Through the Looking Glass (AIWS & Migraines)

When I joined this community, I was excited, thinking I would learn a little bit more about the rare, migraine related syndrome I was diagnosed with.

Seems it was more rare than I thought.

Welcome through the rabbit hole, and into the strange, disorienting, and sometimes annoying world of Alice in Wonderland Syndrome, or AIWS. There is little literature and even less research done on this odd type of migraine manifestation, and only about 300 confirmed diagnoses in the country. I’ve read it all, trying to understand a bit more about what my migraine specialist calls “cool” (he’s never had an AIWS patient before), but here is what I’ve gathered.

AIWS was coined by English psychiatrist John Todd in Canadian Medical Association Journal in 1955. It is believed that Lewis Carroll, the author of Alice in Wonderland and a well-known migraine lifer suffered from this condition, and the strange symptoms associated with it helped to inspire the children’s classic. There is some research that suggests it may be a form of frontal lobe epilepsy, and others that categorize it like an aura. It usually first starts, and sometimes ends in early childhood, can be the caused by prolonged high fever in a child, (i.e. Scarlett fever, pneumonia) and is almost always accompanied by adult onset migraines.

So what is it?

It is like living in a funhouse. It’s like the Pink Floyd song, “Comfortably Numb”. It’s like a really bad acid trip. It’s like the book. It’s difficult to describe, and people think you’re off your rocker when you do. This is the conversation I had with my neurologist’s CRNA, who had no idea what it was:

“I see things that aren’t real. The room will get very big, and I will stay small. Sometimes when I watch TV, the wall just…recedes. People’s hands and heads look big. My own hands sometimes look large. It can feel like I’m floating and turning upside down when I’m not moving.”

“Um….do these people ever talk to you?”
“Yes. They’re real people.”
“Do you hear voices?”
“Only when they talk to me.”
“Do you have other hallucinations?”
“I’m not hallucinating.”
“But you see things that aren’t real.”
“Yes, but I know they aren’t real.”
“Um…I’m going to go get the doctor…”

This may seem comical, but this was the fourth such conversation I’ve had, two with neurologists, and one with a shrink. It’s endlessly frustrating when you know you aren’t crazy, but everyone else thinks you are. AIWS is, at its purest form, a misfire. A disconnect between your brain and eyes. You know the room didn’t get bigger, but you see it. You know you can’t float upside down, but you see it. You are well aware that your husband did not suddenly turn into a talking bobble head doll, but that sure is what he looks like. It doesn’t hurt; at the worst, it’s extremely uncomfortable. It happens mostly at night, mostly when overtired, although I have had some episodes in broad daylight, especially when looking at those “hidden pictures”. It’s distortion, altered perception.

I’ve suffered from severe migraines for 15 years now, lasting up to 11 months. Yes, 11 months. There is no cure for migraines, and there is no cure for AIWS, only management. My newest neurologist (the “cool” one) prescribed me Amitryptiline. It is doing a fantastic job preventing the migraines, but seems to be exacerbating the AIWS. To tell the truth, I would suffer an episode a day to have some relief.

That is my strange story. One of a little girl who went through the looking glass, into the rabbit hole, and never came out again. But without the migraines, Wonderland isn’t so bad after all.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (29)
  • Pendragon
    5 years ago

    I just read this article and suddenly, an experience I’ve had for many years seems to make a bit more sense. For years, out of nowhere, I’d be sitting in school when my teacher’s heads would just start to shrink, and look further and further away, but their bodies remained normal looking. I had never thought of this as a symptom of anything, I just thought my eyes were going weird. Thanks for sharing your story.

  • rory labetti
    5 years ago

    After reading this article I was relieved,I also never told anyone about the Alice in Wonderland symptoms.Thought I was crazy. Thanks for setting the record straight.

  • Brian in TN
    5 years ago

    My AIWS episodes stopped years ago, roughly 4 decades before I learned what they were. The one thing that reminds me of these episodes is the ubiquitous rack focus of the “B” grade movie where the subject in the center of the screen changes very little but the background zooms in or out while the camera moves. I remember through school feeling like my head was expanding and rising and the teacher would fade back as if I were rapidly moving backward. I could approximate the feeling when stoned by telling myself I was standing on the bottom of the Earth barely holding on and ready to fly off into space! Guess I’m glad I never got called on to go to the board during one of these, not sure at all I could have functioned that well. I do remember having to be very careful when I was walking. Funny how at 53 I’m still finding out things that happened 15 years before I was diagnosed with migraines, due to episodes of partial blindness, that were clear indicators, like walking out into bright sunlight and having to pry my eyelids up to see. When I was diagnosed with ocular migraines and described the symptoms to my family my brother, father and mother all said, “Oh yeah, I get those every so often!” None of us knew about the others symptoms.

  • anothermortal
    5 years ago

    As I child I experienced this as a child too, but had no idea what the episodes were actually called. The only experiences I can find are about things growing or shrinking, but my journeys down the rabbit hole were always quite different. I’m on the other end of the AIWS spectrum. I dealt with the time perception part of AIWS growing up. When I say “time perception”, what I mean is: everything around me (except me) would be in slo-mo (sometimes for days at a time) & would feel as if I was moving at a lightning fast pace. I also had the experience of everything around me moving extremely fast and just I would be struggling to move through the thick, gelatinous-like air at an exceptionally slow pace. I hadn’t had an episode in over 10 years until last week & I was so terrified that I almost had a panic attack. I have never told anyone about these episodes except for my mother as a child. I’m seeing a neurologist soon for my chronic every day migraines & now the AIWS.

  • Lisa Zimmerman
    6 years ago

    I did not realize how rare this type of migraine is! I mentioned this in 2002 when I was pregnant with my 3rd child, by which time I’d had AIWS for years, and my primary care dr offhandedly said “it’s probably just AIWS- migraine” as if everyone knew about it. He said nothing more, didn’t ask if my migraines were being managed (I was a new patient), etc. I would mention my headaches & migraines over the years but it wasn’t until this year that I found a new PCP, neurologist, this website, and how rare my migraines are. AND that I suffer from chronic migraine. You mean 20 headaches a month, and multiple 2-3 day migraines is a huge problem? Vertigo 24/7 that causes falls is a problem? AIWS is rare? Good to know. At least I have drs taking me seriously and treating me! Yay!

  • CathyC
    6 years ago

    I too am following up as I’ve had a few more of these recently. What preceeded it was a odor that I can best describe as “playdoh” and as it’s occurring I instantly recognize this is what’s going on. I had one of these a few days ago in the middle of the night where when I closed my eyes I was seeing large geometric shapes that were uncomfortable for my brain. I opened my eyes thinking I was dreaming, nope I was awake, closed them again and the shapes reappeared. They did change or rotate, not sure which. I’d been in the midst of many many migraines in a row and a real whopper of a one was brewing, so that could have brought this on. I was grateful when it was over as it did not feel good at all. So strange.

  • Nancy Harris Bonk moderator
    6 years ago

    Hi Cathy, thanks for letting us know what’s been happening with you. It is always good to hear the good, bad and ugly!!

    Do you have any idea what may be triggering these frequent attacks? I’ve been overdoing and am having a rough time right now, so I know this trigger – seems I’m too stubborn (or stupid!) to stop it!

  • Sarah Blubaugh Morgan
    7 years ago

    As a follow up to this article, I recently was placed on ambien for sleep issues, and it’s made the AIWS so bad that it happens during the day. I wonder if anyone else has seen a corelation.

  • Melissa Dayes
    7 years ago

    This is was my childhood, when ever I got sick I would hallucinate, see my hands differently, my mom’s head differently, and it scared me. I was told that it was AIWS and that there wasn’t much I could do about it. When I was 8 my Father told me that the same thing had happened to him and that the symptoms faded when he got older. Well my symptoms are much less frequent and not as intense. I never really looked to far into it until tonight watching HOUSE, they mentioned it and I was a little shocked, so I goggled it and found this!

  • Mary T Bassily
    7 years ago

    hey Mel that will be cool if you look at something and you see it different and it will stay that way ! so like I would want you to see me smaller and I become smaller or you look at my bank account and you see it bigger and it will stay BIGGER yeah

  • Tracey Wilson
    8 years ago

    LMAO – This is a great post – I have experienced a degree of this – I get in it the form of body imagine – only happens from time to time and only when laying down – my hands and face (or bits of them) can feel up to a metre in size at times – its like I am in a magic mirror at a fair – although odd – its does not hurt and I find it quite amusing.

  • Cathy Ashenfelter Christensen
    8 years ago

    I’m sure every hair on my body just stood up! I’m 51 and have always been headache prone, diagnosed with migraines 4yrs ago. These AIWS episodes, from what I can remember I was early grade school when they started, usually they woke me up, yet never scared me oddly, very relaxing, dreamlike, yet I could would move to try to change or stop it. I recall parts of the room alternating in size and then I am in someplace else I’ve been with really short ceilings with lots of doors. I too don’t recall when it stopped, it have odd dreams or whatever with migraines. Some of which feel really REAL. It happened many times, I didn’t tell anyone, I was the “dramatic/creative one”, no one would have believed me. Now that my migraines a lot of times come in the early hours of the morning, this all clicks now! So interesting. I have a wonderful Neurologist and Nurse practitioner (Headache Clinic Background) that listen, believe what I’m saying and ask my opinion too. Thank you for sharing this.

  • Sarah Blubaugh Morgan
    7 years ago

    The same thing happened to me when I first read about it. I wasnt diagnosed until I was 30, and to be honest I though it was a type of vertigo until I read an article (in “The Body Odd” if that’s not an understatement.) and just bawled for hours. the only person I had really tried to explain it to was my husband, and he just thinks I’m weird.

  • Cathy Ashenfelter Christensen
    8 years ago

    I agree. Kids can brush things off and go on easier than adults can. Thankful I never had the painful side of the migraines until adulthood.

  • Lisa Dreeszen
    8 years ago

    This is amazing,wonderful that it was not scary..

  • Georgia Slesinger
    8 years ago

    That kind of aura must be very upsetting! When I get a bad migraine, I sometimes wake up thinking I smell incense or flowers or sometimes, skunk! And I have sometimes heard sounds that weren’t there and I have had the occasional night terrors with them too. But nothing as bad as you describe! I’ve sometimes had the feeling that I’m taller…the floor seems much father away than usual; maybe that’s part of AIWS?

  • Sarah Blubaugh Morgan
    7 years ago

    It can be a part of it. The worst thing is that it manafests itself in soooo many ways, my cat was 20 feet tall the other day.

  • WitchyOne Martinez
    8 years ago

    :'(

  • Ashley Redding
    8 years ago

    I’m sitting here with my jaw to the floor! This just described my childhood. I am almost 30 now and suffer from terrible migraines. I have them somewhat under control with a few meds (down from about 12 a month to about 5), and I don’t have the AIWS (which I until this story had never heard of) now as an adult. I did however as a child and remember it very vividly! I don’t remember the age I was when AIWS stopped but I do remember my first migraine being around age 7 or 8. I never put the two things together. I have never spoken to my neurologist about what happened to me as a child either simply because I just never thought the two things to be related! I thank you so much for sharing! BTW, “Alice in Wonderland” and “Comfortably Numb” have always been favorites of mine because they made me feel like someone knew how I was feeling!

  • Jane O'Neill
    5 years ago

    Wow, you just described me. When I was a child I often had periods for about 1-2 yrs where everything felt huge & was in slow motion. My mom would comfort me & tell me it was just a dream. But I was wide awake & couldn’t understand what this was. Very frightening. It would end as fast as it appeared. I too went on to develop migraines @ age 8, that still plague me as a 64 yr old adult today. Never connected the two till I read this! Gee, it really has a name & other people experienced this. I just thought I was crazy!

  • Sarah Blubaugh Morgan
    7 years ago

    I was the same way. I tried to tell my mother about the room “getting big” once and she just thought I was being dramatic. It was nice to finally learn I was not insane.

  • Gail Walker Edwards
    8 years ago

    sure hope you can be totally rid of them!!

  • Bridget Marie Gilpin-James
    8 years ago

    as a little girl I would get this sensation of some force that was spinning and consuming the energy and things around it. this usually happened when I was very tired, but was real to me… I didn’t suffer from migraines until adulthood, but as the migraines started, the spinning force subsided until the last few years…I now get both, it is very disorienting and difficult to explain or talk to anyone about because they think you are crazy.

  • Sarah Blubaugh Morgan
    7 years ago

    You have to find someone who will listen. I literally went through four neuroligists, (one of whom accused me of making up symptoms, which was awesme.) before I found my current one. I dont’ know where you are, but a major hospital (I go to WVU) like hopkins or one of the mayo clinics would be yor best bet.

  • Charles Andrew Lininger
    8 years ago

    Yes, unusual presentation for migraine, I can only empathize. I have not encountered such symptoms although in my acupuncture practice I have treated silent migraine–just aura–with the same cessation of symptom as with the severe pain migraine. I would venture a guess that along with the migraine/AWIS you may experience cold feet. Energetically this is the stimulus to make migraine possible.

  • Becky Ables
    8 years ago

    Wow, I have never heard of this type of migraine! I’m so sorry you have to suffer with this and there isn’t much information out there to help. Amitryptiline has really saved me from constant migraines. I would have them every day if not for that medication. I’m glad you have a cool neurologist. That is the one thing I would beg migraine suffers to get, a GREAT neurologist. It’s worth looking until you find the one that LISTENS and you feel comfortable with. I hope you find some relief soon!

  • Bridget Marie Gilpin-James
    8 years ago

    I am only able to take the amitriptyline during an attack onset due to the swelling it causes in my hands and the weight gain it causes. I just want to be able to go somewhere and not worry about my plan if an attack happens when I’m alone away from home

  • Nancy Phipps
    8 years ago

    I’m sorry you have such issues, but glad mine (and also glad that they aren’t AIWS) don’t last THAT long. I hope the Amitryptiline works for you. It really didn’t do much for me, except one of its side effect over a long period of time is weight gain. I hope you find relief!

  • Harriet Williams Berg
    8 years ago

    Bless your heart. Glad I am not experience that particular side of Migraine.

  • Poll