Temporal Lobe Seizures

[Harpo187]

I had temporal lobe seizures for 4 years frequently. I did not know they were seizures. I was very afraid I was having mental issues and I did not tell anyone about them. Something finally "snapped" is the only way I know to describe it leaving me feeling like I had brain damage. I did not feel the auras any more but it left me feeling numb and with no emotions. My head feels "light" inside like there isn't anything but air in my head. It is a horrible place to be. I feel as if I died inside. If anyone has any insight and believes there is treatment available I would really appreciate hearing from you. Thank you.

[DK00]

Hi there.  I wanted to to write and ask if you have seen a neurologist in the 4 years that you have been ill.  I was diagnosed with epilepsy about 2 1/2 years ago; however, I suffered with seizures that went undiagnosed (not for lack of seeing numerous doctors and great effort on my part) for approximately 2-3 years prior to that. (Unfortunately, I have another chronic neuro-muscular disorder which really messed up the works in getting my epilepsy diagnosed.)  Once I found the right neurologist who listened, I was immediately diagnosed and confirmed same with abnormal EEG's, showing the misfires in the temperal lobe.   My diagnosis is temperal lobe partial complex seizures.  There are classic symptoms to this type of seizure disorder.  Many people mistakenly think that seizures are always the grand mal type seizures but, as you know, that is not true.  Like you, I develop an aura immediately before a seizure and feel distant - outside of myself and then I lose all awareness of time - When it happens, I can look at, for instance,  a coffee table and know that it is a coffee table, but think that I am really looking at something else.  It is so hard to explain what your brain is making your eyes see.  It's like your mind is playing tricks - and actually, it is... I don't black out, but afterwards, I don't remember a thing and am so tired that I just fall asleep wherever I am. .   I have been told that I slur my words, my balance is off, there can be body action repeativenes, I'm unable to have any kind of fine motor skills at all, i.e. typing on computer, writing - it all comes out as nonsense, as well as the nonsense I verbally babble!  Now, anyone who didn't know me or that I was ill, would quite likely think I  was incredibly incapacitated from drinking, i. e. alcohol.  

A website like the Mayo Clinic or Cleveland Clinic is  good site to look up this seizure disorder and you will see how very specific the symptoms are and gather a  lot of additional helpful, accurate information.

The good news is that there is such a variety of anti-seizure medications out there now.  Of course, everything has side effects, some less than others and medication has to be adjusted and the right one(s) found for you.  Sometimes it's necessary to be on more than one med. to control the seizures.  Sometimes, a medication might have be changed.  But, I'm here to say that I currently consider my epilepsy a non-issue.  As long as it is controlled with my med. and I'm not having seizures or unmanageable med. side effects, I honestly don't even think about it.  Of course, everyone reacts differently to medications.

That's why it's important for you to see a neurologist whose practice area is epilepsy.  If you've seen doctors and have not been helped, please keep trying.   In this day and age, you should not be suffering, nor putting yourself in any dangerous situations, such as driving and being concerned as to a seizure occuring.  If you have not seen a doctor for your condition, please do that.  I'm hopeful that a neurologist who specializes in the treatment of  seizures will be able to help you.

Good luck.  My thoughts are with you.

DK