Newbie with TLE

[ESG.TaniaJaye]

Looking back through my life there has always been something there. Mild. In the background. Numerous teacher comments about drifting off into my own world, sudden changes of direction in conversations, lots of de ja vu, problems with recurring migraines, nothing that really signified a problem, but maybe an indication of a predisposition to what was to come later on.

A ten year relationship which slowly turned hostile left me with a small amount of separation damage in my left temporal lobe, and at the same time of discovering this, a very small amount of scarring in my frontal lobe of the same side was also discovered which may or may not have been there previously.

The first indication that something was wrong and therefore prompted the testing and eventual discovery and diagnosis was a tonic seizure which took place on the morning of the 3rd December 2007 while I was driving my car, and was followed just over an hour later by a full tonic clonic at the Doctor's surgery. A week later I had more. I spent 10 days in hospital, 8 of these days I have no memory of due to ongoing status epilepticus which was unresponsive to emergency treatments. Their only option was full sedation as the seizures were wreaking havoc on my body. I lost almost 2 stones in weight in those ten days....and am lucky not to have lost my life at the same time.

Much of those first few months are a blur, and most of the rest is completely forgotten into the black hole of memories which seemed to have developed out of the blue at the same time.

I was originally diagnosed with Non Epileptic Attack Disorder due to the inneffectiveness of treatmet during that hospital submission, coupled with the stress of my violent homelife and regular overworking to avoid that homelife. It wasn't until several psychiatric and cognitive behaviour assessments had been completed over the following 10 months, that the idea of epilepsy was looked at again and further testing finally found the truth. temporal lobe epilepsy.

By this time I had left that relationship behind and found love. Real love. For the first time in my life I was with someone who really cared for me and accepted me. I am still with that special person now, and happier than ever.

[Rhea]

I, too, have temporal lobe epilepsy. Never knew it, just that something was "wrong". Same symptoms as you describe.I've only been on meds for about 4 months, and they seem to be working (trileptal) Glad you have found a diagnosis, it usually takes a while, with lots of misdiagnosis along the way. Learn all you can. Knowledge is power. Just make sure it is correct info. I'm still new at this and still learning all I can, to make my life as "normal" as I can. (Glad you have found real love. It makes all the difference in your life, to have someone like that)
Just out of nosiness- where in the UK are you?

[BuckeyeFan]

Welcome to CWE! My E is idiopathic, but their are plenty others that have temporal lobe epilepsy. I am sure you will learn a lot from them.

Glad to hear your life is going better now.

[RobinN]

There are many causes to neurological disorders. You can either choose to treat the symptoms or look for the underlying reason these are occuring.

After learning through trial and error on meds, a diagnosis of psychogenic non-epileptic seizures, amnesia, and horrendous side effects. My daughter is healing due to nutritional changes, vitamin and mineral supplements for brain and body health, and neurofeedback.

It isn't an easy or quick fix, but I hope and believe it will be a lasting one, with less or no side effects. My charts are proving that it works for her.

[wowthissuxass]

I have temporal lobe epilepsy as well. I just went to the doctor yesterday and scheduled my video eeg for the 18th of this month. Needless to say I am not looking forward to it. I think I would consider the surgery right now so I am not even sure why I am doing it. I guess so I will at least have some answers as to why the seizures are occurring. Either way, welcome to the forum, and I hope you find what you are looking for.

[Kansas Educator]

I too was diagnosed with temporal lobe epilepsy -- complex partial seizures -- in Oct. of 2008 at the age of 53! I too have sensed something wasn't quite right for some time but could never put my finger on it. Medication seems to have it under control so I hope you will have the same outcome. You've come to a good site for advice and support!

[skillefer]

Hi ESG! Welcome to CWE. Feel free to ask questions, chime in , or just vent when needed.