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.
Hi Trudy,
I have been following you for a few years now, I have your book and other resources I’ve wrote down from the summit s.
I was diagnosed with pyroluria about 5 years ago, by Edmund o Flaherty in Dublin he is part of the walsh institute and also a medical GP.
Anyway I have to say I was not consistent with taking the vitamins etc… which where alot including taurine selenium glycine etc all at certain amounts.
He also said that I would find that the anti depressants that I was on really would not have any effect on me as I produce enough serotonin.
I actually have to say when I have been on anti depressants I noticed that I would suffer horrendous fatigue, as I have ulcerative colitis too , for a long time put it to that… but recently I’ve noticed that it seemed to be coming from the anti depressants also I found that I got addictive tendencies to things like alcohol and sugar when I was on antidepressants, and when I was not on them I had no desire what so ever. Which is my normal state, alcohol never was something that I cared for.
So recently after reading your blogs etc I really felt invigorated to start my vitamins etc again and I’ve come off all antidepressants cold turkey… I’m taking 5htp gaba and also my normal prescription of vets.. htp to hopefully help with the loss of serotonin and gaba for calm.. also epsom salts baths and activated charcoal. I’m a week in and not too bad as I wasn’t on a high dose of anti depressants, although I’m suffering extreme anger and some moments of rage… I’m a wife and mum of six red head kids 3 with autism and I’m a red head myself and so is my husband .. I’m aware we have a firey temper , but this is extreme and to be honest I think the anti depressants masked this… I do not want to go back on themwhen I’ve come this far but my kids need a calm mum, would you have any advice for me… what to take… I know passionflower valerian etc help but the tend to make me very tired…. thanks so much Trudy you have helped me so much already and I have to say your book give me the kick up the bum I needed.
Fiona, take a look at Dr. Kelly Brogan’s work. She has tons of great information about getting off of antidepressants successfully. https://kellybroganmd.com/
Amanda
Thanks for sharing. I’ll add to this by sharing an interview I did with Dr. Brogan on this topic https://www.everywomanover29.com/blog/medication-tapering-withdrawal-kelly-brogan/
Fiona
I’m so pleased to hear my book and summits have been a resource for you over the years.
When I hear anger and rage I investigate if low serotonin may be a factor and we may increase 5-HTP or tryptophan. But also keep in mind that antidepressants are not advised to be stopped cold turkey and rage/anger may be due to discontinuation syndrome. This article explains it well https://www.glamour.com/story/going-off-my-ssris-rage-attacks
Keep in mind I have my clients get nutritionally stable BEFORE starting any medication taper (with their doctor’s approval of course) and this prevents many of the adverse effects. This means eating real food, no gluten, no caffeine, no sugar, quality animal protein, eating for blood sugar control and addressing gut health, the adrenals etc (everything I cover in my book). And then we use the amino acids during the taper (all with the doctor’s approval and monitoring).
I have found that GABA and/or theanine and tryptophan and/or 5-HTP help a great deal. We may also include melatonin, niacinamide, St John’s Wort, adrenal supportive nutrients and other protocols based on each person’s unique needs.
We also look into low blood sugar as this can trigger rage, irritability and crankiness – check out the blood sugar chapter in my book.
Thank you so much…. I will do this as my diet has not been great with ulcerative colitis… I eat alot of organic and I grow my own veg… but very limited appetite so I know that I definitely need to eat more.
Also I know cold turkey is very silly but I was just so sick of the addiction tendencies they where over whelming.
With all this help I will be soon on the mend no doubt… thank you and God bless.xx
Wow – never heard of this before but as a child would experience episodes where all audio (people talking, the radio and even my own thoughts) would suddenly take on a staccato type rhythm, much slower than normal speed (like when you adjust down a podcast speed). Also I would have the sensation that everything was swirling as in a whirlpool, only one time do I remember “seeing” the whirlpool in the center of the room, usually it was just a sensation.
This was ages 5-7ish I think. It never happened again until my 20’s and would happen rarely when I was extremely disturbed & anxious so I concluded that the childhood experiences were a form of panic attack. I have bad social anxiety.
Do not have a diagnosis of pyloria but have most of the symptoms except loss of dreams, I have always had very vivid dreams and quite often nightmares. Recently a trial of B-6 at night added vibrant colors to my dreams but also caused severe leg twitches (lack of lysine perhaps).
I recently tested high tiders for EBV & CMV but never had mono. Had a distinct episode of nighttime vomiting for days with no evident cause as a child. Our house flooded several times so maybe mold? (Florida, USA)
My best friend and husband had described an anxiety caused sensation of feeling extremely small trying to hang on to a large object (her) and feeling extremely large trying to grasp a tiny above to (him).
So interesting and thank you Trudy for all you share with us – truly helpful and appreciated
Karla
Thanks for sharing your experiences and everything else. In the midst of experiencing the episodes do you recall feeling anxious about what was happening? And were you taken to the doctor?
It’s interesting that your friend and her husband experienced the small/large perceptions.
Keep in mind with pyroluria it can be no dreams or vivid dreams/nightmares. Vitamin B6 makes dreams pleasant and with leg twitches I’d look into low magnesium.
Hi Trudy, I have had an experience of feeling so tiny, I was driving a tractor at the time and I’d had someone chase me trying to hurt me with a tractor and then damaging my car with a friend and my dog inside, with his tractor. I put it down to a panic attack and PTSD. I have been diagnosed with both, also bipolar, generalized anxiety, social phobia, claustrophobia and agoraphobia. I have also had a severe case of Epstien Barr Virus, some 8-10 years prior. I have had some bad eating disorders, anorexia, bulimia and body dysmorphia. I have never heard of pyroluia or Alice in Wonderland syndrome. I will do some research into both. I was extremely stressed at the time of this tractor incident, had not been sleeping well, hardly at all, anxiety through the roof and deep depression, also was hardly eating at the time.
Sara
Thanks for sharing your experience and all the other factors. Do let us know as you learn more about AIWS and pyroluria.
If you are new to my work, I encourage you to also look into targeted amino acid support with tryptophan and GABA for generalized anxiety, claustrophobia and agoraphobia. Much of this helps with eating disorders and sleep problems too. The pyroluria protocol helps so much with social phobia and the nutrients are raw materials for neurotransmitter production too.
I cover the amino acids and other anxiety nutrition solutions like gluten/sugar/caffeine removal, blood sugar control, gut health, pyroluria etc. my book “The Antianxiety Food Solution” and this is a great place to start. More here https://www.everywomanover29.com/blog/the-antianxiety-food-solution-by-trudy-scott/
Hi Trudy,
Thank you so much for this.
I’ve listened to many webinars with you plus have gaba etc on hand (for husband).
Just last week my normal healthy 8 yr old son has been telling me that things like my face, the dishes on the table, etc look small to him. And it’s still happening daily. He feels fine and it does go away but I’m sure stress for his is a part too. This is out of character for him. His vision seems fine. I googled AIW and What caught my eye more than anything was this with EB and electrical activity:
”The cause of Alice in Wonderland syndrome is currently unknown, but it has often been associated with migraines, head trauma, or viral enecephalitiscaused by Epstein–Barr virus infection.[4] It is also theoreized that it can be caused by abnormal amounts of electrical activity, resulting in abnormal blood flow in those parts of the brain which process visual perception and texture.[5]”
Could this also be from the horribly high strength EMF tower we had professionally tested that we are now living by…!?! He does not have migraines or head injuries. As for viruses I don’t know. His regular medicine pediatrician can refer him to a neurologist but is that necessary? Last year we started to see functional/integrative physicians, although healthy with no know problems, to be proactive in health, just to find out we came from unseen long term water damage mold exposure, have a heavy metal toxin load to include mercury, haven’t tested for parasites, but did have Candida and treated it. No one else in family is experiencing this visual stuff but yes to the other toxins. His dental is fine, we have filtered air and water, plus eat mostly organic and Whole Foods, no gluten/dairy etc. Could drinking hydrogen water help him or juicing- guessing it might not hurt? He has been on a strong vitamin too and at times other supplements. If he/we had covid (maybe right before pandemic started) it was undiagnosed and he has only had since the pandemic something more like croup/rsv recently (but never tested for strep). I do wonder about the neurological side effects if he unknowingly did have covid. Any thoughts to all this would be greatly appreciated! I’m just trying to figure out which way to start to help him get rid of and heal this.
Thank you so very much for all you so!
Marlee
I think they are referring to electrical activity in the body in this instance. I have not seen a paper on AIWS and EMFs but would consider the impacts of EMFs on health issues like this when there is new exposure. Mold and heavy metals may be factors as could COVID (since there can be neurological impacts https://neurolrespract.biomedcentral.com/articles/10.1186/s42466-020-00097-7). A neurology appointment would be something I’d recommend.
I am curious how he scores on the pyroluria questionnaire and do episodes coincide with times of added stress?
I had this as a child – but only when running a high fever. Back in the 50’s early 60’s we didn’t break a fever with medication.
Salome
Thanks for sharing. Would love to hear what you experienced, how many times and if you have pyroluria?
Me too. Like when having malaria. Also early 60’s
Chronic AIWS is going to be caused by Mercury Poisoning 95% of the time, Acute episodes can also be tied to Hg Tox. Additional Copper Tox will exasperate this particular issue 50 fold, which of course itself is typically caused by Mercury Poisoning. Anything that triggers AIWS in most cases would not normally if the person was not thoroughly poisoned with a potent neural toxin. Once someone understands Mercury Poisoning this connection is obvious, just look up “Mad Hatter’s Disease” to get a bit of glimpse into this World. Any Western Medicine bogus theories should be ignored for the most part, as usual they have to try to quantify “Dis-eases” and apply bogus labels to things that are all Mercury Poisoning, because they will never admit the truth, that doesn’t fit their business model.
Pyroluria also like AIWS is just one of the many 100’s of possible Mercury Poisoning symptoms/issues. This is also another huge obvious fact and easy connection to make once someone understands how Mercury Poisoning festers. Depleting Zinc and screwing up B6 metabolism (something Candida also does, which is another Mercury Poisoning symptom) are just par the course, as are Magnesium Depletion and Adrenal/Thyroid/Gut/Immune/Brain/Liver Dysfunction. I have yet to see a Mercury poisoned person who did not have ALL the above problems to some degree.
Jason
I agree mercury toxicity and other environmental toxins like lead, air pollution, pesticides all need to be considered. This paper covers some of the many mechanisms and briefly mentions AIWS – Beyond the looking glass: recent advances in understanding the impact of environmental exposures on neuropsychiatric disease https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7234981/
This paper discusses color vision impairment – Color-space distortions following long-term occupational exposure to mercury vapor https://pubmed.ncbi.nlm.nih.gov/20883360/
I’m very aware of the harmful effects of mercury (and how it’s toxic effects are not recognized) but respectfully, I feel it’s stretch to say “Chronic AIWS is going to be caused by mercury poisoning 95% of the time.”
That said, I know this is an area of your expertise and would love to hear some stories about folks you’ve worked with or heard from who addressed mercury toxicity and had long-term AIWS symptoms resolve. And how commonly you’ve seen chronic/long-term AIWS? Based on the relatively small number of studies it often seems be fleeting, self-resolving (many children grow out of it) and not severe enough to need treatment. I haven’t seen anything indicating how common chronic/long-term AIWS is.
I was really interested in this article . I suffered with this as a child and I dont think I ever told anyone , except a doctor ,once , who clearly thought I was mad .
It happened for years and then lessened and got better in my 20’s .
I’ve never met anyone who had a similar experience .( I’ve taken detailed case health histories from people for a very long time now)
I now have longstanding Hashimotos and wonder if there is a link there somewhere
Janet
Thanks for sharing. I’m sure this happens a lot – being brushed off by health professionals who are not familiar with this. May I ask what you experienced during episodes, were you anxious as a child and was it worse when overly stressed/anxious, do you have any clues as to the initial possible cause (like an infection) and do you have pyroluria?
Hashimoto’s can also be triggered by an infection but I don’t see any research on this and AIWS but it may be too soon. There are a number of studies on neurological symptoms with hypothyroidism.
You say “I’ve never met anyone who had a similar experience. (I’ve taken detailed case health histories from people for a very long time now)” – have you specifically asked about AIWS? Three of my colleagues (psychiatric NP, neurologist and psychologist/nutritionist) have also said they’ve not seen it much – like a handful in 20 years. And yet I have a fair number of people in my community having had episodes. Is it not on the radar of health professionals or are kids not sharing (after having been dismissed by a doctor like you were) or not sharing because they don’t find it problematic or maybe think everyone experiences this?
Hello. This has been interesting. I do not know of and have never heard of pyroluria.
I have AiWs 24/7. If I look at a pattern after a second or 2 it will start to move. I have little to no proprioception and lose my arms and legs, on times I have to wiggle my fingers or toes to remind my brain where they are.
I also have EDS-Hypermobility type and lots of other things.
Symptoms are definitely worse when I am stressed and worsen the anxiety as I have to keep re-focussing my eyes. BUT it is present all of the time. Just more intense when stressed or nervous.
Kat
Thanks for sharing. You may find this blog helpful: Social anxiety caused by pyroluria: oxytocin, the vagus nerve, pectus excavatum and Ehlers-Danlos Syndrome https://www.everywomanover29.com/blog/social-anxiety-caused-by-pyroluria-oxytocin-the-vagus-nerve-pectus-excavatum-and-ehlers-danlos-syndrome/
You say “Just more intense when stressed or nervous” – may I ask which nutritional approaches you use to help reduce stress/anxiety (like diet, GABA, tryptophan etc) and presumably lessen the frequency of the AIWS episodes? And how long you’ve experienced AIWS/from what age and do you have any clues as to the initial possible cause (like an infection)?
Trudy. I have been following you for years. I bought your book when it first came out. I have read sections several times and each time it has new meaning. You are the reason I supplement with P5p and my B6 blood results finally lowered. Thank you! I found out my zinc copper ratio is upside down due to ion test.
I have a question – Can you tell me if the spleen is involved in clearing pyroles. Is there a way to test pyrole disorder in NY? Is low b6, low magnesium and upside down copper zinc status due to pyloric without testing?
I have no spleen
Stacey
The spleen is involved and best is to check with https://www.dhalab.com/ about NY testing options.
Glad to hear my book has been helpful.
Hi Trudy, yes my son got AIW only when ill, and he is my Pyrroles kid. Has had EBV. My daughter suffers from AIW often, but I’m not sure about Pyroluria. She is low zinc but I’ve never measured copper or Kryptopyrroles. And I myself had it often when ill through childhood- and that was often as I was a sickly child. I’m do have Pyrroles too, and had EBV several times as well as Step super often in childhood. I do see a connection in the kids that overheat- they sweat and then sleep talk, maybe sleep walk and even have night terrors. I see a lot of kids with this and would love to find the definitive connection.
Clare
Thanks for sharing all this as it helps us all learn. It’s interesting that you and your kids have experienced it and that you see it a lot with the kids you work with. It makes me wonder if the practitioners who feel it’s rare may simply not recognizing it whereas your personal experience helps you to. I wondered if it could be the subset of kids you work with that may be more prone to this type of thing too but 3 functional medicine practitioners whose work I highly regard and do work with kids with anxiety/depression etc say, based on their experience, its rare. When you say a lot of kids – how many/what percentage?
How would you describe your AIWS episodes and how do your children describe them? What kind of illness – bacterial? viral?
Has the pyroluria protocol or other nutritional interventions helped to reduce or stop the episodes?
The overheating connection is an interesting one. This symptom is common with low serotonin so I wonder if there is a connection here. Zinc and B6 are needed to make serotonin so this may be part of the picture.
Hi Trudy, is evening primrise oil also recommended for men with pyroluria or only for women? Thank you
Daniel
I do if it’s low. Fatty acid testing confirms this and another clue is zinc levels don’t shift (it enhances zinc absorption)
Thank you for sharing this article! Can AIW also be when you close your eyes? As a child and now a few time as an adult, when I close my eyes to sleep it feels like I am separate from my body and that my body is huge and morphing and that I am hovering inside my giant body. If I opened my eyes I wouldn’t feel that way.
I am very curious if you have looked into mycotoxins and I would be so curious how many people with AIW have had mold exposure? And are there any other symptoms/issues that correlate?
Sarah
I haven’t had this feedback but I would think it’s very possible. Low vitamin B6 also comes to mind because of the nightmare connection.
The same with mold exposure – very possibly a factor – and other things like metals, Lyme and other infections (but not something I’ve explored).
Do you have pyroluria and have you had toxic mold exposure?
Hello,
I am new to you and your research. I found myself researching Alice in Wonderland Syndrome once again because my 8 year old son just had another episode. They started when he was 3. Maybe sooner, but when he was 2 he couldn’t talk very well yet and he would just scream and the episodes are almost always at night so I thought he was having night terrors back then. He has had night terrors without AIWS symptoms so I think he has had both separately. Now I can tell the difference usually and he never remembers a night terror but always remembers AIWS episodes. Once he was more verbal he described the episodes as “long vision” and we all still do to this day in our house. He can differentiate and now we can too between the night terrors and the “long vision” He said everthing was normal sized but very far away. He once asked me why my face was drooling. Mostly to him everything is normal sized but very far away and the drooling of objects only happened once.. He was so afraid and upset and still does get so upset but I do believe that is because the episodes are getting worse and not better. When he is having an episode it usually wakes him from sleep. He is usually sweaty and frantic and almost like in a sleep walk. He goes to the bathroom and eventually sits down and looks down. A cold rag on the back of his neck sometimes helps. He always wants the light on and says the light helps. He won’t leave the light of the bathroom until he knows its completely gone. He cries and sometimes yells and is so afraid. His eyes look glassy and like he is looking right through me or past me. The episodes last from a few minutes to the longest being almost an hour in which he begged for an ambulance. Its horrible. For all of us. His father and I are so helpless and it triggers our own anxieties and we have had to truly work on being a team during these times.
When he was first diagnosed it was through his eye doctor. Once the doc mentioned AIWS I knew what it was because my aunt had been diagnosed with it in her early 30’s. Which she told us was rare. After reading about it I think it is. Anyways so it clicked and I knew what it was from hearing stories from my aunt. Our son had an MRI and they said his optical nerve was a bit enlarged, however with recheck over time and with the fact that he has perfect vision they think that his is just a bit larger. I was told we all have a variable size of that nerve. The neurologist and eye doc both agreed and he was officially diagnosed. I read as much as I could. Even 5 years ago there was 5 times less online or in journals than there is now. At least that I could find. However, I came across a forum somewhere where adults that had it as children had done some elimination diets to see if it was caused by foods kind of like migraines can be, and a common thread was food dyes/colorings. I have always read that food coloroings can be a neurological blocker and so I decided it couldn’t hurt and we stopped eating food colorings of any color in any food it was found. It was tough at first because they put in everything! After 6 months of finally getting everyone in his life on board with this new rule, he had gone from having about an episode every other week or so, to not having 1 episode. It was awesome. About 9 months into not giving him food coloring, he ate 1 piece of strawberry candy and a skittle at a birthday party, and within 3 days he started having episodes and they lasted nightly for about a week. So we were convinced that food dyes were his trigger. Over the last few years as things calmed down we would slip and let him have a piece here or there and sometimes it would trigger him and others times it wouldn’t. I noticed a pattern. Red 40 is the worst. Then blue, then green and then the least of the color triggers is yellow. This week being Halloween and Fall Festival etc we slipped twice. Once with some bubble gum and next with a smudge of icing on a cake that he mostly scraped off. And then there we were 20 minutes ago in the bathroom with a pretty bad episode. And here I am typing this to you. That being said he is a kid and sometimes forgets the possible consequence, but for the most part he advocates very well for himself and stays away from dyes. He learned how to read color words very quickly on ingredients lists. Now of course they are getting sneaky and naming the colors with letters and numbers. Like E133 and such. But he tries as hard as an 8 year old can to stay away from dyes because the episodes scare the hell out him.
As far as stress being a trigger I would have to agree. There have been times during dye free periods of his life that things were stressful. The beginning of school each year is now a predictor time for me. A major move once triggered an episode or two within a week. But the stress triggered episodes were usually pretty mild and he was able to pretty much talk himself through it and talk to us and communicate what he needed and then would simply go right back to sleep.
Another thing I wanted to mention was that his neurologist told us to give him children’s magnesium. Which we did. I am not sure if it worked or not. And we don’t give it to him anymore. Nothing works for him like coping with stress as much as possible and keeping the food dyes/ colorings out of his diet.
I am not sure why his episodes seem worse to me. Maybe because he is older and his reactions are more “dramatic”? He does get nauseous now and that never really happened in the beginning. Or maybe it did but he was too little to express all that. Now he is older and it just seems heightened. Maybe he is seeing different distortions. I’m not sure. Thats why I started looking into help again. I was hoping that by this time he would start growing out of it. Either way, we are no stranger to AIWS and we will get through this.
Thanks for your work and allowing us to comment. It has helped to read other’s experiences and not feel so alone or crazy. And it has helped to tell his story and process through writing it.
Jessica
Thank you for sharing and wonderful that you have made the connection to dyes and stress. It’s possible that the episodes seems worse because when the person can communicate better. But it may also be due to nutrient depletion of zinc and vitamin B6 – from pyroluria as a person gets older.
Regrading stress, my work with diet and amino acids is worth exploring too – GABA and tryptophan help so much. Check out my book “The Antianxiety Food Solution by Trudy Scott” https://www.everywomanover29.com/blog/the-antianxiety-food-solution-by-trudy-scott/
I’d love to share this as a new blog too – I believe it will be so helpful to so many families.
feeling really grateful to have found your post tonight, I’ve never felt so helpless than these last 2 weeks, it’s an awful experience for a family to deal with.
Can I ask how you got a diagnosis please? you say thru the eye doctor- are they well versed in this condition? or did you drop lucky that he’d heard of it? also was it diagnosed from a process of elimination of any other causes? weve yet to see the eye consultant but I’m in 2 minds as to mention aiws or not, as sometimes they hate the patient starting ‘I came across this on Google’
Kate
I don’t believe eye doctors are well-versed in this condition. I always share my insights and what I have found – and so should you. Feel free to share this blog and the research.
And don’t forget the nutritional/biochemical aspect too. My book “The Antianxiety Food Solution” is a great resource https://www.everywomanover29.com/blog/the-antianxiety-food-solution-by-trudy-scott/
my 8 year old son has just started on this very frightening AIWS road and we are struggling to get anyone to have any idea of what we are talking about
His episodes have flared this last week following what we think was norovirus (sickness and diarrhea and fever) lasting 8 days. He also ate a tuna wrap so may have been food poisoning – Mercury mentioned above – now hes gone straight into a cough and cold with fever. poor thing has had an awful couple of weeks. But he has also said these visual issues have happened to him on and off for years before falling asleep but very mildly, now it’s more powerful and he’s scared. I think he has also finally found the vocab to try to explain what he’s experiencing. He has a history of awful sleep, did not sleep as a baby (16 months old before he slept 4 hours in a row) and hates going to bed even now, he has had regular night terrors which have pretty much petered out this last year, which he never remembers.
With these aiws episodes he describes it as everything looking far away but also big? he also has had a spell where his hearing was affected. Mostly they are lasting 15 minutes and some small episodes coming and going for him in seconds. he is wide awake and they are starting to happen in the day. it does seem like the more anxious he’s becoming the more they are coming and longer they last
We have so far taken him for a full eye exam – all clear. They have referred him to an opthalmologist. we have rushed him to a&e incase it was a seizure – no help. we have called the gp who didnt see him but seconded the referral to opthalmology. But we are beside ourself with worry and are trying desperately to get his bloods done and an mri to rule out infections and tumours.
He’s a smart, emotionally intelligent and yes sensitive boy but we have seen no sign of anxiety in him until now. He’s socially confident and dominant in his small group.
Any advice is really welcome, we just need help to be able to help him. really interested to read about food colourings and b6 and zinc. ill start him on this track immediately
Also I’m petrified this is his life now and he will be tormented by this without any help or any solution. please tell me we can do something??
Kate
Sorry to hear your son is struggling. It’s wonderful you are exploring other resources and are open to the nutritional/biochemical aspect (as well as ruing out all possible medical causes). Night terrors, poor sleep and small group all make me wonder if pyroluria is a factor so be sure to help him with the pyroluria questionnaire https://www.everywomanover29.com/blog/pyroluria-questionnaire-from-the-antianxiety-food-solution/. Keep in mind that children and adults with pyroluria can appear socially confident because they put on a brave face.
As I mention in my other comment my book “The Antianxiety Food Solution” is a great resource https://www.everywomanover29.com/blog/the-antianxiety-food-solution-by-trudy-scott/
thank you Trudy, just finding this blog has been really helpful, I will look at those other resources and I did the questionnaire but like you say how i view him may not be how it is for him inside he may mask well. we are still having these episodes and waiting to see a specialist. I’ll update when I have information to try to help others
hi all 3 of my children have had AIWS and i remember as a very small child having visual distortions of my hand and the feeling of my tongue been huge. my oldest had her first episode when she had as very high fever and from then on whenever she was sick or very stressed complaining i was too close to her and that i was talking too loud and walking too fast…she is now 21 and sais she very rarely has episodes. my second chid had his first episode also with a fever compaling of large fingers and an extreme heaviness of tongue. only gets occasionally when has fever. my youngest also had his first episode during a fever. mainly happens during his sleep where im talking really deep and slow but walking fast. has episodes when unwell and stressed. hoping the 2 boys outgrow like my daughter seems to have. i only had episodes under 12 yrs of age.
Im veryhappy to see this post and want to learn more about it
Leah
Thanks for sharing your experiences with you and your 3 children. I’m curious how you all score on the pyroluria questionnaire.
If you’d like to learn more about pyroluria I have an entire chapter in my book “The Antianxiety Food Solution” https://www.everywomanover29.com/blog/the-antianxiety-food-solution-by-trudy-scott/
And there are many blog posts here on the site – simple use the search feature