Alice in Wonderland syndrome

[wastwater]

Hi I thought id bring this up as I suffered from it in my childhood,I was surprised it had a name and it is thought to be due to Epstein Barr virus.I suspect I have a problem dealing with EBV.Surprised you don't see it mentioned more maybe you had it but didn't know what it was like me.

 

[Hip]

Coincidently enough, a few days ago I posted this comment on the Alice in Wonderland syndrome that I experienced on a daily basis for many years as a kid.

Alice in Wonderland syndrome involves or micropsia and/or macropsia, which are:

Feeling as if your body has expanded so that it feels larger than normal (macropsia)
Feeling as if your body has shrunk to minute proportions (micropsia)

Some people suspect Lewis Carroll had Alice In Wonderland syndrome, and that this provided the inspiration for his Alice In Wonderland novels (in which Alice shrinks to a tiny size, or grows to a huge size, after drinking potions from bottles, or eating various things).

Alice in Wonderland syndrome is most commonly caused by having temporal lobe epilepsy, which is what I think I have in my case. Temporal lobe epilepsy has been linked to having spiritual mind states, like ecstatic religious experiences.

 

[NK17]

Hi I thought id bring this up as I suffered from it in my childhood,I was surprised it had a name and it is thought to be due to Epstein Barr virus.I suspect I have a problem dealing with EBV.Surprised you don't see it mentioned more maybe you had it but didn't know what it was like me.

I've suffered from it too all through adulthood.
The last episodes seemed to be triggered by jet lag, right after long transoceanic flights.
Since I can't travel anymore I haven't experienced it in a long time.
For the record I had a serious case of Infectious Mono as a teenager and chronic reactivations and I'm currently taking VGC for HHV6 high IgG titers as per Dr. Montoya's protocol.
As a young adult it was suspected that I suffer from Epilepsy, but nobody followed through.
Now I know that, as @Hip says, Temporal Lobe Epilepsy is associated with HHV6 and I know that what I've experienced were episodes of Alice in Wonderland Syndrome.

 

[Allyson]

I have heared on EDS pages of EDSers with AIW syndrome

I think I get it mildy occasionally - not sure

For me it is lik e a combo of sudden mild dizziness with and eye /vision co-inciding - only lasts a moment for me but some EDSers can have I t all the time and it is very distressing

A

 

[NK17]

I have heared on EDS pages of EDSers with AIW syndrome

I think I get it mildy occasionally - not sure

For me it is lik e a combo of sudden mild dizziness with and eye /vision co-inciding - only lasts a moment for me but some EDSers can have I t all the time and it is very distressing

A

For your information Allyson I've a family history of EDS (one aunt and one cousin) and I've been diagnosed with a Benign Joint Hypermobility Syndrome dx, but the only feature that is long gone is the hypermobility ...

 

[Allyson]

Itneresting NK - yes JHM it is no longer considered Benign though - most people with HM have a host of other symptoms too they now realise and if you are HM you likely have EDS

and many stiffen up as they get older so lose the HM too !


more about it in this thread FYI -
http://forum.notcrazy.net/index.php?topic=9571.0



cheers,
Ally

 

[Allyson]

For your information Allyson I've a family history of EDS (one aunt and one cousin) and I've been diagnosed with a Benign Joint Hypermobility Syndrome dx, but the only feature that is long gone is the hypermobility ...

and did you say you are Gorlins sign positive too - can touch tongue to nose NK?

that is an indicator of EDS too


Ally

 

[NK17]

Itneresting NK - yes JHM it is no longer considered Benign though - most people with HM have a host of other symptoms too they now realise and if you are HM you likely have EDS

and many stiffen up as they get older so lose the HM too !


more about it in this thread FYI -
http://forum.notcrazy.net/index.php?topic=9571.0



cheers,
Ally

I'm aware of all that Ally, a while ago I've been reading and researching a lot on EDS and all related syndromes or overlapping symptoms.

And yes I can tell that there is nothing benign at all about it if you've read the right sources on the subject:
Prof. Grahame in London as well as Dr. Jaime Bravo of Chile and my compatriot Dr. Marco Castori and last but not least Dr. Claire Francomano in Baltimore.

I'm an ex flexible currently stiffy person .

 

[NK17]

and did you say you are Gorlins sign positive too - can touch tongue to nose NK?

that is an indicator of EDS too


Ally

Nope, can't do that.

But my tongue frenulum is inexistent.

 

[Allyson]

I'm aware of all that Ally, a while ago I've been reading and researching a lot on EDS and all related syndromes or overlapping symptoms.

And yes I can tell that there is nothing benign at all about it if you've read the right sources on the subject:
Prof. Grahame in London as well as Dr. Jaime Bravo of Chile and my compatriot Dr. Marco Castori and last but not least Dr. Claire Francomano in Baltimore.

I'm an ex flexible currently stiffy person .

interesting thanks NK
I think Prof Grahame has retired from some sections - public I think

and Dr Kaz Kas is now dealig with EDS at Univ College London

Which country are you ( and Dr Castori) In?
Dr Castori has written some top notch articles on EDS

you may like to join this fb page for stiff EDSers -Stiff Zebras- all welcome
https://www.facebook.com/groups/455374384560623/?ref=br_tf

it seems to be one or the other -very HM or very stiff - no middle ground for EDSers it seems - maybe tight muscle fascia winning out over loose ligaments?

Your missing frenulum is interesting...... not sure if all who are Gorlin's sign positive are missing one .

cheers

Ally

 

[NK17]

interesting thanks NK
I think Prof Grahame has retired from some sections - public I think

and Dr Kaz Kas is now dealig with EDS at Univ College London

Which country are you ( and Dr Castori) In?
Dr Castori has written some top notch articles on EDS

you may like to join this fb page for stiff EDSers -Stiff Zebras- all welcome
https://www.facebook.com/groups/455374384560623/?ref=br_tf

it seems to be one or the other -very HM or very stiff - no middle ground for EDSers it seems - maybe tight muscle fascia winning out over loose ligaments?

Your missing frenulum is interesting...... not sure if all who are Gorlin's sign positive are missing one .

cheers

Ally

Thanks for the info Ally .

Dr. Castori is in Rome. I'm originally from northern Italy, but I've been living in the US for quite some time now.

You couldn't describe my muscle/tendon/fascia better!

I think that my Fibro diagnosis is just another failure of most doctors to see the forest and not only the tree ...

I've extremely long limbs and very thin delicate skin with very visible veins and capillaries and some vascular abnormalities, but so far only a bunch of apparently overlapping syndromes.

I dream of the day when some serious data collection and mining will be done and show that most if not all of these diagnoses are part of a continuum.

Ciao

 

[Allyson]

Salve NK -

did you check out Marfans then with your long limbs - related to EDS but I don t know much about how it manifests

My grandpa had Marfan's habitus and Gorlin's positive - my brother too


saluti cordialissimi !

Ally

 

[Allyson]

Thanks for the info Ally .

Dr. Castori is in Rome. I'm originally from northern Italy, but I've been living in the US for quite some time now.

You couldn't describe my muscle/tendon/fascia better!

I think that my Fibro diagnosis is just another failure of most doctors to see the forest and not only the tree ...

I've extremely long limbs and very thin delicate skin with very visible veins and capillaries and some vascular abnormalities, but so far only a bunch of apparently overlapping syndromes.

I dream of the day when some serious data collection and mining will be done and show that most if not all of these diagnoses are part of a continuum.

Ciao

Salve di nuovo NK


and yes I suspect my muscle fascia too - massage is so helpful for me - once I recover form it lol

yes Dr Heidi Collins is saying now that EDSeers are more like elephants ( in the dark) than Zebras- no!- more like horses than zebras - it is more common than they once thought - 1 in 100 of the population they now say have EDS - undiagnosed mostly

the thin transparent skin is big sign of EDS as are the visible veins - do you get petechaia and easy bruising too?

ciao,

Ally

 

[NK17]

Salve di nuovo NK


and yes I suspect my muscle fascia too - massage is so helpful for me - once I recover form it lol

Hi Ally,

I can't have massage, it leaves me in so much pain ;(.
Which type of massage works for you?
Once, many years ago I had a massage in Bali after which I was in serious all over body pain for days; I can still almost feel it.


yes Dr Heidi Collins is saying now that EDSeers are more like elephants ( in the dark) than Zebras- no!- more like horses than zebras - it is more common than they once thought - 1 in 100 of the population they now say have EDS - undiagnosed mostly

the thin transparent skin is big sign of EDS as are the visible veins - do you get petechaia and easy bruising too?

Yes I bruise almost without even banging into things, since I was a very small child one of my nicknames was pesca bianca (white peach), because I bruise just like one. I carried an heparin based ointment with me.

The "geneticist" I saw last year was a total incompetent idiot, he barely looked at me and 2 other family members and after 5 minutes max of visit told us that if we had Vascular EDS I would have been dead by then.
It didn't help that I told him that only 12% of VEDS has some major ruptures and that in any case EDS in all its forms is not always a clear cut evident diagnosis, otherwise many more people affected by it would be diagnosed?

ciao,

Ally

A presto,
NK17

 

[NK17]

Salve NK -

did you check out Marfans then with your long limbs - related to EDS but I don t know much about how it manifests

My grandpa had Marfan's habitus and Gorlin's positive - my brother too


saluti cordialissimi !

Ally

My paternal grandpa had a total habitus marfanoid and developed Parkinson's Disease.

 

[Allyson]

My paternal grandpa had a total habitus marfanoid and developed Parkinson's Disease.

My cousin has Parky's too - my grandfather MAY have had it - not sure now- it is related to serious blood pressure issues too though.

Ally

 

[wastwater]

Alice in wonderland syndrome gets a mention in oslers web