Aura + TLE + Organic Mood Disorders is Me!

[Bedge]

Hi!

I usually just come to the chat room, although it seems I have been forced to introduce myself here in order to get back in to the chat room. haha. Kinda funny, but maybe its for security .. so that's all good,! 

Anyhoo .. so, I am 29 girly ... I have a 12 year history of Neurological weirdness. I always 'presented' with a mood disorders (anxiety, agoraphobia, depression, depersonalization bla bla), so I was always put in the Psychiatrist basket. I was young, I trusted Dr's, I did as they said, nothing ever really helped ... but deep down I knew something was wrong.

8 years later (of hellish hell, the worst type of hell), my life was slipping away on all accounts. Many Neurologists treated me like dog poo. I finally got something ... we figured out I was getting some sort of 'aura' in the way of depersonalization and derealization that wasn't mood disorder based. It was and is Neurologically based. The last four years have revolved around .... nothing much, just trying to live. But it hasn't worked quite well!

So I am back to the drawing board. Temporal Lobe Epilepsy has been something that has been investigated as I get attacks (which present as panic attacks, but they are just sooo not panic attacks), but not confirmed due to test results. My Neuro still isn't sure. He hasn't discounted it but its keen to make a judegment call on it. Really helpfull, huh? And he is one of the NICE Neurologists!

TLE is back in effect, starting meds for that next week. Spent 10 days at a mental health hospital at the beginning of July (it was good, and bad .. but generally good), Organic Mood Disorder is now being assessed, with bipolar-ish aspects. Neuro testing will be starting up again, which I strangly enjoy as I find it so amazing and facinating. Can they really see in to my brain? Really lol

Anxiety is something that I battle with a lot. I have lived my life in sheer terror and fear for the most of these last 12 years, which is basically - my entire adult life.

I have a wonderful husband, our first anniversay is almost up! Two Jack Russells, and a wonderful family. Not many friends, a few - but, you know ... they do thier thing, I try to keep myself alive .. its that type of arrangment!

Anyhoo, I have started a blog. Its semi self indulgent, getting my stuggles out of my head and in to the world, and semi .. just my story, in hope it might help someone else, one day, so they don't have to go through what I do. If your interested, this is it: http://youcanstopnow.wordpress.com/

Tootles!

[sixpack]

hello Bedge

have you ever heard of PNES?   It is psychogenic NON epileptic seizures.  below is a link to one of the leading reasearchers involved in this topic.

 http://hsc.usf.edu/com/epilepsy/pnesbrochure.pdf

[Bedge]

Hi Sixpack!

Thanks for that, I have heard of them. But Im definatly in the TLE range, if anything ... its just im not 'typical' in my symptoms. So its just a matter of trying to find the right help, someone who is willing to work with me rather than against me. 

[sixpack]

my daughter has epilepsy.  It started in the temp lobe but now all over.  Have you had all the tests etc that shows it is tle?  I'm just trying to understand if you have it, you are not on seizure medications?

oh wait I see that next week you are starting anti-seizure meds?

[Bedge]

Oh jezz .. Im sorry to hear about your daughter.

Well, I have had a MRI and Angio CT, and three EEGs ... my first EEG showed up some spikes in the left Temporal Lobe. But, I was seeing a not so good Neurologist at the time, he eventually decided I had Somatoform disorder (which is when you are basically making it up, but dont know you are) and then his dismissed that EEG as a 'mistake'. That just makes so much logical sence, doesn't it! My symptoms are TLE, apparently one of the EEG's showed peaks .. but naaa .. Im just making it all up.

That original EEG seems to be missing in action. Its got lost, as it got passed around. So I am tasking my GP to find it. tee hee hee.

The original EEG was the one with the flashing lights, hyperventilation, all that kinda stuff. The other one was a VEEG and the second was a four day ambultory. With the last two, I felt fine. Nothing to report. With that first one, I did NOT feel good. I knew I felt weird and was experiencing 'symptoms' during it. So I wanted that EEG looked at with fresh eyes. Which is what I am going to do.

The whole thing is just so wishy washy, and because Im not exactly typical, and because my emotional / mood disorder is more pronounced, I have always got past off as a mental case.

Shrinks have assessed me. My attacks are not panic or anxiety. My 'mood' has been attributed to a organic mood disorder, due to Neurological issues, which is apparently very common with TLE. Temporal Lobe = emotions.

Im ramping up again for my second round of getting diagnosed. I have my GP, Shrink and my Neuro on board. My Neuro isn't sure what to make of it really. I am going to see a Epileptologist, as they would be more aware of the grey area and should be able to make some kinda sence out of it.

So my case is mounting! Im going 'in' fully prepared this time around. All I want is a diagnosis, its been 12 years. Enough is really really enough. Strangly, a diagnosis would possibly be my greatest achievement in my life and it would be entirly positive! With a diagnosis, comes proper treatment, care and support. I no longer worry about what 'it' could be. I just know there is something wrong, and I want to give it a label.

[sixpack]

TLE  is definitely more of the sensory type seizures---at least a seizure will often start off that way then can move on to a more "conventional' type seizue---meaning ones that people see.  My daughter's are usually complex partials to tonic-clonic.  They can start anywhere in her brain now.  So I hope you get the answers that you are looking for.  I mean my daughter is "lucky" in the sense that her first seizure was a tonic-clonic. She has a dx'd brain malformation common for causing seizures and her standard EEG showed activity right off the bat.  She is unlucky in that her seizures are intractable--meaning that she still has break through seizures in spite of heavy meds.  But THAT is also common with her particular brain malformation.  I was just looking at her seizure book ( I keep track that way) and she hasn't had a seizure (that I know of) since 7/9!!! Woot!

Please let me know (PM maybe so that we don't accidently upest folks here) how all of it turns out for you.

[Bedge]

Diagnosed today with Temporal Lobe Epilespy.

We found that old EEG and it was definate epileptic activity. After 12 years, she confirmed TLE and discredited those prior Neuros.

[sixpack]

well good...  I guess    I assume then that you will be taking anti-seizure meds?

[tigerpaw]

I know you will find lots of support here. Let me remind you you can access the Chat Room, and talk live to some of us here!  A great resource for you. Also you can post your favorite picture in the Members Gallery. Lots to do here~