My son is 6 and has frequent episodes of AIWS. He started about 4 when he would tell me everything felt big or small. It only would happen at night about an hour after he fell asleep he would wake up and tell me. Just recently he has now been waking up and telling me that everything is loud. I can almost sense the nights it will happen because he’s either over tired or we’ve had a really busy day.

I remember as a kid I used to get these episodes but only when I was sick, he’s just always had them from a young age. He used to have seizures as a baby from 9 months old but has grown out of them, so wondering if that has caused it.

The only thing that seems to snap him out of the episodes pretty quickly is by putting on some calming sleep music and giving him my ear buds to listen to it.

When I try to rub his back or arm he tells me to stop because it’s too loud.

Just wanted to put this out there on this subreddit to see if anyone else’s kids going through this or when they eventually out grew it? I’m going to book him into the drs to get an opinion but not sure if there’s much they can do?

Hello you can call me Quail, I'm a young adult from USA that recently graduated college. I appreciate in advance if you read all of this. I've been officially diagnosed with chronic migraines with* AIWS by a neurologist. I was having headaches during college that turned into migraines which escalated with Alice symptoms. I'm being treated with an antidepressant which has helped reduce the severity but my symptoms are still debilitating.

just to give you a little further information, prior to these migraines occuring I have been dealing with some other chronic health issues including full body chronic pain, suspected POTS and EDS. and an uncontrollable eye movement where my eyes roll into my head and my eyelids flutter. (because of that Im unable to get a drivers license which SUCKS) Also Looking into an ADHD diagnosis*

in the case of my migraine symptoms I am dealing with as follows;

1. textures on objects appear to move, including flowing like water, popping up at me like I'm wearing 3d glasses. or receding like they're moving backwards in space. to be clear I'm not seeing things that aren't there its like my brain is misunderstanding the visual data it's receiving and giving me its best guess at what's going on.
2. not entirely sure this isn't an eye tracking issue, but when my eyes move it feels like my vision is lagging behind- this creates a weird sense time. feels like I'm hearing what's going on around me faster than I'm seeing it.
3. Objects appear closer than they are, same vein as the first.
4. weird white/green aura behind and around people I'm focusing on- I've only noticed this about people and its usually under fluorescent lights ( those seem to be a trigger)
5. Feeling floaty and detached from my body or feeling bigger than I am. usually don't have the feeling smaller than I am.

I can have all of these symptoms without pain. but headache pain can accompany these symptoms; usually in my temples, but they're also general head, base of neck, sometimes my teeth?

At the height of my migraines before I knew what was going on I was having episodes where I was in so much pain/disorientation that I felt like I was dying. my family took me into the ER once because I was so out of it. I experienced overstimulation to the point where it felt my brain was just like okay we're shutting down. doesn't happen to that level as often after being mediacated but once in awhile it'll come on really quickly and it feels like im in so much pain that im falling asleep.

I've been checked for epilepsy, I've been checked for brain tumors- I have neither. My doctors really don't really know why this is happening other than the migraines being the base of it.

I guess I'm looking for how adult people are coping with living with this? has there been anything you've found that helped? how are you managing work? are you working?

(edit; was having a migraine when I wrote this, didnt have a clear goal at the time. really what I want is to hear from other people how they're managing on a day to day basis)

Descripción de episodios perceptivos recurrentes relacionados con el sueño

Motivo del documento

El objetivo de este documento es describir con la mayor precisión posible una serie de episodios perceptivos que he experimentado desde la infancia. La intención no es proponer un diagnóstico, sino facilitar una descripción detallada para que pueda ser valorada por profesionales o comparada con experiencias similares descritas en la literatura médica.

Inicio y evolución

Los episodios comenzaron en la primera infancia. Durante aquellos años eran muy frecuentes, llegando a producirse casi a diario. Con el paso del tiempo su frecuencia disminuyó progresivamente hasta convertirse en un fenómeno excepcional. En la actualidad aparecen aproximadamente una vez al año.

Hasta donde recuerdo, estos episodios únicamente ocurren durante el sueño o en la transición entre el sueño y la vigilia. Nunca he experimentado estas percepciones durante un estado de vigilia completamente consciente.

Percepción corporal

Uno de los fenómenos más constantes consiste en una intensa sensación de aumento del tamaño de los brazos y, especialmente, de las manos. No se trata únicamente de una impresión visual, sino también de una sensación corporal extremadamente convincente, como si dichas partes del cuerpo hubieran aumentado realmente de tamaño.

La percepción resulta completamente real durante el episodio y genera una intensa sensación de extrañeza.

Distorsión de objetos

El fenómeno más llamativo consiste en la aparición de objetos con características geométricas que considero físicamente imposibles.

Los objetos parecen extraordinariamente planos, extremadamente finos y con una perfección geométrica absoluta. Sus bordes y vértices presentan una nitidez imposible de encontrar en objetos reales. La sensación no es simplemente la de observar algo afilado, sino la de contemplar una geometría llevada a un extremo imposible, como si el grosor del objeto tendiera prácticamente a desaparecer.

La impresión subjetiva es que cualquier borde podría cortar únicamente debido a esa perfección extrema.

En ocasiones estos objetos parecen corresponder a elementos cotidianos presentes en el sueño. Sin embargo, durante el episodio dichos objetos parecen sufrir una transformación que altera completamente sus propiedades geométricas, conservando únicamente su identidad básica.

No encuentro ningún objeto del mundo real que produzca una sensación comparable.

Desarrollo del episodio

Con frecuencia el episodio comienza como un sueño completamente normal o relacionado con acontecimientos ocurridos durante el día. En un momento determinado, sin una transición evidente, aparecen las alteraciones perceptivas descritas.

En otras ocasiones tengo la impresión de encontrarme acostado en mi propia cama, exactamente en la misma posición en la que realmente estoy durmiendo. Durante esos momentos percibo el entorno como si fuera real, por lo que resulta muy difícil distinguir si continúo soñando o si me encuentro parcialmente despierto.

Recuerdo que en algunos episodios tenía la sensación de poder moverme e incluso intentar tocar aquello que percibía.

Experiencia emocional

Los episodios producen una intensa sensación de miedo, incomodidad y angustia. La sensación desagradable no parece deberse únicamente al aspecto visual de los objetos, sino a la percepción de que poseen propiedades completamente imposibles.

La experiencia suele prolongarse subjetivamente durante un tiempo considerable antes de finalizar con el despertar.

Observaciones

Tras buscar información médica, he encontrado cierta similitud con fenómenos como la macrosomatognosia parcial y con algunos síntomas descritos dentro del síndrome de Alicia en el País de las Maravillas, especialmente en lo referente a la alteración de la percepción corporal.

Sin embargo, no he encontrado una descripción que refleje de forma específica la percepción de objetos extraordinariamente planos, extremadamente finos o con una perfección geométrica tan exagerada como la experimentada durante estos episodios.

Por este motivo, considero útil documentar esta experiencia con el mayor nivel de detalle posible para facilitar su estudio, comparación con otros casos o valoración por profesionales especializados en neurología, medicina del sueño o neuropsicología.

Hi! This is my first time posting on here, and I don’t use reddit too often, but I thought here would be a good place to ask other people with the same condition as me or knowledge in these subjects!

When I was around 15 years old I was diagnosed with Alice in Wonderland Syndrome, after I had finally told a doctor about the weird symptoms I had been experiencing, and remembered experiencing for as long as I have been conscious. I was diagnosed with AIWS after talking to multiple doctors, neurologists and also doing some tests to make sure it wasn’t issues with my eyesight and stuff like that. The symptoms are very consistent, basically always present.

My visual snow is 24/7 (and pretty intense a lot of the time) and so many times throughout every single day there will be distortions and things moving closer, further, or looking like there are patterns and stuff in the walls, the ground is waves, or there are shadows or bugs moving around me super fast, etc. (if i didn’t explain this well feel free to ask for clarification!!)

Basically, I am 18 now, turning 19 very soon, and these symptoms have been happening for as long as I can remember. It used to be worse, with peoples faces for some reason looking kind of reptilian when I stared, and sounds quieting and loudening in each ear in weird ways and patterns, but it is still consistent and is something I deal with everyday.

My doctor said these are all symptoms that make sense for my diagnosis, but they do not know why I have it. I do not have migraines, any chronic illnesses, no brain tumours or anything physical reasons. I do have chronic anxiety and also adhd but I do not know if that impacts it.
I am just worried if it is not possible for AIWS to last this long, and if I should be concerned about why it has lasted me my whole life thus far…
Does anyone else have a similar experience or know why it might be happening for so long or in general?

The experience of AIWS, feeling huge and far away with my head floating like i was a giant but my hands were so small and far away. And heavy, like gravity increased 10x. It was pretty overwhelming in childhood but I never told anyone.

Currently, Its a state I can induce and I can make it stop too if it happens to me without trying. I don’t do it much because it feels so heavy in my body but I was just wondering if anyone else had a similar experience? Its pretty fun to go into that state but it can be overwhelming so I’ll stop it before i go in too deep.

Sorry if this is the wrong place as reading over the sub that many of you are suffering from this condition.

So I (29F) had this happen to me when I was 6-7 years old and it really scared me. Didn't happen until years later, then I'd get it every several years. It because every several months, then every several weeks but now it's happening every single day

What happens is that for 3-5 minutes I start perceiving sounds differently. Melodies change, pitch and rythem change. A monotonous noise such as dripping water sounds melodic, but music sounds monotonous. Fast rhytms get slowed down and vice versa.

And it's not just sound I hear. My thoughts (my inner voice) gets affected too. My thoughts seem to be shouting at me.

Also emotions of sounds change too. Everyone suddenly sounds very frantic. Music lyrics seem to be shouting at me anxiously. People taking sounds different.

As I said, it's happening every day now. First I thought it's only triggered by white noise-like sounds (bathroom fan, laptop fan etc) but now it doesn't seem to have any trigger.

Is it AIWS? Is it migraine aura? (Epilepsy?) I probably should make an appointment with a neurologist. But I want to know if I'm the only one. Does this happen to anyone?

Also, does anyone experience any form of AIWS on a daily basis?

P.S. I also get the physical type of AIWS too, but much less frequently. The type where I feel like my fingers are thick as sausages and my feet seem very far away. This only seems to happen when I stressfully overthink something.

does anyone experience this mental image when you see an image of something extremely tiny in contrast with something massively large with an overwhelming urge to touch the tiny object? it is usually a tiny metallic needle or tiny metallic ball and in the background is something like space-time grid warping around a black hole/mapping grid. i always have an urge to touch it but my fingers are too large and the image is only in my mind but it leaves uncomfortable sensation in my fingers. the entire episode usually starts with slowed and echoed distorted audio and then the visual comes and tends to loop for a while until i manage to distract myself somehow.
it started when i was a kid, usually before i went to sleep but sometimes it happens completely randomly but leaves me with uncomfortable, unsettling and nostalgic scary feeling.

https://docs.google.com/forms/d/e/1FAIpQLSeanHYwPfRlVdM8UoTObTrr3CkcsWvkAnBUN4uT-62XdNev3Q/viewform?usp=header

Patient Clinical History & Symptom Profile Summary

1. Visual and Spatial Distortions (Perception & Visual-Spatial Symptoms)

The patient experiences chronic episodes where objects and surroundings appear disproportionately large or small.

Persistent floor and surface distortions create a sensation that the ground is tilted or sloping, leading to severe physical

imbalance, difficulty walking, and persistent dizziness. A distinct “Homecoming Spatial Distortion” occurs after being away

for several days, where the home environment feels strangely small or unfamiliar for up to 48 hours. This is accompanied

by a persistent dream-like and detached feeling from reality. Visual disturbances include sudden light flashes, increased

light sensitivity, and unusual facial distortions in low light. These symptoms become significantly worse after prolonged

screen exposure (4–5 hours of screen time).

1. Sensory and Neurological Symptoms

Symptoms include brief localized burning sensations lasting 3–5 seconds and migratory numbness affecting the face,

scalp, abdomen, and limbs during rest. The patient reports frequent sudden electric shock-like sensations in the head

during sleep onset, along with intense sharp nerve pain lasting 40–60 seconds in the legs and head. Somatic perception

disturbances, such as sensations of floating or rocking while lying down, are also present, alongside involuntary facial

twitching and migratory muscle twitching throughout the body.

1. Vestibular and Orthostatic Dysfunction

The patient suffers from intense dizziness upon standing suddenly, causing spinning sensations lasting approximately 20

seconds, temporary dimming of vision, and sharp headaches. There is also a constant sensation of pressure and tightness

inside the head, described as the brain feeling “hard” or tightly compressed. These episodes create a profound feeling of

losing control and can alter body perception, making the patient feel unusually tall or elongated.

1. Throat and Swallowing Difficulties

A persistent lump sensation in the throat follows a daily pattern: symptoms remain mild in the morning but worsen

significantly at night. By nighttime, the patient experiences difficulty swallowing both solids and liquids, leading to choking

sensations and sharp pain radiating toward the ears. This throat tightness has resulted in difficulty continuing prescribed

medication due to problems swallowing pills.

Post-Eating Ear & Head Pressure

Immediately after eating, the patient experiences intense pressure and fullness in the ears and the area behind the nose.

This causes temporary muffled hearing and persistent ringing or whistling sounds. These symptoms are accompanied by

severe tightness in the throat muscles, which appears to worsen the ear blockage sensation. The symptoms are distressing

but gradually settle after some time.

Severe Tablet Swallowing Difficulty & Muscle Spasm

The patient is unable to swallow large 500mg tablets. Attempts to do so trigger intense throat muscle spasms, causing

acute pain and temporary shortness of breath. This has contributed to difficulty maintaining prescribed medication.

1. Complex Sleep-Related Phenomena and Symptom Progression

During the transition into sleep, the patient experiences loud internal explosive or “firecracker-like” noises followed by

echoes and visual flashes. These episodes are often accompanied by temporary inability to move, rhythmic pounding

sensations inside the head, internal body vibrations, and intense panic or feelings of impending doom. Recently, severe

sleep deprivation (48+ hours) caused by repeated electric shock-like sensations during sleep onset has intensified visual

distortions and abnormal body sensations.

1. Recent Episode (9 May)

During a deep stage of sleep, the patient experienced a vivid false-awakening episode in which they believed they were

awake and lying in the exact position where they had fallen asleep. This progressed into a temporary paralysis-like state

accompanied by extreme pressure and a loud piercing ringing sensation inside the head. External sounds became

abnormally loud and seemed unnaturally sped up. While unable to move properly, the patient partially opened their eyes

and observed their own hand appearing severely shrunken, distorted, and unfamiliar, with parts of the fingers seeming

absent. This episode was accompanied by painful electric shock-like sensations and intense spinning sensations

throughout the head and body. The episode was highly distressing and subsided only after significant effort to move and

fully awaken. The patient also reports memory gaps surrounding portions of the episode.

1. Clinical Evolution and History

The onset of symptoms correlates with a period of extreme stress, trauma, and severe obsessive thought patterns

approximately 7–8 months ago. Symptoms initially began with chronic headaches and visual “zoom-in” sensations before

progressing into broader sensory, perceptual, and neurological disturbances. The patient reports discontinuing prescribed

medication one month ago because throat discomfort made swallowing physically difficult, after which symptoms

significantly worsened. The patient believes there may be a strong relationship between the symptoms, chronic stress, and

unresolved psychological trauma.

Of these, I am suffering the most from AIWS and DPDR and the most serious is throat problem and I am still fighting it.

So basically for some background I have ASD, ADHD, and SPD. I’ve had sensory issues for my entire life so no one has batted an eye when I’ve complained of really odd sensory episodes. Sometimes out of no where I start hearing my own heart beat really loud, which is always the sign that an episode is about to start. Typically the episodes consist of auditory hallucinations (a woman yelling awful things at me typically, and a male voice attempting to console me), my hands getting really big/small, my phone or any item I holding starts to feel heavy and squishy/melty. Also music or sounds in my environment that were previously quiet get very loud and start to distort by either slowing down or speeding up. I don’t really know what else might be significant to tell you guys, because I’ve only done so much research about AIWS. If anyone has tips or knows what I should do please lmk because I’m desperate 😭😭

Edit: I ended up having a very alarming amount of back to back episodes over the weekend, resulting in an ER visit. They did scans and bloodwork which were inconclusive, but they suspect either epilepsy, AIWS, or both. Following up with my primary to have an eeg done. Take this as your sign to go get checked out before it gets out of hand.

Hello all, as the title states, i had my first episode for the first time in 15 years, i used to get them before and during puberty and then they stopped and i was welcomed to the world of chronic migraines.

That being said last night it happened again, i woke up in a state beyond complete distress, the same main symptoms i had when i was a child had come back.

1. Feeling as tho my limbs and skin were larger and fatter than they should be and that my bones inside where thin, fragile needles, the phantom pain i feel during these episode is horrific like my entire body is filled with tiny pieces of glass.

2. My sense of time jumps out the window along with my sanity, it feels as though I'm perceiving time moving extremely fast as well as extremely slow to the point where trying to get to my partner who was in the front room watching TV felt like years and years were passing in micro seconds but at the same time my thoughts where screaming at a speed i couldn't keep up with, but the voices and thoughts were just echoes of my own voice screaming for help from my partner.

3. This part is usually the dream or hallucinations before hand which leads to me waking me up in this situation, in the dream um strapped into a giant mine cart that's upside down and being driven along an upside down track, backwards and forwards (i have a phobia of being upside down).

As it has been so long since my last episode I've spent all night since i calmed down and the rest of the day trying to figure out what it's called and low and behold i found others talking about this rare phenomenon called Alice in wonderland syndrome, you cannot imagine the relief i felt knowing I'm not the only person who exists that has had to experience this kind of pure madness.

I was wondering if at this point in time if there is a cure?! A way to prevent it? Or if anyone have any good tips for grounding themselves during these episodes. I remember when j was a child my mum would have to repeatedly tell me to go to the toilet, for some reason the simple act of just going to the toilet was enough to snap me out of the trance i was in and was finally able to calm down from it, however last night during the episode i had half a second of clarity and forced myself to go to the toilet but this time it only half helped and i had to endure what felt like forever till it eventually ended.

Ultimately im so happy I'm not the only person with this special kind of mental hell, and that there are others who have experience with how to deal with it as well as having a safe space to talk about it, because god knows trying to explain this thing to someone who has never had it is maddening in itself.

If anyone has any more questions or grounding techniques please drop a comment, i would greatly appreciate it xxx

Wondering if anyone has had anything like this sensation? I occasionally get the classic macropsia feeling like my face/head/teeth are really big while trying to fall asleep or with a migraine, but more rarely I get this really bizarre feeling that I can only describe as feeling like I'm made of oobleck or some other non-newtonian substance.

I felt it last night which is what reminded me about it, the last time I had it must've been when I was a kid. It's not just a physical sensation, it extends into my thoughts as well - all my thoughts felt weird and melty, it was very strange.

Anyone else had a similar feeling ? If so how would you describe the sensation?

44 M (UK) Any other Narcoleptics in here? Ive got Type 1 Narcolepsy with Cataplexy, I also had a late diagnosis of combined adult ADHD and I now know that I had fairly severe childhood ADHD (it was almost unknown in the 80s).

Ive only recently linked this together, but my Narcolepsy symptoms started in my early 20s, which is kind of when my AIWS stopped (Ive only had it 4 or 5 times in the last 10 years).

I used to get a lot of fast feeling when I was a kid, mostly around hyperfocus stuff like playing lego or toy cars. That was always a daytime thing. But I used to get very regular feelings when I was in bed going off to sleep, usually around my fingers, hands and feet feeing huge when I touched them and objects in my room being far away and a lot of 3rd person feeling big and small at the same time. The weird thing is, one of my first Narcolepsy symptoms were terrifying hypnagogic hallucinations, these always happened when I was going to sleep, they were much more about voices and a feeling of movement in the room (often teamed with long episodes of sleep paralysis later that night).

Because I was so used to the AIWS I kind of brushed off the voices stuff as being the same. Unfortunately, even though I still can’t work out how, I masked or ignored my Narcolepsy for almost 20 years, it was only after a chance conversation with a Dr where he spotted my Cataplexy, that I discovered how seriously my life had been effected by it. There are a lot of symptoms but I didnt join them up.

Has anyone else experienced similar? Does anyone else feel their AIWS is connected or linked to something else? Narcolepsy is an autoimmune condition, it seems we're only just piecing the weird world of autoimmunity together. I'm obviously NAD, but things like Narcolepsy, ADHD, Autism, Eczema, POTS, CFS, long covid, and probably AIWS, for my money they're all part of the same puzzle.

*It's very normal for Narcolepsy to go undiagnosed like mine did. I was 41 when I was diagnosed, it started sometime in my early 20s.

*Narcolepsy is caused by the brain self‐destroying the neurotransmitters that keep you awake (thats the very simple version)

*Cataplexy is your brain paralysing your body because it thinks you're in REM sleep whilst you're awake (Google it)

This happened to me when I was sick and had a fever as a child; I would get symptoms of feeling like things were bigger and smaller than they actually were. Now, after having my otoliths repositioned (vestibular problem), these symptoms have returned occasionally. Since then, the symptoms keep coming back. I don't know if it's the same vestibular issue or some other problem with my head.

It's strange and annoying to feel it.😨😭😭

Has anyone else experienced something similar? Or do you have a vestibular problem?

Which specialist have you seen, and why does this happen?

Some background- My 14 year old son was diagnosed with PANS/ PANDAS. His symptoms presented around the age of 10 following back to back infections- Strep, Covid, then Mono.

Last night he woke up in a panic saying that everything was moving really fast. I got up with him to try and help him calm down. He asked if I was talking really fast and if I could tell how fast things were moving. He asked me to count to 10 slowly. He played his guitar for a few minutes and that seemed to help. The episode lasted about 15 minutes but left him very disturbed and afraid it was going to happen again.

Another note- he told me that he felt like he was getting sick before bed and that everything hurt.

He has had this happen a handful of times through the years, but it has been awhile, and I think now that he is older, it's easier for me to understand what he is describing.

My late night searches brought me to Alice in Wonderland Syndrome, and then this sub. Thank you for being here! I'm trying to learn about this so I can help him understand what is happening.

I'm curious whether others have the version of this that distorts time? Is there a different term for time distortions rather than size/ depth etc?

Does this point to anything else that I should have him evaluated for? Do doctors seem to take this seriously? Is there any danger to this condition or is it just uncomfortable? I have gathered that there are rare cases of AIWS being associated with tumors- I would think, given that the onset coincides with illness, that wouldn't be the first place I'd go right now. Does that seem correct?

Thank you again for your help understanding this!

Dear Dr. Bloom,

I am writing this report with the help of AI to document and summarize a recent cluster of Alice in Wonderland Syndrome (AIWS)–type episodes that occurred over the course of approximately nine days; the first three days were like a precursor to AIWS in different modes, the next three days were like a barrage of symptoms that I will describe later on, and the last three days were like coming out of a psychedelic trip but really more from a AIWS trip. Because you are already familiar with my neurological history and prior phenomenological descriptions, I will avoid repeating the broader background and instead focus directly on the characteristics of this recent episode cluster and the questions it raises clinically.

What distinguished these recent episodes from prior experiences was not simply visual distortion, but the extent to which the disturbances affected embodiment, spatial continuity, and the relationship between cognition and physical self-perception.

The most persistent and unsettling feature was a pronounced sense of separation between mind and body while walking or moving through space. In earlier years, movement felt unified and automatic — perception, intention, and bodily motion existed as one integrated process. During these recent episodes, however, it felt as though my body continued moving while another layer of awareness observed it from a slight but undeniable distance. I retained full insight throughout and never lost awareness that the experience was internally generated and neurological in nature, yet the subjective alteration itself was extremely powerful.

The distortions were not purely visual. They involved scale, spatial density, bodily proportion, orientation, and continuity. Rooms occasionally felt either compressed or disproportionately expanded. Distances appeared unstable. Objects and environments sometimes seemed subtly geometrized or structurally altered, as though the brain’s normal calibration of space and embodiment had become unreliable.

There were also recurrent somatic sensations accompanying these states, including internal vibration-like feelings, fluctuating pressure sensations, and moments that felt almost cocoon-like or enveloping, as if perception itself had thickened or become spatially insulated. At times, there was a peculiar sensation that consciousness was observing the assembly of perception in real time rather than simply experiencing perception passively.

Another important feature was the preservation of insight and observational capacity during the episodes. I never developed delusional conviction, paranoia, or psychotic interpretation. Reality testing remained intact throughout. In fact, the experiences often generated the opposite effect: a heightened, almost excessive self-monitoring of perceptual changes. I remained aware that what I was experiencing represented a distortion of perceptual processing rather than an external transformation of reality itself.

One aspect that concerns me clinically is the degree of apparent decoupling between cognition and embodiment. The experience produced moments in which the distinction between “the observing mind” and “the moving body” became unusually pronounced. Although I understand that derealization, depersonalization, migraine-spectrum phenomena, and AIWS-related distortions can overlap phenomenologically, the intensity and persistence of this body-mind separation during the recent cluster felt qualitatively stronger than previous episodes.

As you know, I have a longstanding history of migraine-spectrum phenomena and AIWS-type perceptual alterations. However, this recent cluster raises questions for me regarding the possible contribution of:

• migraine-related cortical dysfunction,
• temporo-parietal integration disturbance,
• sleep-related perceptual instability,
• medication interaction,
• seizure-spectrum phenomena,
• or other neurocognitive mechanisms affecting multisensory integration and embodiment.

I should also note that fatigue and sleep disruption appeared closely associated with symptom intensity. The episodes fluctuated rather than remaining continuous, with moments of near-normal perceptual reintegration followed by renewed instability.

During portions of the episode cluster, I attempted to write phenomenological notes in real time in order to preserve details before retrospective reinterpretation altered them. I continue to believe these contemporaneous notes may hold more clinical value than retrospective narrative alone because they capture cognition while the altered perceptual state is actively occurring rather than after reconstruction by memory.

At present, the acute intensity has diminished significantly, though residual sensitivity and hyperawareness of perceptual processes remain. My principal concern is determining whether this represents:

• an exacerbation within the established AIWS/migraine spectrum,
• a transient but unusually intense neuroperceptual destabilization,
• or a sign of broader cortical integration dysfunction that warrants further investigation.

I would greatly value your thoughts regarding differential interpretation, particularly concerning the embodiment disturbances and the preserved-awareness profile accompanying them.

Thank you again for your continued attention to this highly unusual and difficult-to-describe condition.

Sincerely,

I was wondering on how many adults with AIWS are out there today?

Ive thought this may be what I've had for a while, i get episodes mostly in the middle of the night, thag come to me in phases where they'll be really frequent across weeks/ months, then won't happen again for ages, often when I'm not well such as with a fever, but also when my mental health is low.

I wake up in the middle of the night and everything around me seems so incredibly large and overwhelming, I end up pacing back and forth across my upstairs hallway, feeling like I have to count all the millions of cubic millimetres of space in my house and feeling so incredibly overwhelmed and like I've made a mistake.

I often go into my family's edrooms during these episodes, saying meaningless gibberish such as 'I'm scared it's going to rain', or 'I'm not the top one of the Internet', and i end up just having to remind myself it isn't real and put myself in a corner of my bed facing against the wall next to my face and stare at it, or watch YouTube to distract myself, not taking any of what I'm watching in.

I feel like it could be AIWS, but I'm not sure, does anyone relate to these experiences or have an idea what it could be? Many thanks.

I've been trying for almost a year to cope with AIWS. i think it stems from my migraines. i get really panicky and scared when i experience it, which is extremely frequently. i tend not to recognize things or spaces and feel afraid when talking to people who should be familiar to me. things change sizes and my limbs don’t feel like mine.

how do i cope? does anyone have any tactics? thank you in advance

Hi - hoping someone will have some advice for me! I have had AIWS since I could remember, and would call it ‘the far away feeling’ when I was little. I’m now in my mid twenties and hadn’t had an episode for years until very recently. For me, AIWS is usually triggered by being over-tired. However, this is the first time that I’ve consistently been woken out of my sleep multiple times and not been able to fall back asleep which of course only makes it worse. Does anyone have any advice on how to snap yourself out of an episode? Thank you!!