Dana,
I've had EP for 48 years. I know a few in the retirement center
where I live and I know hundreds in this group. I've been in the
group for 8 years I think-- maybe more. I have learned a lot since
then.
You may never know why you have EP. I never tried to find out.
I think the best thing to do is to accept that you have it and try any
thing that will control your szs.
The closest group is a couple hundred miles from me -- so unless I
start a group here-- I am satisfied to be in this group. Right now I
don't have the time or the energy to start a group.
When I was first diagnosed I had grand mal szs. About 15 years ago
they changed to more like complex partials. I don't pass out anymore.
My girls tell me that my brain is scrambled for about 2 days.
I'm very fortunate that I have never had many szs. I've been controlled
with Dilantin and Phenabarb for over 20 years. My last sz was 4 years
ago and before that was 4 years.
Tell us more about your self and your family.
Millie
----- Original Message -----
From: Dana Whiteford
To: epilepsy@yahoogroups.com
Sent: Monday, February 14, 2011 5:37 AM
Subject: Re: [epilepsy] Re: Thanks...more questions
I too am prone to having seizures if I don't get enough sleep, stress I think
may bring my seizures. When I do have seizures it's usually just when I'm about
to fall alseep. I've had epilepsy for 36 years and every test you can think of,
they don't know why I'm epileptic there is noboby in my family that is epileptic
thank God my kids arn't epileptic. all they know is my whole brain is involved
when I have a seizure so we found out I couldn't have surgery.
It's just nice to be able to comunicate with people who have the same thing
incommon with me. I don't know any epileptics at least I don't think I do.
________________________________
From: merisia.gutierrez <merisia.gutierrez@yahoo.com>
To: epilepsy@yahoogroups.com
Sent: Sun, February 13, 2011 8:12:16 PM
Subject: [epilepsy] Re: Thanks...more questions
I have been dealing with seizures for the last eight years, and I too are more
prone to seizures if I don't get enough sleep, my seizures actually started
after my dad passed away witch makes me belived believed they were brought upon
stress and anxiety but now since they have done all types of testing and not
able to find a cause.
--- In epilepsy@yahoogroups.com, "Steve" <stephenpales@...> wrote:
>
> Hi Janet,
>
> Welcome to the group! I've had epilepsy since just after high school coming on
>36 years ago!
>
>
> To answer a few of what you said. Yes, stress is a big cause of seizures!!!!
>Also, each of us are different in our light sensitivity. What brought on
>seizures for me where flashing lights, to much computer or tv. Bright lights in
>stores even! I would type you more but on Vacation in Miami now for 4 more
>nights. I will be back in Chicago Sunday night so will explain you more about
>this to you. Also, 25% of people with epilepsy can't get their seizures under
>control, just remember that. I was one of them till having surgery 4 1/4 years
>ago and have been seizure free since (so far). Again, welcome to the group! Take
>care, keep a smile on your face!
>
> Steve
>
> --- In epilepsy@yahoogroups.com, Janet Formichella <im22tired@> wrote:
> >
> > Thanks for your feedback. I have more questions. I can’t thank you
>enough for
>
> > your feedback.
> > 1)Â Â Â Â Â My son seizures almost always begin on Monday or Tuesday at
>school
>
> > between 7AM and 7:40 AM. What do you make of that? He also has an
>occasional
>
> > seizure on a weekend afternoon. But the majority are at school early in the
>
> > AM. Can school anxiety trigger seizures? Could something during his sleep
>be
>
> > causing the AM seizures?
> > 2)Â Â Â Â Â My husband thinks the seizures could be cause by watching too
>much TV
>
> > /videogames/computer time on the weekends. If he had a photosensitive type
>of
>
> > seizure would they occur while he was viewing these things? Or could they
>occur
>
> > 12 â€" 36 hours later?
> > 3)     He sleeps in on the weekend. He sleeps less on school nights
>because he
>
> > has school. He never appears tired in the AM. My husband thinks we
>shouldn’t
>
> > let him sleep in on weekends to keep every day the same. Would sleeping in
> > cause seizures
> > 4)     I am keeping track of his seizures â€" time, type, day of week,
>length
>
> > etc. I work at his school every other day. I even keep track of whether I
>work
>
> > that day (Most of them occur when I am not working although he completely
> > ignores ne when I am there)Â Should I be tracking food and hours slept as
>well?
> > 5)Â Â Â Â Â In answer to your question, My son has his seizure med levels
>checked
>
> > often (Trileptal and Depakote).  He also takes Magnesium, Riboflavin,
>MAxalt
>
> > melt and Zolfron for migraines and vomiting. He takes Adderal for autism
>and
>
> > ADHD,He takes clonidine for sleep  and he takes Zoloft for anxiety. The
>levels
>
> > of these meds are not checked. I think he is walking pharmacy experiment.Â
>Last
>
> > summer I wanted them to wean him off of the medications under hospital care
> > while videoing him and monitoring him with EEG to see where in the brain the
> > seizures were occuring. Â They said that hospital would not cover observation
>and
>
> > he could go into status elepticus and it would be too dangerous. He had a
>sleep
>
> > deprived eeg a few years ago and he is scheduled for another one in a week
>or
>
> > so. Is there other blood work he needs?
> > 6)Â Â Â Â Â The doctor did give me the packet on the VNS but there was no
> > information as to the percentage of success.
> > 7)Â Â Â Â Â My son was tested for gluten/casein sensitivity when he was
>first
>
> > diagnosed with autism. He showed no sensitivity, but we tried the
>restricted
>
> > diet for a while anyway. We never saw any improvement with the diet and
> > stopped. Are there particular food that do trigger seizures?
> > Would they show up immediately or the next day
> > 8)     Can anxiety trigger seizures. What other triggers are common?
> > Â
> > Look forward to hearing from you
> > Jan
> > Â
> > Â
> > Â
> > If you can find a path with no obstacles, it probably doesn't lead anywhere.
> > - Frank A. Clark
> >
> >
> >
> >
> > [Non-text portions of this message have been removed]
> >
>
__________________________________________________________
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