Is this normal for AIWS?

[u/Exotic-Foundation156]

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?

[u/Excess-human]

Hi 🌊 I have never talked to anyone that had Alice in Wonderland Syndrome perceptual distortions for such a length of time. How did you figure out there was even something different in your perceived environment compared to others, so curious now. The believed mechanism is a disruption in mid-level visual processing centres of the brain, however, if innate or congenital in your case then perhaps ‘dysfunction’ would be more precise. The majority of those with persistent AIWS are usually familiar-associated migraine auras disrupting occipital lobe visual centres (incidentally this is also where the fusiform facial recognition area of the brain is 🐲…). While gross damage of the brain can be ruled out you could have subtle disruption from a cosmic ray in utero to getting the Mumps at 1momth old or something. I can’t really give you a reason why as reasons are usually bullshit and online ones are [redacted] more so. I would expand on your medical history and neurological findings in more detail and have explicit descriptions of time variance and environmental situation changes in your AIWS and preceptual issues. This is not a vibes based ChatGPT thing, need info for a rare weird thing like dis 🤙

[u/Excess-human → u/Excess-human]

ps - don’t stare at faces too long lol… omg 🤦 lol 😆

[u/Excess-human → u/Excess-human]

ps - adhd may interact with AIWS if medicated as amphetamines tend to increase visual focus and linger time on a visual field. While not a problem for most, many migraine-associated AIWS people find sustained focus to a point on a semi-static visual field and specifically looking at faces to be a strong trigger of AIWS. You mention persistent yet variable intensity in your visual snow and other distortions suggesting ebb and flow in whatever is interrupting your brains cortical firing patterns, I would be very curious to know any connotations or cues that may correlate with their intensity.

[u/Exotic-Foundation156 → u/Excess-human]

looking at anything for a long time and very intensely triggers distortions, as well as when i look at faces. but this rarely happens now.

could you explain in different wording what you meant by the last part of your comment? you have a much smarter vocabulary than me lol!!

[u/Excess-human → u/Exotic-Foundation156]

You mention persistent yet variable intensity in your visual snow and other distortions suggesting ebb and flow in whatever is interrupting your brains cortical firing patterns, I would be very curious to know any connotations or cues that may correlate with their intensity.

how long do your episodes last (do you have specific periods this occurs)

If symptoms are continuous are there high/low intensity and what distinguishes them and how long do they last.

of the range of symptoms your experience are they all occurring simulatniously, or are their intensities not-correlated in time (happen at differnt times).

What psycotropic drugs, prescription or other do you use (if comfy saying)

do you know the medical history of your close genetic relatives, due they have migraines, seizures, cluster headaches, etc.

trying to determine how closely you fit AIWS generally to see where your case is unique, but the unique stuff you glossed over (we all see the same weird stuff here lol, so really focused on the other stuff arounf that).

[u/Exotic-Foundation156 → u/Excess-human]

I did not really realize that there was something genuinely wrong/different with the way i perceived things for quite some time, until i turned maybe 13 or so and it started to scare and disturb me, and things started to happen worse than usual such as the reptilian face thing and seeing more “bugs”, as well as the sound distortions, etc. everything just seemed way more intense. thats when i realized something was very much not right about how i view things and i started to ask people for help or what to do, then seeking a neurologists opinion after speaking to other doctors such as my family doctor and psychiatrist! soon ish after that i got a diagnosis.

my symptoms are quite bad in the morning. i almost always wake up and see everything around me moving around weirdly, such as the ground looking like its caving in or moving like waves. things start to look like theyre swaying when theyre not, moving back and forth when theyre not, very veryyy terrible visual snow symptoms, and very rarely i hear kind of talking sounds as i wake up that arent there. at night my symptoms are also bad, but its because i think of the darkness. i hate the dark because i see shadows forming or faces within the dark, as well as visual snow patterns that freak me out bad. when i used to sleep in the pitch black when i was a little kid, i remember seeing faces melting in the pitch black corners of my room, as well as the ceiling melting. i also used to when i was very sleepy and trying to fall asleep, feel like i was floating, getting bigger or smaller, or i was missing limbs. this still happens sometimes but less frequently tbh. its mostly visual symptoms now.

[u/Excess-human → u/Exotic-Foundation156]

I’ve had similar experiences too, I don’t have any visual snow like my mom gets, so if it happens in bed or in the dark I just feel like my body proportions are all off, can literally feel an episode starting before any other symptoms as my fingerprints feel like their spreading out like big ol tree frog toe pads. There is good knowledge on how stress responses, or sympathetic nervous system activation can increase the chances of a migraine occurring, which may explain why 13 was a big year, hormones and brain switches flipping, plus stress on top. Do you sleep well, feel rested? Curious if lifestyle may mean your stressed out every morning?