Through the Looking Glass (Alice in Wonderland Syndrome & Migraines)

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.

Anyone else have this?
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March 17th, 2011 - Posted by pixxistiks

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.

See Also
Health history & Migraines
Aura
Migraine Diagnosis

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.

http://migraine.com/migraine-stories/leaving-with-migraines-and-alice-in-wonderland-syndrome/

I am pretty sure this is what is happening to me. All my life i have had odd perceptual experiances some of which I have thought might have raised a few eyebrows if I had shared them with people the difference is that like this person I always knew what I was experiancing wasn't real, that it was an illusion of some kind. I just learned to live with it.

Now I am on Topiramate and it seems to be making these experiances more common and adding a few more to the mix expecially the visual trailers which are can be disoriantating when they are strong.

Anyway I am sure what I have is just this a sort of complicated migraine aura, I will discuss it with the neurologist when I go back in a couple of months. I accept that it is probably harmless and I will need to learn to live with it as long as it is not serious then I am fine with that I just hope they don't dismiss me as some neurotic!

It's rare hunny - but very real......... I will be interested to see if they have heard of it out there....... do you get the room or body version? And how long does it last for you?

As I said above I only get this in the body form - ie bits of me can feel huge.... It does not last long and I am always assumed by it...... Its thought that this is what the author of Alice in Wonderland had as part of his migraines - and what gave him the idea for the book - hence the name