Sunday, October 16, 2011

Alice in Wonderland Syndrome

Our daughter has Alice in Wonderland Syndrome (AIWS) -- an actual, disorienting neurological condition that affects human perception, often associated with migraines. It can effect some or all of a person's senses, usually manifesting with visions just before the onset of a migraine.

A few times, she's seen
classmates sink into the floor.
But our daughter has them every single day -- most are not severe and she's learned to just deal with them and not even call attention to herself. Here are some of the things she's experienced almost every day:

  • If she holds a piece of paper with text and images just right, she can see the space between the paper and text.
  • Reading books -- she's an avid reader, but usually all letters look like they're lit from behind.
  • If she looks at a busy page just right, the words come off and are in 3D in front of her. Bubble sheets for standardized tests? Forget about it!
  • Just about every day she'll see everything in a color, she can see everything clearly, but everything will be green, or purple.
  • Occasionally she can see auras around people (this may be due to her being a witch though).
  • Sometimes, outdoors, shadows will have no gray values and look solid black.
  • Lightning's been known to dance around the upper part of her bedroom walls.
  • Once in a while, a person's head will disappear, or, look really, really big.
  • In the classroom the desks around her will look like they're miles away from her.
  • From her bunk bed, sometimes the floor of the room looks far away, like she said, "...like she's at the top of the Empire State Building looking down."
  • Once in a great while, voices are delayed as they come out of a person's mouth -- like a badly dubbed movie.
  • People can look like they're vibrating.
  • At the optometrists office, the computer with the eye chart disappeared and she could only see the wall behind it.
  • She can't write well. At all. Her handwriting looks like a third-grader's. She's in eighth grade.
  • She can't write flush left. Even when she's trying, each line is a little more to the right, causing hand-written papers to look like an inverted triangle.
Once, the hallway went upside down
and she "fell" to the ceiling.
But once in a while, she gets a doozy. Some of the bigger "visual effects," as we call them, signal an oncoming migraine, or are very upsetting, like:
  • Her own personal earthquake. Found her, the first time this happened, holding on to the ladder of her bunk bed for dear life, crying in a panic. When this happens, she can barely walk, because, well, there's an earthquake going on and the ground is moving.
  • Once, she saw completely through a wall -- and could see the room and furniture on the other side. Her mind "fills in" what she cannot physically see.
  • In gym class once, everyone was sinking into the floor, including her own feet and legs.
  • Another time, she turned around and there was a black wall in front of her, in the middle of the kitchen! It took all her mental strength to realize it wasn't there and force herself to walk through it.
  • When she's got a migraine, when she's laying on her bed, she can see her reflection in the ceiling above her. There's no mirror there. It's a white painted ceiling.
  • Sometimes the ceiling looks like it is just at the end of her nose when she's laying down. That sets in panic. We have her wear a sleeping mask when a migraine starts.
  • Sometimes the room will close up on her and she'll feel like she's gotten really large. Or sometimes the opposite, the room gets incredibly large and she feels like the size of a mouse.
  • A couple times, when she's gotten up in the middle of the night with a migraine, on her way to our bedroom, the hallway has turned upside down, and she "falls" to the ceiling and we've found her crying on the floor.
  • Another time, she was laying in bed with a migraine and she felt very small in the bed -- like the size of a doll, sheets and blankets all around. Then, minutes later she felt huge in the bed, with arms & legs hanging off all sides.
  • Recently, in the middle of the night, while in the bathroom, the walls turned into mirrors and started closing in on her until she was very large in a very small mirrored room.
  • Recently with migraines, she hears loud ringing.
  • Another time, she knew a migraine was coming on when she could not see her reflection in the bathroom mirror.
  • She once saw herself standing in front of herself, mirrored. She kept saying to herself, "She isn't there. She isn't there."
  • And the worst one for a parent? When she's got her eyes open and can't see anything.
This has been happening since she was born -- but the migraines didn't start until about two years ago (she's now 13). The visual effects, without the migraine headache, are referred to as ocular migraines, with, fortunately, no pain. The neurologist says it's like taking hallucinogens. Most people that get migraines get some visual "occurrences" but I've never, until her, heard of such wild sightings.

We've heard all the jokes -- like LSD without the side effects! Hallucinogenics without the expense! And for the most part, we try to keep it light. When she asks if we see something that she sees that we can't see, we usually say we see it too. Even if it's purple fuzzy dots wherever there's blue sky. But the migraine-warning, scary visuals we take very seriously.

When she was a just starting school, and learning to read, it was HARD! We hired a tutor to help her reading and writing in third grade. She couldn't verbalize what she saw and we didn't know there was an underlying problem. At first we thought is was dyslexia, or some other reading disability. That was ruled out by reading specialists. We then thought it was an eye problem. One optometrist had us convinced she had extreme tunnel vision and had us doing crazy eye "exercises" for a year -- things like walking in a figure eight pattern in the basement floor while reading a sheet of Ps, Qs, Ds and Bs we held out in a stationary spot.

Sometimes she sees everything fine,
but everything's the same color.
Thank god for the good folks at the Olmsted Center for the Visually Impaired. They recognized immediately that it was not an eyesight problem but was neurological. We've been seeing a neurologist regularly for a couple years. To alleviate the migraines, she takes Maxalt, a prescription pain reliever. She also takes another low-dose prescription to help her get regular sleep. Sleeping is one of her favorite things, and something at which she excels!

From what I've found, AIWS usually affects children. And, from what I've seen online, it seems to be mostly girls. Lewis Carroll, author of Alice in Wonderland, had a niece with it, hence the name (though his own use of psychotropic drugs probably help with his writing too). It can effect all senses -- some can feel a concrete wall and it'll feel soft, like feathers, or the opposite. With our daughter, it seems to be only sight and sound.

She's got some allowances in school to make it easier on her -- she can use a keyboard for writing since her handwriting is so bad; she can take tests and put answers in the booklet, and not use bubble sheets; she can have more time on tests if she needs it; she can have questions read to her, if she wishes; and she takes tests in a separate room, alone.

Earthquakes have been known to start
in the kitchen
She's a good student, a voracious reader, a Girl Scout, got lots of friends, sells homemade glass-bead jewelry, is interested in architecture, and is the youngest volunteer (and donor) at Frank Lloyd Wright's Darwin Martin House. She is on the cleaning crew and assistants docents on tours. She's even an acolyte at our church and involved with the youth group there.

There is no cure to speak of. Many women get migraines that effect them during different hormonally-charged times in their lives -- puberty, pregnancies, and menopause. Our only hope is that it fades away with puberty, which is a possibility.

We had her start a blog Wonderland Vision to chronicle some of the things she sees or goes through (though she's not made an entry in months). My thought was that she could contribute to the information out there about this rare condition. There really isn't too much out there about it. Even the neurologist knew of it, but had never had a patient with it. So this post isn't about gardening. It's about Alice in Wonderland Syndrome -- so that others trawling the web for AIWS might stumble across this and know what others have gone through.

6 comments:

  1. Wow, thank you, Jim, that is a great explanation of what she experiences. It really is difficult to imagine what this feels like, but I understand it much better thanks to your post. M is a remarkable young lady, and she is going to be a wonderful architect someday :-)

    I'm going to go and subscribe to her blog.

    love,
    Rox.

    ReplyDelete
  2. Thank you for this info. We just returned from the Neurologist today. My daughter has just recently been diagnosed w/migraines and now, they are thinking she could possibly have AIWS. She sees and hears people talking much faster than they are... or walking by much faster than they are. Her dreams have always been above the norm w/imagination with very great detail - and much more vivid within the past year. She is 11.

    Thank you again for your story. It's helping me understand ours!

    Carrie, mom to Josie

    ReplyDelete
  3. Carrie (& Josie),
    We're so glad you left a comment! We obviously sympathize with Josie's plight. The visual effects, at least the minor ones, are nothing much to deal with, but the migraines are a bear. Two this week -- and one was for about 22 hours. Fortunately she sleeps through virtually all of it. I hope they can definitively find what Josie's issues are -- even with AIWS not having a "cure" to speak of. Always best off to know what's happening. Good luck. Glad you found us.

    ReplyDelete
  4. 11/8/11...This is my first time blogging so my apologies if this gets dup'd. Sorry to hear that your daughter has been dealing with this.
    My 7 year old son is dealing with his second, extended episode of AIWS caused by migraines, and he is currently on day 31. He does not have any headaches, but has had CONSTANT visual distortions. He has also dealt with occasional abdominal pain...leading us to believe that his migraines are manifesting in his abdomen. The Drs have run the gambit of tests (MRIs, MRAs, EEGs, X-Rays, spinal tap). He has seen the top Neurologists. He is currently on the maximum dosages of Depekote, and Diamox. Still no improvements.
    Suggestions of top Neurologists that we have used: Dr. David Rothner, from the Cleveland Clinic and Dr. Kent Kelley, who runs Evanston's Ped Neurology dept. Hopefully this helps. Good luck and let me know if you find anything that works for you.

    ReplyDelete
  5. Anonymous,
    Sounds like you're going through WAY more than we did. Never heard this associated with abdominal pain. God luck to you and your son.

    ReplyDelete
  6. Thank you!
    Mike I
    (I didnt mean to be anonymous...again, my first blog)

    ReplyDelete

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