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."

" 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.

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