Alice in Wonderland Syndrome (AiWS) in migraine - any experiences to share please?

[Quito]

Hi everyone,

I have chronic migraine with aura (mainly visual and also motor/sensory) and over the last couple of years, I've increasingly experienced Alice in Wonderland syndrome symptoms. Some of them are really strange (whole body pre-seizure sensations like an almost physical 'fizzing') and some are really amusing - like, having parts of my body suddenly seem & feel much bigger than they are, watching people speak but hearing their voice out-of-sync, perceiving myself as a list of bullet points (!?!). I initially thought I was falling into sleep/dreaming or pre-sleep hallucinating, but these things happen when I'm fully awake and usually in the post-drome part of migraine. I think the symptoms also increased after taking Topirimate for a month a couple of years back.

I thought I sounded insane when telling my neurologist, but he confirmed that such symptoms are common with AiWS and that they're all produced by perceptual miscommunication in the brain and are common in migraineurs. I'm now really intrigued by this and wondered if others might have similar stories and experiences to share.

Have you experienced such perceptual shifts during migraine? If so, during which phases? How long do they last? What happens? Have you experienced this whole-body fizzing/pre-seizure feeling thing? (I can't explain that one well!) There seems to be little info on AiWS online and I'm sure it must really freak people out!

I was wondering if we could write something more about it between us - maybe ask the Migraine Trust (or whomever) to do an article on it to share our experiences. What does everyone think? Could that be useful?

Thanks everyone and have a lovely day!

[Cat00]

I've only heard about it once before and don't have it myself. I just wanted to say your attitude is is amazing and you write very well about it yourself.

[Quito in reply to Cat00]

Thanks Cat00

[crazycupcake]

Just found this post and I have suffered with aiws for as long as i can remember, i'm now 44 and i don't get them as often but i always feel really tall which amuses my husband as i'm only 5ft 2 my 6 yr old son has also had at least one episode which he thought was a nightmare, he wasn't well (currently thinking it was abdominal migraine) and he said his bedroom was getting bigger. he has autism and it really freaked him out. I suffer from really bad migraines and have done all my life so i'm guessing it is down to that. I don't get auras very often, just a migraine hits me out of the blue. i quite enjoy the aiws to be honest

[Headcased]

Hi ,

Yup,

After a head/cord injury, then surgery yr later, it started.

Daren't tell anyone for 6months, thought I was going nuts.

I 'see' stuff that's not there, along with synethstasia/photophobia/phonophobia etc.

But I don't have headaches, just a messy 'fog' and daily dizziness.

Just been diagnosed with PPPD, (sort of).

Neuro's are all at a bit of a loss really,cos I don't think I've had a migraine, (know a few who have) but need to sleep for a couple of days in a dark room to get over an attack, could it be Vestibular migraine?

I'm rubbish at explaining my recollections.

Quite interesting to sit with your head in your hands , physically estimating if you're heads the size of an orange, or a grapefruit !!

Being treated for chronic migrainous symptoms, Botox etc.(it's not done owt)

Can eat/ drink everything, but a low pressure front accompanied by windy weather , and my world collapses inwards.

There's a chap at The Brain Charity

I spoke to that experienced em in the past, he's a migraineur.

Ps.

I can climb stairs fine, but going down my feet seem miles away.