Alice In Wonderland Syndrome (vision Disturbances)

[acousticmom]

My 10-year old daughter, who had negative bloodwork this spring, has had this weird thing called Alice in Wonderland Syndrome (AIWS) in the past. Her vision gets all weird--things look either very large or very small, and she can't make it go back to normal. It lasts up to 10 minutes or so, but Tylenol seems to make it go away faster. (We tried this because it started when she was sick, and she tends to hallucinate with a fever.) These episodes start with an illness, happen in clusters, sometimes a few times a day at worst, and gradually go away over a couple of months. It's unnerving for her (and us).

The ped. neurologist said AIWS can be a migraine aura, and you can have the aura without the headache. It can also be related to epilepsy, but he didn't think that was a likely problem for her. I've also heard people with schizophrenia sometimes experience AIWS. (Hmmm. . . . migraines, epilepsy, and schizophrenia are all things that can also be associated with gluten intolerance.)

She's gone over a year without this happening, and last night she had an episode. (Not sick this time, but probably a little nervous about starting school soon.) It's a terrifying thing for her, but she's coping better after she learned that her eyes were only playing tricks and she's not going crazy.

There are lots of descriptions of people's AIWS experiences on this forum: Open Original Shared Link. I posted a similar question there.

Has anyone here experienced this?

Carol

[queenofhearts]

I haven't had this precise experience, but with migraine (or fever) I often get the FEELING that my body is larger or smaller. I don't know how to explain WHY it feels that way... Migraines do play strange tricks on my vision too, but not exactly like this. I've had the sensation that people whose faces I recognize look different, yet I can still recognize them... they just don't look like themselves. Very disconcerting.

Leah

p.s. I went to this thread because I'm a huge fan of the book AIW... I belong to the Lewis Carroll Society & everything! I think one of the reasons I was drawn to the book in childhood is because I sort of identified with Alice's dreamy confusion & all the weird things that happened to her. Wonder if LC was Celiac!?

Oh! I just had another thought. Is your daughter by any chance low thyroid? There's a connection with body temperature, & you can have a fever that measures normal...

[acousticmom]

I haven't had this precise experience, but with migraine (or fever) I often get the FEELING that my body is larger or smaller. I don't know how to explain WHY it feels that way... Migraines do play strange tricks on my vision too, but not exactly like this. I've had the sensation that people whose faces I recognize look different, yet I can still recognize them... they just don't look like themselves. Very disconcerting.

Leah

There are variations on the vision disturbances. Sometimes people's heads will look really small, or your hand might look stretched out and thin or your arm very large or your feet very distant--your own personal house of mirrors.

p.s. I went to this thread because I'm a huge fan of the book AIW... I belong to the Lewis Carroll Society & everything! I think one of the reasons I was drawn to the book in childhood is because I sort of identified with Alice's dreamy confusion & all the weird things that happened to her. Wonder if LC was Celiac!?

Yes, I've read that Lewis Carroll definitely suffered from migraines, and the book was probably a reflection of his auras.

Oh! I just had another thought. Is your daughter by any chance low thyroid? There's a connection with body temperature, & you can have a fever that measures normal...

That's interesting. I'm going to file that for future reference. She's never been tested for low thyroid. She has plenty of energy, though, and aside from being 10th percentile (I know, another possible celiac connection), she's quite healthy so we wouldn't suspect it.

Carol

[queenofhearts]

There are variations on the vision disturbances. Sometimes people's heads will look really small, or your hand might look stretched out and thin or your arm very large or your feet very distant--your own personal house of mirrors.

Yes, I've read that Lewis Carroll definitely suffered from migraines, and the book was probably a reflection of his auras.

That's interesting. I'm going to file that for future reference. She's never been tested for low thyroid. She has plenty of energy, though, and aside from being 10th percentile (I know, another possible celiac connection), she's quite healthy so we wouldn't suspect it.

Carol

Whew, sounds so disturbing, the house of mirrors thing! I hope you're able to diagnose & help your daughter. It must be so frightening for her.

I'm curious, are her dreams very vivid & unusual? Maybe she can see this as a sort of waking dream...

[gfp]

Last year i had a funny episode for perhaps a week.

I thought I'd been glutened at first because i got a fever and D and then my keyboard started growing and shrinking and the screen doing the same, all very very weird. Then other things started doing it ... not just growing but distorting ...like watching shapes form in clouds..??

Then i started with semi hallucinations.... I say semi because I wasn't seeing things not there but for instance a piece of paper fluttering in the subway I thought was a mouse.

However this is kinda like getting back from camping or something where you have been infested with mosquitoes or ants... and you tend to keep seeing them everywhere....

In the end I put it down to food poisioning....

[sparkles]

I didn't know that there was a name for it but when I was having migraines, I experienced it. In fact, that was often the aura that told me that I would be having a migraine within 24 hours. It was just like being in a House of Mirrors. When I first started having these disturbances, I thought that I was hallucinating (guess I was) and the docs just told me to take some valium! Oh how times have changed and thoughts about migraines have changed too. Anyway, when I went gluten-free, the migraines STOPPED!!!!! as did these strange visions. Does she have them when her eyes are open? I only had them when I would close my eyes. For me they became a warning sign that I was going to have a bad migraine and I could sometimes lessen the intensity of the migraine by taking Midrin before the pain started. The other migraine meds that I tried over the years (even the newer ones) didn't help but for some reason, Midrin did. By the way, Midrin has acetomiephine (sp) in it!!!!! I had migraines for 40 years. I also had ocular migraines...I lost vision when I would have those but no pain....so I know that migraines can really have some weird auras and symptoms! I hope your daughter gets some relief. I am glad that she doesn't have the pain with the migraine but the visions can be rather disturbing!!!! The day I stopped eating gluten is the day the migraines disappeared ....could really be a connection.

[jknnej]

Yes I have had this; it's an awful feeling and it sound just like you described. For me it started only AFTER going gluten free. It gradually got better for me and now it happens less and less but it is always scary.

I've had a million tests, all of which came up negative, so for now I guess I'm fine.

I also get this way when I get a migraine. Sometimes I get silent migraines, or the aura, but for me that is when I see wavering rings or circles for about an hour in one or both eyes, and it is a different sensation than the other visual problem. the other one isn't a headache; it's just this weird sensation that things are smaller or larger and I cannot focus on one thing for my life. I usually have to close my eyes or space out because if I try to concentrate on something when this happens I start getting a headache or feeling sick.

Again, it doesn't happen as much as it used to; I just chalked it up to gluten withdrawl but who knows? According to my drs I am healthy??

[acousticmom]

I'm curious, are her dreams very vivid & unusual? Maybe she can see this as a sort of waking dream...

Sorry, queenofhearts, I missed your question earlier. She used to have scary dreams and occasional night terrors, but not so much now. The good thing is, she's a problem-solver, even at 10. So if she knows that being overtired can make it worse, she tries to get to bed earlier. I think anxiety is connected somehow. Even though she's generally bright, outgoing, and confident, at bedtime she'll freak herself out about things. Like needing to know when we checked the smoke alarms last ("three days ago, the last time you asked") or trying to imagine eternity and getting scared by the bigness of that. Anxiety can also bring on the Alice In Wonderland Syndrome if she's experienced it recently (of course, just thinking she might get it makes her anxious, so it's a chicken & egg scenario).

Fortunately, she hasn't gotten it again since my first post, though she "feels" like it at night time. We'll see, I guess.

Carol

[imsohungry]

This topic fascinates me...

I have migraines and seizures (with an occipital lobe focus...which "controls" vision). My life has been spent coming in and out of the "looking glass" (aka Alice in Wonderland Syndrome). I actually wrote a poem about this experience.

Carol,

I'm glad your daughter is feeling better.

Blessings. -Julie

[queenofhearts]

Sorry, queenofhearts, I missed your question earlier. She used to have scary dreams and occasional night terrors, but not so much now. The good thing is, she's a problem-solver, even at 10. So if she knows that being overtired can make it worse, she tries to get to bed earlier. I think anxiety is connected somehow. Even though she's generally bright, outgoing, and confident, at bedtime she'll freak herself out about things. Like needing to know when we checked the smoke alarms last ("three days ago, the last time you asked") or trying to imagine eternity and getting scared by the bigness of that. Anxiety can also bring on the Alice In Wonderland Syndrome if she's experienced it recently (of course, just thinking she might get it makes her anxious, so it's a chicken & egg scenario).

Fortunately, she hasn't gotten it again since my first post, though she "feels" like it at night time. We'll see, I guess.

Carol

It's great that your daughter has such a practical approach to her health! That will serve her well.

Often I think very bright & imaginative children are especially vulnerable to anxiety-- it's all too easy for them to construct elaborate & fearful scenarios. Does your daughter do any yoga or relaxation exercises? ("Square" breathing was a big help for my sons.)

I'm glad she has been symptom-free. Hope she continues well.

Leah

[revenant]

Ah..! I have been looking for the name of this!

As a child I used to have these episodes, lasting 10-25 minutes, where I would be lying in bed.... with my eyes closed. Suddenly I would begin to get closed-eye hallucinations of one big triangle constructed of lines, but it was COMPLETELY... how to explain?.... they were far, but close, still, but moving... They were close and far and did not make any sense at all, and it was the worst feeling I would get along with this...

Then I would open my eyes, and I would feel like everything is HUGE and FAR... Along with the feeling of falling forward, or into myself... or out into the space around me, expanding, almost. The bed side would be what feels like miles away, and I would feel lost and terrified.. Or I would feel like everything is so tiny and that my giant limbs are about to fall out of the window across the room, or that I was seconds away from being pressed against the ceiling and walls.. I would stuff my face in a pillow and try to hide in pure terror...

Looking back on it, it was accompanied with a lot of panic.

I don't remember having migraines with it, though

These went away after going gluten free. On gluten, I had them often