[Porkette]

Hi Folks,
For those of you who are willing to share any info of the do's and don't when you have a seizure please post so others can learn. It would be a big help if you would be willing to tell what type of seizure you have and the things you want people to do and the things you don't want people to do.
Thanks for sharing all your info. it can be helpful to others. May God Bless You!

Sue

[Porkette]

Hi Folks,

I have absence (petit mal), complex partial, and simple partial sz. Once in a great while a myoclonic sz. Here are the things I would want a person to do:

Stay calm
Let me just go about what I'm doing
If I'm having a myoclonic sz. just make sure I'm laying down or sitting
down so I don't fall or injure myself.

What not to Do:

Don't call an ambulance
Try not to be afraid
Never let a Dr. give me neurontin, tegretol, trileptal, or lamictal or I
become very sick.
Don't send me home from work.


I hope the rest of you are willing to share your thoughts and May God Bless You!

Sue

[southie]

Interesting thread Sue!


I suffer from birth defects (making it brief) which
causes me to sustain neurological issues including
Epilepsy - in turn I have multiple types of seizures,
all of them which may or may not generalize, which
may or may not go into status epilepticus (aka SE),
which may or may not result back-to-back seizures
whether of same type or differing type. Loss of
conscious is common as well as loss of memory.

I suffer from:

Tonic Clonic / Tonic / Clonic-tonic-clonic
Absence
Complex Partial
Electrographic
Simple Partial
Reflex - aka Gelastic: Laughing; Startle; Musicogenic
Non-Typical Absence
and there's more.

While the usual mode for Epileptic Seizures is 5 minutes,
but in my case if it lasts more than 10 minutes, call the
ambulance and do not let me sleep and keep me awake;
virtually the opposite of what is the usual standards for
a person with Epilepsy after a seizure, there's too much
danger involved on my end, and while it's natural for one
to go to sleep after a seizure; the hardest part is keeping
me awake.

I have a tendency of being very slurred in my speech,
being incoherent, disorientated, non-responsive, wandering,
and I need to be kept seated and awake until the Paramedics
or Ambulance Techs arrives and they will handle me from
that standpoint - I'm already on the database and they
know what to do as well at the Hospital. I'm classified as
level 4 - critical.

====================

However the good news is after all these decades, even after
two different HMO's twice in the past turned down brain surgery
decades ago - I may be able to have brain surgery coming up.
::: crossing fingers ::::
And if the surgery is ever done, it won't repair or restore the
brain / nerve damages that have already been done; but it
may slow or possibility cause healing of that which are about
to become damaged / destroyed. The surgery may reduce the
seizures I have (which have been on the increase), but they
are unsure if it would eliminate it entirely; there's a very high
chance I will most likely will always be on AEDs for the rest of
my life as always, however, there's a possibility they might be
able to LOWER the dosages where I won't have to take such a
high dosages; and what would be nice if I didn't have to take
so many either.

(Sorry for the long post)