dystonia and hand tremors – and the pyroluria connection

This same Medical News Today article also describes dystonic tremor/dystonia as a movement disorder that can also cause hand tremors, stating that “the brain sends incorrect messages, resulting in overactive muscles, abnormal postures, and sustained undesired movements. Young adults and those in middle age are most likely to develop dystonic tremors, which can occur in any muscle.”

If you’ve been reading my recent articles on pyroluria (the pyroluria-vagus nerve connection and the introversion-pyroluria-loneliness connection) I’m sure you’ll be be interested to learn that there appears to be a strong link between pyroluria and focal musician’s dystonia (or musician’s cramp) in some individuals.

As you read in the blog above, Jay, also a guitar player, had to put his professional music career on hold due to musician’s dystonia. He also happened to have social anxiety and he started to notice improvements in his anxiety and tremors within the first 2 weeks. At the end of 4 months of being on the pyroluria protocol, he shared this:

I think it is, at this point, safe to say that the pyroluria treatment [120mg vitamin B6 and  60mg zinc) is, at least in my case, the cure for pyroluria and dystonia. 90%+ of my symptoms have disappeared, I am working extensively on repertoire and I am thinking about getting back into performing.

He says his experience was “akin to rebirth as a musician and also as a person.” How wonderful is that to read. Jay’s musician’s dystonia resolved and so did his social anxiety.

The outcome for the teen and Jay were similar and yet the approaches used were seemingly very different. This isn’t actually the case since zinc and vitamin B6 are co-factors that are needed to make GABA and serotonin.

Additional resources when you are new to using GABA or tryptophan as supplements

We use the symptoms questionnaire to figure out if low serotonin or low GABA or other neurotransmitter imbalances may be an issue for you.

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 (this is covered in an entire chapter too), sugar cravings, anxiety and mood issues. The importance of quality animal protein and healthy fats is also covered.

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.

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). This is a paid online/virtual group program where you get my guidance and community support. Another option is the budget-friendly GABA QuickStart Homestudy Program.

If you need serotonin support, the Serotonin QuickStart Program is a good place to get help. This is also a paid online/virtual group program where you get my guidance on using tryptophan and 5-HTP safely, and community support during 5 LIVE Q&A calls. You can sign up to be notified when the next live launch of this program is happening.

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.

Wrapping up and your feedback

Now I’d love to hear from you.

Do you experience tremors, or have you been diagnosed with essential tremor or dystonia (or know someone who has)? And have you considered a nutritional approach?

Do share if you’ve seen success with either of the above approaches, and also experienced reduced anxiety or felt more social?

Have GABA or tryptophan helped to reduce your sugar cravings.

Feel free to ask you questions below.

Why social anxiety, introversion and loneliness can be lethal and a simple nutritional solution

By Trudy Scott 41 Comments

trudy scott mindshare

It was an honor to be selected as one of fifteen participants for The Future of Health presentations at Mindshare in August 2019. I presented this to my peers in the integrative health and nutrition space but it’s applicable to everyone and I’d like to share it with you today.

Here is my video presentation: Why social anxiety, introversion and loneliness can be lethal and a simple nutritional solution  (click below to watch the video)

Here are some additional reading resources on much of what I cover in my 5 minute presentation:

This is the the amazing and inspiring group of speakers who I shared the stage with:

  • Amie Apigan – Why Attachment is the New Field of Medicine
  • Lauryn Lax – Eating Healthy is Killing You
  • Jess Sherman – Raising Resilient Kids in a Complex World: Will we Rise to the Challenge
  • Terry Wahls – Creating an Epidemic of Health – My Radical Path
  • Susanne Bennett – The Kimchi Revolution: How an Ancient Food Can Transform the Future of Health
  • Razi Berry – Love is Medicine
  • Kaylea Boutwell – I’ve Got Your Back: Novel Pain Therapies Transforming Spinal Care Outcomes
  • Dana Cohen – Hydration: 8 Glasses a Day is not the Way!
  • Elisa Song – Breathing Life into Your Kids
  • Joel Sprechman – Creating 1M Super Poopers & Evolving Crohn’s Colitis
  • Katy Kimball – My Plan to Empty Your Waiting Rooms (the Real Root Cause of Poor Health)
  • Heather Paulson – Why Choose? Using the Best of Both Worlds to Experience Health with Cancer
  • James Maskell – Group Visits: How Functional Medicine Reaches the Vulnerable
  • Mehgan Walker – Life, Liberty and the Pursuit of Chronic Disease: Why Chasing Happiness is Making us Sick

(do let me know if you’d like me to share any of these presentations in the follow-up blog)

mindshare speakers
Mindshare 2019 green room
Here are some of us in the backstage “green room” and getting ready to go on stage!

We each had a maximum of 5 minutes to present and were not allowed slides or notes. The last time I had memorized my talks and had them timed was 15 years ago when I was in Toastmasters. Before that it was when I was in school. I wasn’t even sure if I could do it when I entered my proposal to speak. When practicing the day before I was still unsure I could manage. Because of my Lyme disease, my memory and word recall isn’t as great as it used to be.

If you pay close attention and you’ll notice the spot where I almost freeze – everything just went out of my head! I simply breathed in calmly, made an attempt to look like I had paused and was fortunate that most of the ending came back to me! Whew!

trudy scott mindshare 2019

 

I’d love to hear what you think of my message and if it resonates with you or a loved one. Feel free to share your pyroluria score and how you score on the introvert questionnaire.

Please also share if you’ve seen the benefits of no social anxiety, introversion and/or loneliness (or much less) when on the pyroluria protocol.

Increased sociability improves vagus nerve function: the role of social anxiety, pyroluria and low zinc

By Trudy Scott 43 Comments

increased sociability and vagus nerve

With the objective of taking a deeper dive into some of the favorite topics of the recent Anxiety Summit: Gut-Brain Axis, today’s blog is about the vagus nerve since Dr. Navaz Habib’s interview, Vagus Nerve Activation to Reduce Anxiety, was voted one of the favorites. I’m focusing on one tool that improves vagus nerve function that we didn’t have time to get into in great detail – and that is how increased sociability helps.  It’s all good and well to recommend getting out and hanging out with more people but if you have the social anxiety condition called pyroluria it’s really challenging, hard work and very stressful. Added stress makes pyroluria worse so it becomes a vicious cycle.

Let’s start with the research that supports the connection between the vagus nerve and increased anxiety and mood problems.  In the interview with Dr Navaz, we discussed this paper: Vagus Nerve as Modulator of the Brain–Gut Axis in Psychiatric and Inflammatory Disorders which states that “vagus nerve stimulation is a promising add-on treatment for treatment-refractory depression, posttraumatic stress disorder, and inflammatory bowel disease” and how stimulation of vagal fibers that go from the gut to the brain (afferent fibers) influences neurotransmitter production and “play crucial roles in major psychiatric conditions, such as mood and anxiety disorders.”  The gut bacteria play a major role too, “partly by affecting the activity of the vagus nerve.”

In our interview we end with very practical ways to activate your vagus nerve

  • Deep breathing exercises (mentioned in the above paper, together with yoga and meditation) and cold showers (which makes you breathe harder)
  • Gargling and using the gag reflex
  • Humming, chanting and singing (I used these approaches for my vagus nerve issue after my terrifying plane ride. GABA also helped with the voice/throat spasms I experienced – more here on that)
  • Auricular acupuncture (which is also very effective for addictions)
  • And finally, social interaction or increased sociability, which I want to cover today

The research on the vagus nerve and being more social

Let’s look at the research on the vagus nerve or vagal tone and being more social.  This paper, Upward spirals of the heart: autonomic flexibility, as indexed by vagal tone, reciprocally and prospectively predicts positive emotions and social connectedness, reports that that vagal tone and connectedness or being more social is a two-way street i.e. it’s reciprocal

  • “…increases in connectedness and positive emotions predicted increases in vagal tone” and
  • “Adults who possessed higher initial levels of vagal tone increased in connectedness and positive emotions more rapidly than others”

In summary, the more social and happy you are, the healthier your vagus nerve is and a healthier vagus nerve leads to feeling more connected and happy.

This study was done with adults in a community-dwelling setting over 9 weeks: “adults were asked to monitor and report their positive emotions and the degree to which they felt socially connected each day.”

Address pyroluria in those who have social anxiety

Pyroluria, the social anxiety condition, was not part of the study because it’s under-recognized as a factor in anxiety.  I’d like to propose that we address pyroluria in those who have social anxiety in order to further improve social connectedness and their vagus nerve function.

Many folks with pyroluria put on a brave face in social settings and even “extrovert” which is extremely stressful. The added stress makes pyroluria worse (zinc and vitamin B6 are dumped in much higher amounts) so it becomes a vicious cycle.

Others, who are not willing to even show up because of their severe social anxiety, are not getting that social interaction and connectedness that is so crucial for improved vagus nerve function and better overall health.

Here is the pyroluria questionnaire and the pyroluria/introvert connection.

Connecting the dots further we have

By addressing the social anxiety called pyroluria with a foundation of zinc and vitamin B6, we can increase sociability and thereby improve vagus nerve function.

UPDATE 5/7/2020:

Social isolation during the coronavirus pandemic – other vagus nerve exercises

This blog is very applicable now during the coronavirus pandemic. I’ve made an update because I feel we need to start thinking about the longer-term adverse impacts of social isolation and work on other ways to improve vagus nerve function during isolation or quarantine.

This can include any or all of the ways mentioned above: deep breathing exercises, yoga, meditation, cold showers, gargling/gag reflex, humming/chanting/singing and/or auricular acupuncture.

Do you find you have better vagus nerve function when you are more sociable? What of these vagus nerve exercises have you been doing and found helpful during isolation? Do you have any other favorite approaches like using essential oils or anything else?

Vagus nerve stimulation to treat respiratory symptoms associated with COVID-19

This paper reports benefits in 2 patients with coronavirus – Use of non-invasive vagus nerve stimulation to treat respiratory symptoms associated with COVID-19: A theoretical hypothesis and early clinical experience

  • Both patients reported clinically meaningful benefits from nVNS therapy [non-invasive vagus nerve stimulation].
  • In Case 1, the patient used nVNS to expedite symptomatic recovery at home after hospital discharge and was able to discontinue use of opioid and cough suppressant medications.
  • In Case 2, the patient experienced immediate and consistent relief from symptoms of chest tightness and shortness of breath, as well as an improved ability to clear his lungs.

The authors also share that “vagus nerve stimulation has been demonstrated to block production of cytokines in sepsis and other medical conditions.”

With this virus being novel and with everyone learning we are still appreciative of small case reports like this and hope to see bigger studies done. Until then there is other evidence of the overall importance of the vagus nerve in helping to regulate lung infection and immunity.

The nVNS therapy mentioned in the COVID-19 paper is an external device that delivers “a proprietary signal through the skin to either the right or the left branches of the vagus nerve in the neck.” It’s not something I’ve used personally or had clients use so please share if you’ve had success with this device or a similar device.

Loving social isolation and thriving during coronavirus

On the flip side we also need to consider that there are some individuals who are loving social isolation and thriving emotionally. I share some feedback from folks in my community:

  • Elissa: “As an introvert, my mental health has never been better ☺️. Loving isolation life.”
  • Drew: “Loving it in many ways. Dreading the hedonism starting up again…”
  • Tiffany: “My anxiety levels have decreased and I have decreased my anxiety meds! I think it’s because the demand to produce has decreased. I can actually move at my own speed in this world. I’m fortunate, though. My heart goes out to those people in medical fields. I really miss some things, like time with my dad, but we have made some adjustments, like driveway picnics.”
  • Katie: “I was praying for relief from the busyness. Definitely didn’t have this in mind and my heart hurts for those who are impacted. It has been a beautiful time of rest and restoration for my body and soul.”
  • Wendy: “My life is usually slow paced and introverted. Now it’s more so and I’m finding the less I do in a day, the better I sleep. I’m actually dreading getting back to “normal” with all the pressures put on us by extroverts. Yes I have sympathy for people suffering mentally by isolation, but for the first time I feel like my type of lifestyle is socially acceptable. I’m tired of life expectations being dictated by the extrovert half of the population.”

I appreciate these folks for sharing their valuable perspectives about thriving in these times. It reinforces how unique we all are.

If you’re struggling with social isolation…

  • How are you feeling and what are you most looking forward to doing once social isolation recommendations are relaxed?
  • I’m guessing you don’t have pyroluria but please share if you do?

If you are thriving in social isolation…

  • Would you consider yourself an introvert /a contented introvert?
  • Have you got pyroluria and has addressing it nutritionally in the past allowed you to be more sociable or at least less anxious when you are in crowds?
  • How are you feeling during social isolation and what do you love the most right now?
  • What are you not looking forward to once social isolation recommendations are relaxed?
  • And how do you plan to go back to the old “normal” or don’t you?

Please comment below and let us know where you are with social isolation during this pandemic – struggling or thriving? And what vagus nerve exercises are you using right now? Have you used an external device with success?