Global Symptoms List and Personal Experience
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Jmac
Sep 27, 2017, 9:21:49 PM9/27/17
to Alice in Wonderland Syndrome
I cannot believe I am not alone in this!
This has been the hardest thing for me to ever describe. My dad and me and at least one of my siblings all get it. I made a list at the bottom of this post for people searching for answers and wondering if what they experience is AIWS. It's very diverse it sounds like so I made this list from the posts I read here and elsewhere online.
My dad and I always called them "hard-soft" or "big-little" dreams. We called them dreams even though we were most of the time awake during them, but I have also had dreams in which the sensations are my AIWS.
Recently I got a totally new symptom (for me). Usually I get what the scientists calls "somesthetic" symptoms...the ones that are not really visual but otherwise perceived. I feel bigger or smaller, I feel totally crowded or completely like a floating speck of dest in a frightening vastness. I feel the hard-soft, I feel the terror and panic, with absolute serenity. I feel chaos and overwhelming at the same time I feel total quietude and peace...an eerie peace.
BUT for the first time ever, a few nights ago, I was laying in bed (where more than half of my AIWS episodes occur), and started to feel the crowded-vastness.... I immediately recognized it and I grabbed my phone to distract myself.. BUT when I grabbed my phone... All of the sudden my phone looked GIGANTIC... it was so big and I was so tiny I could fit inside the screen. I was tripping my head off. And at the same time, it seemed like my arm was 8 feet long and my phone was super far away from my face and tiny. I was freaking out, and I told my therapist about it the next day. I have never attempted to tell any medical professionals about these symptoms because I always thought I was just a COMPLETE WEIRDO (well, I am actually).
My therapist said they actually thought they knew what I was talking about- that they had experienced the symptoms for themselves and they think they had heard of it. The other night my therapist then sent me a link to a study on AIWS and at first I was skeptical... but then I read some of the experiences here, and some other studies, and it is unmistakable.
I think I have an odd case because my experiences are usually much more than visual and not visual at all. I also haven't seen many people talk about the feelings of simultaneity I get. I get these feelings that TWO INSANE EXTREMES are happening at the SAME TIME and it's super overwhelming and anxiety-producing. However I have found others like me who, despite the fear it causes, are really interested and curious and fascinated when it happens, so they try to be mindful of it. I have always found it very fascinating and still do. Seeing that it has a name and small community of experiencers and sympathizers and experts has gotten me even more interested in it.
To anyone who thinks they might have AIWS but aren't sure, here is a list of the many different types of symptoms I saw in my quick researching. Most everyone seems to experience a certain few very strongly, and some others peripherally, and some others not at all. Me for instance, I have had AIWS for almost 30 years, and only for the first time had any visual sensation of it just this week.
Feeling insanely big
Feeling ridiculously small
Seeing yourself or parts of yourself as insanely big or small, such as hands, feet, head, chest, torso, arms, legs, tongue or mouth, or whole body.
Terror and peace
Things around you look impossibly tiny or dauntingly huge
Things around you look very far away or preposterously close in to your face
The movement of things you are looking at is frighteningly or eerily or impossibly slow or fast
Your own movements feel or look TOO slow or TOO fast
This general sense of "too-much"ness or "too-lacking"ness
Overwhelming, crowded, cluttered feelings .. or
Extreme emptiness, spaciousness, or vastness
The sense that something terrible is in the room with you or is watching you, often accompanied by varying degrees of fear, and often somehow "connected" to the other feelings of AIWS
Extreme fear or anxiety with an almost simultaneous (and yet also terrifying) calm or stillness
The feeling of TIME being slowed down or sped up
HEARING things as though they are suddenly very far away, or in an echo chamber, or "behind glass" as I like to call it
Hearing things as though they are almost painfully loud or overwhelmingly loud
Things which are ordinarily soft feel hard, brittle, rough, dense, solid
Hard things seem malleable, soft, moveable, weakened, squishy, mushy, or otherwise not hard
Things which are usually sturdy feel suddenly weak and shaky, unstable, unsupported, collapsible
Things which may be quite light and feathery suddenly feel heavy and immovable, impossibly strong or sturdy
Feel free to add to this list below.
We are all like Alice and we didn't have to take any drugs to experience it! Imagine that! (OR don't, because that can trigger episodes, which for many are NOT enjoyable at ALL).
I am going to add more accounts of my own symptoms and experiences to this thread later just for the benefit of other searchers and researchers (well, and myself, helps to get it off my chest). In particular I need to add more about texture and synaesthesia.
Researchers please feel free to contact me about participating. I really support advancing the study of this syndrome. I want to know more about it myself.
Lúthien Merilin
Sep 28, 2017, 5:45:54 AM9/28/17
to alice-in-wonde...@googlegroups.com
Hi Jmac,
here are my answers: I’ll reply in-line below.
Note that I’ve been symptom-free for 25+ years now, since I was 18.
> My dad and I always called them "hard-soft" or "big-little" dreams. We called them dreams even though we were most of the time awake during them, but I have also had dreams in which the sensations are my AIWS.
That’s interesting: my brother and I (who both had it), also always referred to it in terms of those contradictory juxtapositions: Thick & Thin, Large & Small. However, I have never associated them with dreams, nor do I recall any dream featuring AIWS-like perceptions.
> Recently I got a totally new symptom (for me). Usually I get what the scientists calls "somesthetic" symptoms...the ones that are not really visual but otherwise perceived.
Nice to know there’s a word for it!
The ‘somesthetic’ has always been part of my AIWS episodes: they always come first, and are the last to go. During the last series of episodes, that happened during the final exams on high school, they followed a very strict pattern: it would start when I was in bed with the lights out, with only that feeling. If I turned on the lights at that stage, the feeling disappeared - temporarily. It grew stronger and eventually I could not make it go away by turning the lights on any more. At that point the whole thing was also visual: I would see the window in the slanted roof above my head, but could no longer sense its distance nor size. This would then peak for 5 minutes or so, and then the whole thing reversed. By then the episodes lasted only 15 minutes or so (the ones I had as a younger child were longer).
While these episodes of course terrified me as a young girl, over time I got somewhat used to them and developed some sort of theory: it was as if I temporarily lost my sense of how my visual sense related to what I knew about the outside world - as if I looked at the world for the very first time, not knowing how perceived size related to real size. It all felt very ‘alien’.
But of course, that cannot be the whole story, as there was also this bodily sensation. And it did not limit itself to just size; there was also this weird opposition between ‘heavy’ and ‘light’ - well, just about anything. One particular mental image was to hold a tiny speck of dust between my thumb and index finger, that was at the same time immensely massive.
I also vaguely recognise what I read other people say about a distinct ‘graininess’ of everything.
It all seems to be connected to the sense of proportions, in any case.
> (..) I feel totally crowded or completely like a floating speck of dest in a frightening vastness. I feel the hard-soft, I feel the terror and panic, with absolute serenity. I feel chaos and overwhelming at the same time I feel total quietude and peace...an eerie peace.
I don’t recognise all of these, though on one occasion when I had fever because of a flu, I had a sort of dream in which my father was talking to me in a heated and angry voice, while at the same time it was completely silent. But this never happend during AIWS episodes.
> Feeling insanely big
> Feeling ridiculously small
yep
> Seeing yourself or parts of yourself as insanely big or small, such as hands, feet, head, chest, torso, arms, legs, tongue or mouth, or whole body.
this is hard to confirm or deny. I cannot really say that I saw their size distorted - as in the example I described above of the window in my bedroom: the purely visual image I had was never changed, blown-up or shrunken, though it felt both immensely big and very far away, and very close up, almost touching my eyeballs, and tiny.
It’s as if you would take a photograph of a huge object far away, and one of a tiny model of that same thing close up - their apparent size on the picture would be similar even though everything else suggested a huge difference.
> Terror and peace
No, apart from that one dream
> Things around you look impossibly tiny or dauntingly huge
sort of - see above. Not really visually, but they feel like that, yes.
> Things around you look very far away or preposterously close in to your face
Exactly.
> The movement of things you are looking at is frighteningly or eerily or impossibly slow or fast
> Your own movements feel or look TOO slow or TOO fast
No, I have never experienced any temporal distortion.
> This general sense of "too-much"ness or "too-lacking”ness
Somewhat.
> Overwhelming, crowded, cluttered feelings .. or
> Extreme emptiness, spaciousness, or vastness
Yes, underlying the whole thing, I guess.
> The sense that something terrible is in the room with you or is watching you, often accompanied by varying degrees of fear, and often somehow "connected" to the other feelings of AIWS
No, not really. I still remember the first episode when I was about six, and it was the general eeriness that freaked me out, and the fact that my mother (who had come because I was crying) looked like a giant.
I never had any "pursuing” dreams, or worried about monsters under my bed either. I did have some nightmares like everyone, but they were much weirder and more abstract - like being terrified by the word “carousel” in connection with dreaming about the eye-measurement equipment in my uncle’s opticion's shop, or of opening a book and suddenly remembering (in the dream) that this is a book that will drive me nuts if I read on.
> Extreme fear or anxiety with an almost simultaneous (and yet also terrifying) calm or stillness
no
> The feeling of TIME being slowed down or sped up
no
> HEARING things as though they are suddenly very far away, or in an echo chamber, or "behind glass" as I like to call it
no
> Hearing things as though they are almost painfully loud or overwhelmingly loud
only in that one dream
> Things which are ordinarily soft feel hard, brittle, rough, dense, solid
> Hard things seem malleable, soft, moveable, weakened, squishy, mushy, or otherwise not hard
yes!
> Things which are usually sturdy feel suddenly weak and shaky, unstable, unsupported, collapsible
> Things which may be quite light and feathery suddenly feel heavy and immovable, impossibly strong or sturdy
yes!
Other things I remember:
- the sensation that my feet were directly under my chin (and, yes, at the same time they were 300 km away)
- the sensation of being stretched very long and very thin, like “spaghettification” (an actually existing term in astrophysics, describing the effects if falling into a black hole - don’t look it up if you are prone to have attacks triggered by external stimuli).
I also remember that my brother once woke up from a feverish dream while we were on holiday (also just a childhood flu or whatever), and because we were then in the same room, I had to calm him down because he was freaked out by an extremely weird dream in which he was somewhere out in space, being made to ride his bicycle in circles and he couldn’t find his way back home. He also talked about that he had no idea of proportion any more, because in that dream everything was measured in a unit called a “marsmed”, and he did not know how big that was.
I actually never asked him if he still has episodes. I should do that.
All the best!
Lúthien
the Netherlands
here are my answers: I’ll reply in-line below.
Note that I’ve been symptom-free for 25+ years now, since I was 18.
> My dad and I always called them "hard-soft" or "big-little" dreams. We called them dreams even though we were most of the time awake during them, but I have also had dreams in which the sensations are my AIWS.
> Recently I got a totally new symptom (for me). Usually I get what the scientists calls "somesthetic" symptoms...the ones that are not really visual but otherwise perceived.
The ‘somesthetic’ has always been part of my AIWS episodes: they always come first, and are the last to go. During the last series of episodes, that happened during the final exams on high school, they followed a very strict pattern: it would start when I was in bed with the lights out, with only that feeling. If I turned on the lights at that stage, the feeling disappeared - temporarily. It grew stronger and eventually I could not make it go away by turning the lights on any more. At that point the whole thing was also visual: I would see the window in the slanted roof above my head, but could no longer sense its distance nor size. This would then peak for 5 minutes or so, and then the whole thing reversed. By then the episodes lasted only 15 minutes or so (the ones I had as a younger child were longer).
While these episodes of course terrified me as a young girl, over time I got somewhat used to them and developed some sort of theory: it was as if I temporarily lost my sense of how my visual sense related to what I knew about the outside world - as if I looked at the world for the very first time, not knowing how perceived size related to real size. It all felt very ‘alien’.
But of course, that cannot be the whole story, as there was also this bodily sensation. And it did not limit itself to just size; there was also this weird opposition between ‘heavy’ and ‘light’ - well, just about anything. One particular mental image was to hold a tiny speck of dust between my thumb and index finger, that was at the same time immensely massive.
I also vaguely recognise what I read other people say about a distinct ‘graininess’ of everything.
It all seems to be connected to the sense of proportions, in any case.
> (..) I feel totally crowded or completely like a floating speck of dest in a frightening vastness. I feel the hard-soft, I feel the terror and panic, with absolute serenity. I feel chaos and overwhelming at the same time I feel total quietude and peace...an eerie peace.
I don’t recognise all of these, though on one occasion when I had fever because of a flu, I had a sort of dream in which my father was talking to me in a heated and angry voice, while at the same time it was completely silent. But this never happend during AIWS episodes.
> Feeling insanely big
> Feeling ridiculously small
> Seeing yourself or parts of yourself as insanely big or small, such as hands, feet, head, chest, torso, arms, legs, tongue or mouth, or whole body.
It’s as if you would take a photograph of a huge object far away, and one of a tiny model of that same thing close up - their apparent size on the picture would be similar even though everything else suggested a huge difference.
> Terror and peace
No, apart from that one dream
> Things around you look impossibly tiny or dauntingly huge
> Things around you look very far away or preposterously close in to your face
> The movement of things you are looking at is frighteningly or eerily or impossibly slow or fast
> Your own movements feel or look TOO slow or TOO fast
> This general sense of "too-much"ness or "too-lacking”ness
> Overwhelming, crowded, cluttered feelings .. or
> Extreme emptiness, spaciousness, or vastness
> The sense that something terrible is in the room with you or is watching you, often accompanied by varying degrees of fear, and often somehow "connected" to the other feelings of AIWS
I never had any "pursuing” dreams, or worried about monsters under my bed either. I did have some nightmares like everyone, but they were much weirder and more abstract - like being terrified by the word “carousel” in connection with dreaming about the eye-measurement equipment in my uncle’s opticion's shop, or of opening a book and suddenly remembering (in the dream) that this is a book that will drive me nuts if I read on.
> Extreme fear or anxiety with an almost simultaneous (and yet also terrifying) calm or stillness
> The feeling of TIME being slowed down or sped up
> HEARING things as though they are suddenly very far away, or in an echo chamber, or "behind glass" as I like to call it
> Hearing things as though they are almost painfully loud or overwhelmingly loud
> Things which are ordinarily soft feel hard, brittle, rough, dense, solid
> Hard things seem malleable, soft, moveable, weakened, squishy, mushy, or otherwise not hard
> Things which are usually sturdy feel suddenly weak and shaky, unstable, unsupported, collapsible
> Things which may be quite light and feathery suddenly feel heavy and immovable, impossibly strong or sturdy
Other things I remember:
- the sensation that my feet were directly under my chin (and, yes, at the same time they were 300 km away)
- the sensation of being stretched very long and very thin, like “spaghettification” (an actually existing term in astrophysics, describing the effects if falling into a black hole - don’t look it up if you are prone to have attacks triggered by external stimuli).
I also remember that my brother once woke up from a feverish dream while we were on holiday (also just a childhood flu or whatever), and because we were then in the same room, I had to calm him down because he was freaked out by an extremely weird dream in which he was somewhere out in space, being made to ride his bicycle in circles and he couldn’t find his way back home. He also talked about that he had no idea of proportion any more, because in that dream everything was measured in a unit called a “marsmed”, and he did not know how big that was.
I actually never asked him if he still has episodes. I should do that.
All the best!
Lúthien
the Netherlands
Alison R
Sep 28, 2017, 6:27:28 AM9/28/17
to Alice in Wonderland Syndrome
Really good post Jmac. I absolutely get the simultaneous extremes thing, the sense of fast/slow motion and the hard/soft sensation. See my post on this group from 1/27/12, which echoes a lot of what you say here!
Agnieszka Szymańska
Feb 23, 2018, 9:11:46 AM2/23/18
to Alice in Wonderland Syndrome
Agnieszka Szymańska
Feb 23, 2018, 9:15:36 AM2/23/18
to Alice in Wonderland Syndrome
Thank you for this post.
I love it and makes me feel safaer. We are not insaine :)
My son also as a syndrom , tells me he can hear things which are far away.
He was joinking he is like a supermen and can hear people far away talking
What a relief we are not alone :)
Alll the best
Aga and son Patrik
Jor Barrie
Feb 23, 2018, 11:36:45 AM2/23/18
to alice-in-wonde...@googlegroups.com
Hi Jmac!
YES, I used to have that! Haven't seen it being referred to by others so far, as far as I'm aware!
'It' would also try to make me do things I didn't want to do; it felt like a kind of masochistic poltergeist. For me it would stop when I turned on the light (it always happened shortly after going to bed), but 'it' would try and stop me from reaching the light switch; it took a tremendous amount of willpower to get there!
To me that has always been the most terrifying aspect of AIWS, but fortunately I haven't had an episode in decades!
Thanks for sharing you experiences!
Jor.
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Darius Helm
Feb 23, 2018, 12:46:27 PM2/23/18
to alice-in-wonde...@googlegroups.com
What???? I thought that was just me, re eyes everywhere. It was by far my worst hallucination as a child. Terrifying. Everything—lamp, footboard of parents’ bed—hell, ANYTHING was a malevolent entity staring me down.
So I have to submit here my most common hallucination. Maybe it relates to AIWS too. I used to call it the Big Potato. It was a massive rock (the size of a building, it seemed to me) rolling toward me through the air. It was so heavy and inexorable. I could feel its crushing weight as it rolled toward me. Would never reach me. I think it called my name too. It became so common that I at some point stopped getting scared of it. That’s when I named it the Big Potato. My parents and sisters would say, “Oh, he’s having the Big Potato.”
Not so with those damn watchers. Always sent me into a panic.
Darius
Call Me Bronco
Nov 17, 2018, 3:20:06 PM11/17/18
to Alice in Wonderland Syndrome
I made a post on here a while ago but I'm not sure if I did it correctly or if it's here anymore so I'll write this again;
I believe my AIWS started with Mono or similar illness when I was very young (5 or 6 years old).
I've only experienced and intense episode in light two or three times. The first being when I was that young. 99% of the time it happened at night before bed (never in the morning) in darkness. It happens now only if I meditate with my eyes closed. I had it now and then as a child and it eventually went away. It came back when I began meditating just earlier this year.
I sometimes have minor episodes where there's just a hint of it; I can barely tell what it is but I know my perception is a little off and it's inherently disturbing. This is often accompanied by a headache but not always.
An intense episode is very different. It comes on suddenly and there's a constant motion feeling. Usually it is like my body or head or mind is expanding or rising upward and everything else; the floor, my body etc is falling away. Once it was the opposite; a sinking sensation. I felt like my mind was sinking down through my body; through the floor then under the floor. Like I left my body and it was above me. Once I had a rising and sinking sensation simultaneously. The most memorable one began with a rising and smallness, then everything seemed big and my mind felt like it sank onto the ground and I was near my feet (I was sitting on the floor). Then my mind moved forward and felt very far away. I was meditating and intentionally trying to keep it going (this was before I even knew this had a name or anything). It was scary but I wanted to find out what was going to happen. All I remember thinking was "where the hell am I??"
Illusion or not this literally felt like I left my body and was somewhere else. Where, I can't explain at all, it was totally unique.
Another very interesting point worth mentioning is that during this time my own thoughts felt separated from me somehow. For example I thought of an apple and an elephant (visually) and I could make these images appear in my mind as normal except they appear *behind and above me* Like I (Whatever the I is in this case??) was somehow away from my own mind. Eventually I couldn't take it anymore and I opened my eyes. Like the snap of a finger everything was normal again and I was just sitting in my room like nothing happened at all.
This was by far one of the weirdest experience of my life. I've never experienced anything like it except maybe in my dreams which changed greatly (or I took more notice of them) since I began meditating.
I've never experienced time distortions like described here; except maybe in a very minor sense, not enough to tell if it was caused by this.
I said one of the weirdest experiences because I had one other thing happen to me which I believe was a possible natural or 'normal' result of meditation. Before bed one night, I didn't seem to have AIWS but I had a brief shift in consciousness. It was in a way terrifying and even more difficult to explain than AIWS. It lasted only a moment but I felt strange for minutes afterward and had trouble sleeping and understanding it afterward. I felt bizarre and a little freighted the following day as well. It may have been what's commonly known as ego dissolution but I'm really not sure.
A few people posted that meditation can help with your symptoms.
I can agree that certain types of meditation (focusing on breath) at least for me does not induce AIWS. Idk about making it go away. Other types of meditation however (staring at a fixed point) will bring it on for me however.
Meditation is simple but isn't anything to take lightly. If you really get into meditation you should be aware that it can be a rocky path to go down. Especially if you do it often and deeply. Meditation is apparently what started this (recently) for me. Or I should say I brought it back.
I believe my AIWS started with Mono or similar illness when I was very young (5 or 6 years old).
I've only experienced and intense episode in light two or three times. The first being when I was that young. 99% of the time it happened at night before bed (never in the morning) in darkness. It happens now only if I meditate with my eyes closed. I had it now and then as a child and it eventually went away. It came back when I began meditating just earlier this year.
I sometimes have minor episodes where there's just a hint of it; I can barely tell what it is but I know my perception is a little off and it's inherently disturbing. This is often accompanied by a headache but not always.
An intense episode is very different. It comes on suddenly and there's a constant motion feeling. Usually it is like my body or head or mind is expanding or rising upward and everything else; the floor, my body etc is falling away. Once it was the opposite; a sinking sensation. I felt like my mind was sinking down through my body; through the floor then under the floor. Like I left my body and it was above me. Once I had a rising and sinking sensation simultaneously. The most memorable one began with a rising and smallness, then everything seemed big and my mind felt like it sank onto the ground and I was near my feet (I was sitting on the floor). Then my mind moved forward and felt very far away. I was meditating and intentionally trying to keep it going (this was before I even knew this had a name or anything). It was scary but I wanted to find out what was going to happen. All I remember thinking was "where the hell am I??"
Illusion or not this literally felt like I left my body and was somewhere else. Where, I can't explain at all, it was totally unique.
Another very interesting point worth mentioning is that during this time my own thoughts felt separated from me somehow. For example I thought of an apple and an elephant (visually) and I could make these images appear in my mind as normal except they appear *behind and above me* Like I (Whatever the I is in this case??) was somehow away from my own mind. Eventually I couldn't take it anymore and I opened my eyes. Like the snap of a finger everything was normal again and I was just sitting in my room like nothing happened at all.
This was by far one of the weirdest experience of my life. I've never experienced anything like it except maybe in my dreams which changed greatly (or I took more notice of them) since I began meditating.
I've never experienced time distortions like described here; except maybe in a very minor sense, not enough to tell if it was caused by this.
I said one of the weirdest experiences because I had one other thing happen to me which I believe was a possible natural or 'normal' result of meditation. Before bed one night, I didn't seem to have AIWS but I had a brief shift in consciousness. It was in a way terrifying and even more difficult to explain than AIWS. It lasted only a moment but I felt strange for minutes afterward and had trouble sleeping and understanding it afterward. I felt bizarre and a little freighted the following day as well. It may have been what's commonly known as ego dissolution but I'm really not sure.
A few people posted that meditation can help with your symptoms.
I can agree that certain types of meditation (focusing on breath) at least for me does not induce AIWS. Idk about making it go away. Other types of meditation however (staring at a fixed point) will bring it on for me however.
Meditation is simple but isn't anything to take lightly. If you really get into meditation you should be aware that it can be a rocky path to go down. Especially if you do it often and deeply. Meditation is apparently what started this (recently) for me. Or I should say I brought it back.
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