Thanx Tammy. I will
Sent from my Verizon Wireless BlackBerry
-----Original Message-----
From: "uniquepnk tds.net" <Uniquepnk@tds.
Date: Mon, 27 Jul 2009 14:38:00
To: <epilepsy@yahoogroup
Subject: Re: [epilepsy] Need help understanding this...what do you think-
answering answer of (Tristan Segraves)
jenandshadow,
I am glad I can help. I don't have a dog to watch over me, but when I go
places there is always somebody with me and since they have seen how I act
when I have a seizure they know what to pay attention for when I get ready
to have a seizure. I had surgery back in 2004 and before then I would be out
of it for days sometimes. I would have to sleep off every seizure I had and
they would last for up to an hour sometimes. The ones I have now I usually
can go back to what I was doing before I had it. Every now and then I have
one that takes a little time to recover from it.I do know that it does take
a lot out of you. As for doctors, I know they don't tell you things. There
is plenty of things I have learned right here and not from my doctor. Hope
you are doing ok today. Take care and write anytime.
Tammy
On Sun, Jul 26, 2009 at 10:02 PM, <jenandshadow@
>
>
> Thanx Tammy,
> I learn more here than at the doctors + tests. Yes...I think I have been
> trying to make myself listen to shadow + my healthcare workers more + more.
> It helps to have all of you who know so much more. There are days weeks +
> even months where I am down so long + have to crawl that we actually
> celebrate when I can be vertical again~jenandshadow
> Sent from my Verizon Wireless BlackBerry
>
> -----Original Message-----
> From: "uniquepnk tds.net" <Uniquepnk@tds.
>
> Date: Sun, 26 Jul 2009 21:38:06
> To: <epilepsy@yahoogroup
> Subject: Re: [epilepsy] Need help understanding this...what do you think-
> answering answer of (Tristan Segraves)
>
>
> jenandshadow,
>
> I have complex partial seizures. Sometimes I have the auras and sometimes I
>
> don't. It is hard to describe what they feel like. I just start feeling odd
>
> and my boyfriend says my eyes are glassy.I get a funny taste in my mouth
> too. The last ones I have had I have enough time to tell somebody the
> seizure is gooing to happen. If I am at home I go and sit down, when I have
>
> enough time.There has been a few times that I have tried to do something to
>
> get my mind off of it, so I wouldn't have it, but it usually doesn't work.
> It is great that you have a seizure alert dog to watch over and be
> protective of you. I used to not know when I was going to have the
> seizures,
> but most of the time, not always, I can tell. You and shadow both take
> care.
>
> Tammy
>
> On Sun, Jul 26, 2009 at 8:04 PM, <jenandshadow@
> wrote:
>
> > Complex partial I heard before--about a year ago. I will be feeling
> > completely normal-like one time I was going shopping with my healthcare
> > worker + somehow I was so sure I didn't need my wheelchair or walker +
> > against her better judgment I told her - they have carts @ FRED MEYERS.
> Half
> > hour into the shopping she asked me to sit down for my safety and asked
> me
> > wasn't shadow alerting. I was oblivious to all until my hips went out
> under
> > me-
> > She put me in a chair where I lay down on a table with shadow taking care
>
> > of me + vowed to listen better to dog + others no matter how strong I
> feel
> > So if feing like I can do it all is an Aura or warning - I need to
> > know-jenandshadow
> >
> > Sent from my Verizon Wireless BlackBerry
> >
> > -----Original Message-----
> > From: Tristin Seagraves <tristinspike26@
>
> >
> > Date: Sun, 26 Jul 2009 14:45:51
> > To: <epilepsy@yahoogroup
> > Subject: Re: [epilepsy] Need help understanding this...what do you think
> >
> >
> > Hi Jenn and welcome to the group. What kind of seizures do you have? Do
> > they come in clusters? The term "post-ictal" means "after seizure," so
> > post-ictal side effects happen after a seizure or a cluster of seizures.
> If
> > your seizures happen in clusters, then it is possible to experience
> > post-ictal characteristics and confusion between seizures. If you have
> > confusion and/or strange feelings before a seizure, it's probably an aura
>
> > (aka partial seizure). Auras are unique to each individual, and the
> > feelings depend on the part of the brain in which the seizure(s) is/are
> > coming from. When I have an aura (partial seizure, also called a
> > "warning"), I get an intense epigastric/gut rising sensation. I become
> > really aware of my surroundings. It's as if everything becomes crystal
> > clear, like an "ah-ha" moment, but in a scary way. It's difficult for me
> to
> > talk during an aura. I'll get hot flashes and a metalic taste in my
> mouth.
> > This all
> > happens in a very short amount of time. After the aura, I'll usually have
>
> > a complex partial seizure or tonic clonic seizure.
> >
> > Tristin :)
> >
> > --- On Sun, 7/26/09, jenandshadow@
> jenandshadow@
> > wrote:
> >
> >
> > From: jenandshadow@
> jenandshadow@
> > Subject: Re: [epilepsy] Need help understanding this...what do you think
> > To: epilepsy@yahoogroup
> > Date: Sunday, July 26, 2009, 3:40 AM
> >
> >
> > Hi, I'm new here in the last month + I go by jenandshadow. Shadow my
> > seizure dog and I go by Jenn.
> > I am so grateful to find all of you + that you let me join this group. I
> > have learned so much here that even the good DR's
> > don't explain. So I thank all of you.
> > Question, can post - ictal stuff
> > happen before a seizure or could I be having repeated small (absence,
> > etc...) Seizures throughout the day leaving me in a post-ictal state
> almost
> > constantly.
> > OR--as my Dr thinks--I may be having sleep apnea or seizures during
> sleep?
> > Dr plans to send me for a sleep study + also get me to see some really
> > good eye specialists.
> > Extra Info: Dr says I'm lucky, because patient's with "BEHCET's DISEASE"
> > who get seizures don't usually go blind + those who go blind don't
> usually
> > get seizures.
> > BEHCET's is a vasculitis disease I picked up in military service in
> Panama.
> > Vasculitis is where the veins swell up inside and out like the new athsma
>
> > medicine commercials show on tv. So when the vein closes up the area of
> the
> > tissues go without all tje vein would bring to it normally.
> > That's just extra stuff that may not be relative to my seizures.
> > BUT -I HAVE FOUND MY SEIZURE DOG WATCHING ME + LAYING NEXT TO ME TO KEEP
> ME
> > FROM FALLING OFF THE BED. HE USUALLY LET'S KITTY LAY THERE. I HAVE ALSO
> WOKE
> > UP WITH HIM SPECIFICALLY CHECKING MY BREATHING--WHEN HE DOES THIS (3x in
> 5
> > years I know of) HIS NOSE IS RIGHT AT MY MOUTH AND. NOSE ABOUT AN INCH
> AWAY.
> > BUT USUALLY HE JUST GETS UP NEXT TO ME TO BLOCK THE SIDE OF .MY BED NOT
> NEXT
> > TO THE WALL- Leaning on me-kinda like he climbs up on me in my wheelchair
> to
> > hold me from shaking off with his front paws on my shoulders + then
> leaning
> > in with his weight according to the need + back feet on floor.
> > If I am shopping - I don't notice his alerts before seizure so I don't
> > notice until he herds me to sit down.
> > That's why I asked if the post-ictal can happen pre-seizure, because I
> > have been corrected by trainers + others who know the normal seizure dog
> > alert is to lift up a paw onto a knee or something I've seen him do with
> the
> > trainer, but I've never been alert enough tO see it before a seizure. So
> > Shadow does what works.
> >
> > Sorry so long-so much to learn-jenandshadow@
> > Thanx for being here + your kindness+
> > Patience for all.
> > Sent from my Verizon Wireless BlackBerry
> >
> > -----Original Message-----
> > From: TIMOTHY BALDWIN <tbb1@prodigy.
> >
> > Date: Sat, 25 Jul 2009 23:39:23
> > To: <epilepsy@yahoogroup
> > Subject: Re: [epilepsy] Need help understanding this...what do you think
> >
> >
> > Hi Tristin,
> > Sometimes I don't know if I'm experiencing post-ictal memory loss because
>
> > most seizures occur when alone and I come out of it and no one else is
> > there. But, if a paramedic is there he might first say, "You had a
> seizure,
> > GET in the ambulance." Now I don"t need to get in to an ambulance
> whenever I
> > have a seizure in order for me to receive three bills for an unnecessary
> > ride. Billed by, Fire dept. for ambo. service, Hospital, and paramedics.
> > When if he would only ask me, Do you have diabetes? and if I answered Yes
> to
> > that it would be an emergency because low blood sugar can cause seizures
> and
> > death. Since I'd answer No, Afterward he should ask; Have you been
> diagnosed
> > with epilepsy? If No is the answer it may be an emergency! But, I'd say
> > Yes, and there's probably no need for a hospital visit. I'd like to ask
> him
> > for a Release of Responsibility form to sign which all paramedic have but
>
> > never offer to you. But after having a seizure I can't think of
> > the name to ask for. All they want to do is take you to the hospital so
> > that the fire Dept can bill you if they don't, their coming there was
> free.
> > Worse is if a police officer is there first, he'll ask me questions to
> > decide if the seizure was caused by alcohol or drugs, That requires allot
>
> > more memory use than just saying yes or no, he might ask, Can you tell me
>
> > the name of the current president? Can you tell me what location your at?
>
> > and others. And then if a paramedic arrives and you don't want to go to a
>
> > hospital. the police officer may decide that, "If its not medical, it
> must
> > be criminal". And then if you have medication in a pocket he'll charge
> you
> > with, Possession of Drugs. The police then take them to be used as
> evidence
> > and put you in a cell and if you are to take your medication you'll need
> to
> > wait to be taken to a hospital, it might be 12 hrs. and your therapeutic
> > blood level of those meds., drops straight down and takes many
> > weeks to get up to that point, and of course you'll likely have seizures
> > because of this. Title two of the ADA tells police not to prevent
> medication
> > from being taken by people with epilepsy, cardiac conditions etc..
> > Tim B.
> >
> > --- On Sat, 7/25/09, Tristin Seagraves <tristinspike26@
> wrote:
> >
> >
> > From: Tristin Seagraves <tristinspike26@
>
> > Subject: Re: [epilepsy] Need help understanding this...what do you think
> > To: epilepsy@yahoogroup
> > Date: Saturday, July 25, 2009, 8:47 PM
> >
> >
> >
> >
> >
> >
> > Sorry Rose,
> > Stupid computer! lol.
> > Yes. I can relate to your son's post-ictal confusion. When I have a
> > seizure or cluster of seizures my confusion can last a couple of days.
> One
> > time when I was post-ictal (about 24 hours after a cluster), I had to ask
> a
> > family member how old I was. I really didn't know until I asked. I also
> > experience a feeling of unreality. When I'm post-ictal, other than the
> > confusion, my surroundings look out of place and larger than normal.
> >
> > Hope this helps,
> > Tristin Seagraves :)
> >
> > --- On Sat, 7/25/09, rosecraigkatiezack <rosecraigkatiezack
> > wrote:
> >
> > From: rosecraigkatiezack <rosecraigkatiezack
> > Subject: [epilepsy] Need help understanding this...what do you think
> > To: epilepsy@yahoogroup s.com
> > Date: Saturday, July 25, 2009, 6:31 PM
> >
> >
> >
> > My son Zack is 14 years old. This last year he has had 2 episodes where
> for
> > 12 hours he gets diorientated and totally confused. He can not do simple
> > math tell you his age, what year it is, or remember event that happened
> an
> > hour before. This does not appear to effect his large motor skills. When
> he
> > goes to bed the next morning he is fine again.
> > We saw an nerologist who had us do an EEG....and although she is very
> > surprised he has Epilepsy and is concerned he is having more minor
> > seisures at other times. We are seeing her to discuss treatment next
> > Firday. Has anyone else ever had seizures present this way or confusion
> > lasting afterwards this long. I am feeling a bit overwelmed and would
> > appreciate any thoughts or advice. Thanks! Rose
> >
> > [Non-text portions of this message have been removed]
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> > [Non-text portions of this message have been removed]
> >
> >
> >
> > ------------
> >
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> >
> >
> >
> >
> >
> > ------------
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> > Just a friendly reminder: Please remember to sign your post and remember
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> > [Non-text portions of this message have been removed]
> >
> >
> >
> > ------------
> >
> > Just a friendly reminder: Please remember to sign your post and remember
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> >
> >
> >
> > ------------
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> > Just a friendly reminder: Please remember to sign your post and remember
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> > clean up messages when you reply to them. This is especially important if
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> > you are on digest. This not only helps out the list owner but, it makes
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>
>
> [Non-text portions of this message have been removed]
>
>
>
> ------------
>
> Just a friendly reminder: Please remember to sign your post and remember to
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>
> Yahoo! Groups Links
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