# Temporal Lobe Epilespy



## Bedge (Nov 2, 2005)

Hey Guys!

I have to share my latest findings:

After a one off tonic colonic sezuire in Feb, I had a EEG and other tests in May. My EEG came back irregular indercating Epilepsy! Although when I asked my Neuro if my Panic Disorder, DP / DR symptoms of 7 years where related, he said no.

I decided this cant be right (EEG's don't lie do they? haha) and I stumbled on to a epilespy web site and I almost fell off my chair after reading about Temporal Lobe Epilespy. It's me!!! All over! Word for word every symptom (you don't actually have to have drop sezuires with this type).

I'm off to see a new fab Professor of Neurology on Thursday (two days away), and I am soooooooo excited! It might all finally be all over! I shouldn't be counting my chickens before they have hatched, but I just know it! This is what it is!

Has anyone had similar experiences?

Bedge


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## californian (Jul 24, 2006)

Bedge said:


> My EEG came back irregular indercating Epilepsy! Although when I asked my Neuro if my Panic Disorder, DP / DR symptoms of 7 years where related, he said no.
> 
> I decided this cant be right


well, your neuro sounds like he doesn't know what he's talking about. temporal lobe epilepsy has been directly linked with dp symptoms. dr. simeon's book talks about it in several places....even theorizes vangogh had dp because he had temporal lobe epilepsy...


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## Bedge (Nov 2, 2005)

I was given a un-offical diagnosis yesterday, as I have peaks in my left temporal lobe - think i am actually having Complex Partial Sezuires. But have to do a telemetric study to try and catch it in action to narrow it down.

It's all really huge. I have suffered with this for 7 years. I consider myself to be really lucky that I have a actual condition and I will now recieve treatment.


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## californian (Jul 24, 2006)

that, in a paradoxical way, is great news! more and more i think i ought to get a more thorough study of my brain done. but i have bad health insurance right now.

i wish you all the best in your treatment!


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## mas9997 (Feb 25, 2006)

Bedge,

What site did you come across on epilespy?

I wish you the BEST.

Please keep us posted.


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## Bedge (Nov 2, 2005)

Hey!

I am now on this site regularly - http://www.epilepsy.com. And that is the site where I just happened to put two and two together.

I'm having a 6 hour EEG in November. Am very excited to get the results! lol

Do you suspect you might have something related?


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## jen (Jun 20, 2005)

Hi Bedge,

I have been diagnosed with TLE since late last summer, quite a few months after learning about DP / DR and experiencing my heaviest 'downs.' PM me if you want more information about the process; the diagnostic process itself is slow and the treatment process especially so. After a year I am still fine-tuning my medications.

I am happy for you, in two ways: one, you have isolated a neurological network of your brain which might be especially conducive to treatment; yet, what is more, you have found a new vocabulary with which to express your own confounding symptoms. Websites like epilepsy.com are a great resource; hell, if I hadn't stumbled on THIS site two years ago, who knows where I would have ended up?

A few disclaimers however. I spent two weeks as an in-patient in the NYU Epilepsy Center with 24 hr video and EEG monitoring. You will be poked and prodded by nurses, attendants, interns, residents, most of whom will not have heard of DP / DR, nor will they understand your symptoms as you describe them. It has taken me months and months of word salad (as I like to call it) to communicate my experiences clearly and legibly -- maybe because they AREN'T that clear and legible to begin with, by their very nature. However that doesn't mean that what you are going through is not real. So be strong.

Second: please be patient, especially with yourself. Remember it is your body you are dealing with; there are no invisible microbes in your mind that you want to blast away. Respect what your body is going through even if it's acting out against the very medications that might heal it, or even and especially when your body seems to act against itself.

So far I'm continuing to manage my TLE and to fight through my DP / DR by way of medication, an incredible support network of friends, family and doctors (which took many years to build), and inevitably, my own spirit. PM me if you want to know more about the whole trial-and-error process of medication programs / a *community* of doctors you can trust / or whatever else. I'm here for ya.

~ Jenny


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## Bedge (Nov 2, 2005)

Hi Jenny,

Great to hear from you!

Everything you say if very true. I'm prepared for the wait to get everything sorted and I have decided to me nice to myself in the mean time. The last 7 years have been spent fighting and aruging with myself to simply get through it, as it seems that was what was expected of me (as I was only having 'panic attacks'). Not to mention, learning how to cover things up so it doesn't effect or bother others around me. Who would have thought Partial Complex Sezuires!

I so agree with now having something to call my condition! Although I don't think my family really quite understand what is going on. I feel my mum is in a bit of denial. And I think she thinks my 6 hour EEG will dis-credit my inital EEG. haha. It must be hard for her, I just hope once my new EEG results come back she might be able to see things for what they really are.

When I started with my DP / DR 7 years i could not discribe them to anyone. I had no idea what was happening or why. Now, I tend to think my 'sezuires' have changed, but I think it's me that has changed. I am now more tapped in to whats happening, and my DR / DP is actually Aura / Simple Partial Sezuire, which may spread into a Partial Complex Sezuire. So I to am slowly learning how to say things to people in a way they will understand. Although my current Neuro had a giggle at me while I tried to discribe my DP / DR to him!!! I got tounge tied!

Thanks for your advise and comments. It means a lot. I think the main thing at the moment is for me to be nicer to myself. I have decided that I have to listen to myself more often, rather than listening to everyone else.

Thanks again.

Bedge


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