Howdy Yall..

please take a few moments to read and do some searching in your past.. maybe ask your parents if you ever mentioned such behavior as a kid..

I suffered from Alice in Wonderland syndrome from a child age to May 17th 2001.. (lets just say I'm good with dates) I was 21 years old.. just weeks later at the same 'trying to get to sleep' hour that I would suffer from AIWS I met my white rabbit.. that monster. (whew.. got a lil emotional remembering back to that night) I was so confused from the pain.. the AIWS attacks were pain free.. and this was ... simply unimaginable..

back to the point.

was wondering if anyone else had this syndrome growing up and if they stopped shortly before your first cluster.  Please understand that I did not know I had this syndrome until years later.. I grew up thinking that everyone went through this.. (and I simply felt different than everyone else to begin with). I was also a pretty unpopular growing up and didn't talk much to anyone.. haha.. (not the case anymore)
Please read the description of Alice in Wonderland syndrome below and think back to your childhood..

I usually had these 'visions' at night trying to fall asleep.. when I was confused, upset, or doing a lot of reflecting, and just figured it was part of being emotional.. As I got older and read more of the research of this syndrome I started feeling like I should keep my mouth shut.. that a doctor would certainly assume I was suffering from migraines.. but my mind is getting tired and my neck hurts all the time from 'head banging' that I need more answers...

Any insight on the subject would be appreciated

Smile yall.. it really does help!

Philip

details of 'Alice in Wonderland' syndrome
written by a fellow sufferer:

The most prominent and often most disturbing symptom is that of altered body image: the sufferer will find that they are confused as to the size and shape of parts of (or all of) their body. The parts usually mentioned are the head and hands; growth seems more usual than shrinkage. This phenomenon seems to have the medical term 'metamorphosis'.

The second major symptom is the distortion of visual perception. The eyes themselves are normal, but the sufferer 'sees' objects with the wrong size or shape and/or finds that perspective is incorrect. This can mean that people, cars, buildings, etc. look smaller or larger than they should be, or that distances look incorrect; for example a corridor may appear to be very long, or the ground may appear too close.

Other symptoms which have been referred to as part of AIWS include:

    * Distorted time perception; time moving quickly or slowly.
    * Distorted touch perception, e.g. a feeling that the ground is 'spongy' under the feet or that the sensation received from touching something is simply incorrect or unrecognized.
    * Distorted sound perception.

Note from Philip:

I would really appreciate if we can keep this thread about AIWS and cluster headaches.. and anyone that has information about it.. please no replies that can get this off subject.. it happens very quickly and mind sets change on the purpose of website... thanks to all!

I'm 49 now, CH started around 18 years of age, I did not suffer from that syndrome. WOW, that had to be a little tough to get through.

Joe

the AIWS was actually pretty neat lookin at it in hindsight.. there was never any pain involved.. and I can REALLY relate to Alice in the movie.. It did get scary at times.. but I would chant at those times.. I knew it would pass, it always did..

sound familiar?

I don't suffer from these anymore,  I just remember a clusterbusters convention where I brought this up to a visiting doctor.  He was interested yet I never followed up on it, and .. well I think its time I did..

SMile!

I had similar experiences on high dose prednisone, altered reality but I knew it wasn't "real"

It wasn't actually scary but it could have been, just very bizarre. It only lasted while I was on pred though although I did have very similar experiences on topomax too

Nope

wrote on Nov 20^th, 2009 at 5:43pm:

I had similar experiences on high dose prednisone, altered reality but I knew it wasn't "real" It wasn't actually scary but it could have been, just very bizarre. It only lasted while I was on pred though although I did have very similar experiences on topomax too

That's really interesting..  Googling all of these things didn't bring up any similarities.. Prednisone is a blood thinner, which blood flow can certainly affect people in different ways..  steroid anti-inflammatory.

Has anyone else experienced similar 'metamorphisis' while on pred or topo?

Philip

TXheadbanger wrote on Nov 20^th, 2009 at 6:04pm:

wrote on Nov 20th, 2009 at 5:43pm: I had similar experiences on high dose prednisone, altered reality but I knew it wasn't "real" It wasn't actually scary but it could have been, just very bizarre. It only lasted while I was on pred though although I did have very similar experiences on topomax too That's really interesting..  Googling all of these things didn't bring up any similarities.. Prednisone is a blood thinner, which blood flow can certainly affect people in different ways.. Has anyone else experienced similar 'metamorphisis' while on pred or topo? Philip

   Never heard of pred. bein a blood thinner but I never heard of AIWS either.  Pred. is a steroid.

          Potter

thanks Potter..

you're right.. Prednisone is a steroid anti-inflammatory - not a blood thinnner 

.. in reading the online prednisone sites there are several places online that warn of mixing the two..

and well.. I did in my text..

thanks again!

Philip

Not a ch'er but I can't take prednisone, due to a very bad psychological reaction to the drug.  Let's just say, that's the closest I've ever come to having a real psychotic break (thank all the gods that Jimbo knew why I was having the reaction and was able to telll me stop the damned pred).

I have had prednisone kick a cycle to the curb only once or twice. From my experience you got to get on the taper right away. First sign of a cycle. My house was so frickn' clean when I was on that stuff. Work loved me. I was a maniac.  I think I started out at 100 mg for i think 4 days then 80 for 4 days and so on. can't remember. But the stuff tasted terrible is all I remember.

Jrcox

You're not supposed to chew it.  ;)

lol, oh god no. I would never chew it. But taking 10 of them or even 8 of them. Sometimes one doesn't go down right and you get a taste. yuk 

Jrcox

I googled AIWS and a common denominator in the links seemed to be Migraines.  Also, it is something kids may have and grow out of eventually.  There were a couple of other indications,,,google it. 

Take the advice of the hookah smoking caterpillar!