Body image disturbances affecting its size

Fact or fiction? During the migraine aura experience of the Alice in Wonderland syndrome, a migraineur may actually have a bodily feeling of an abnormal enlargement of the head. Courtesy of MomZone.com (see here).

Following the classification of body image disturbances from Lukianowicz (1967), one category of body image disturbances that may occur as migraine aura symptoms can be labeled as disturbances of the body image affecting its size, including macrosomatognosia and microsomatognosia whereby the whole body or parts of it are felt as being abnormally large or small, respectively.

Jean Claude Marseille, Se prendre la grosse tête, 2006. "Plus grosse la tête, plus forte la migraine. [Proverbe serbe]" © 2006 Jean Claude Marseille (see here)

In a study published by Podoll and Robinson (1999), the topological distribution of macro- and microsomatognosia was identified in 18 from the 562 pictures of the Migraine Art collection. Macrosomatognosia was encountered more frequently than microsomatognosia and applied more often to single parts of the body, whereas microsomatognosia mostly affected the entire body. In partial macrosomatognosia, the head and upper extremities were the body parts most frequently involved, which paralls the extension of their representation in the sensory maps of the human brain (as visualized in Wilder G. Penfield's homunculus).

In total body macrosomatognosia, the sensation of being abnormally large affects the entire body. (See here and here)

Macrosomatognosia

The phenomenon of macrosomatognosia is exemplified by the following observations, where the body image disturbance involves the entire body:

"Sometimes I feel 'REAL TALL' -- and I'm only five - two! I'll feel weird and tall, and walk into my kitchen and feel like my head is going to hit the ceiling and like I'm towering over the countertops. It's the craziest sensation. Would other people think we're all nuts??? Before you say I am, (or think it anyway - lol) I recently read something to this effect on a headache website and would have never believed it, had it not happened to me!"

(Jaye, Newsgroups: alt.support.headaches.migraine, Subject: cool aura page, February 2, 2000)

"Wow! I never knew there were names for those sensations. I thought I was just nuts (heh heh - the jury's still out on that one). I've never said anything to the dr's because I thought it was my imagination.... Hmmmm.... It's weird.... wow it's real! I'm not that crazy (note: 'that'). Wohoooo!!!"

(sillybear, Newsgroups: alt.support.headaches.migraine, Subject: cool aura page, February 3, 2000)

"Definitely 'feel big' sometimes. Makes you think you're crazy - I didn't tell my doctor about feeling tall..."

(Jaye, Newsgroups: alt.support.headaches.migraine, Subject: Heres the symptoms... any ideas?, February 16, 2000)

The following report from a female migraine sufferer describes total body macrosomotognia (10 ft. woman) co-occurring with total body microsomatognosia whereby the body feels very small.

"Has anyone ever heard of anxiety attacks being caused by ocular migraine? And accompanied by the Alice in Wonderland syndrome?

I have suffered from anxiety attacks for more than 25 years. I get at least one a day and they can last for hours. When they first started I found a great psychiatrist and saw her four more than 4 years. We found and dealt with many problems but the anxiety continued. She thought there could be some physical cause and I had an EEG and glucose tolerance testing. The results were inconclusive so we stuck to Valium.

When I moved to the US 15 years ago, I saw a doctor and went through my usual spiel about why I wanted a script for Xanax. He said that because my anxiety symptoms did not include heart palpitations, I did not have anxiety attacks. He said I have ocular migraines. He gave me a sheet of paper that listed all of my symptoms – including the 'Alice in Wonderland' syndrome. I'd never told anyone about that one because I was sure they'd just lock me up. The AIWS causes me to feel like I'm very small or very large compared to my surroundings. This happens often when I go to bed. Sometimes, when I'm walking, I feel like I'm 10 feet tall and there's no way my feet can reach the ground, or I feel like I'm walking in a trench.

Since I moved from Los Angeles, I haven't been able to find a doctor who agrees with my old doctor.

All the antidepressants and anti-anxiety drugs I’ve tried have made my symptoms worse. Caffeine makes them worse. Nyquil is a nightmare. After surgery I preferred the pain to the painkiller.

I managed to stay employed through all of this until this year. The attacks haven't really increased in severity but I've just run out of the strength it takes to deal with them constantly."

(emgscot53, Med Help International, Mental Health Forum, Topic: Anxiety, Subject: Ocular migraine?, December 7, 2002)

In addition to migraine-related body image disturbances affecting its position in space, the following account from isotripy describes a history of recurring experiences of an alternation between macrosomatognosia and microsomatognosia of the entire body, i.e. a sort of somesthetic pulsation phenomenon.

In partial macrosomatognosia, the sensation of being abnormally large affects parts of the body, e.g. the head. Entry to art contest Migraine Images, 1992. © 2007 GlaxoSmithKline

Partial macrosomatognosia of the neck. Entry to art contest Migraine Images, 1992. © 2007 GlaxoSmithKline

In other cases, macrosomatognosia may apply only to one ore more body parts, e.g. the head, lips, tongue, neck, hands or feet.

"today i had the weirdest thing happen, i thought i was having a stroke!! my tongue got really thick feeling ... does anyone else have these type of auras? (i used to just smell things before a bad headache) or am I just the freak of nature?"

(Krista, Newsgroups: alt.support.headaches.migraine, Subject: Auras, January 5, 1999)

"i now have a three foot long neck and still have migraine."

(Paul Heslop, Newsgroups: alt.surrealism, Subject: 14 July 1789, August 7, 2003)

"The sensory aura was one I frequently had as a kid -- a feeling that my lips and tongue were hugely swollen. I would keep looking in the mirror at them. They were fine. Oliver Sacks clued me in on that one too. My headaches were not severe then, just common, and I didn't realize it was an aura. I didn't develop the classic zigzag/throbbing stuff like Julie until college. Amazing feats the human brain can perform (or is it playing tricks!)"

(Reader77, BrainTalk Communities, Subject: What's "Weird" About YOUR H/A's?, March 29, 2004)

"Also sometimes it feels as if I've got huge hands and feet with fingers and toes like inflated sausages."

(Tom, Alice in Wonderland syndrome forum, February 21, 2005)

Tom's previously cited report of macrosomatognosia as a feature of his manifold AIWS experiences is likely to represent an example of migraine aura without headache, since he noted elsewhere in his posts to the Alice in Wonderland syndrome forum:

"I suffered from bad headaches/minor migraine when I was much younger (between 10 and 14 years old) but I've not suffered since."

(Tom, Alice in Wonderland syndrome forum, February 21, 2005)

"I can't say that i feel this exactly as you describe it -- because it only affects the head, leaving the rest of the body 'normal' -- and it does not happen often.
When the affected side of my head is the right side (the most common side in my case) the region of the head enervated by the trigeminal nerve seems abnormally large -- but only when i am in pain.
This has never happened with a left-side migraine, and i cannot say why -- but it just never has.
The sensation of enlarged head-pain region is altered in a very odd way if i first take Amerge (my prescription triptan drug) and then smoke marijuana for the accompanying nausea of migraine (which is exacerbated by the Amerge, even as the pain is lessened by it). Amerge makes me slightly dizzy, spinning slowly backwards in space, like an astronaut. I do not always take Amerge and i do not always experience nausea with my migraines, so i only rarely smoke marijuana for migraine nausea -- maybe 1/10 of my migraines have nausea and half of those are bad enough to result in both the Amerge and the marijuana being used at the same time. I do not get high from the marijuana, and usually take only 1 or 2 puffs of very low THC pot, but if i have previously taken Amerge i almost immediately i experience a characteristic and replicable sensation of hollow, echoing vacancy in what i presume to be my neural pathways.
The sensation is very difficult to describe -- after all, i have smoked a psychotropic drug and have aphasia at the time -- but it is a real, sensory feeling and i can reproduce it at will with the combination of severe right-side head pain, Amerge, a mild marijuana dose, and lying down in bed with the lights out. (I have replicated it on purpose, several times, just to test it out for the sake of my own curiosity.)
What happens during these events is that the subjective 'space' occupied by my trigeminal nerves seems to expand to many times the normal volume, and it seems as if the side of my head were tunneled through and through with a vast echoing, empty, cold subway system, comprised of tile-lined neural tubes with no nerves inside. The space is so enormous that my entire body can fit inside it. No pain is transmitted along the nerves, but no 'anything' is transmitted either, just a cold, echoing, airy emptiness. It is weird, not like being anaesthetized, but like a limited synaesthesia during which all sensory pain input is transformed into a vast wind-swept coldness, echoing hollowly through the neural tubes of my hyper-enlarged head and out to my neck and shoulder.
I hope that makes some sense.
Cordially,
cat yronwode"

(Catherine Yronwode, Newsgroups: alt.support.headaches.migraine, Subject: Alice in Wonderland syndrome, October 29, 2005)

Pat O'Connor, Balloon head, photograph taken in Galway during the arts festival, 2001. © 2001 Pat O'Connor (Lost webpage, November 2, 2005)

"When I've had some *way beyond tolerable* migraines in the past, I recall my head feeling like a balloon."

(Sage, Newsgroups: alt.support.headaches.migraine, Subject: Alice in Wonderland syndrome, October 30, 2005)

"LOL! Trust me, I cannot sketch, draw, paint etc. Click on these links, they're the best pictures I've found so far of a balloon head: here, here, here"

(Sage, Newsgroups: alt.support.headaches.migraine, Subject: Alice in Wonderland syndrome, November 1, 2005)

"Joaquin had an appointment with the neuro a little over a week ago and he gave me some info about ME that just blew me away. As we were wrapping up the appt, my husband mentioned that I'd had an MRI done recently because my migraines were becoming more frequent (1-2 a month instead of 1-2 a year). After a little chit-chat about that the neuro mentioned that he'd be interested in seeing the MRI films and asked that I bring it in next time if I remember. Then I said that I sometimes wonder if I had sz as a kid because I used to get the sensation of my tongue being huge -- literally it felt like it was the size of a car! It was the first time my husband had heard of it because I was embarassed by it (stupid, I know). Anyway, the neuro said that was from my migraines -- something called Alice in Wonderland Syndrome. I was so blown away by it. I came home and read about it and wow! it's really something. I later mentioned to my son's school nurse that the neuro had told me about some weird stuff with migraines (I didn't mention what exactly) but she said that migraines do some weird things that look like seizures. Anyway, it's all very interesting. I found lots more when I googled it but this is a good one: http://www.migraine-aura.org/EN/Alice_in_Wonderland.html. Peace, Anna"

(Anna, Epilepsy Foundation, Parents helping parents, Subject: Alice in Wonderland Syndrome, Kinda OT -- about my migraines, November 23, 2005)

"Mine would be a toss-up between feeling that my hands and feet were really big, and smelling liver sausage when driving through my neighborhood when there was no liver sausage to be found.

My typical migraine auras are kaleidescope, a shimmering fractal-type (my icon reminds me of these), strobing/flashing, or vertigo/spinning. I've also had double-vision once."

(porcubinebarb, LiveJournal for migraine sufferers, November 22, 2005)

"The 'big hands and feet' aura has only happened to me once. It came on suddenly, rather than gradually - I was sitting at my computer, and when I got up, my hands and feet felt completely out of proportion - my feet felt maybe twice as long. It only lasted about 10 minutes.

My auras have been getting stranger and stranger in the last few months.

I'm not 100% sure the liver sausage smell was an aura, since there was no one else to confirm that they couldn't smell it, but it seems like the most reasonable explanation. I've also smelled sulfur that the only other person around didn't smell, so that might have been one, too."

(porcubinebarb, LiveJournal for migraine sufferers, December 4, 2005)

"'feeling that my hands and feet were really big' is actually rather common apparently, so common they named it anyway. It is referred to as the 'Alice and Wonderland' effect. i thought i was crazy for years. When i was young i would lay my head on one hand and cover my eyes with the other, and once realized that all the sudden my hand felt huge, like it was expanding. So much so that looking my perfectly normal hand failed to convince me that my hand was indeed... perfectly normal and i would go into hysterics. i try now to lay my hands so they don't touch other things when i have migraines, because it upsets me so much. i have the sense that my head or arm or feet are larger too sometimes, however it isn't as convincing as the hands when i close my eyes.

also, my weird smell is roasting marshmallows and i spend most migraines with my nose covered by something. its just the expanding blood vessels triggering unknown brain components. i just tell myself its all in my head and nuzzle my nose into blankets or my shirt. it doesn't fix anything, but its comforting."

(untouchablegrac, LiveJournal for migraine sufferers, November 23, 2005)

"I started getting a migraine at 10:30 this last night. It was shaping up to be pretty bad: visual disturbances, numbness in my hands and face, a serious case of Alice in Wonderland Syndrome... As for what experienced last night, my arms seemed extremely long (rather like snakes) while my legs were more like stumps. My body felt so out of proportion that movement was challenging... I've always had it [the AIWS] with my migraines. It just varies in severity along with the headache."

(the girl with the guitar, LiveJournal for migraine sufferers, December 15-17, 2005; addittions in square brackets by Klaus Podoll)

"I know I've had depersonalization/derealization, and Alice in Wonderland Syndrome [AIWS] because those too are just too unusual for me to forget or brush off as something else... The AIWS I sort of feel like I'm larger than my body. If I look at my feet it somehow registers that they're on the other side of the room."

(r_monoxide, LiveJournal for Support Group for Migraine Sufferers, Subject: I guess I should introduce myself here, January 30, 2006)

LF, Macrosomatognosia of both hands, 2007. © 2007 LF (larger image see here)

"I recently watched a documentary on AIWS on ABS news 'Medical Mysteries'. I am a 53 year old female. My migraines started when I was 14 years old (1968). They subsided following the birth of my last child (1988).

A recurring symptom that I have is a tactile hallucination. I have had them since I was a child. My hands, jaw, and tongue become extremely large. The hallucination lasts for about 1/2 hour. I am able to talk myself through by looking at my hands, gripping my fists, biting my tongue, and looking in the mirror to assure that all is normal. This is the only type of hallucination that I experience. What are your thoughts on this matter? Could it be AIWS?

This often occurs when my anxiety level is very high. It seems that the AIWS syndrom acts like a release valve for the panic. The panic continues so high then all of a sudden the syndrom occurs and calms the panic. I have had many occasions that the AIWS just occurs with no reason, but, always the same part of my body."

(LF, Email to Klaus Podoll, September 21, 2007)

"This is a drawing that depicts what I sense is happening to me during an episode. Although it was not drawn during one. I am anxious to draw while I am experiencing the hallucination. I draw simultaneously with both hands."

(LF, Email to Klaus Podoll, October 4, 2007)

In total body microsomatognosia, the sensation of being abnormally small affects the entire body. (See here)

Microsomatognosia

Likewise, microsomatognosia may affect the entire body or parts of it (the last mentioned experience being labeled partial microsomatognosia), e.g. the head or the hands:

Mella Wyrden describes her recurring experience of total body microsomatognosia.

"migraine-o-rama
both today and yesterday, I've felt as if I'm much too small. I wonder if it's the symptom of migraine I've read about, but have never yet experienced?
As usual lately, there's one steadily brewing on the stage-right side of my head. Pound pound pound."

(Mella Wyrden's LiveJournal, October 24, 2005)

"I felt about half my usual size. It was extremely weird. The effect started in a Wal-Mart, which always has bright lights that bother me. But I've never felt smaller than usual in there before. Walking behind the shopping cart, I felt miniature and it was like everything around me was massive and looming above me, even the cart I was pushing. That was about an hour. Then it started up again when I got to work (again, bright lights) and lasted for about six hours.
It hasn't happened since. I'm thinking it might be that strange Migraine symptom, or perhaps some other thing having to do with medication, or possibly my vision? or maybe I'm insane?"

(Mella Wyrden's LiveJournal, October 25, 2005)

"This is very fascinating to me. I wonder if it'll ever happen again!
I'll try to remember the circumstances surrounding the effect. Actually, I'm being inspired by you & your Migraine Aura website, to keep a notebook of any migraine related (or even possibly migraine related) events, dreams, and the migraines themselves. I think maybe if I document it, it'll feel less overwhelming & random. I just need a small notebook I can carry with me, to get started!"

(Mella Wyrden's LiveJournal, October 27, 2005)

The following reports are examples for partial microsomatognosia, where the body image disturbance affects not the entire but just parts of the body, e.g. the head or the hands:

"Recently a neighbor's 6-year-old girl was remarking 'Uh oh, my head's getting smaller again.' Her concerned parents took her to a doctor who sent them to a neurologist. He said he thought the girl was suffering from migraine headaches without the pain. ... When the girl's mother related this to her own sister, the sister commented that she had experienced the same symptoms when she was a child, and now suffered from painful migraines."

(Robert Crosson, Newsgroups: sci.med, Subject: Migraine headaches without the pain?, October 15, 1992)

"Throughout my early childhood I suffered from migraine headaches... When I was 10 years old, I woke up one morning and I almost felt like I was still asleep and dreaming. I was still laying down in my bed and I held out my hands in front of me and they didn't feel like my hands, they felt like long skinny dry twigs. If I concentrate hard enough I can 'remember' the feeling and my hands start to feel that way again. After a few minutes it all went away and I didn't say anything to my parents about it. But for the next couple of weeks it happened more and more often, usually in the evening. " [more]

(Jen Smith, Alice In Wonderland Syndrome forum, March 12, 2005)

Such body image disturbances or cenesthetic sensations of constriction and strangulation are a rare manifestation of migraine. One of Féré's (1881) patients had cranial pain, together with a "sensation of constriction" of her head. Mingazzini (1897) documented the case of a patient who complained of "a sensation of strangulation and pain in the throat", a patient of Pick's (1894) choked with emotion during the course of a migraine attack with visual symptoms and aphasic disturbances, and a patient of Schob's (1917) had a sensation of constriction of the throat that sometimes preceded his headache attacks. Fisher (1980) reported a migraineur who reported that his "trousers felt often tight as if 'closing in on me'".

Lewis Carroll, manuscript of Alice's Adventures Underground (see here)

The similarity of the phenomena of macro- and microsomatognosia to the bodily transformations described by Lewis Carroll in Alice's Adventures in Wonderland (1865) doesn't escape notice, as has first been pointed out by Lippman (1952) and Todd (1955), the latter suggesting the medical term Alice in Wonderland syndrome to account for the body image disturbances in question.

"Did you know that the scene where Alice (in Wonderland) drinks the potions and gets bigger and smaller is supposed to be because the author suffered from migraines and was just describing his own sensations?"

(Starbug, Newsgroups: alt.support.headaches.migraine, Subject: cool aura page, February 3, 2000)

"Heh, I was always fascinated by that story. Dunno, some how makes me feel better that a famous writer suffered from migraine but used his experiences for literary inspiration!"

(Infrazone, Newsgroups: alt.support.headaches.migraine, Subject: cool aura page, February 8, 2000)

References

Féré C. Contribution à l‘étude de la migraine ophthalmique. Rev Méd 1881; 1: 625-649.
Fisher CM. Late-life migraine accompaniments as a cause of unexplained transient ischemic attacks. Can J Neurol Sci 1980; 7: 9-17.
Lippman CW. Certain hallucinations peculiar to migraine. J Nerv Ment Dis 1952; 116: 346-351.
Lukianowicz N. "Body image" disturbances in psychiatric disorders. Brit J Psychiat 1967; 113: 31-47.
Mingazzini G. Fernere klinische Beobachtungen über geistige Störungen in Folge von Hemicranie. Mschr Psychiat Neurol 1897; 1: 122-155.
Pick A. Zur Symptomatologie der functionellen Aphasien, nebst Bemerkungen zur Migraine ophthalmique. Berl Klin Wschr 1894; 31: 1060-1063.
Podoll K, Robinson D. Macrosomatognosia and microsomatognosia in migraine art. Acta Neurol Scand 2000; 101: 413-416.
Podoll K, Robinson D. Pictorial representations of macrosomatognosia experienced as somesthetic aura in migraine. Neurol Psychiat Brain Res 2003; 10: 125-128.
Podoll K, Ebel H, Robinson D, Nicola U. Sintomi essenziali ed accessori nella sindrome di Alice nel paese delle meraviglie. [Obligatory and facultative symptoms of the Alice in Wonderland syndrome. In Italian] Minerva Med 2002; 93: 287-293.
Schob. Beitrag zur Kenntnis der schweren Migräneformen (Migräne mit Herdsymptomen und psychischen Störungen). Z ges Neurol Psychiat 1917; 35: 151-174.
Todd J. The syndrome of Alice in Wonderland. Can Med Assoc J 1955; 73: 701-704.

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