I had a severe closed head injury at the age of 4 as the result of a
motor vehicle accident. Since then, I have had a number of successive
minor head injuries or concussions. In addition to having brain damage,
my eye was damaged and I had a number of broken bones in my leg. I
suffer from longstanding cognitive and visual effects. I also have a
neuromuscular disorder called myofascial pain syndrome (similar to
fibromyalgia but originating from specific muscles and having a
repeatable patterns).

I had one major seizure at the time of my
original injury/accident and the skeptical seizure patterns and symptoms
since then. The quick EEGs have always shown nothing. I was referred
for a longer video EEG study. I am on day 6 of this. Nothing has shown
up yet on the EEG. The doctor told me when she came in today that the
Techs were wondering if I was letting my imagination run wild when I
described what was happening because it was different each time. I have
gotten to the point where I feel absolutely crazy! I am only still here
(in seizure monitoring unit) because the worst has yet to come.

I
have spent a few minutes reading up on the information that the hospital
gave me about NES (non-epileptic seizures). The treatment that they
suggest includes getting psychiatric help,  behavioral therapy, etc. The
funny thing is that the reason that I came for the EEG was that none of
that helped to treat the symptoms of the physical seizure symptoms that
I was having.

This has really left me with more questions than
answers

I had an automobile accident in 2000.  I was told I was having panic attacks.  This continued for 5 long years until my husband left the military and we saw a different dr.  He IMMEDIATLY sent me to a neurologist.  When the results came back, I found that I WASN'T crazy.  Those feelings of being in a combination of dream/reality with an inability to respond and fixed staring wasn't panic attacks but temporal lobe epilepsy.  I'd stop breathing and became very aggressive if toiuched.  Afterwards I can sleep for up to 12 hrs, eat, and sleep at night as well.  I can't tell you how relieved I was to finally know what was going on.  I identify with you.  My head was slammed on the right side (which had crumpled inward) and the left and finally on the airbag. I was in ICU for 4 days and in the main hospital for 10 days.  I was lucky, as the EEG showed abnormalities, but don't be put off if it's normal.  Sometimes that happens with folks w/epilepsy.  My MRI showed scar tissue in the frontal lobe (seizure activity - not seizures), seizure activity in the occipital lobe, but I was having seizures from the left temporal lobe.  The brain doesn't like to be shaken...or stirred!  From what you are describing it sounds like seizures.  There are many kinds of seizures.  Here's a good article on causes, types, etc. http://www.epilepsy.org.uk/sites/epilepsy/files/leaflets/pdf/epilepsyaction_seizuresexplained_0.pdf  It has credit card/membership sections but keep scrolling down.  It's publication based in the UK.   I don't have photosensitive seizures, but I HATE flashing lights, flourescent lights (I wear sunglasses in this situation), bright lights, red lights in particular, and flickering lights.  If you are experiencing longer seizures than 5 min. or no break between seizures, this is called status epilepticus.  The definition is:  http://www.ncbi.nlm.nih.gov/pubmed/18360338   This is a serious condition and should be treated as an emergency.  Some studies show that a seizure lasting more than 5 min.  can start to damage neurons.  I've never had it.  They try to get it stopped w/aeds (anti epileptic drugs).  Another piece of advice.  Start a seizure diary.  List when, how long, and what the symptoms are.  If you can't remember, ask your mom to obsrve.  This will help the drs with the diagnosis.  Try to stay away from those lights, stress, caffiene, other drugs (the illegal kind...if you take them), and sleep deprivation.  Get plenty of rest as this is one of my triggers.  When I get sick, this is prime time for seizures.  These things are called triggers - things that might/do trigger seizures. There are many triggers and it's different for each person.  I would recommend NOT driving.  I can't drive (until this month...6 mo w/o seizures!!  That's never happened before!)  You don't want to hurt yourself or others.Don't let drs dismiss your symptoms.  Get an MRI.  It helped show what was going on w/my brain (scar tissue, malformed temporal lobe).  Some people have epilepsy with an undefinable reason.  Like I said, advocate for yourself.  I hope the info helps.  Good luck!

Dear Mona,

You're not epileptic.

You're just nuts.

Just kidding.

Whenever I have a seizure and get dragged to the ER I always get the same response "Well we know you have epilepsy, but we're damned if we know why.". "You had a seizure, go home and go to sleep." I could have told you that! Then I get a bill for fifteen hundred dollars for a piece of advice that I could have gotten from my next door neighbor.

Talk to your doctor and don't let him/her brush you off. There are about a bazillion causes of seizures and the car accident, of course, could be one of them. It certainly sounds like you share the same irritation that we all have. Look into some anti-epilepsy meds. Anti-seizure medications really s*ck, but they are a little better than the alternative. You may have to try a few different ones to find out which one you can put up with. Dilantin (phenytoin for those of us cheapskates) seems to work best for me these days.

I know this might not sound too thrilling, but you may want to consider giving up driving. I am not very interested in the thought of plowing into a light pole, or anyone else for that matter. Lack of fresh sweet corn in the big city is a problem, but it's a tradeoff for the access to easy public transportation.

Only one in twenty of us is photosensitive, but I must say "Welcome to the club!". In my case, a flash of light feels like a lightning bolt going off in my head. It's not an immediate trigger, but it can set one off in a couple of hours. I have to cover my eyes every time a firetruck goes by.

I wish I could offer you something that would make this new problem easier, but it's new, it's a problem, and you will need to learn to adjust to it.

A seizure is not as much fun as it looks like. Huh?

Matt