I would have said the best course of action would be to tell them that
*if* you have a seizure, not to panic or dial 911.  Do tell them what
*does* need to be done though, if anything.

My 12 year old son deals with his seizures considerably better than
the vast majority of adults around him.  His peers are usually better
at dealing with them than the adults.

Hello Tim,

I am sorry to hear this, but I am affraid there are still too many people
out there that do not really know what is happening with people suffering
from a grand mal / tonic clonic seizure experience. If they are not aware of
your condition, then there first reaction will most likely be to call 911.
Once I had my tonic clonic seizure, it happened nearby a busy cross road and
almost everyone stopped their car, stopped bicycling / stopped walking and
they all seems to call 911 (when the 911 operator did not pay attention, 10
ambulances should have come to rescue me).

My boss also suffers from similar symptoms (no epilepsy by the way) and once
I came in the office, my colleagues were on top of him to stop him shaking
all over his body while my boss was laying on the floor. Seeing that
behavior was not nice because you know that this is not part of "first aid"
in these kind of situation and I also thought that "this could happen to
me".

You can tell these guys what to do, trying to educate them, but there are
always people freeking out making things worse.

Cheers,
Marco

I expect you have a Medic Alert Bracelet, although they'd probably Still
call an ambulance anyway.

  About 5 years ago I found out the Toronto Ep. Association had business
cards whose Reverse lists--

FIRST AID FOR SEIZURES  -- the 5 items under that--> " Remain Calm -- let
the seizure run its course -- Protect the person from further injury -- Do
not put anything in their mouth --  Roll the person onto their side -- In
rare occasions, if the seizure lasts more than (RED TEXT HERE )  5 MINUTES
(end red text) or repeats, CALL FOR MEDICAL ATTENTION. "
  I had 3 of those cards plastic-coated for about 40 cents each -- I carry
One in the front of my wallet (where someone would find it if looking for
ID),  in the Front Pocket of my Shirt-Pocket  Daytimer/Calendar pad  (ditto
if looking for id.), and the third is just a spare.
  Places where I was having repeated seizures before I had control I told
the security guards there about the Cards and showed them one, since they
**hadn't had a CPR Course ( !! ).
   That won't prevent someone panicking  and calling 911 or ?? if they
don't look for ID. on you.   But maybe when we get Old, we'll appreciate
people who at least *care enough about our well-being to CALL for Help.
It's better than just stepping over us or thinking we're Drunk...    G./

Tim and all,
When my son was 28 he had his first seizure. His wife of 8 months was pretty
sure what was going on, got him to the floor, on his side, moved furniture
out of the way, called 911 and got dressed. Because he'd not had a seizure
before I feel that was a reasonable thing to do.

The firefighters/paramedics arrived and set out to assess whether it could
be caused by a blood sugar problem. Since his wife couldn't assure them that
it wasn't, they felt they needed to draw a blood sample then and there. He
was, by then, post ichtal, disoriented, and quite resistive of having a
blood draw. In the process they wrestled him to the floor, put a knee in his
back and got their damned blood. Guess what, no blood sugar problem.
Eventually they packed him up and took him about five minutes away to the
hospital where he had a one more seizure.

The really bad news is that in the process of getting the blood sample they
fractured several of his vertebrae. That has caused him ongoing pain, and
other limitations. He's somewhat better now, though a couple of inches
shorter, and will never be as he was.

He brought a lawsuit against the city paramedics. They tried to claim that
he must have injured himself in the seizure, that the kind of pressure they
applied couldn't have produced the kind of injury he had, etc. The issue
became whether they were following their own procedures. Apparently they
were. He lost the law suit, at considerable expense for expert witnesses.
The only good news is that the city has modified their procedures. I don¹t
know all the details.

Well, the other good news is that he is stabilized on his medications and
has no further seizures. And he has been able to put this horrible incident
behind him and not let it run his life now.

Does anyone know whether there are *national* guidelines a group of
paramedics could adopt that would have prevented this?

Anna