Fw: Re: [epilepsy] It happened again 4670

--- On Tue, 3/31/09, craig davis <ohs7778@yahoo.com> wrote:

From: craig davis <ohs7778@yahoo.com>
Subject: Re: [epilepsy] It happened again 4670
To: "No Reply" <notify-dg-epilepsy@yahoogroups.com>
Date: Tuesday, March 31, 2009, 11:20 AM

This notice is for anyone who has seizure conditions. It happened again. I ate some food with an M S G replacement additive that came from a can of Carnation Milk. No MSG logo or information was on the can. Last month I also had the same dish of food not knowing then what made me have the auras I had. At that time there were more foods which were made by different people. I ate just a little of everything as most things then must have had M S G in them. I felt bad for almost 3 full days then. Yesterday I had some of the same food. After eating the baked corn that was made with the canned milk.  I started to feel bad in 6 hours. I then realized I ate that same coen dish a month ago, thinking then the problem came from other food. I thought is was strange knowing it usually affects me within 9 to 11 hours later to start feeling bad. This time it was very noticeable as I only had the one food and I told my mom to read all the labels before she
buys something. www.sellingsalesmanship.com.msginfo.html That site will show all of you ALL the additives and replacement additives food companies use in place of MSG/MonoSodiumGlutamate. Just because something might read NO MSG !! or MSG FREE !! does not mean there is no MSG in it. M S G can cause seizures and auras in the brain. I would like everyone who is affected by MSG or parents to kids/infants to call our EFA who is looking out for us at 1-800-321-1000. If you believe the EFA really cares for us then I can walk on water. I have tried to get the EFA to do something about this MSG problem that I and "others" have to live with daily. There is no way that the FDA should be allowed to let this MSG stay in our food supply. But the FDA is on the side of the food corporations, drug companies and doctors. Why because they all get money through us who suffers from MSG, nitrates and other illnesses these two can cause besides seizures. You would
think the EFA would have some compassion about this but they never will until they hear it from everyone. M S G and nitrates may not affect your condition now. That does not mean it will not later in life with seizures or any other condition. www.fda.gov You all need to call the FDA as well on this issue. I have in the past and I was told I did not know what I was talking about as they never heard of MSG creating a seizure condition in people. I say the FDA and all the workers there should eat all the MSG foods first before anyone in the public digest them. WE ALL need to contact the EFA first, FDA second and NIH National Institutes of Health third at 1-800-411-1222 www.nih.gov The NIH now is doing a study on MSG and fibromyagia. I know what MSG can do. Hopefully none of you will learn the hard way as I have. By calling these numbers and keeping the phone lines hot about it, maybe something can get done to get MSG out of the foods we eat. I
can not do it alone as I will not by you all knowing who to call now. Get ready EFA we'll be calling you all there. 1-800-321-1000 www.efa.org Before phone calls are made, see for yourself if MSG and nitrates creates seizures in your life or in your childs life. I believe MSG is more dangerous to children more than adults as they will live a lifetime with seizures or something else, if parents are not warned about MSG and nitrates. Keep all the phone lines hot to these places. I'll call the FDA soon after I click send. Craig

--- On Tue, 3/31/09, epilepsy@yahoogroups.com <epilepsy@yahoogroups.com> wrote:

From: epilepsy@yahoogroups.com <epilepsy@yahoogroups.com>
Subject: [epilepsy] Digest Number 4669
To: epilepsy@yahoogroups.com
Date: Tuesday, March 31, 2009, 3:08 AM

There are 21 messages in this issue.

Topics in this digest:

1a. Re: Ever Have a Blood Test Lost?
From: mylmy@bnin.net

2a. Re: EEG results; seizure newbie(Jill)
From: mylmy@bnin.net

3a. Re: anyone pregnant/ have been pregnant?
From: petenlynds
3b. Re: anyone pregnant/ have been pregnant?
From: mylmy@bnin.net
3c. Re: anyone pregnant/ have been pregnant? Thanks:-)
From: lucy133_daisy
3d. Re: anyone pregnant/ have been pregnant?
From: Mary Allen

4. I was at an EFA lecture last week
From: no_seizures_since_surgery

5.1. Re: new member
From: mylmy@bnin.net
5.2. Re: new member
From: Kirsten
5.3. Re: new member
From: Tammy Wolfgram
5.4. Re: new member
From: uniquepnk tds.net
5.5. Re: new member
From: kteribond@aol.com

6. Epilepsy Research Results
From: Belinda Shale

7. Re: JILL [epilepsy] Re: EEG Result, seizure newbie
From: Uggie

8a. Re: Seizures and Medications
From: Karina Castillo

9a. Re: Does This Happen To You? [Annette]
From: TIMOTHY BALDWIN
9b. Re: Does This Happen To You? [Annette]
From: mylmy@bnin.net
9c. Re: Does This Happen To You? [Annette]
From: TIMOTHY BALDWIN

10a. Re: GOOD MORNING TO ALL
From: Kirsten

11. Re: drugs for seizures (Millie)
From: Jill Gunzel

12a. Re: EEG Result
From: debbie riley

Messages
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1a. Re: Ever Have a Blood Test Lost?
Posted by: "mylmy@bnin.net" mylmy@bnin.net mylmy
Date: Mon Mar 30, 2009 2:51 am ((PDT))

Traveling 2,

I would go to your second Doctor in a heart beat.
An office that can't keep track of their tests
would scare me to death.

Millie

> I was ordered on meds in January. I was instructed to come back in late
> March to have my blood levels checked. I called the office on 3/21 and
> there was no order on record. The doctor signed orders on Wednesday and I
> went in on Friday 3/20.
>
> I followed up Tuesday 3/24, and the test could not be found right away. I
> gave my cell for call back. I did not hear anything so I called back
> Thursday, 26. Still...no test found. I was then told it may have been sent
> to the doctors other office, so I called there. They had no record and did
> not think it would have been sent there, but would check. Again, left my
> cell phone for call back. No call from either office on Friday. I am going
> to make a point of it on Monday and make sure I escalate this to the duty
> nurse, but please....the lack of follow-up does not make me me feel
> better.
>
> I went to another doctor last month for a second opinion. He concurred
> with my current doctor and said that he was a colleague at another
> practice and I was in good hands. I really did like him more though
> becuase of his bedsire manners. I also had a list of quesitons that I
> brought and he answered them all.
>
> I am really thinking of switching over to the other doctor. This is my
> health and I really do not want to have tests being missed and then not
> getting an answer on why.
>
> What does the rest of the group think?
>
>

Messages in this topic (5)
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2a. Re: EEG results; seizure newbie(Jill)
Posted by: "mylmy@bnin.net" mylmy@bnin.net mylmy
Date: Mon Mar 30, 2009 3:04 am ((PDT))

Jill,

That is a good idea to get all the reports of whatever tests
he has.

When you have a GM sz your whole body's muscles stretch like
if they were doing an exercise they weren't used to doing.
That is probably why he was sore.

Millie

>
> Steve,
> Thanks so much for your reply and for taking time to think it through with
> me.
> And thanks for the offer to have my husband join. I think I'm the
> official family email support grouper. No one else seems interested
> (except my son, who is on a fishing group....but is that a "support
> group"?)
> I'm also on one for stroke survivors, thyroid cancer, restless legs
> syndrome, ovarian cancer, and tremors. Such fun!! I share responses
> with others, but they don't seem to want to write.
> I'm thinking you're right about the age factor with the soreness.
He
> was also exhausted from it. He actually took naps for the first time
> in his life, and seemed to need them. But he's almost back to normal,
> now.
> Your thoughts on whether the MRI possibilities could be significant
> enough to cause the seizure are what's been on our minds. Could the
> findings be important? All we know, so far, is that the ER doctor
> saw the CT scan and said, "There's no brain tumor."
> I immediately thought, "Maybe it's a small one and they just
didn't see
> it."
> It was as if he could read my mind, because he looked at me and said,
> "If a tumor had caused this, it would have been a BIG tumor, and we
> would be seeing it in a CT scan."
> So, I'm hoping he's right about that. If not, then you might be
> right, that we're onto something, with the MRI. Oh, one other reason
> I was sorta discounting the serious possibilities of the MRI, was
> that there was no differences in symmetry, no shift in position, and
> no mass apparent. So, it's just a brighter area. But hey, who am I
> to read a MRI report, right? :)
> You were right about the details I know. I'm a stickler for being a
> team player with the doctors. I always get my lab and diagnostic
> reports. Several times it's saved us from taking a wrong medical
step.
> Thanks again, for all your thoughts. :)
> Jill
>
>
>
>
>
> Steve wrote:
> Hi Jill,
> Welcome to the group! Sorry to hear your husband had his first
> seizure this month! First off, get your husband into the group
> (smile). Allot of what might be running through both your minds we
> call all relate to!, big time! You posted about specifics in great
> detail which a majority of us wouldn't have a clue about (smile)! As
> far as relating the details to basics as far as your husband goes I
> would think the following as far as what you described. As far as
> being sore for 3 weeks now. Might it be that when he had a grand mal,
> might it be adding his age, the stressful body movement together
> might be nothing more than pulling a muscle? I'm 51 and am pulling
> muscles allot more than when I was younger (smile)! As far as vein
> infections from the dye for an MRI. That would have nothing to do
> with a seizure or epilepsy. And as far as the fun test (smile) called
> a colonoscopy! I was put on meds. for a year after the results where
> found. But in a year was taken off it. That had nothing to do with a
> seizure or epilepsy either. And as far as the MRI results, might it
> be that what you described what might become a nasty tumor might be a
> possible cause for the seizure? Where the smaller piece found might
> be located in an area of the brain which caused electrical activity
> to be affected? Brain tumors can cause a seizure or seizures. Also,
> you said he had his seizure was in front of the computer. Seizures
> can be caused by a person who is more light sensitive. Such as
> flashing police car lights, constantly changing channels on TV or
> screens on the computer, oncoming traffic at night, the lights in a
> disco (ect). Those changing flashing lights is a common cause for
> seizures for a person with epilepsy. Also, stress is an easy way to
> bring on seizures for a person with epilepsy! You add all these
> different things together and just maybe, bits or a couple of
> different things might be what brought on his seizure, who knows?
> Just some thoughts. Get your husband in here if he could use support
> by friends as far as seizures, life, the meds side affects ect...
> Hey, we are nothing more than a group of people on this planet who
> can relate to each other so much (smile)! Take care, keep a smile on your
> face!
> Steve
>
>
>
> [Non-text portions of this message have been removed]
>
>

Messages in this topic (2)
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3a. Re: anyone pregnant/ have been pregnant?
Posted by: "petenlynds" petenlynds@yahoo.com petenlynds
Date: Mon Mar 30, 2009 4:26 am ((PDT))

--- In epilepsy@yahoogroups.com, "lucy133_daisy"
<lucy133_daisy@...> wrote:
>
> Hi all,
>
> I am looking for someone who is pregnant (or already has kids!) for some
advice.
>
> I'm 15 weeks pregnant, and on lamictal. Have already had one seizure
during the pregnancy, and would like some reasurrance/ advice from any of the
epileptic ladies here!
>
> TIA, Lucy.
> lucy133_daisy@...
>

Hi Lucy,

CONGRATULATIONS!!! I took Lamictal during my pregnancy 5 years ago.
I was very scared but that is the safest med to be on during pregnancy and has
the least side effects. I have a healthy beautiful little girl. I did not have
any serious complications. I had several small seizures during my pregnancy and
had no problems. I was treated as high risk they may treat you as high risk as
well. Prior to my daughter I had 2 miscarriages but at that time I was taking
tegretol and neurontin. After that my dr. switched me to Lamictal because I
wanted to try again and he said that it would be safer. Sure you will still
have a small risk of complications but it is very small. I'm sure they will
monitor you closely. I have a very healthy extremely intelligent child. They
were not certain if it was the meds or just my endometriosis. I know it is
nerve racking but remain positive and keep your chin up. My dr. also told me to
take extra folic acid. So I took double what you normally would take. Lamictal
depletes what your body naturally makes. If you were not informed of that ask
your dr. Make sure you continue to see your Neurologist as well as your OB. If
you are 15 weeks you are already at the safe point. Congratulations you made it
through your first trimester. The only thing that I found with taking Lamictal
during my pregnancy was that I had sleepless nights so I did a lot of resting
during the day. Lamictal can cause that anyway but I found that I had more of a
problem with it during pregnancy. Take care of yourself and remember to remain
positive. Listen to your body and do not over do it rest when you need to.
Take care and best wishes.
Lyndsey (smile)

Messages in this topic (5)
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3b. Re: anyone pregnant/ have been pregnant?
Posted by: "mylmy@bnin.net" mylmy@bnin.net mylmy
Date: Mon Mar 30, 2009 5:12 am ((PDT))

Hi Lucy,

Welcome to the group. I had my 1st sz when I
was carrying my 2nd daughter and my 2nd sz when
I was carrying my 3rd daughter.I do not remember
what meds the Dr. gave me. My daughters are all
near 50 years of age now.

The Dr. thought pregnancy and I didn't mix so I had
my tubes tied. When my 3rd daughter was 2 I had
another sz and that took me 30 miles away to the
closest EEG machine at that time. There I found out
I had EP, couldn't drive for a year and needed to be
on meds the rest of my life.

I've been on a few meds but now have been on Dilantin
and Phenabarb for over 20 years. Everybody has to find
the med or combination of meds for them. My last sz was
over 2 years ago and before that it was 4 years.

I do suggest that you use the brand name drug of whatever
your Dr.recommends. I also suggest that you keep a diary
of when you take your meds, when you have a sz. what happens
when you have a sz, how long the sz lasts and how long it
takes you to get back to your usual self. That will help the
Dr and you to see if there is a pattern.

I have learned so much from this group. Read all the letters and
you will also.

Millie

> Hi all,
>
> I am looking for someone who is pregnant (or already has kids!) for some
> advice.
>
> I'm 15 weeks pregnant, and on lamictal. Have already had one seizure
> during the pregnancy, and would like some reasurrance/ advice from any of
> the epileptic ladies here!
>
> TIA, Lucy.
> lucy133_daisy@hotmail.com
>
>

Messages in this topic (5)
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3c. Re: anyone pregnant/ have been pregnant? Thanks:-)
Posted by: "lucy133_daisy" lucy133_daisy@hotmail.com
lucy133_daisy
Date: Mon Mar 30, 2009 7:23 am ((PDT))

Thank you so much for your kind words and advice, Lyndsey and Millie!
I am also taking Lamictal, and feel so relieved to hear that you both have
healthy kids.
Had an ultrasound today, and it's a boy!
Am going to try and enjoy the pregnancy, and not worry all the time because of
the epilepsy.
Thanks again ladies:)
Lucy.

Messages in this topic (5)
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3d. Re: anyone pregnant/ have been pregnant?
Posted by: "Mary Allen" jake100036@yahoo.com jake100036
Date: Mon Mar 30, 2009 6:30 pm ((PDT))

hello, i have a daughter with epilepsy, she got this from a car accident when
she was 15. she didn"t have her first seizure until she was 18.   She
is now 26 and has had 2 children and one on the way. She has continued to take
1200 mg of lamictal a day, and is doing fine. The seizures were pretty severe
in the beginning, but are mainly mild ones every once in awhile. She currently
isn,t driving because her last big one was last July, and the state and her
family will not let her drive. I always worry about her and always will. It
is very hard to watch your child live this way, but i thank God everyday that
she is mine... Good Luck and Just have Faith,,,, God doesn't give us more
than we can handle,,,,,, with love and prayers,,,,,, a MOM

________________________________
From: lucy133_daisy <lucy133_daisy@hotmail.com>
To: epilepsy@yahoogroups.com
Sent: Monday, March 30, 2009 2:28:19 AM
Subject: [epilepsy] anyone pregnant/ have been pregnant?

Hi all,

I am looking for someone who is pregnant (or already has kids!) for some
advice.

I'm 15 weeks pregnant, and on lamictal. Have already had one seizure during
the pregnancy, and would like some reasurrance/ advice from any of the epileptic
ladies here!

TIA, Lucy.
lucy133_daisy@ hotmail.com

[Non-text portions of this message have been removed]

Messages in this topic (5)
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4. I was at an EFA lecture last week
Posted by: "no_seizures_since_surgery" stephenpales@yahoo.com
no_seizures_since_surgery
Date: Mon Mar 30, 2009 4:31 am ((PDT))

I was at a lecture Thursday night by the EFA branch here near Chicago. One
thing mentioned which I've heard many times before says so much in few
words. They spoke about after the first few meds tried and don't control
your seizures, the lower the chance of success in each new med. you try. More
and more they are suggesting looking into surgery sooner than ever before.
There are statistics of success you might be interested in asking your Dr. about
as far as the percentage of success going down each new med. you try. Maybe
those stats. could be found through the EFA? It was most definitely a very
interesting lecture followed by Q/A by 2 Drs. The subject was "Epilepsy and
Testing for Cognitive Deficits" And boy do I have cognitive deficits (big
smile)! Allot of us can truly relate to that (smile)! Take care, keep a smile
on your face!

Steve

Messages in this topic (1)
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5.1. Re: new member
Posted by: "mylmy@bnin.net" mylmy@bnin.net mylmy
Date: Mon Mar 30, 2009 4:42 am ((PDT))

Cathy,

Welcome to our group. I don't have any experiecne with
children but I have had EP for 46 years. I was diagnosed
(DX) when I was 30.

I have learned a lot from this group. Just read all the
letters. You will hear from many. There are 30 different
kind of meds. Your Dr. needs to find the one that fits
your daughter.

Keep on asking questions.

Millie

> my 7 yr old daughter was just diagnosed with epilepsy this past friday,
> she had 2 grand mal seizures in less than a week. I have been reading
> about the different meds and this is very scary!!!! I would love to hear
> from anywone who could give me advice, answers,anything!
>
> cathie
>
>

Messages in this topic (156)
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5.2. Re: new member
Posted by: "Kirsten" kirsty815@yahoo.com kirsty815
Date: Mon Mar 30, 2009 8:16 am ((PDT))

Hey Cathy,
My daughter is 6 and has had epilepsy since she was a month old. I can tell
you about our experiences with some meds. I know how scary it can be, but your
in a trial and error period right now to see what med will work best for your
daughter. The key is to find an epileptologist you trust and feel comfortable
talking to.

Meg started with Myoclonic seizures but they've always changed, she now has
complex partial seizures, she's been pretty well controlled on meds and
hasn't had a seizure since Aug '07'. Meds we've tried are
Phenobarbital, dilantin, tryleptal, neurontin, and Keppra. Right now she's
on 9cc's of Phenobarbital and 3cc's of Keppra 2 x a day (we're
currently weaning the Pheno to see if she can stay seizure free on just the
Keppra). I joined this group a little over a week ago and they are all very
friendly and helpful.

Welcome
Kirst
--- In epilepsy@yahoogroups.com, "cathiebutler"
<cathiebutler@...> wrote:
>
> my 7 yr old daughter was just diagnosed with epilepsy this past friday,
she had 2 grand mal seizures in less than a week. I have been reading about the
different meds and this is very scary!!!! I would love to hear from anywone who
could give me advice, answers,anything!
>
> cathie
>

Messages in this topic (156)
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5.3. Re: new member
Posted by: "Tammy Wolfgram" tammy@maccetera.com arammat
Date: Mon Mar 30, 2009 9:52 am ((PDT))

To the Mom of the child who was just diagnosed with epilepsy,

First, I'm sorry I forgot to grab your name. My daughter Megan
started having seizures right around the time she turned ten. I don't
want to step on anyone's toes, so I hope everyone reads this in the
spirit in which is was written. I am so glad that my husband was
diagnosed with esophageal before Megan was diagnosed with epilepsy,
because dealing with cancer has given me an entirely different
perspective than I think I would have had without that experience.

My attitude at that time was that anything that didn't have a better
than 90% change of killing you wasn't really worth worrying about too
much. (It's still pretty much my attitude:) I am always grateful that
I had that reaction, as it allowed Megan to live her life as normally
as possible. I'm not suggesting you should be reckless where your
child's safety is concerned, but don't overdo the protection either.
I understand how a diagnosis like epilepsy can overshadow everything
else, but only if you let it. Focus on making your child's life as
normal as possible. If you are afraid to even have your child out of
your sight because of epilepsy, he or she will pick up on that fear
and very likely become fearful, too.

Obviously, everyone's situation is different. Some children will
outgrow their seizures and others may not. Some will only have an
occasional seizure, while others may have dozens in a a single day.
And you have to keep your own child's circumstances in mind as you
make decisions. I'm just encouraging you to not let this diagnosis
overwhelm you or your child. Life does go on and life can still be
wonderful.

Take care,
Tammy

Messages in this topic (156)
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5.4. Re: new member
Posted by: "uniquepnk tds.net" Uniquepnk@tds.net uniquepnk
Date: Mon Mar 30, 2009 11:20 am ((PDT))

Cathie,

Welcome to the group. I have complex partial seizures. They were caused from
a head injury when I was a baby. I am 40 now. There are many different
medicines, so you will have to work with the doctors to find out what works
for you daughter. It takes time to find the right combination. My seizures
are not fully controlled,but with the medicine I am on they are not as bad
as they were when I was younger.There is plenty of information here and if
you need anything, write anytime. Take care.

Tammy

On Sun, Mar 29, 2009 at 8:02 PM, cathiebutler
<cathiebutler@yahoo.com>wrote:

> my 7 yr old daughter was just diagnosed with epilepsy this past friday,
> she had 2 grand mal seizures in less than a week. I have been reading
about
> the different meds and this is very scary!!!! I would love to hear from
> anywone who could give me advice, answers,anything!
>
> cathie
>
>
>

[Non-text portions of this message have been removed]

Messages in this topic (156)
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5.5. Re: new member
Posted by: "kteribond@aol.com" kteribond@aol.com love2skrap
Date: Mon Mar 30, 2009 5:41 pm ((PDT))

Hi Cathie,
Welcome to the group. I have an 8 year old daughter that has had Epilepsy
since she was 3 years old. She mainly has complex partials that usually occur

in her sleep, which many times generalize into GM.
What medication have they started your daughter on? My daughter was
initially on Trileptal, but is now on Depakote and Keppra.
It's a very scary process in the beginning dealing with all of this. But,

it does get better. You will learn a lot from the others in this group.
If I can help you in anyway please let me know.
Kim

Kim Bond
Scrapbook Advisor #1440
Picture Perfect Scrapbook Co;
_www.scraplifesart.com_ (http://www.scraplifesart.com/)
Contact me to get a copy of our NEW Catalog!!

In a message dated 3/29/2009 4:05:40 P.M. Pacific Standard Time,
cathiebutler@yahoo.com writes:

my 7 yr old daughter was just diagnosed with epilepsy this past friday, she
had 2 grand mal seizures in less than a week. I have been reading about the
different meds and this is very scary!!!! I would love to hear from anywone
who could give me advice, answers,anything!

cathie

[Non-text portions of this message have been removed]

Messages in this topic (156)
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6. Epilepsy Research Results
Posted by: "Belinda Shale"
belinda.shale@thepatientconnections.com thepatientconnection
Date: Mon Mar 30, 2009 7:03 am ((PDT))

Hi Everyone

Just to let you know that our epilepsy research results are now avaiable online

http://www.thepatientsvoice.org/Epilepsy/

Please do feel free to use the infomation as you see fit. However we do ask
that you link to the page if you choose to do so

Rgds

Belinda

Messages in this topic (1)
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7. Re: JILL [epilepsy] Re: EEG Result, seizure newbie
Posted by: "Uggie" ugmcginnis@embarqmail.com min9200meg
Date: Mon Mar 30, 2009 7:26 am ((PDT))

Jill -
Ur husband needs to tell the drs that are treating him that he has a
sensitivity to the IV dye. I know when I have to get an MRI with IV dye - I
have to take a few days prior of additional (allergy) meds - so I don't
have
a reaction to that dye. U may check into this and see if his drs have it
listed about his reactions to the IV dye.

Just a thought
Uggie

-------Original Message-------

From: Jill Gunzel
Date: 3/28/2009 7:53:08 PM
To: epilepsy@yahoogroups.com
Subject: [epilepsy] Re: EEG Result, seizure newbie

Dear Group,
It was so interesting to read someone's post about EEG results not
really showing anything (unless something happened to be going on
during the test).
I'm new to the group. My husband (57 yrs old, otherwise extremely
healthy)) had a first time seizure, March 10. So far, the CT scan
was clear, the blood test showed a definite tonic/clonic seizure
(high CO2), he's been sore for almost 3 weeks (back xray showed no
break), MRI showed a bright signal in the T2 area (so we'll retake it
in April), and the EEG is next week. His blood tests showed kidney
functions were way off a few days after the seizure. And he managed
to get two vein infections from the IV's (from the ambulance and also
from the dye with the MRI...he had an infection last year from the IV
for a colonoscopy. Not sure why he's so prone to those.)

The MRI report was slightly scary, because they gave those
speculations on why there was a bright signal. I wish I hadn't
looked up the terms they used (demylinating process, which is MS, and
low grade neoplasm...which could be an early stage of a nasty
tumor). But it was only "possibilities". Our primary care
doc's
comment was, "They don't have a clue!" And I figure neither of
those
possibilities were big enough to have caused the seizure....so I"m
trying to convince myself it was either always that way, or a result
of the seizure, which was listed as another less likely possibility.

The morning of the seizure, he was sitting at his computer and just
keeled over onto the floor with the seizure. He'd been extremely
constipate (like for a week), had taken 2 Exlax the night before and
2 that morning, and had just had a major dump. He was also taking
cold meds for a nasty cold, and he'd had a lot of coffee. So, if
electrolyte imbalance and/or viruses can be the cause....I'd like to
think that was enough to be the case.

For now, we're waiting for the EEG, the next MRI, the bloodtests to
confirm kidneys are back....and an okay to start driving again. If
any of you have a different take on this, I'd be very interested in
hearing from you.
Best wishes to all,
Jill

------------------------------------

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messages much easier to read when they arrive in our inboxes.

Yahoo! Groups Links

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Messages in this topic (1)
__________________________________________________________
__________________________________________________________
8a. Re: Seizures and Medications
Posted by: "Karina Castillo" castillokarina88@yahoo.com
castillokarina88
Date: Mon Mar 30, 2009 8:00 am ((PDT))

Well hardly, i used to be taking lamictal but now my doctor changed my
prescription so now I am taking keppra 500mg.
1/2 in the morning, 1 in the pm, and 1 daily. And I feel fine as now.
What medication is she taking? I used to take lamictal.

________________________________
From: Barbara Allen <barb.allen50@yahoo.com>
To: epilepsy@yahoogroups.com
Sent: Thursday, March 26, 2009 8:20:37 PM
Subject: Re: [epilepsy] Re: Seizures and Medications

My daughter takes 500 mg of Lamictal morning and night. Last night we went to
see a local Epilepsy doc speak, he said she should not be taking the lamictal at
night because it can cause insomnia (which has been the case with her), so she
is going to talk to her doc. He also said that the generic drug has a 20%/20%
which means the drug companies only have to come within 20% more or less of the
effectivemness of the brand name drug so depending on how frequent and severe
the seizures are you may want to stay away from generic.

--- On Thu, 3/26/09, Doris <dorisellen@nc. rr.com> wrote:

From: Doris <dorisellen@nc. rr.com>
Subject: [epilepsy] Re: Seizures and Medications
To: epilepsy@yahoogroup s.com
Date: Thursday, March 26, 2009, 6:57 PM

Hi Marie,
Very glad Lamictal working well for you and the super thing is that you are
going to persue your education online. That is a terrific idea. It will be an
accomplishment and it will be super satisfying. There is so much we can do
online. I am on the Lamictal too, 200mg twice daily. I still have seizures but
they are nocturnal and it happens usually twice a month. I have my license too
and it is very meaningful to me too. For a super amount of years I did not have
it since seizures were during the day. Left temporal lobectomy changed that
about 12 years ago. I hope you have real good insurance since the Lamictal is
expensive unless you use the generic type. If by chance you do use generic,
please fill me in as I keep thinking maybe sometime I will be able to change to
that because of the cost involved. Good luck and fill in on how you are doing.
Take care.
Doris

--- In epilepsy@yahoogroup s.com, Danny Newell <bigboy46@.. .> wrote:
>
> i know some meds work different on people, i did get a vasectomy at a very
young age. i was only 20 years old.
>
>
>
>
>
>
>
> --- On Thu, 3/26/09, moblondielpn <annaackermann@ ...> wrote:
>
> From: moblondielpn <annaackermann@ ...>
> Subject: [epilepsy] Seizures and Medications
> To: epilepsy@yahoogroup s.com
> Date: Thursday, March 26, 2009, 8:41 AM
>
> Seems they are different for each of us. I take lamitcal for years now. I
works
> for me. Wont say haven't had any but it has helped me.
> I am back at work. I can drive. of course we never forget that in one day
that
> can all change and I could start having them frequently again.
> I had to have a hysterectomy about the same time I started lamitcal I
always
> had seizures and
> bad ones around that "time of the month" So that also helped I
am
> sure.
> I am a L.P.N. and now Hubby and i have decided for me to try to get my
> R.N.online . take my time and just try. Even if studies takes a few
years.. I
> always even as a child that I am not so smart. Killed to many brain cells
I
> guess. My husband says that I am smarter than I think I am. But being
treated
> like I was mentally challenged as a child didn't help I'm sure. No
one
> explained to me anything about seizures and My childhood is a lifetime
movie for
> sure.
> So I will try a subject at a time. I need some encouragement please.
> Marie
>
>
>
> ------------ --------- --------- ------
>
> Just a friendly reminder: Please remember to sign your post and remember
to
> clean up messages when you reply to them. This is especially important if
you
> are on digest. This not only helps out the list owner but, it makes
messages
> much easier to read when they arrive in our inboxes.
>
> Yahoo! Groups Links
>
>
>
>
>
> [Non-text portions of this message have been removed]
>

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

Messages in this topic (19)
__________________________________________________________
__________________________________________________________
9a. Re: Does This Happen To You? [Annette]
Posted by: "TIMOTHY BALDWIN" tbb1@prodigy.net tbb19572000
Date: Mon Mar 30, 2009 8:05 am ((PDT))

Millie,

Complex-partial siezures are unconscious partial siezures. My seizures in one
area of my brain is all that is nechacerly to show that they are partial.
And that my unconsciousness shows that defines that they are complex. Thank
you.

Timothy Baldwin < tbb1@prodigy.net >

--- On Mon, 3/30/09, mylmy@bnin.net <mylmy@bnin.net> wrote:

From: mylmy@bnin.net <mylmy@bnin.net>
Subject: Re: [epilepsy] Re: Does This Happen To You? [Annette]
To: epilepsy@yahoogroups.com
Date: Monday, March 30, 2009, 5:26 AM

Annette,

You usually pass out with a GM. With a Complex partial
or an absence or other kinds- you don't pass out.-- your
brain just isn't working like usual. You don't hear
what is going on and sometimes can't talk. There are 25
different kinds of szs.

Millie

> Hi Millie: I don't get Medicare I get "Minnesota
Care" Because I am
> from Minnesota-- I getmy meds Cheap cuz the State pays for it and I pay
a
> CO---Pay. Oh, I was taking to a friend and she said the seizures I was
> have were GM. But I don't understand I was sitting>>>>
I thought the GM
> is ONLY when you fall to the floor?
>
>
>
> From: mylmy@bnin.net <mylmy@bnin.net>
> Subject: Re: [epilepsy] Re: Does This Happen To You? [Annette]
> To: epilepsy@yahoogroup s.com
> Date: Saturday, March 28, 2009, 8:44 AM
>
>
>
>
>
>
> Annette,
>
> Before Medicare d -- I had been getting my meds almost free.
> Dilantin (brand name) was free. Then Medicare D came in and
> they changed it to generic. I had a complex partial-- or
> something like it and my Dr. ordered the brand name. I had
> been sz free for 4 years. I've been on a combination of Dilantin
> and Phenabarb for over 20 years.
>
> Millie
>
>> Hi Millie : My Insurance that I get thru the State does't cover
>> regular
>> EP meds I was on it but now I sopose cuz the Country's pinching
>> pennies
>> they want to try me out on Generic .   I have been on these 2
types of
>> Meds 4 years. Maybe I will have 2 b a Guinne Pig again   ( which I
>> really
>> don't) Maybe it takes longer/ who knows thanks 4 your
reply.
>> ~~Annette~~
>>
>> --- On Fri, 3/27/09, mylmy@bnin.net <mylmy@bnin.net> wrote:
>>
>>
>> From: mylmy@bnin.net <mylmy@bnin.net>
>> Subject: Re: [epilepsy] Re: Does This Happen To You? [Annette]
>> To: epilepsy@yahoogroup s.com
>> Date: Friday, March 27, 2009, 8:47 PM
>>
>>
>>
>>
>>
>>
>> Anne,
>>
>> Generic meds for EP don't seem to work too well. I know I need
>> to take the Brand name. It is more expensive but if it works--fine.
>>
>> Or maybe you need another med. There are 30 different kinds of meds.
>> Or a combination. Each person has to find the one that works for them.
>>
>> Millie
>>
>>> Hi At   first it was Grandmal then I started haveing
what are
>>> called
>>> Complex Partial, and Simple Partial I just called them Medium
Seizures
>>> or
>>> Small Seizures cuz to me that is what they are to me also
"Clusters"
>>> haveing small ones right after another. I am sopose to take
Lorazapam 1
>>> mg. When it does that, But Latnight I was on the computer and
I had 3
>>> (
>>> what I call) Complex Partial and very different I just sat at my
chair
>>> andjust shook and then my head hurt like my brain was rattled
>>> (headache)
>>> Then I read that Lamictial makes ya not sleepy I doesnt matter
what
>>> time
>>> I take my meds I still can't fall asleep.   I am now on Both
Generic
>>> Keppra & Generic Lamictal    to me I think it isn't
working cuz I have
>>> not had these many seizures in years. ~Hope this answers your
>>> questions~~      ~~Annette~~
>>>
>>> --- On Fri, 3/27/09, pat040394 <ltpat228@comcast. net>
wrote:
>>>
>>>
>>> From: pat040394 <ltpat228@comcast. net>
>>> Subject: [epilepsy] Re: Does This Happen To You? [Annette]
>>> To: epilepsy@yahoogroup s.com
>>> Date: Friday, March 27, 2009, 5:18 PM
>>>
>>>
>>>
>>>
>>>
>>>
>>> Annette - what kind of epilepsy were you diagnosed?
>>>
>>> ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~
>>>
>>> --- In epilepsy@yahoogroup s.com, Annette Holm <annetteholm69@
...>
>>> wrote:
>>>>
>>>> I don't really know What I do know is that I have G.M
(grandmals, Cp
>>>> -complex partial what I call med.  seizures   and Sp
Simple Partial
>>>> what I call little ones cuz they last only sec.) I have a
V.N.S.
>>>> Vagel Nerve Stimalator   I like it . going on 8 yrs now
.
>>>> ~~Annette~~
>>>>
>>>> --- On Wed, 3/25/09, pat040394 <ltpat228@.. .> wrote:
>>>>
>>>>
>>>> From: pat040394 <ltpat228@.. .>
>>>> Subject: [epilepsy] Re: Does This Happen To You?
>>>> To: epilepsy@yahoogroup s.com
>>>> Date: Wednesday, March 25, 2009, 7:09 PM
>>>>
>>>>
>>>>
>>>>
>>>>
>>>>
>>>> Well I called my Neuro today and left a message with her
Nurses about
>>>> my
>>>> episode.
>>>> For me it's paramount as hopefully this will aide her in
my diagnosis.
>>>>
>>>> What kind of epilepsy do you have?
>>>>
>>>> ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~
>>>>
>>>> --- In epilepsy@yahoogroup s.com, Annette Holm
<annetteholm69@ ...>
>>>> wrote:
>>>> >
>>>> > ok-- I was standing outside A Hospital   cuz my
stepdaughter just
>>>> had twins and felt weird I could feel my head turn to the
right ( I
>>>> knew it wasn't sopose to ) I new it was an involentary
movement (
>>>> there were other people standing near me) but didn't
notice . which
>>>> was ok don't want to freak them out ( some of the people
know about
>>>> my seizures)   it also was 2-3 pm.   and also I felt like
I was
>>>> spacy~~!! It just seemed really odd I sopose I should tell
my neuro
>>>> X-Cept I don't want her to(up) the meds . I hate that
when they do
>>>> that.
>>>> >
>>>> > --- On Wed, 3/25/09, pat040394 <ltpat228@ .> wrote:
>>>> >
>>>> >
>>>> > From: pat040394 <ltpat228@ .>
>>>> > Subject: [epilepsy] Re: Does This Happen To You?
>>>> > To: epilepsy@yahoogroup s.com
>>>> > Date: Wednesday, March 25, 2009, 5:19 PM
>>>> >
>>>> >
>>>> >
>>>> >
>>>> >
>>>> >
>>>> > Please tell me, Annette, what exactly happened with you.
>>>> >
>>>> > My episode occured mid afternoon.
>>>> >
>>>> > ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~
>>>> >
>>>> > --- In epilepsy@yahoogroup s.com, Annette Holm
<annetteholm69@ ...>
>>>> wrote:
>>>> > >
>>>> > > Hi~~ Yes, this has happened to me about 3 wks
ago, I wasn't at
>>>> the
>>>> computer, but I have noticed it a few times, I don't
know what I'd
>>>> call it I think it is a type of seizure cp-----sp ?   I
don't know
>>>> if this has happened to you besides being on the computer I
have
>>>> noticed when I play . certain games on the computer this
happenes
>>>> to me . ~~Annette~~ I cannot say about others cuz they are
all
>>>> different just like we are.
>>>> > >
>>>> > > --- On Wed, 3/25/09, pat040394 <ltpat228@ .>
wrote:
>>>> > >
>>>> > >
>>>> > > From: pat040394 <ltpat228@ .>
>>>> > > Subject: [epilepsy] Does This Happen To You?
>>>> > > To: epilepsy@yahoogroup s.com
>>>> > > Date: Wednesday, March 25, 2009, 3:08 PM
>>>> > >
>>>> > >
>>>> > >
>>>> > >
>>>> > >
>>>> > >
>>>> > > Last Sunday I was sitting here at my computer when
it occured to
>>>> me
>>>> I was staring, then my neck and head started to pull/twitch to
the
>>>> right. I think when the pulling began, that's when I
realized
>>>> something was odd and I shook my body so it would stop. I
really had
>>>> to concentrate and force myself so my neck would go back
right.
>>>> > >
>>>> > > I really can't say how long it lasted but maybe
up to 30 seconds?
>>>> > > I say this as when I stare, I truly don't know
how much time goes
>>>> by.
>>>> > > Afterwards I felt worn out for some reason.
>>>> > >
>>>> > > As most of you know, I'm still being tested and
haven't yet been
>>>> diagnosed with epilepsy, although my Neurologist suspects
absence
>>>> petit mals.
>>>> > >
>>>> > >
>>>> > >
>>>> > >
>>>> > >
>>>> > >
>>>> > >
>>>> > >
>>>> > >
>>>> > >
>>>> > >
>>>> > >
>>>> > >
>>>> > >
>>>> > >
>>>> > >
>>>> > >
>>>> > >
>>>> > >
>>>> > > [Non-text portions of this message have been
removed]
>>>> > >
>>>> >
>>>> >
>>>> >
>>>> >
>>>> >
>>>> >
>>>> >
>>>> >
>>>> >
>>>> >
>>>> >
>>>> >
>>>> >
>>>> >
>>>> >
>>>> >
>>>> >
>>>> >
>>>> >
>>>> > [Non-text portions of this message have been removed]
>>>> >
>>>>
>>>>
>>>>
>>>>
>>>>
>>>>
>>>>
>>>>
>>>>
>>>>
>>>>
>>>>
>>>>
>>>>
>>>>
>>>>
>>>>
>>>>
>>>>
>>>> [Non-text portions of this message have been removed]
>>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>> [Non-text portions of this message have been removed]
>>>
>>>
>>
>>
>>
>>
>>
>>
>>
>>
>>
>>
>>
>>
>>
>>
>>
>>
>>
>>
>>
>> [Non-text portions of this message have been removed]
>>
>>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
> [Non-text portions of this message have been removed]
>
>

[Non-text portions of this message have been removed]

Messages in this topic (23)
__________________________________________________________
9b. Re: Does This Happen To You? [Annette]
Posted by: "mylmy@bnin.net" mylmy@bnin.net mylmy
Date: Mon Mar 30, 2009 9:18 am ((PDT))

Timorthy,

Do you pass out or are you not aware of what is going on?

Millie

> Millie,
>
> Complex-partial siezures are unconscious partial siezures. My seizures in
> one area of my brain is all that is nechacerly to show that they are
> partial. And that my unconsciousness shows that defines that they are
> complex. Thank you.
>
> Timothy Baldwin < tbb1@prodigy.net >
>
> --- On Mon, 3/30/09, mylmy@bnin.net <mylmy@bnin.net> wrote:
>
> From: mylmy@bnin.net <mylmy@bnin.net>
> Subject: Re: [epilepsy] Re: Does This Happen To You? [Annette]
> To: epilepsy@yahoogroups.com
> Date: Monday, March 30, 2009, 5:26 AM
>
>
>
>
>
>
> Annette,
>
> You usually pass out with a GM. With a Complex partial
> or an absence or other kinds- you don't pass out.-- your
> brain just isn't working like usual. You don't hear
> what is going on and sometimes can't talk. There are 25
> different kinds of szs.
>
> Millie
>
>> Hi Millie: I don't get Medicare I get "Minnesota
Care" Because I am
>> from Minnesota-- I getmy meds Cheap cuz the State pays for it and I
pay
>> a
>> CO---Pay. Oh, I was taking to a friend and she said the seizures I
was
>> have were GM. But I don't understand I was
sitting>>>> I thought the
>> GM
>> is ONLY when you fall to the floor?
>>
>>
>>
>> From: mylmy@bnin.net <mylmy@bnin.net>
>> Subject: Re: [epilepsy] Re: Does This Happen To You? [Annette]
>> To: epilepsy@yahoogroup s.com
>> Date: Saturday, March 28, 2009, 8:44 AM
>>
>>
>>
>>
>>
>>
>> Annette,
>>
>> Before Medicare d -- I had been getting my meds almost free.
>> Dilantin (brand name) was free. Then Medicare D came in and
>> they changed it to generic. I had a complex partial-- or
>> something like it and my Dr. ordered the brand name. I had
>> been sz free for 4 years. I've been on a combination of Dilantin
>> and Phenabarb for over 20 years.
>>
>> Millie
>>
>>> Hi Millie : My Insurance that I get thru the State does't
cover
>>> regular
>>> EP meds I was on it but now I sopose cuz the Country's
pinching
>>> pennies
>>> they want to try me out on Generic .   I have been on these 2
types of
>>> Meds 4 years. Maybe I will have 2 b a Guinne Pig again   (
which I
>>> really
>>> don't) Maybe it takes longer/ who knows thanks 4 your
reply.
>>> ~~Annette~~
>>>
>>> --- On Fri, 3/27/09, mylmy@bnin.net <mylmy@bnin.net> wrote:
>>>
>>>
>>> From: mylmy@bnin.net <mylmy@bnin.net>
>>> Subject: Re: [epilepsy] Re: Does This Happen To You? [Annette]
>>> To: epilepsy@yahoogroup s.com
>>> Date: Friday, March 27, 2009, 8:47 PM
>>>
>>>
>>>
>>>
>>>
>>>
>>> Anne,
>>>
>>> Generic meds for EP don't seem to work too well. I know I need
>>> to take the Brand name. It is more expensive but if it
works--fine.
>>>
>>> Or maybe you need another med. There are 30 different kinds of
meds.
>>> Or a combination. Each person has to find the one that works for
them.
>>>
>>> Millie
>>>
>>>> Hi At   first it was Grandmal then I started
haveing what are
>>>> called
>>>> Complex Partial, and Simple Partial I just called them
Medium
>>>> Seizures
>>>> or
>>>> Small Seizures cuz to me that is what they are to me also
>>>> "Clusters"
>>>> haveing small ones right after another. I am sopose to take
Lorazapam
>>>> 1
>>>> mg. When it does that, But Latnight I was on the computer
and I had
>>>> 3
>>>> (
>>>> what I call) Complex Partial and very different I just sat at
my chair
>>>> andjust shook and then my head hurt like my brain was rattled
>>>> (headache)
>>>> Then I read that Lamictial makes ya not sleepy I doesnt
matter what
>>>> time
>>>> I take my meds I still can't fall asleep.   I am now on
Both Generic
>>>> Keppra & Generic Lamictal    to me I think it
isn't working cuz I
>>>> have
>>>> not had these many seizures in years. ~Hope this answers
your
>>>> questions~~      ~~Annette~~
>>>>
>>>> --- On Fri, 3/27/09, pat040394 <ltpat228@comcast. net>
wrote:
>>>>
>>>>
>>>> From: pat040394 <ltpat228@comcast. net>
>>>> Subject: [epilepsy] Re: Does This Happen To You? [Annette]
>>>> To: epilepsy@yahoogroup s.com
>>>> Date: Friday, March 27, 2009, 5:18 PM
>>>>
>>>>
>>>>
>>>>
>>>>
>>>>
>>>> Annette - what kind of epilepsy were you diagnosed?
>>>>
>>>> ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~
>>>>
>>>> --- In epilepsy@yahoogroup s.com, Annette Holm
<annetteholm69@ ...>
>>>> wrote:
>>>>>
>>>>> I don't really know What I do know is that I have
G.M (grandmals,
>>>>> Cp
>>>>> -complex partial what I call med.  seizures   and Sp
Simple Partial
>>>>> what I call little ones cuz they last only sec.) I
have a V.N.S.
>>>>> Vagel Nerve Stimalator   I like it . going on 8 yrs
now .
>>>>> ~~Annette~~
>>>>>
>>>>> --- On Wed, 3/25/09, pat040394 <ltpat228@.. .>
wrote:
>>>>>
>>>>>
>>>>> From: pat040394 <ltpat228@.. .>
>>>>> Subject: [epilepsy] Re: Does This Happen To You?
>>>>> To: epilepsy@yahoogroup s.com
>>>>> Date: Wednesday, March 25, 2009, 7:09 PM
>>>>>
>>>>>
>>>>>
>>>>>
>>>>>
>>>>>
>>>>> Well I called my Neuro today and left a message with her
Nurses about
>>>>> my
>>>>> episode.
>>>>> For me it's paramount as hopefully this will aide her
in my
>>>>> diagnosis.
>>>>>
>>>>> What kind of epilepsy do you have?
>>>>>
>>>>> ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~
>>>>>
>>>>> --- In epilepsy@yahoogroup s.com, Annette Holm
<annetteholm69@ ...>
>>>>> wrote:
>>>>> >
>>>>> > ok-- I was standing outside A Hospital   cuz
my stepdaughter
>>>>> just
>>>>> had twins and felt weird I could feel my head turn to
the right ( I
>>>>> knew it wasn't sopose to ) I new it was an
involentary movement (
>>>>> there were other people standing near me) but didn't
notice . which
>>>>> was ok don't want to freak them out ( some of the
people know about
>>>>> my seizures)   it also was 2-3 pm.   and also I felt
like I was
>>>>> spacy~~!! It just seemed really odd I sopose I should
tell my neuro
>>>>> X-Cept I don't want her to(up) the meds . I hate
that when they do
>>>>> that.
>>>>> >
>>>>> > --- On Wed, 3/25/09, pat040394 <ltpat228@ .>
wrote:
>>>>> >
>>>>> >
>>>>> > From: pat040394 <ltpat228@ .>
>>>>> > Subject: [epilepsy] Re: Does This Happen To You?
>>>>> > To: epilepsy@yahoogroup s.com
>>>>> > Date: Wednesday, March 25, 2009, 5:19 PM
>>>>> >
>>>>> >
>>>>> >
>>>>> >
>>>>> >
>>>>> >
>>>>> > Please tell me, Annette, what exactly happened with
you.
>>>>> >
>>>>> > My episode occured mid afternoon.
>>>>> >
>>>>> > ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~
>>>>> >
>>>>> > --- In epilepsy@yahoogroup s.com, Annette Holm
<annetteholm69@ ...>
>>>>> wrote:
>>>>> > >
>>>>> > > Hi~~ Yes, this has happened to me about 3 wks
ago, I wasn't at
>>>>> the
>>>>> computer, but I have noticed it a few times, I don't
know what I'd
>>>>> call it I think it is a type of seizure cp-----sp
?   I don't know
>>>>> if this has happened to you besides being on the
computer I have
>>>>> noticed when I play . certain games on the computer this
happenes
>>>>> to me . ~~Annette~~ I cannot say about others cuz they
are all
>>>>> different just like we are.
>>>>> > >
>>>>> > > --- On Wed, 3/25/09, pat040394 <ltpat228@
.> wrote:
>>>>> > >
>>>>> > >
>>>>> > > From: pat040394 <ltpat228@ .>
>>>>> > > Subject: [epilepsy] Does This Happen To You?
>>>>> > > To: epilepsy@yahoogroup s.com
>>>>> > > Date: Wednesday, March 25, 2009, 3:08 PM
>>>>> > >
>>>>> > >
>>>>> > >
>>>>> > >
>>>>> > >
>>>>> > >
>>>>> > > Last Sunday I was sitting here at my computer
when it occured to
>>>>> me
>>>>> I was staring, then my neck and head started to
pull/twitch to the
>>>>> right. I think when the pulling began, that's when I
realized
>>>>> something was odd and I shook my body so it would stop. I
really had
>>>>> to concentrate and force myself so my neck would go back
right.
>>>>> > >
>>>>> > > I really can't say how long it lasted but
maybe up to 30 seconds?
>>>>> > > I say this as when I stare, I truly don't
know how much time goes
>>>>> by.
>>>>> > > Afterwards I felt worn out for some reason.
>>>>> > >
>>>>> > > As most of you know, I'm still being tested
and haven't yet been
>>>>> diagnosed with epilepsy, although my Neurologist suspects
absence
>>>>> petit mals.
>>>>> > >
>>>>> > >
>>>>> > >
>>>>> > >
>>>>> > >
>>>>> > >
>>>>> > >
>>>>> > >
>>>>> > >
>>>>> > >
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Messages in this topic (23)
__________________________________________________________
9c. Re: Does This Happen To You? [Annette]
Posted by: "TIMOTHY BALDWIN" tbb1@prodigy.net tbb19572000
Date: Mon Mar 30, 2009 1:01 pm ((PDT))

YES. Mostly all times when one occurs at home, where I live by my self without
a witness to inform me of them. I'm not aware of a seizure. Unless, I was
injured in the fall, or if I may have been sitting in a good chair watching
TV and spilled something I'd been drinking into my lap. If I don't
spill anything, I wouldn't be aware that I missed a min. or few of the
show. During one of latest seizures, I was walking from the
refrigerator. Thing in a hand were dropped while I fell and afterward I
probably just stood up and got back and did something without being fully aware
that anything until 30 mins. later when I noticed that I was confused, I was
in the right place but didn't remember my route there or those I was to take
I just walked and thought that I was having a simple partial seizure. I
didn't know that my confusion was due to being in the post ictal period
of a complex-partial that had happed at home earlier when I was
returning from the refridgerator. It took place, I dropped what was in my
hand. I then stood up and wasn't aware of the seizure happening or
anything or what I was doing or had been in my hand. Thirty mins. later, I
still wasn't aware of previous seizure. But I noticed that I
was confused and thought that I was having a simple partial taking place in my
brain at that time. I wasn't aware of a seizure earlier which placed me
in the post ictal period of the complex partial that had occured .
Later, after work I was back at home and near the refidg. I saw the remains
from it. And, I figured that the confusion I was aware later when on my way
to work was related to it.

Thanks for hearing it,
Tim Baldwin < tbb1@prodigy.net >


--- On Mon, 3/30/09, mylmy@bnin.net <mylmy@bnin.net> wrote:

From: mylmy@bnin.net <mylmy@bnin.net>
Subject: Re: [epilepsy] Re: Does This Happen To You? [Annette]
To: epilepsy@yahoogroups.com
Date: Monday, March 30, 2009, 12:16 PM

Timorthy,

Do you pass out or are you not aware of what is going on?

Millie

> Millie,
>
> Complex-partial siezures are unconscious partial siezures. My seizures in
> one area of my brain is all that is nechacerly to show that they are
> partial. And that my unconsciousness shows that defines that they are
> complex. Thank you.
>
> Timothy Baldwin < tbb1@prodigy. net >
>
> --- On Mon, 3/30/09, mylmy@bnin.net <mylmy@bnin.net> wrote:
>
> From: mylmy@bnin.net <mylmy@bnin.net>
> Subject: Re: [epilepsy] Re: Does This Happen To You? [Annette]
> To: epilepsy@yahoogroup s.com
> Date: Monday, March 30, 2009, 5:26 AM
>
>
>
>
>
>
> Annette,
>
> You usually pass out with a GM. With a Complex partial
> or an absence or other kinds- you don't pass out.-- your
> brain just isn't working like usual. You don't hear
> what is going on and sometimes can't talk. There are 25
> different kinds of szs.
>
> Millie
>
>> Hi Millie: I don't get Medicare I get "Minnesota
Care" Because I am
>> from Minnesota-- I getmy meds Cheap cuz the State pays for it and I
pay
>> a
>> CO---Pay. Oh, I was taking to a friend and she said the seizures I
was
>> have were GM. But I don't understand I was
sitting>>>> I thought the
>> GM
>> is ONLY when you fall to the floor?
>>
>>
>>
>> From: mylmy@bnin.net <mylmy@bnin.net>
>> Subject: Re: [epilepsy] Re: Does This Happen To You? [Annette]
>> To: epilepsy@yahoogroup s.com
>> Date: Saturday, March 28, 2009, 8:44 AM
>>
>>
>>
>>
>>
>>
>> Annette,
>>
>> Before Medicare d -- I had been getting my meds almost free.
>> Dilantin (brand name) was free. Then Medicare D came in and
>> they changed it to generic. I had a complex partial-- or
>> something like it and my Dr. ordered the brand name. I had
>> been sz free for 4 years. I've been on a combination of Dilantin
>> and Phenabarb for over 20 years.
>>
>> Millie
>>
>>> Hi Millie : My Insurance that I get thru the State does't
cover
>>> regular
>>> EP meds I was on it but now I sopose cuz the Country's
pinching
>>> pennies
>>> they want to try me out on Generic .   I have been on these 2
types of
>>> Meds 4 years. Maybe I will have 2 b a Guinne Pig again   (
which I
>>> really
>>> don't) Maybe it takes longer/ who knows thanks 4 your
reply.
>>> ~~Annette~~
>>>
>>> --- On Fri, 3/27/09, mylmy@bnin.net <mylmy@bnin.net> wrote:
>>>
>>>
>>> From: mylmy@bnin.net <mylmy@bnin.net>
>>> Subject: Re: [epilepsy] Re: Does This Happen To You? [Annette]
>>> To: epilepsy@yahoogroup s.com
>>> Date: Friday, March 27, 2009, 8:47 PM
>>>
>>>
>>>
>>>
>>>
>>>
>>> Anne,
>>>
>>> Generic meds for EP don't seem to work too well. I know I need
>>> to take the Brand name. It is more expensive but if it
works--fine.
>>>
>>> Or maybe you need another med. There are 30 different kinds of
meds.
>>> Or a combination. Each person has to find the one that works for
them.
>>>
>>> Millie
>>>
>>>> Hi At   first it was Grandmal then I started
haveing what are
>>>> called
>>>> Complex Partial, and Simple Partial I just called them
Medium
>>>> Seizures
>>>> or
>>>> Small Seizures cuz to me that is what they are to me also
>>>> "Clusters"
>>>> haveing small ones right after another. I am sopose to take
Lorazapam
>>>> 1
>>>> mg. When it does that, But Latnight I was on the computer
and I had
>>>> 3
>>>> (
>>>> what I call) Complex Partial and very different I just sat at
my chair
>>>> andjust shook and then my head hurt like my brain was rattled
>>>> (headache)
>>>> Then I read that Lamictial makes ya not sleepy I doesnt
matter what
>>>> time
>>>> I take my meds I still can't fall asleep.   I am now on
Both Generic
>>>> Keppra & Generic Lamictal    to me I think it
isn't working cuz I
>>>> have
>>>> not had these many seizures in years. ~Hope this answers
your
>>>> questions~~      ~~Annette~~
>>>>
>>>> --- On Fri, 3/27/09, pat040394 <ltpat228@comcast. net>
wrote:
>>>>
>>>>
>>>> From: pat040394 <ltpat228@comcast. net>
>>>> Subject: [epilepsy] Re: Does This Happen To You? [Annette]
>>>> To: epilepsy@yahoogroup s.com
>>>> Date: Friday, March 27, 2009, 5:18 PM
>>>>
>>>>
>>>>
>>>>
>>>>
>>>>
>>>> Annette - what kind of epilepsy were you diagnosed?
>>>>
>>>> ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~
>>>>
>>>> --- In epilepsy@yahoogroup s.com, Annette Holm
<annetteholm69@ ...>
>>>> wrote:
>>>>>
>>>>> I don't really know What I do know is that I have
G.M (grandmals,
>>>>> Cp
>>>>> -complex partial what I call med.  seizures   and Sp
Simple Partial
>>>>> what I call little ones cuz they last only sec.) I
have a V.N.S.
>>>>> Vagel Nerve Stimalator   I like it . going on 8 yrs
now .
>>>>> ~~Annette~~
>>>>>
>>>>> --- On Wed, 3/25/09, pat040394 <ltpat228@.. .>
wrote:
>>>>>
>>>>>
>>>>> From: pat040394 <ltpat228@.. .>
>>>>> Subject: [epilepsy] Re: Does This Happen To You?
>>>>> To: epilepsy@yahoogroup s.com
>>>>> Date: Wednesday, March 25, 2009, 7:09 PM
>>>>>
>>>>>
>>>>>
>>>>>
>>>>>
>>>>>
>>>>> Well I called my Neuro today and left a message with her
Nurses about
>>>>> my
>>>>> episode.
>>>>> For me it's paramount as hopefully this will aide her
in my
>>>>> diagnosis.
>>>>>
>>>>> What kind of epilepsy do you have?
>>>>>
>>>>> ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~
>>>>>
>>>>> --- In epilepsy@yahoogroup s.com, Annette Holm
<annetteholm69@ ...>
>>>>> wrote:
>>>>> >
>>>>> > ok-- I was standing outside A Hospital   cuz
my stepdaughter
>>>>> just
>>>>> had twins and felt weird I could feel my head turn to
the right ( I
>>>>> knew it wasn't sopose to ) I new it was an
involentary movement (
>>>>> there were other people standing near me) but didn't
notice . which
>>>>> was ok don't want to freak them out ( some of the
people know about
>>>>> my seizures)   it also was 2-3 pm.   and also I felt
like I was
>>>>> spacy~~!! It just seemed really odd I sopose I should
tell my neuro
>>>>> X-Cept I don't want her to(up) the meds . I hate
that when they do
>>>>> that.
>>>>> >
>>>>> > --- On Wed, 3/25/09, pat040394 <ltpat228@ .>
wrote:
>>>>> >
>>>>> >
>>>>> > From: pat040394 <ltpat228@ .>
>>>>> > Subject: [epilepsy] Re: Does This Happen To You?
>>>>> > To: epilepsy@yahoogroup s.com
>>>>> > Date: Wednesday, March 25, 2009, 5:19 PM
>>>>> >
>>>>> >
>>>>> >
>>>>> >
>>>>> >
>>>>> >
>>>>> > Please tell me, Annette, what exactly happened with
you.
>>>>> >
>>>>> > My episode occured mid afternoon.
>>>>> >
>>>>> > ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~
>>>>> >
>>>>> > --- In epilepsy@yahoogroup s.com, Annette Holm
<annetteholm69@ ...>
>>>>> wrote:
>>>>> > >
>>>>> > > Hi~~ Yes, this has happened to me about 3 wks
ago, I wasn't at
>>>>> the
>>>>> computer, but I have noticed it a few times, I don't
know what I'd
>>>>> call it I think it is a type of seizure cp-----sp
?   I don't know
>>>>> if this has happened to you besides being on the
computer I have
>>>>> noticed when I play . certain games on the computer this
happenes
>>>>> to me . ~~Annette~~ I cannot say about others cuz they
are all
>>>>> different just like we are.
>>>>> > >
>>>>> > > --- On Wed, 3/25/09, pat040394 <ltpat228@
.> wrote:
>>>>> > >
>>>>> > >
>>>>> > > From: pat040394 <ltpat228@ .>
>>>>> > > Subject: [epilepsy] Does This Happen To You?
>>>>> > > To: epilepsy@yahoogroup s.com
>>>>> > > Date: Wednesday, March 25, 2009, 3:08 PM
>>>>> > >
>>>>> > >
>>>>> > >
>>>>> > >
>>>>> > >
>>>>> > >
>>>>> > > Last Sunday I was sitting here at my computer
when it occured to
>>>>> me
>>>>> I was staring, then my neck and head started to
pull/twitch to the
>>>>> right. I think when the pulling began, that's when I
realized
>>>>> something was odd and I shook my body so it would stop. I
really had
>>>>> to concentrate and force myself so my neck would go back
right.
>>>>> > >
>>>>> > > I really can't say how long it lasted but
maybe up to 30 seconds?
>>>>> > > I say this as when I stare, I truly don't
know how much time goes
>>>>> by.
>>>>> > > Afterwards I felt worn out for some reason.
>>>>> > >
>>>>> > > As most of you know, I'm still being tested
and haven't yet been
>>>>> diagnosed with epilepsy, although my Neurologist suspects
absence
>>>>> petit mals.
>>>>> > >
>>>>> > >
>>>>> > >
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Messages in this topic (23)
__________________________________________________________
__________________________________________________________
10a. Re: GOOD MORNING TO ALL
Posted by: "Kirsten" kirsty815@yahoo.com kirsty815
Date: Mon Mar 30, 2009 8:25 am ((PDT))

Hey Tammy,
Our Meghan is 6 years old, she goes by meggers, meg-a-moo, moo moo, bug-a-boo
and various others I'm sure she'll totally be embarrassed by in a few
years..lol
The National Walk for Epilepsy is in D.C. but you can fundraise and virtual
walk or walk in your own community on the day (they'll send you your
t-shirts and give you press release info if you want to get the media involved
in your local participation). This was our first year virtual walking and we
raised $130 not to bad considering I'm not a pushy sales person..lol Next
year we're going to try and make it to D.C. and get our local media
involved. There are other walks you can participate in, but you have to check
your local Epilepsy Foundation chapter to see where they are. I know here in
Tampa they have one in December called the reindeer run, it's a 5k or a mile
walk with kids, they give the kids bells and antlers, very cute!

Kirst

--- In epilepsy@yahoogroups.com, Tammy Wolfgram <tammy@...> wrote:
>
> Hi all,
>
> You all have too much to say! I can barely keep up with you. I was
> five digests behind this afternoon! I'm doing to just do all my
> replies to the two remaining digests in this email. BTW, it would
> really help me and others who are on digest format if you would trim
> your quoted material when replying. A lot of times, there is about 3
> or 4 times as much quoted material in each digest as new material.
>
> Annette, I am insured by my state's health risk sharing pool, which
> means that I pay premiums like an insurance plan, but it has similar
> restrictions to medicare. I think that in most cases, if your doctor
> indicates that the brand name medication is "medically
necessary" you
> can get the brand name approved. We were able to do this for Megan,
> in spite of the new drug policy indicating that no brand name drugs
> would be covered if there was a generic available. We pay a higher co-
> pay ($30 for each Rx), but it's well worth it in terms of Megan's

> better seizure control.
>
> Also for Annette: Grand mal seizures are also known as generalized
> tonic clonic seizures. You can fall to the floor, but if you are
> seated, you might remain so even while having a tonic clonic seizure.
> You generally lose consciousness during the seizure, and your muscles
> spasm or contract. When Megan feels like she is going to have a
> seizure and can let us know, we either sit her down or get her to
> lie down so she doesn't injure herself while falling. That said,
> Megan generally has only superficial injuries as the result of her
> seizures. Bruises or small abrasions are usually all that happens.
>
> It is possible for you to have more than one kind of seizure. When
> you were sitting, was there anyone around to describe what was
> happening? Do you have any recollection of that time? Best wishes in
> getting this figured out.
>
> For Kirst and Meghan: first off, how old is your Meghan? My Megan is
> 19 and will be 20 in May. We also call our Megan "Meggers"
although
> she is also known as Monkey and Magpie by various people :) I am
> unfamiliar with the Walk for Epilepsy. Do they only do this in DC, or
> are there events staged in other cities in the US on the same day?
>
> For Melissa and Steve's reply: Steve, I think it is so great that
> your surgery had such good results for you. Melissa, since
> medications do not work for you and you apparently have a focus of
> seizure activity in your brain, I certainly would encourage you to
> explore the option of surgery.
>
> For Jill: I can understand your worry and concern for your husband.
> It sounds like he has only had one seizure so far. While it is wise
> to look into it, this one seizure could just be an anomaly. Best
> wishes to you both.
>
> For travilin2, if you feel this second doctor is a better fit for
> you, and you don't have much confidence in the way your case is being

> handled by the first doctor and his office, I think changing would be
> a good idea. You might want to investigate the reputation and
> credentials of doctor number 2 before making the switch, just to be
> sure.
>
> OK, this is long and I've only read the one digest, so I'll send
this
> now.
>
> Tammy
>

Messages in this topic (6)
__________________________________________________________
__________________________________________________________
11. Re: drugs for seizures (Millie)
Posted by: "Jill Gunzel" gunzel@cox.net jgunzel
Date: Mon Mar 30, 2009 9:29 am ((PDT))

Millie,
Thanks so much for your comments on meds and seizures. I'm hoping we
won't need them, but we're already talking about the "what if this

wasn't a flukey one-time seizure". I speculated about medicines and
your post confirmed I was correct. I speculated that it was just
like with Restless Legs Syndrome. The FDA approves some drugs for
it, the doctors also prescribe other drugs that are approved for
other situations, and to make it really exciting, we find that what
works for one doesn't work for the other....or even makes it worse!

With RLS, coffee is a bad thing for some, but for others it will stop
and RLS attack. Go figure!

I love your attitude about not caring about the cause....you got it,
you're dealing with it. Good for you!!!
Jill

Messages in this topic (1)
__________________________________________________________
__________________________________________________________
12a. Re: EEG Result
Posted by: "debbie riley" islandbabie5942004@yahoo.com
islandbabie5942004
Date: Mon Mar 30, 2009 1:25 pm ((PDT))

hun dont give up. it took my hubby 5 years to finally have a egg to show
something we thougtht the doc tought we was crazy but 2 weeks ago he had a
siezure and it show up on the egg and now he is on meds doing better please take
care

--- On Fri, 3/27/09, pat040394 <ltpat228@comcast.net> wrote:

From: pat040394 <ltpat228@comcast.net>
Subject: [epilepsy] EEG Result
To: epilepsy@yahoogroups.com
Date: Friday, March 27, 2009, 10:32 PM

It was normal.

Had an absence petit mal last Sunday but noooooooooo, the friggin EEG taken 1
week earlier was normal!

I've had it, man - just about had it.

All these tests and still no diagnosis.

[Non-text portions of this message have been removed]

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