[MRFurr]

Hello everyone!

I am new here and I need information about Geschwind syndrome. It is a type of personality that is connected to TLS.

My mom has had seizures all her life, and I believe she may have Geschwind. She is in her late 60's and I have concerns about her behavior and personality. If there is anyone here that I can talk with, please post back to me.

Thank you,

M R

[Ellie]

Hello and welcome! I'm certainly not familiar with this, hopefully someone here is. However, I plan to look into it just to 'know'.

I'm sure you've done the legwork, but here are some links just in case.

• Pubmed.gov
• Epilepsy.com
• Emedicine.com
• Priory.com
• Book: Seized (Amazon.com)

Hope some of this helps and you find our site of use to you.

Have a great day!

[Julie]

Hi MR and welcome to the board.

[Ellie]

Ok, I am rather intrigued by this. So I'm going to get nosey.

What medication is your mother taking, and how long has she been treated with AED's?

Additionally, have they done any testing for other things (such as Dementia, etc..)?

From what I have read about this, it could very well be a side effect of medication that could certainly 'alter' her personality. However, there are so many possibilities and whatnot that this could be. Any additional information would be great. Like I said, I'm not familiar with this specific condition, but I'd be more than willing to help you hunt down whatever information you'd like to gather.

-Ellie

[betty-anne]

I found one of my old posts on this subject, because, since I have TLE (Temporal Lobe Epilepsy), this has always interested me. I hope it is helpful.

I read Eve LaPlante's book Seized also, and was fascinated by Dr. Norman Geschwind's theory. From LaPlante's book, I learned about some of the character traits of Geschwind's Syndrome, with five of them being:

Hypergraphia [a lot of Writing],
Hyperreligiosity [a Strong belief in God],
Stickiness [an Overemotional attachment to others or "clinginess"],
Aggression; and
Altered sexualty [sometimes "Hyposexuality": no interest in sex].

Ellie gave a GREAT LINK to Eve La Plante's book Seized, because in that book there is a GREAT explanation, not only of Geschwind-Waxman's Syndrome, but also of Dr. Geschwind's earlier concerns.


From what I learned? Geschwind's Syndrome will be found with TLE (Temporal Lobe Epilepsy) (the subject of Eve LaPlante's book), though not all the time, and not necessarily all "5" character traits. And sometimes? Not at all.

I have Right Sided TLE, and the one trait that struck me the most was "Hypergraphia," the excessive writing. I've kept journals since I was in high school. I write for a living, now. Go figure... I don't keep them up so extensively anymore, except when I travel. Although the past several years (since my mom passed away) I started writing a LOT of stories. The wrtiting has proven to be very cathartic.

I think the hardest part with Neurologists "accepting" this theory is that Geschwind attempted to describe Temporal Lobe Epilepsy Patients as having a certain "personality" -- a "TLE Personality" -- characterized by these traits, right?

Doctors don't "go" for that stuff -- at least my Neuro/Epi sure doesn't -- even in the face of hard evidence. Of course, doctors often conveniently don't "look for" the evidence, you know? I mean, a Neuro will ask me "How do you feel." Doctors don't usually ask "Do you believe in a God?" or "Do you write extensively or keep journals?"

Of course, there is another reason that doctors do not want to "characterize" or "stereotype" patients with a set of personality traits simply because of a diagnosis of TLE.

Doctors quite wisely don't want to "stereotype" people with TLE, or people with any type of Epilepsy. The reason for this is because, at one time, people with epilepsy were simply put into insane asylums. (Scary, huh? )

We were FINALLY recognized as not having a "mental illness," so it was really controversial for Dr. Geschwind and his assistant to develop this theory when they did. His assistant, Dr. Waxman, developed this theory sometime in the 1950ies.

That's what I was trying to point out.

It would be a frightening thought to think of very good teachers and other professionals unable to practice their profession, because they were in Insane Asylums, which is how people who had Epilepsy had been treated. Now I KNOW that was a LONG time ago, but, nonetheless, the stigma lingered [lingers?]

So, as you can well imagine, Geschwind, for the time he was in (1950ies???) found himself to be one heck of a dilemma, huh?

However, the theory has always struck me as an interesting one.

Betty Anne

[MRFurr]

Hi Ellie, Julie and betty-anne,

Thank you for your wonderful reply's and respones.

Ellie, I am do not know what AED is, can you please explain? (I may know it-just not by that)

I read the book Seized by Eve LaPlante, last month, I found out about it after I started doing my research. It was great, and in every chapter-I thought I was reading about my mom.
A bit of history:

According to the family, when my mom was about 3 or 4 years old, she was jumping on the bed and fell off and hit her head and became unconscious for a long while. (maybe 30 minutes or longer?)no one remembers-anyway, she came back around and got up and no one took her to the doctors(remember, it was 60 some years ago.) Soon after she had her first seizure-and have been having them ever since. She has Absense seizures and Tonic-clonic seizures. I know she takes Dilantin and Phenobarbital, and she might take some others-but I really do not know..

She has great doctor care and I think I can rule out Dementia type issues. However, she does have other things going on-she has neuropathy and RLS

I have Neurological Celiac disease, and I think she may to, but she refues to get tested for it. And that may explain alot.

However, it does not explain the bulk of it, she is anti-social and everyone who knows her has said something about mental illness regarding her and her behavior/personality. She has been "strange" and can rage and become very childlike in her behavior when she feels wronged, it can be a real or imagined issue. and it can last weeks and /or months. She has been very difficult to deal with all her life. As I read the book Siezed, I see alot of the traits in her.

I am looking into this now because she is getting worse, and I am afraid for her and my dad, they live in isolation and do not get out often. That they live so much to themselves may be a good thing-she and my dad feel safe and love where they live, but pretty soon, I will be the one to care for them and the property. And the situation scares me...She is still having seizures and my dad is not able to cope much longer, as he is getting older and not as able to do things himself.
Sorry this is so long, so I will stop now, and hope you can shed some light into this and help me out.

MR

[Ellie]

Ellie, I am do not know what AED is, can you please explain? (I may know it-just not by that)

I know she takes Dilantin and Phenobarbital

Those I normally type AEDs because I am just too lazy to spell it all out, hehe. Basically, I was asking what she took to control her seizures - but in a lazy way.

Thank you so much for sharing, and remember when you are here this is your home and you can write as much as you like, so never feel like you have to stop yourself.

Also, you mentioned you have Celiac Disease. I wanted you to know that we have an area of this website for Gluten Sensitivity and Celiac Disease if you are ever finding that you would like some support. HERE is the link to that area.

From what I've read of your story, this could very well be what you had assumed. However, I assume since she does have a good provider this was done - but going back to a head injury as a child, they did do the proper testing to check for any brain damage cause from head trauma, right?

Our darn brains can be so tricky and one disease will seem sooooo similar to the next. If it weren't for the internet, I'd hate to imagine where I would be now. I'd probably be with the same goofy doctor wanting to treat my 'headaches' (which was Trigeminal Neuralgia) with botox injections in my face! :O

I'd personally love to hear more about this and your/your mothers story. I've been reading as much as I can about this, because as mentioned - I am rather new to the topic. I am very interested in it though.

Thank you so much for coming here to share this with us.

*Hugs*

You're a great daughter, your parents must feel so blessed to have you around.

[MRFurr]

Ellie,

Thanks Ellie, Well-I have to tell you-I am their daughter!
M R is my first and middle initial of my name-my friends and family all call me MR, it stands for Mary Rosser ('cause it is too long and/or people have a hard time remembering the full name and no one wants to be bothered, I guess)
Sorry-I hope I have not hurt your feelings or made you feel bad. I have been MR my whole life...I should have know that in cyber space it may be confusing.

Quote;

they did do the proper testing to check for any brain damage cause from head trauma, right?

No, I do not think anything was done at the time of her fall. LIke I said, she just got up and went on with life-until the first seizure.

On Monday I see one of her doctors, I am going to her doctor to tell her (the doc.) what I have found out and to see if she will help me to talk my mom into seeking help.

I realize that if it is Geschwind, there is no cure, but behavior and cognitive therapy can help, and maybe a tweak in her medication. And hopefully bring much need peace and understanding to this-something we all need.

Well, it is getting late, so I will close for now, but come back tomorrow.

MR

[Ellie]

Oh gosh, *blushes* - I thought MR and then thought "Mister". I edited my post, sorry about that.

I did want to say though, that when I asked about the head injury and testing for such - Are her doctors aware of this injury when she was younger, and anytime between then and now have they checked (via CT Scan, MRI, MRA, etc.) for anything.

I understand how you must feel when thinking of something 'without a cure' however, sometimes there are alternate methods to at least mask or treat the symptoms. I'm unsure of her current medical state, but ask her doctor about Inositol (this is over the counter) and maybe it will help with any anxiety and/or uneasy feelings. Even an altered diet may help some.

Make sure you update us once you hear something!

[MRFurr]

-

Are her doctors aware of this injury when she was younger, and anytime between then and now have they checked (via CT Scan, MRI, MRA, etc.) for anything.

I do not think so, Ellie, The story about her the head injury came from my cousins and aunts. I one time asked her how her epilepsy came about, and she said that she could not remember, since she has had it all her life. She thinks it just happened. I got this head injury information just within the last several years, and I have not told her what our cousins have said.

I will ask the doctor about the Inositol. Personally, I think if she is also celiac, (and I am going to ask the doc. about that too) then the diet can help on many levels-including her cognitive decline, her rages, her seizures and the RLS and PN-but my mom is stubborn! and she will not go on the diet!

Talk with you later!

M R