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@
> 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@
> wrote:
>
>
> From: 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@
>
>
> 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
>
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