Alice In Wonderland Syndrome

[Solicitous]

Hi all. I hope that every one is enjoying the long weekend.

When I was at the age of 9 years old. I started to have this awful frightening
nightmare. I would scream out for help, but my screams wouldn't come.

The nightmare?? consisted of having the feeling that many parts of my body seemed and felt like they were enormous. Especially my hands. They felt like they were 10 times the size than they actually were.

I never told anyone about these episodes that lasted around 2 -3 years, then I grew out of it.??

When my son was 10 years old, something made me think about what I went through. I asked my son if he ever had a nightmare were he feels big. My son just stood there, he was really taken back at my question.

YES....my son said, and he described it in great detail. He was going through the same thing that I did. I was glad that I asked for I could help my son deal with this.
Many times my son would wake me up in the middle of the night and tell me
"Dad, I feel big"

Well after 43 years I found the answer. The answer was that my son and I was having a seizure in our sleep. And the cause (not diagnosed by a doctor...I dread that thought) was a syndrome called Alice In Wonderland Syndrome.
It has many symptoms and causes, one cause is having "Temporal Lobe Epilepsy"
WOW after all these years my son and i finally have the answer at what was happening to us.

I still get the same kind of S in the mornings once in a while, but not as severe.

Usually a child grows out of this syndrome, as my son did. But I am keeping a close watch on him.

Here is a good web site which explains it in more detail:

http://www.aiws.info/

Blessings.
Norm Beam

[Endless]

Hi, Norm.

Thanks for the post. The link/address didn't work, though. Can you recheck?

I get something that is related. Things look BIG little BIG little.

It was incredibly puzzling until my diagnosis. I was a bit freaked out by it.

[Solicitous]

Hi! Endless
Am not aloud to having links in my posts yet???
There is many sites on google about A.I.W.S
It took me a couple times to be able to get on this site
You have to remove the spaces in the address for it to work
http//www .aiws .info/
Norm

[Endless]

Norm, thank you so much for this! My epileptologist just kind of looked at me when I told him how things got big, little, big, little. And this also explains my time distortion. They have been seizures all along. I'll add it to my growing list of what's the temporal lobe epilepsy.

[Solicitous]

You are so welcome Endless.

Guess what??? I maybe have helped you, but you also have helped me in a big way.

I have been having so much problems with time distortion, and never could figure it out. But now you taught me something new. I didn't realize that
AIWLS was related to that.

Thanks Endless.

Norm

[Endless]

Ha! It was in the reading materials you linked into above.

The funny thing is, when I explained it to people I'd say, "Kind of like Alice In Wonderland." And at that time I had no idea there was an actual "Alice in Wonderland Syndrome."

[Endless]

By the way, we seem to live in here. It's making me admit maybe I'm not doing as well as I thought, and I need waaaaay more support than I thought. I'm not getting all I need from my family & friends, and not even the doc. I'm really glad we have this place. If not just for the learning, and the supportive people, but also to feel like I'm just like everybody else for a switch. Like normal!

[Solicitous]

Oh dear Endless.

That's what we are all here for my dear friend. I know when ever I do a post, you are always there for me as well as others.

I don't get any support from my family.....but everyone in this group (that means you too Endless) are my family.

We are always here for you, weather it be in good times or not so good times.

We are blessed to have you Endless a part of this group, and you are so greatfully appreciated.

Bless you.
Your friend Norm

[flinnigan]

I think we all go through times of living here, then when your doing really well or not you slip away for a while, but like all loving family it feels like old times when we come back.

[flinnigan]

Sorry got interuppted, as for the Alice In Wonderland Syndrome, I have temporal epilepsy and never felt the bigger smaller part but more of the tunnel vinision and falling down the hole part. Just saw the new movie not bad.

[Endless]

Well, here's a possibility of a whole new string! Is it temporal lobe epilepsy, or is it the actual movie?! With 3D glasses, who knows. Now if only the seats moved....

[mozo]

Hello,

I am a student journalist from the London School of Journalism, and I am writing an article on the Alice in Wonderland Syndrome...thank you for your account of your experiences with this condition, that helped me understand it I would like to know more about it, for example:

1. How does it affect you when the symptoms happen in public, for example when you are talking with people, etc?
2. Usually what brings on the condition...what aggravates the symptoms?
3. How do you feel when the syndrome's symptoms come on?
4. How do you deal with having the syndrome?
5. Is there any particularly significant episode of this syndrome that you had?

Thank you...I really look forward to hearing from you.



-Zoey-

[gr33nr0se]

hi solicitous,
when i was little, i also had allison wonderland syndrome. both my brothers had it and my sister still does. i grew out of it and neither of my brothers have epilepsy so im not sure of the connection for my family. im the only one with epilepsy so hopefully that means that your son wil be perfectly fine. good luck

[Endless]

Zoey,

Everyone's experiences are different with AIWS, just like any other variety of seizure. I can share about mine, but everybody who has it needs to chime in for you to get a broader picture.

In answer to your questions:

1. How does it affect you when the symptoms happen in public, for example when you are talking with people, etc?

With most varieties of my AIWS seizures I usually stop talking, and just look puzzled. The notable exception is described later.

When I'm having a simple partial seizure, no matter what variety, I'm just absorbed in the seizure. With AIWS, I sometimes get things that look freakishly huge, or distance/speed/time warps. With the distance/speed/time warps I sometimes don't know it's a seizure. In that case I bump into things that look far away, think we're going really slowwwww when we're really going the speed limit, or think no time has passed and it's been an hour. That last thing affects me hugely when I was at work. I'd have a conversation with people and think that 2 minutes had gone by, when I'd have been talking at them for 10-20. My family and friends don't care, but work did.

2. Usually what brings on the condition...what aggravates the symptoms?I have no idea.

3. How do you feel when the syndrome's symptoms come on?
Puzzled. No matter how many times it happens, I never seem to think in the moment, "oh, i'm having a seizure." I just sit there puzzled and try to figure out what I see and why it looks wrong.

4. How do you deal with having the syndrome?
I don't. There's no way to deal with it. I just take it as it comes.

5. Is there any particularly significant episode of this syndrome that you had?
The one that drives me the nuttiest is when the picture on the TV looks freakishly HUGE, but it still fits inside the normal sized frame of the TV. No part of the picture is cut out to do this - it's the whole pic just big. It's really weird. Every time it happens I find myself holding up my hand to measure the picture size, looking at it sideways, trying to figure out what's going on. Then "poof!" it goes back to normal and THEN I think, "I had a seizure."

[mozo]

...for helping me with the questions!