New to CWE. Friendly hello.

[AnneN]

Hello all, I was diagnosed with Grand Mal as a child, and i am in the process of being diagnosed with Temporal Lobe Epilepsy. I am wanting to get in contact with others who have TLE, especially those who have had symptoms of TLE personality or Gershwin Syndrome. I pretty much tick all the boxes of Gershwin. I am going to really control how much I write here as I tend to go on a bit when I type! Hope I can find some forums that deal with my stuff. Cheers.

 

[chmmr]

Hi Anne, Welcome!! I think you'll find this is a great place to get info and be around people that "get it"!!

I don't have TLE, but my daughter does.

Welcome to CWE!!

 

[AnneN]

Thanks for such quick reply

Thank you, I thought it might take ages for a reply, I'm in Australia - and I thought you would all be asleep! I'm pretty sure I had TLE as a child and got Grand Mal when I was a teenager, so it must be very hard to have a child with TLE. My mum tells me I was always lovely, but strange as a child. Hope your daughter is coping ok.:hugs:

 

[arnie]

Hi Anne, and welcome! I've been diagnosed with TLE for just over 30 years, but have probably had it for much longer than that, but had never had a witnessed tonic-clonic seizure (grand mal) so was not diagnosed. I'm pretty certain I had had a number of simple partial seizures but they were mild enough that no one really noticed or thought anything about them.

(As a side note, I think you mean Geschwind Syndrome. Gershwin was a composer. )

Welcome again! Glad you have joined the group!

 

[rich956]

AnneN welcome to a super forum.there are/is someone on here pretty much all the time and were all here for each other.
Cheers

 

[AnneN]

Thanks guys

Thanks Arnie & Rich,
its great to know there are people out there who are here to help. Arnie, can I ask you how you were diagnosed as TLE? Was an MRI scan used or did they just ask you questions on your experiences and give you questioner tests. I have heard that people with TLE sometimes have reduced size Hippocampus and this is a way of diagnosing. I have read the great book called 'seized' about TLE and creativity and in that book it says that the only true way to diagnose is by planting electrodes in the deep brain tissue (e.g.: invasive brain surgery). Of course I would not want to go down this path, but I have to have a true diagnosis for Australian medical insurance. Also Arnie I would like to ask you about Auras, do you have these? I get frequent skin sensory auras - where it feels there are little bugs crawling all over my skin. I also have sleep paralysis which include quite strange hallucinations. Do you know of anyone else with TLE who might have these experiences. And YES Geschwind, not Gershwin!!! HAHA! my bad. Cheers guys, Anne.

 

[epileric]

Welcome AnneN.

I don't know why the book would say that the only way to diagnose someone is with the deep brain electrode implantation. In Canada I was diagnosed with an EEG which records the electric brain waves as well as observing me during seizures.

An MRI is like taking a picture of your brain which might possibly show you what is causing the seizures but won't record the seizure like an EEG.

Also, I don't think that deep brain electrode implantation is considered invasive brain surgery (I could be wrong). I'm due to get it done in a month or so & what they do is drill tiny holes in your skull that are so small they don't even have to shave your head. The electrodes themselves are about the size of the ball in a ball point pen so the holes are tiny. I'll probably be able to give you more details after it's done. So far it sounds like the hardest part is going to be weening me off my meds & provoking a seizure while I'm hooked up.

 

[CQ:)]

Hi Anne,
Welcome to CWE from a fellow Aussie.

I don't know much about Geschwind Syndrome but I have left temporal lobe epilepsy.
I had my 1st Grandmal Seizure (Now known as Tonic Clonic seizures) when I was 9 months & had regular Grandmal seizures until I was around 3. I went 21 years seizure free until I started taking seizures again in May 2002 when I was 24.

On the day my seizures returned I was sent to hospital after my Mum rang me & I wasn't making any sense. I ended up having a Tonic Clonic seizure in hospital & the drs realised my seizures had returned. I spent the night in hospital & I was referred straight to a neurologist who I saw the day after the seizures returned. At my 1st neurologist appt he did an EEG which showed seizure activity & he believed I had at less 3 seizures the day before.
I had an MRI in June 2002 , the MRI showed scarring on my left temporal lobe which is how I was diagnosed with temporal lobe epilepsy. I had a few MRIs after that over a period of time, all the MRIs showed the scarring on my left temporal lobe.

After my seizures returned I mainly had auras & complex partial seizures (I only had about 3 TC seizures in 10 years).
My neurologist tried me on 5 Anti Epilepsy Meds, none of which helped control the partials so at the end of 2009 he suggested I look into surgery. I was referred to an epiologist in Melbourne who I saw in mid 2010, after going though a series of pre surgery tests in 2010 I was accepted to have surgery.
I had my surgery in March 2011 where the neurosurgeons removed the scarring where the seizure activity came from.

I have read the great book called 'seized' about TLE and creativity and in that book it says that the only true way to diagnose is by planting electrodes in the deep brain tissue (e.g.: invasive brain surgery). Of course I would not want to go down this path, but I have to have a true diagnosis for Australian medical insurance.

I'm curious as to what you mean by true diagnosis for Australian medical insurance, it isn't compulsory here to have medical insurance. Are you referring to Medicare which is part of the governments health system or are you referring to private health insurance under a health fund?

 

[AnneN]

Hi CQ, yep your right I should have been more correct in the 'insurance' terminology. When i was writing the post I thought I should discuss it in more 'American' terminology so I said insurance. I am in the process of getting a disability support pension from the government and they require neurological reports and diagnosis for this to happen, I am seeing a Neurologist in Perth (I live in a regional area) in around a month - the waiting list is long if you are on benefits. I was wanting to know what to expect when I see the specialist and what test they will complete. CQ when you say you have complex partial seizures, what do you mean? And also are you now diagnosed with both Grand Mal and TLE, because I have read that you can have TLE (localized seizure) that then turns into a Grand Mal (general seizure) - so technically you would be just diagnosed with TLE..hope this makes sense. Thanks for sharing. Hope everything has been good since the surgery.

 

[CQ:)]

Hi Anne,
I am in my mid 30s & I was 1st diagnosed with epilepsy as a baby & only took tonic clonics (back when I was a baby they were known as grandmal). I took tonic clonics on a regular basis but stopped taking them when I was 3 but kept on meds until I was 7. I believe my drs thought I had outgrown my epilepsy but as I said my seizures returned in 2002 when I was 24.

I remember when I 1st joined this forum (6 years ago) a member said to me it is possible for your epilepsy to go into remission so I suppose I always had epilepsy but it didn't come back to rear its ugly head until I was in my 20s.

There wasn't a lot of information about epilepsy when I was a baby as they didn't have the same technology that they have now.
With the technology available now the MRIs picked up the scarring which is why the neurologist was able to say I had temporal lobe epilepsy.
I live in NSW but Im in a country town (only 2 basic neurologists in the area) so had my surgery at the Austin Health in Melbourne & still go to the epilepsy clinic at the Austin for yearly follow up appts.
All the specialists I saw in Melbourne when I was going through my pre surgery test (epiologists/neurosurgeon) believe that the scarring was caused by the tonic clonic seizures I had as a baby but no one knows why I went so long between seizures.

I was one of the lucky ones who had a good outcome with surgery (unfortunately it is not the case for all people who have surgery) as I have not had a seizure since my surgery (it will be my 3 year anniversary in March).

I am in the process of getting a disability support pension from the government and they require neurological reports and diagnosis for this to happen, I am seeing a Neurologist in Perth (I live in a regional area) in around a month - the waiting list is long if you are on benefits.

I tried for the pension twice & both times I was knocked back. The 1st time was in 2004 after my job was made redundant, back then I was told I could still work so was knocked back.
The 2nd time was in 2010 when I was going through the pre surgery tests & I was having trouble working because my partials were out of control & I was dosed up on meds (before my surgery I was on 3 meds, now im down to 1). The 2nd time I was told that my epilepsy wasn't classed as treated until I had the surgery, that p***ed me of because in my eyes my neurologist had been treating me for years but we just couldn't find anything to help with the seizures which is why we talked surgery.

In Centrelinks eyes epilepsy is a medical condition & not a disability so it is very hard to get on the pension with just epilepsy. You should have a medical report for your specialist to fill out which will be given to Centrelink & an expert in the disability area will assess the report. I don't know if it has changed much over the years but it used to go by points so what your specialists puts on the report can really help with the assessment.
Good luck with your appointments & getting the pension.

 

[CQ:)]

CQ when you say you have complex partial seizures, what do you mean? And also are you now diagnosed with both Grand Mal and TLE, because I have read that you can have TLE (localized seizure) that then turns into a Grand Mal (general seizure) - so technically you would be just diagnosed with TLE..hope this makes sense..

There are so many types of seizures & a tonic clonic (used to be grandmal) is a type of seizure.

A complex partial seizure is also a type of seizure which I think is a common for people with temporal lobe epilepsy (there are other members who will be able to correct me or explain it better).

Seizures take many forms. Before your doctor can prescribe the right treatment, he or she must figure out which type (or types) you have.

Seizures are generally described in two major groups of seizures, primary generalized seizures and partial seizures. The difference between these types is in how and where they begin. A new way of naming seizures has been developed by epilepsy specialists, but most often these common names are still used.

Primary generalized seizures

Primary generalized seizures begin with a widespread electrical discharge that involves both sides of the brain at once. Hereditary factors are important in many of these seizures.

Partial seizures

Partial seizures begin with an electrical discharge in one limited area of the brain. Many different things can cause partial seizures, for example head injury, brain infection, stroke,tumor, or changes in the way an area of the brain was formed before birth (called cortical dysplasias). Many times, no known cause is found, but genetic factors may be important in some partial seizures.

Partial seizures can be broken down further, depending on whether a person's awareness or consciousness (the ability to respond and remember) is affected. Click on the names below for descriptions and details about each type.

Descriptions and Details for Seizure Types

Primary Generalized Seizures

Absence seizures
Atypical absence seizures
Myoclonic seizures
Atonic seizures
Tonic seizures
Clonic seizures
Tonic-clonic seizures

Partial Seizures
Simple partial seizures
Complex partial seizures
Secondarily generalized seizures

https://www.epilepsy.com/epilepsy/types_seizures

Complex partial seizures affect a larger area of the brain than simple partial seizures and they affect consciousness.

During a complex partial seizure, a person cannot interact normally with other people, is not in control of his or her movements, speech or actions; doesn't know what he or she is doing; and cannot remember afterwards what happened during the seizure.

Although someone may appear to be conscious because he or she remains standing with their eyes open and moving about, it will be an altered consciousness—a dreamlike, almost trancelike state.
Often accompanied by movements called automatisms. These may include chewing movements of the mouth, picking at clothes or fumbling.
A person may even be able to speak, but the words are unlikely to make sense and he or she will not be able to respond to others in an appropriate way.

Although complex partial seizures can affect any area of the brain, they often take place in one of the brain's two temporal lobes. Because of this, the condition is sometimes called "temporal lobe epilepsy."

http://www.epilepsyfoundation.org/aboutepilepsy/seizures/partialseizures/complexpartial/

After my seizures returned I mainly took simple partial seizures (also known as auras) & complex partial seizures.
With my auras I used to get a weird dream in my head which was always the same dream (it is hard to describe what the dream was because I only ever remembered it when I was having the aura), I would feel strange & have the urge to want to go to the toilet then I would have the complex partial. I usually never remembered anything from the time I 1st had the dream come in my head until after I had the complex partial so usually have to go by what family or friends witness saw or if I had one while in my own I just went on how I felt or if anything was out of place.

With my complex partials I have been told that I would either stare into space like I was frozen, not make sense when I was talking or would do strange things. An example of one of my complex partials is years ago I was out walking with 2 friends when I felt an aura (the funny dream), the last thing I remembered was the start of the aura while I was walking then the next thing I remembered was standing there holding a friends water bottle & my friends were standing near me. 1 friend was particularly concerned & told me what happened. They said I had started to walk around in a circle as if I was stomping on ants then I took their water bottle out of their hands. I remembered none of that but did wonder why I had 2 water bottles (mine & my friends) in my hand :roflmao:

I'm not always great at explaining things lol so I hope that makes a little bit more sense.

 

[Meetz1064]

Hello, and how

ya doing, Annie?

Welcome to CWE, and our great big dinner party here :bigsmile: You'll find that there are people here from all over the world...the US, Australia, the UK..even India and several other countries. Mr. B is a wonderful host, but I can't make coffee to save my life, so if you want some....look for BuckeyeFan, Eric or find the instant :roflmao:

CQ has done a wonderful job of giving you information about different types of seizures....there are about 40, I think, but for someone just learning about them, what CQ has given you is top-notch.

I've had E all my life, diagnosed at 13 months, mainly tonic clonics until about ten years or so then 3 more types showed up. All of mine are nocturnal, but are under control.

I don't know anything about Gershwin Syndrome....why don't you inform us? One of the mods here has a son with Lennox-Gastaut syndrome, are they similar?

It may help you to keep a diary of sorts, so that you can figure out what your triggers may be, if there are any. Yup, it can be annoying, but useful to you and your docs.

If you need anything, feel free to holler. We're all here to help :hugs:

Meetz
:rock:

 

[MAB]

I had an MRI 3 1/2 years ago that showed temporal lobe damage. They said I had a small stroke. I now wonder if it was really a stroke or if it was my first seizure or the first one I was aware of. I see the neurologist tomorrow and I plan to ask her opinion on this theory of mine.
I saw her the beginning of Oct. and she says I am having partial seizures. Sometimes I have either many close together or one or two and they last a long time (day or two, three.) It's hard for me to know. The auras consist of bad odors, usually a burning odor. Sometimes it's just a brief whiff but other times the odors last for a day or more. When they last a day or longer they change. They may start out as burning incense, change to burning pipe or cigarette odor and then change to an ammonia odor that almost burns my throat. I frequently feel a weakness in my left arm and/or leg but it can never be confirmed on examination. Recently I have also started feeling a strange sensation on the inside and outside of my throat. The skin on my throat will feel like I have applied Vicks Vapor Rub. I will feel exhausted during and afterwards for days. I am on 50mg of lamictal. I haven't had any long periods of smelling the burning orors, just a couple briefs moments last week. My left arm has been kind of quivering a few times also in the last couple of weeks but I'm not sure what that means.

It seems like since the doctor told me I am having seizures, I attribute any strange sensation to the possibility of a seizure.

Let me know if this needs more clarification.

 

[AnneN]

Geschwind syndrome and big thanks to supporters.

First of thank you all for your responses. I was diagnosed with Grand Mal when I was 12 years of age (I am now 41) and it sounds like there have been many changes to what things are called and classified. Even though I have been diagnosed with Grand Mal from an early age I have only just really found out about Temporal Lobe Epilepsy from a fellow artist friend, and gone 'well I have everything that she is talking about'. So now I am on my way to being diagnosed with TLE.
A few people above have mentioned that they don't know what Geschwind Syndrome is, this is a subject that I have become very interested in - as I believe I have it in big doses! The syndrome became known in 1975 when Norman Geschwind published a paper called "The interictal behaviour syndrome of Temporal Lobe Epilepsy" in the journal Psychiatry of 1975. It is important to note that this syndrome has some big supporters and some who want to discredit the idea. So, what is it? Geschwind is pretty much a behavioural syndrome where the patient presents with a number of extreme symptoms which include:
circumstality: or will talk non stop for long amounts of time, getting off the subject and then finally getting back to the original idea. During these moments the person will appear quite manic about the subject - like the subject is very important.
Hypergraphia: or has a need to write non stop, paint non stop, play music non stop - or have some creative outlet that allows them to focus on something artistic for long amounts of time.
Hyposexuality: or a non interest in sex.
Hyperreligiosity: or an absolute belief in some form of spiritual or religious idea. Normally to do with ecstatic experience, so the person wanting to have a spiritual experience with G-d or full on into meditation.
Hypermorality: or a belief that people should behave morally, or have very strong political ideas. This is normally linked to the above idea of Hyperreligiosity - so if you were heavily into Buddhism as a form of meditation then in Hypermorality you would be heavily interested in the idea of Karma.

So, thats Geschwind - strange...but true. When i came across this syndrome I just thought, 'well that ticks all the boxes for me'. I pretty much have all of these. In terms of my TLE I have Auras such as hearing musical notes, I also have skin auras - such as feeling like bugs are crawling on my skin (I have noticed its only on my right side). I also have very bad memory problems and have had bad periods of sleep paralysis with hallucinations. As you can see I have written quite a bit, i have a dying urge to write more, which is the hypergraphia kicking in - but i will stop. I don't want to appear too strange when i have only just joined the forum!!! Cheers to all, Anne.

 

[Nakamova]

Hi AnneN!

A belated welcome from me. Hope you enjoy CWE! It's been a great source of information and support for me.

Best,
Nakamova