Alice in Wonderland Syndrome is named after the famous Lewis Carroll novel. The condition was first noted in 1955 by John Todd, a psychiatrist. Todd named it for Carroll’s book Alice’s Adventures in Wonderland. It is believed that Lewis Carroll suffered from severe migraines and the disorder as well.
AIWS is a neurological disorder that disturbs signals that are sent from the eyes to the brain, causing a distortion in perception. People with the syndrome describe visual, auditory and tactile hallucinations and altered perceptions which can be confusing and terrifying. Typically, they may see the sizes of body parts inaccurately, and often view the sizes of other objects in a distorted way.
While facts about AIWS are still not clear, there are some common factors linked to the syndrome. Typical migraine is an important cause, as well as a trademark symptom of it. Other neurological conditions can also trigger the syndrome. It is also relatively common in children
AIWS has no proven effective treatment, but treatment programs for the probable causes are used to bring about relief.
To see and hear a patient with AIWS describe her experiences go to www.webmd.com/migraines …..
I would like to add something to your explanation of AIWS. I have suffered from hemiplegic migraines and AIWS for 4 decades and it’s more complicated than merely the eyes sending wrong signals to the brain. The migraine brain distorts perception. Even if I close my eyes during an AIWS episode, my body parts still feel distorted (i.e., hands too large, feet too small, body too tall). The things I touch with my fingers actually take on different textures and my body feels too swollen and leaden to move. The objects I see are so weirdly distorted that I prefer to keep my eyes closed. I have watched furniture quiver and the ground rise up before me. I have undergone 3 Mini Mental State Exams to eliminate the possibility of psychiatric disorder or disease and aced them all. My IQ is 140. The only other diagnosis postulated to me besides HM and AIWS was “migraine psychosis” a rather vague term. All neurological symptoms completely resolve with the passing of the migraine. The 5 neurologists I’ve seen have never found any medication (and I’ve tried many different types) that prevent the neurological symptoms, which are far more bothersome than the pain and nausea. We who suffer definitely need more answers and a few medical breakthroughs for our debilitating disorder.
There are different problems: AIWS, frequent or continuous aura, visual snow: and these are confused and conflated…..the problem is we do not know the pathophysiology for AIWS, so developing treatments is difficult; I look for meds tha shut down spreading depression and auras(lamotrigine, diamox, maybe amiloride, lasix etc..and some others)……….
Your situation must be very difficult to live with, not only the headache parts but the visual and perceptual………don’t give up trying treatments tho……..