Craig,
Do you have any children? Things have changed since you were a child.
Another thing I do believe-- that different parts of the country are
more educated about EP than others. I found this out when I wrote in
Women's Circle magazine saying that I wanted to write to people who have
EP. I got 18 letters. No way could I keep up with 18 people so I
started 3 round robin letters. That was before computers and we would
write a letter when it came to us and take out our old one. That was
over 40 years ago. I can also tell a difference when people write in
our group.
And who better than we who have EP to do it?
We are all products of what we have experienced -- but that doesn't
mean we have to stay there. We can learn and move on. To me that is
what a group does for you.
Millie
And if your area is not educated
about EP -- who better to teach them than we who have EP?
> To all who believes is would be good to tell your school of your childs
> health, remember ignorance is blind. Once people have their mind set of
> what a person seems to be, they will never change that their minds about
> that person. I forgot to mention they school put me in special ed for half
> the school year in 9th grade. Maybe if I had Grand Mals every day, I could
> had accepted that. I did have 2 teachers who I liked, as they said I never
> belonged in special ed classes. I hope all of you are right about how
> schools have changed, but I would not trust their final report in the
> several important areas of teaching and guiding kids in the right way when
> they have a seizure condition. Especially if they never listen to what the
> student is saying about what could go wrong or may be wrong in the
> students mind, that they may never seem to care about. Here's the simple
> truth about it all. I have my diploma and believed they just passed me to
> pass me as I
> had C grades for the most part. I went to school like all the others and
> never missed days due to grand mals. I was as interested in learning as
> all the others besides the trouble makers. From 1 to 10 1=Good 10=Bad I
>
> --- On Wed, 9/2/09, epilepsy@yahoogroup
> wrote:
>
>
> From: epilepsy@yahoogroup
> Subject: [epilepsy] Digest Number 4886
> To: epilepsy@yahoogroup
> Date: Wednesday, September 2, 2009, 2:36 AM
>
>
> There are 25 messages in this issue.
>
> Topics in this digest:
>
> 1a. What happens when schools know ?
> From: craig davis
> 1b. Re: What happens when schools know ?
> From: Jeff Stewart
> 1c. Re: What happens when schools know ?
> From: uniquepnk tds.net
> 1d. Re: What happens when schools know ?
> From: Rodolfo Quinones
> 1e. Re: What happens when schools know ?
> From: mylmy@bnin.net
>
> 2a. Re: seizure at church (and possible school assemblies)
> From: Jewl Wall
>
> 3a. Re: Regular Lamictal vs genetic Lamictal
> From: Jason
> 3b. Re: Regular Lamictal vs genetic Lamictal
> From: marshiie51
> 3c. Re: Regular Lamictal vs genetic Lamictal
> From: Sandy
> 3d. Re: Regular Lamictal vs genetic Lamictal
> From: Julie Hope
>
> 4a. Re: sleep trouble
> From: marshiie51
> 4b. Re: sleep trouble
> From: Liz Welker
>
> 5a. ANSWERS...FINALLY (after THREE HOURS in doc's waiting room)!!!!!!
> From: Liz Welker
> 5b. Re: ANSWERS...FINALLY (after THREE HOURS in doc's waiting room)!!!!!
>
> From: Sandy
>
> 6.1. Re: TREATMENT OF EPILEPSY
> From: sylviaapodaca
> 6.2. Re: TREATMENT OF EPILEPSY
> From: sylviaapodaca
> 6.3. Re: TREATMENT OF EPILEPSY
> From: Wendy Baur
> 6.4. Re: TREATMENT OF EPILEPSY
> From: mylmy@bnin.net
>
> 7.1. Re: being taken to hospital unneccisarily
> From: Kelly Porter
>
> 8a. Re: same/different-
> From: Kelly Porter
>
> 9.1. Re: high numbers of seizures a day (old post)
> From: Kelly Porter
>
> 10a. Re: Disability (just an honest response)
> From: Kelly Porter
> 10b. Re: Disability (just an honest response)
> From: Julie Hope
>
> 11. Medical System in Canada
> From: mylmy@bnin.net
>
> 12. Getting SSDI, and having children who are eligible.
> From: bigjohnsr1965
>
>
> Messages
> ____________
> 1a. What happens when schools know ?
> Posted by: "craig davis" ohs7778@yahoo.
> Date: Tue Sep 1, 2009 5:37 am ((PDT))
>
> First as a kid you are marked and singled out forever for the rest of
> your school years. In my case from 5th grade until high school I was
> singled out on every activity or sport I wanted to go out for. In high
> school I was able to know as I always was able to know when I was to take
> my medicine. Knowing the nurse was never there when I needed to take it, I
> got upset because I was being late for class. My sophmore year I decided
> to take keep my medicine in my pocket as i told the stupid principle that
> the doctor took me off of it. One month later, I was near a water fountain
> and took my pills. The principle saw me and asked What drugs are you
> taking Craig ? I just told him I was taking an asprin as I woke up with a
> headache. No phone calls were made to home or nothing after I was seen
> taking my own medicine when I knew I was to take it. I'm sure the
> principle knew i was telling him the truth. After I started bringing my
> medicines the last 3 years
> of school, there was no follow up by the school regaurding my health and I
> was happy for that. I still though in the last 3 years was not picked for
> team activities except 1 year I made the JV team in basketball. I was only
> picked for the team because the coach knew I wanted to play. If that was
> so, Why didn't I start, as I was mainly a bench warmer. Sure I was good
> enough and better than most on the team. I remember in those days a player
> in the NBA named Bobby Jones, who had seizures as he played for the Denver
> Nuggets & Philadephia 76ers. He started sometimes but he mainly was the
> 6th man off the bench for the 76ers. I guess I was surrounded by ignorant
> and brain dead people when I was in school. All of that should be a
> warning as to how your kids can be treated and singled out if they know
> about their condition. I only had auras in my stomach in those years while
> in school. I only had 2 Grand Mals at home in those years. Why parents if
> your kids are
> no worse than what my condition was, put them on a singled out or
> rejection list in school ? They should have the same rights and chances
> as the other kids have to do things. If they do not because of their
> serious condition of no auras before a Grand Mal or whatever else, then
> there should be some over-potection there to prevent serious harm to them
> and others. Otherwise let them be kids as school is to be fun while
> learning.
>
>
>
>
> [Non-text portions of this message have been removed]
>
>
>
>
>
>
> Messages in this topic (5)
> ____________
> 1b. Re: What happens when schools know ?
> Posted by: "Jeff Stewart" jeffro7946@yahoo.
> Date: Tue Sep 1, 2009 4:07 pm ((PDT))
>
> Craig
>
> I dont think schools are like this anymore any ways my daughters isn't
> everyone in her school is supportive and wants to make sure she is safe
> and thats where i am at I believe they all need to know what to do just
> incase she has a bad day of seizures and not be affraid
>
>
>
>
> ____________
> From: craig davis <ohs7778@yahoo.
> To: epilepsy@yahoogroup
> Sent: Tuesday, September 1, 2009 5:37:16 AM
> Subject: [epilepsy] What happens when schools know ?
>
>
> First as a kid you are marked and singled out forever for the rest of
> your school years. In my case from 5th grade until high school I was
> singled out on every activity or sport I wanted to go out for. In high
> school I was able to know as I always was able to know when I was to take
> my medicine. Knowing the nurse was never there when I needed to take it, I
> got upset because I was being late for class. My sophmore year I decided
> to take keep my medicine in my pocket as i told the stupid principle that
> the doctor took me off of it. One month later, I was near a water fountain
> and took my pills. The principle saw me and asked What drugs are you
> taking Craig ? I just told him I was taking an asprin as I woke up with a
> headache. No phone calls were made to home or nothing after I was seen
> taking my own medicine when I knew I was to take it. I'm sure the
> principle knew i was telling him the truth. After I started bringing my
> medicines the last 3 years
> of school, there was no follow up by the school regaurding my health and I
> was happy for that. I still though in the last 3 years was not picked for
> team activities except 1 year I made the JV team in basketball. I was only
> picked for the team because the coach knew I wanted to play. If that was
> so, Why didn't I start, as I was mainly a bench warmer. Sure I was good
> enough and better than most on the team. I remember in those days a player
> in the NBA named Bobby Jones, who had seizures as he played for the Denver
> Nuggets & Philadephia 76ers. He started sometimes but he mainly was the
> 6th man off the bench for the 76ers. I guess I was surrounded by ignorant
> and brain dead people when I was in school. All of that should be a
> warning as to how your kids can be treated and singled out if they know
> about their condition. I only had auras in my stomach in those years while
> in school. I only had 2 Grand Mals at home in those years. Why parents if
> your kids are
> no worse than what my condition was, put them on a singled out or
> rejection list in school ? They should have the same rights and chances
> as the other kids have to do things. If they do not because of their
> serious condition of no auras before a Grand Mal or whatever else, then
> there should be some over-potection there to prevent serious harm to them
> and others. Otherwise let them be kids as school is to be fun while
> learning.
>
> [Non-text portions of this message have been removed]
>
>
>
>
>
>
>
> [Non-text portions of this message have been removed]
>
>
>
>
>
>
> Messages in this topic (5)
> ____________
> 1c. Re: What happens when schools know ?
> Posted by: "uniquepnk tds.net" Uniquepnk@tds.
> Date: Tue Sep 1, 2009 6:26 pm ((PDT))
>
> Craig,
>
> I am sorry you got singled out like that. Where I went to school, which
> was
> a small school anyway, all of the teachers and kids knew I had seizures. I
> got to participate in everything I wanted to do. I was a cheerleader and
> in
> clubs. If I had a seizure, I would be taken to the principal's office and
> when it was over I would go back to class. It was not a big deal. It
> shouldn't be something that should keep you out of sports or anything like
> that. I always took my medicine to school with me in my purse everyday and
> no big deal was made then either about it, but the drugs was not as bad as
> they are today.I know things are quite different today, but I still think
> the school needs to know about anykind of health issues like that. Take
> care.
>
> Tammy
>
> On Tue, Sep 1, 2009 at 8:37 AM, craig davis <ohs7778@yahoo.
>
>>
>>
>> First as a kid you are marked and singled out forever for the rest of
>> your school years. In my case from 5th grade until high school I was
>> singled
>> out on every activity or sport I wanted to go out for. In high school I
>> was
>> able to know as I always was able to know when I was to take my
>> medicine.
>> Knowing the nurse was never there when I needed to take it, I got upset
>> because I was being late for class. My sophmore year I decided to take
>> keep
>> my medicine in my pocket as i told the stupid principle that the doctor
>> took
>> me off of it. One month later, I was near a water fountain and took my
>> pills. The principle saw me and asked What drugs are you taking Craig ?
>> I
>> just told him I was taking an asprin as I woke up with a headache. No
>> phone
>> calls were made to home or nothing after I was seen taking my own
>> medicine
>> when I knew I was to take it. I'm sure the principle knew i was telling
>> him
>> the truth. After I started bringing my medicines the last 3 years
>> of school, there was no follow up by the school regaurding my health and
>> I
>> was happy for that. I still though in the last 3 years was not picked
>> for
>> team activities except 1 year I made the JV team in basketball. I was
>> only
>> picked for the team because the coach knew I wanted to play. If that was
>> so,
>> Why didn't I start, as I was mainly a bench warmer. Sure I was good
>> enough
>> and better than most on the team. I remember in those days a player in
>> the
>> NBA named Bobby Jones, who had seizures as he played for the Denver
>> Nuggets
>> & Philadephia 76ers. He started sometimes but he mainly was the 6th man
>> off
>> the bench for the 76ers. I guess I was surrounded by ignorant and brain
>> dead
>> people when I was in school. All of that should be a warning as to how
>> your
>> kids can be treated and singled out if they know about their condition.
>> I
>> only had auras in my stomach in those years while in school. I only had
>> 2
>> Grand Mals at home in those years. Why parents if your kids are
>> no worse than what my condition was, put them on a singled out or
>> rejection
>> list in school ? They should have the same rights and chances as the
>> other
>> kids have to do things. If they do not because of their serious
>> condition of
>> no auras before a Grand Mal or whatever else, then there should be some
>> over-potection there to prevent serious harm to them and others.
>> Otherwise
>> let them be kids as school is to be fun while learning.
>>
>> [Non-text portions of this message have been removed]
>>
>>
>>
>
>
> [Non-text portions of this message have been removed]
>
>
>
>
>
>
> Messages in this topic (5)
> ____________
> 1d. Re: What happens when schools know ?
> Posted by: "Rodolfo Quinones" rodolfoquinones20@
> rodolfoquinones20
> Date: Tue Sep 1, 2009 6:56 pm ((PDT))
>
> Craig,
>
> Sorry to hear that,but if you need help with preventing you from going to
> school "SEE A Lawyer" to help you with the problem. See if the school
> broad about the problem too. But please get the help you need to finish
> your education or start it. Hope every things goes good for you, just
> old Rodolfo
>
> --- On Wed, 9/2/09, uniquepnk tds.net <Uniquepnk@tds.
>
>
> From: uniquepnk tds.net <Uniquepnk@tds.
> Subject: Re: [epilepsy] What happens when schools know ?
> To: epilepsy@yahoogroup
> Date: Wednesday, September 2, 2009, 1:26 AM
>
>
>
>
>
>
> Craig,
>
> I am sorry you got singled out like that. Where I went to school, which
> was
> a small school anyway, all of the teachers and kids knew I had seizures. I
> got to participate in everything I wanted to do. I was a cheerleader and
> in
> clubs. If I had a seizure, I would be taken to the principal's office and
> when it was over I would go back to class. It was not a big deal. It
> shouldn't be something that should keep you out of sports or anything like
> that. I always took my medicine to school with me in my purse everyday and
> no big deal was made then either about it, but the drugs was not as bad as
> they are today.I know things are quite different today, but I still think
> the school needs to know about anykind of health issues like that. Take
> care.
>
> Tammy
>
> On Tue, Sep 1, 2009 at 8:37 AM, craig davis <ohs7778@yahoo. com> wrote:
>
>>
>>
>> First as a kid you are marked and singled out forever for the rest of
>> your school years. In my case from 5th grade until high school I was
>> singled
>> out on every activity or sport I wanted to go out for. In high school I
>> was
>> able to know as I always was able to know when I was to take my
>> medicine.
>> Knowing the nurse was never there when I needed to take it, I got upset
>> because I was being late for class. My sophmore year I decided to take
>> keep
>> my medicine in my pocket as i told the stupid principle that the doctor
>> took
>> me off of it. One month later, I was near a water fountain and took my
>> pills. The principle saw me and asked What drugs are you taking Craig ?
>> I
>> just told him I was taking an asprin as I woke up with a headache. No
>> phone
>> calls were made to home or nothing after I was seen taking my own
>> medicine
>> when I knew I was to take it. I'm sure the principle knew i was telling
>> him
>> the truth. After I started bringing my medicines the last 3 years
>> of school, there was no follow up by the school regaurding my health and
>> I
>> was happy for that. I still though in the last 3 years was not picked
>> for
>> team activities except 1 year I made the JV team in basketball. I was
>> only
>> picked for the team because the coach knew I wanted to play. If that was
>> so,
>> Why didn't I start, as I was mainly a bench warmer. Sure I was good
>> enough
>> and better than most on the team. I remember in those days a player in
>> the
>> NBA named Bobby Jones, who had seizures as he played for the Denver
>> Nuggets
>> & Philadephia 76ers. He started sometimes but he mainly was the 6th man
>> off
>> the bench for the 76ers. I guess I was surrounded by ignorant and brain
>> dead
>> people when I was in school. All of that should be a warning as to how
>> your
>> kids can be treated and singled out if they know about their condition.
>> I
>> only had auras in my stomach in those years while in school. I only had
>> 2
>> Grand Mals at home in those years. Why parents if your kids are
>> no worse than what my condition was, put them on a singled out or
>> rejection
>> list in school ? They should have the same rights and chances as the
>> other
>> kids have to do things. If they do not because of their serious
>> condition of
>> no auras before a Grand Mal or whatever else, then there should be some
>> over-potection there to prevent serious harm to them and others.
>> Otherwise
>> let them be kids as school is to be fun while learning.
>>
>> [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 (5)
> ____________
> 1e. Re: What happens when schools know ?
> Posted by: "mylmy@bnin.net" mylmy@bnin.net mylmy
> Date: Tue Sep 1, 2009 8:17 pm ((PDT))
>
> Craig,
>
> I see the difference is that you were trying to hide having EP
> and I would be upfront telling the teacher, nurse, principal, and
> informative talk with the kids.
>
> That is a horse of a different color.
>
> Millie
>
>
>> First as a kid you are marked and singled out forever for the rest of
>> your school years. In my case from 5th grade until high school I was
>> singled out on every activity or sport I wanted to go out for. In high
>> school I was able to know as I always was able to know when I was to
>> take
>> my medicine. Knowing the nurse was never there when I needed to take it,
>> I
>> got upset because I was being late for class. My sophmore year I decided
>> to take keep my medicine in my pocket as i told the stupid principle
>> that
>> the doctor took me off of it. One month later, I was near a water
>> fountain
>> and took my pills. The principle saw me and asked What drugs are you
>> taking Craig ? I just told him I was taking an asprin as I woke up with
>> a
>> headache. No phone calls were made to home or nothing after I was seen
>> taking my own medicine when I knew I was to take it. I'm sure the
>> principle knew i was telling him the truth. After I started bringing my
>> medicines the last 3 years
>> of school, there was no follow up by the school regaurding my health
>> and
>> I was happy for that. I still though in the last 3 years was not picked
>> for team activities except 1 year I made the JV team in basketball. I
>> was
>> only picked for the team because the coach knew I wanted to play. If
>> that
>> was so, Why didn't I start, as I was mainly a bench warmer. Sure I was
>> good enough and better than most on the team. I remember in those days a
>> player in the NBA named Bobby Jones, who had seizures as he played for
>> the Denver Nuggets & Philadephia 76ers. He started sometimes but he
>> mainly was the 6th man off the bench for the 76ers. I guess I was
>> surrounded by ignorant and brain dead people when I was in school. All
>> of
>> that should be a warning as to how your kids can be treated and singled
>> out if they know about their condition. I only had auras in my stomach
>> in
>> those years while in school. I only had 2 Grand Mals at home in those
>> years. Why parents if your kids are
>> no worse than what my condition was, put them on a singled out or
>> rejection list in school ? They should have the same rights and chances
>> as the other kids have to do things. If they do not because of their
>> serious condition of no auras before a Grand Mal or whatever else, then
>> there should be some over-potection there to prevent serious harm to
>> them
>> and others. Otherwise let them be kids as school is to be fun while
>> learning.
>>
>>
>>
>>
>> [Non-text portions of this message have been removed]
>>
>>
>
>
>
>
>
>
>
> Messages in this topic (5)
> ____________
> ____________
> 2a. Re: seizure at church (and possible school assemblies)
> Posted by: "Jewl Wall" wallja99@fightfor.
> Date: Tue Sep 1, 2009 5:55 am ((PDT))
>
> Tammy and Mark,
>
> I give lectures on epilepsy and seizure alert dogs, I would be happy to
> help
> in the research and send you copies of my speeches.
>
> Jewl, TX
>
> Information on Seizure Response/Alert Dogs
>
> http://www.homestea <blocked::http://www.homestea
> d.com/Tagert/
>
>
>
> [Non-text portions of this message have been removed]
>
>
>
>
>
>
> Messages in this topic (6)
> ____________
> ____________
> 3a. Re: Regular Lamictal vs genetic Lamictal
> Posted by: "Jason" tiscione@gmail.
> Date: Tue Sep 1, 2009 9:33 am ((PDT))
>
> The generic Lamictal color matching appears to be the work of one
> manufacturer, Teva Pharmaceuticals. They color their diamonds according to
> the colors of the same dosage like the shields that GlaxoSmithCline makes.
> Another manufacturer (Zydus Pharmaceuticals) makes the round white ones
> that
> say ZC/80 or ZC/82 or something like that depending on dosage. They're
> lightly scored.
>
> Besides those two there are supposedly at least 4 other manufacturers of
> generic lamotrigine: Apotex Corp, Mylan Pharmaceuticals, Roxane
> Laboratories, and Sandoz. I have no idea what their tabs look like.
>
> Jason
>
> On Mon, Aug 31, 2009 at 10:48 PM, Tammy Wolfgram
> <tammy@maccetera.
>
>> Jason, I think the color of the generic lamictal matches the brand
>> name based on dosage. For example, Megan used to take 200 mg Lamictal
>> tablets, which were blue and shield-shaped. The generic lamictal 200
>> mg tablets were also blue, but were diamond shaped. Both the regular
>> and generic were scored for splitting. When she had to add 50 mg to
>> her 800mg a day dosage, the 50 mg pill was white, and I think it's
>> the 100mg pills that are pink, right? The generic color matching may
>> only be done by one of the companies that makes the generics,
>> although I think it's kind of a good idea.
>>
>> Take care,
>> Tammy
>>
>>
>>
>> ------------
>>
>> 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]
>
>
>
>
>
>
> Messages in this topic (9)
> ____________
> 3b. Re: Regular Lamictal vs genetic Lamictal
> Posted by: "marshiie51" Marshiie51@yahoo.
> Date: Tue Sep 1, 2009 12:50 pm ((PDT))
>
> I(1)Generics change from manufacturer to manufacturer. This can mess up
> your levels.
> (2)You doctor could and in my opinion, SHOULD write DAW on your script.
> No one can give you anything but name brand if Dispense As Written is on
> the script.
> (3)If you are on generic, make sure your doctor knows.
> (4)If you are on generic, make sure you know when your pharmacy changes
> manufacturers.
> (5)Monitor your seizures and your Lamictal levels.
>
> Money is tough. Medicare isn't paying for my meds anymore, because I am
> still covered under my mother's insurance since I am 100% disabled. Is
> paying more for the medication that is KNOWN to help YOUR seizures more
> expensive than ER visits, hospital stays, attacks while being not fully
> aware of what is going on around you, or death not worth it?
>
> Some of that is a little dramatic, but true. At 25, I've learned some of
> those things the hard way. With my seizures meds, my eptimologist has it
> as DAW on Lamictal, Dilantin...
>
> Best of luck!
> Elizabeth
>
> --- In epilepsy@yahoogroup
>>
>> Since it is that time of year when the partical drug coverage under
>> social security or disability, has reached its limit, I was wondering
>> how anyone else is doing on the genetic Lamictal. I am not on it
>> and when mentioning at doctor's office, they express it is not a good
>> idea since the strength of the drug is not as accurate with the
>> genetic one. How did you do if you made this type of change, or
>> what do you think of this? Thanks for your time.
>> Doris
>>
>
>
>
>
>
>
>
> Messages in this topic (9)
> ____________
> 3c. Re: Regular Lamictal vs genetic Lamictal
> Posted by: "Sandy" sande989@yahoo.
> Date: Tue Sep 1, 2009 1:16 pm ((PDT))
>
> My daughter's doctor writes brand name medically necessary on her scripts.
>
> -----Original Message-----
> From: marshiie51 <Marshiie51@yahoo.
> Sent: Tuesday, September 01, 2009 2:49 PM
> To: epilepsy@yahoogroup
> Subject: [epilepsy] Re: Regular Lamictal vs genetic Lamictal
>
>
> I(1)Generics change from manufacturer to manufacturer. This can mess up
> your levels.
> (2)You doctor could and in my opinion, SHOULD write DAW on your script. No
> one can give you anything but name brand if Dispense As Written is on the
> script.
> (3)If you are on generic, make sure your doctor knows.
> (4)If you are on generic, make sure you know when your pharmacy changes
> manufacturers.
> (5)Monitor your seizures and your Lamictal levels.
>
> Money is tough. Medicare isn't paying for my meds anymore, because I am
> still covered under my mother's insurance since I am 100% disabled. Is
> paying more for the medication that is KNOWN to help YOUR seizures more
> expensive than ER visits, hospital stays, attacks while being not fully
> aware of what is going on around you, or death not worth it?
>
> Some of that is a little dramatic, but true. At 25, I've learned some of
> those things the hard way. With my seizures meds, my eptimologist has it
> as DAW on Lamictal, Dilantin...
>
> Best of luck!
> Elizabeth
>
> --- In epilepsy@yahoogroup
>>
>> Since it is that time of year when the partical drug coverage under
>> social security or disability, has reached its limit, I was wondering
>> how anyone else is doing on the genetic Lamictal. I am not on it
>> and when mentioning at doctor's office, they express it is not a good
>> idea si
>
> [The entire original message is not included]
>
> [Non-text portions of this message have been removed]
>
>
>
>
>
>
> Messages in this topic (9)
> ____________
> 3d. Re: Regular Lamictal vs genetic Lamictal
> Posted by: "Julie Hope" epilepsyhealth@
> Date: Tue Sep 1, 2009 8:50 pm ((PDT))
>
> Super good point Elizabeth. Make SURE your druggist does NOT change
> manufacturers on you. This goes for any
> drug you are on and whether it be brand/generic. Doesn't matter. I had a
> change of manufacturers done on me on
> a totally different drug and could tell immediately by the label on the
> bottle. Wasn't same colour and wasn't
> same ... just nothing the same about it. Well thank goodness he let me
> take them back after the weekend and
> get the ones use to having. I never questioned until got home about being
> different and by that time he was
> closed for the weekend...what did I do but called him at home and asked
> why it looked different. Said was same
> thing just different company and shouldn't make a difference. Hey by the
> end of the weekend I was a total
> mess. Thankfully no seizure but was I out of this world and on some other
> planet far away. Wasn't the drs
> fault but the druggist.
> Good job we live in a small town and know everyone and he was willing to
> take back and exchange for the old
> ones on Monday.
> He prob had one of those days when salesman came in and he was trying a
> new kind out who knows.
> Julie
>
> Julie Hope
> epilepsyhealth@
> http://www.2betrhea
> ----- Original Message -----
> From: "marshiie51" <Marshiie51@yahoo.
> To: <epilepsy@yahoogroup
> Sent: Tuesday, September 01, 2009 1:49 PM
> Subject: [epilepsy] Re: Regular Lamictal vs genetic Lamictal
>
>
> I(1)Generics change from manufacturer to manufacturer. This can mess up
> your levels.
> (2)You doctor could and in my opinion, SHOULD write DAW on your script.
> No one can give you anything but name
> brand if Dispense As Written is on the script.
> (3)If you are on generic, make sure your doctor knows.
> (4)If you are on generic, make sure you know when your pharmacy changes
> manufacturers.
> (5)Monitor your seizures and your Lamictal levels.
>
> Money is tough. Medicare isn't paying for my meds anymore, because I am
> still covered under my mother's
> insurance since I am 100% disabled. Is paying more for the medication
> that is KNOWN to help YOUR seizures
> more expensive than ER visits, hospital stays, attacks while being not
> fully aware of what is going on around
> you, or death not worth it?
>
> Some of that is a little dramatic, but true. At 25, I've learned some of
> those things the hard way. With my
> seizures meds, my eptimologist has it as DAW on Lamictal, Dilantin...
>
> Best of luck!
> Elizabeth
>
> --- In epilepsy@yahoogroup
>>
>> Since it is that time of year when the partical drug coverage under
>> social security or disability, has reached its limit, I was wondering
>> how anyone else is doing on the genetic Lamictal. I am not on it
>> and when mentioning at doctor's office, they express it is not a good
>> idea since the strength of the drug is not as accurate with the
>> genetic one. How did you do if you made this type of change, or
>> what do you think of this? Thanks for your time.
>> Doris
>>
>
>
>
>
> ------------
>
> 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
>
>
>
>
>
>
>
>
>
> Messages in this topic (9)
> ____________
> ____________
> 4a. Re: sleep trouble
> Posted by: "marshiie51" Marshiie51@yahoo.
> Date: Tue Sep 1, 2009 12:36 pm ((PDT))
>
> My first question is...does your doctor know your are on generic
> Lamictal? My second is...have you had EEG's showing when you are having
> seizures and what part of the brain they are coming from? I know, I have
> seizures in my sleep. This has messed up my sleep pattern. On nights I
> have a terrible time falling asleep, I will get up drink some tea, and
> tinker around my place for a little bit. Then lay back down to have
> another round of tossing and turning or sweet dreams.
>
> Did you notice any changes in your sleep when your medicine was added or
> adjusted? Always have open channels of communication with your doctor. I
> guess that is a no brainer, but it is completely true. Sometimes just a
> little change in things can make all the difference in things.
>
> Best of luck...
>
> To Sweet Dreams in the Near Future,
> Elizabeth
>
> --- In epilepsy@yahoogroup
>>
>> I have a terrible time getting to sleep at night even without any
>> caffeine during the day. I am on lamictal (Lamotrigine- generic
>> lamictal) 150 mg twice a day and Gabapentin 600 mg at night and I
>> can not get to sleep. I have tried Melatonin and this doesn't help
>> either.
>>
>> Are my meds preventing me? Please HELP.
>>
>> thanks- Ron
>>
>
>
>
>
>
>
>
> Messages in this topic (4)
> ____________
> 4b. Re: sleep trouble
> Posted by: "Liz Welker" lizard110366@
> Date: Tue Sep 1, 2009 2:03 pm ((PDT))
>
> Hey, Ron.
>
> You may have the same problem I do. I started Keppra 2 months ago and JUST
> found out TODAY--lo and behold--that my thyroid levels are SKY-HIGH. I
> have been treated for hypothyroid for 2 years and suddenly started having
> several signs of suspected hyperthyroid after going onto Keppra. Now my
> endo says I may be able to get off the thyroid med completely because
> Keppra has given me complete sz control for the first time EVER, and I
> refuse to stop taking it. (I am 43 in 2 months, always had epi.) Even
> someone whose thyroid is believed to be normal can have this problem from
> epi meds. I have not taken Lamictal, but it's worth checking into.
>
> Good luck!
>
> LIZARD :)
>
> --- On Tue, 9/1/09, korky106_a <korky106_a@yahoo.
>
>
> From: korky106_a <korky106_a@yahoo.
> Subject: [epilepsy] sleep trouble
> To: epilepsy@yahoogroup
> Date: Tuesday, September 1, 2009, 12:55 AM
>
>
>
>
>
>
> I have a terrible time getting to sleep at night even without any caffeine
> during the day. I am on lamictal (Lamotrigine- generic lamictal) 150 mg
> twice a day and Gabapentin 600 mg at night and I can not get to sleep. I
> have tried Melatonin and this doesn't help either.
>
> Are my meds preventing me? Please HELP.
>
> thanks- Ron
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
> [Non-text portions of this message have been removed]
>
>
>
>
>
>
> Messages in this topic (4)
> ____________
> ____________
> 5a. ANSWERS...FINALLY (after THREE HOURS in doc's waiting room)!!!!!!
> Posted by: "Liz Welker" lizard110366@
> Date: Tue Sep 1, 2009 2:32 pm ((PDT))
>
> So I now know that what I suspected was right on: my thyroid levels have
> been through the ROOF. I am now stopping Melatonin (which raises it),
> going back onto Ambien, cutting my thyroid med (and maybe getting off of
> it; bloodwork in 2 weeks to see), and looking forward to SLEEP!!!!!!!
>
> THANKS to EVERYONE who has supported me through this hell!!!!!!!!
>
> LIZARD, SO RELIEVED!!!!
>
>
>
>
> [Non-text portions of this message have been removed]
>
>
>
>
>
>
> Messages in this topic (2)
> ____________
> 5b. Re: ANSWERS...FINALLY (after THREE HOURS in doc's waiting room)!!!!!
> Posted by: "Sandy" uhura102@yahoo.
> Date: Tue Sep 1, 2009 9:56 pm ((PDT))
>
> Have been taking melatonin at night.. now will reconsider it.. Sandy
> Thanks.
>
> --- On Tue, 9/1/09, Liz Welker <lizard110366@
>
>
> From: Liz Welker <lizard110366@
> Subject: [epilepsy] ANSWERS...FINALLY (after THREE HOURS in doc's waiting
> room)!!!!!!
> To: epilepsy@yahoogroup
> Date: Tuesday, September 1, 2009, 4:32 PM
>
>
> So I now know that what I suspected was right on: my thyroid levels have
> been through the ROOF. I am now stopping Melatonin (which raises it),
> going back onto Ambien, cutting my thyroid med (and maybe getting off of
> it; bloodwork in 2 weeks to see), and looking forward to SLEEP!!!!!!!
>
> THANKS to EVERYONE who has supported me through this hell!!!!!!!!
>
> LIZARD, SO RELIEVED!!!!
>
>
>
>
> [Non-text portions of this message have been removed]
>
>
>
> ------------
>
> 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]
>
>
>
>
>
>
> Messages in this topic (2)
> ____________
> ____________
> 6.1. Re: TREATMENT OF EPILEPSY
> Posted by: "sylviaapodaca" sylviaapodaca@
> Date: Tue Sep 1, 2009 3:58 pm ((PDT))
>
> Hi Millie,
> HBOT is a treatment. The oxygen used is considered a "drug". Once you do
> a series of treatments, usually 40, you go back for more as needed. The
> effects last weeks, months, years-everyone is different. I took my
> daughter in about every 6 months. The treatments consist of medicinal
> oxygen under pressure (which happens when you are in the chamber) which
> allows oxygen to reach parts of the body it would not normally reach at
> "ground level" meaning, when you are in the chamber it simulates the
> pressure you would feel if you were 16-32 feet under water (normal
> treatment ATA/PSI). By breathing the oxygen under pressure your
> bloodstream carries the oxygen to the injured areas, in our case, the
> brain. That's why HBOT works so well for burns and wounds because it
> speeds up the healing. Hope I made myself clear. It's really not that
> complicated!
>
> --- In epilepsy@yahoogroup
>>
>> Sylvia,
>>
>> Welcome to our group.
>>
>> It sounds like Hyperbaric is a teatmaent -- not a med. How often
>> do you need a treatment?
>>
>> What does it constite of?
>>
>> Millie
>>
>>
>>
>>
>>
>>
>> > I worked at San Antonio Hyperbarics for several years. Hyperbaric
>> > treatment did help almost everyone that had seizures, my own daughter
>> > included. It is a bit expensive, about $125-$150 a treatment,
>> depending
>> > on how many you want to do. Most places reccommend doing a round of
>> 40
>> > treatments. Then you take a break and go back in a few months,
>> depending
>> > on how you do. My daughter did over 300 treatments in a 5 year time
>> > frame. I can tell you from experience it helps a variety of ailments.
>> > Just keep in mind it is not a cure, but in some cases, it has
>> been. Your
>> > neurologist may not like the idea because hyperbaric medicine is still
>> > considered a treatment for wound care only by most of the medical
>> > community. Do your own research. The staff at San Antonio
>> Hyperbarics
>> > are excellent! Give them a call, they will be happy to answer any
>> > questions you may have. Email me privately if you'd like also.
>> >
>> > --- In epilepsy@yahoogroup
>> >>
>> >> This is amazing!!!
>> >> Keep us posted on how she does. I'm going to ask my daughter's
>> >> neurologist about this when we go see him in a couple of weeks.
>> >> Kim
>> >>
>> >>
>> >> In a message dated 8/23/2009 4:01:35 P.M. Pacific Standard Time,
>> >> wendy.sue@ writes:
>> >>
>> >>
>> >>
>> >>
>> >> Interesting that they didn't discuss HBOT!!! Julia (21 months old)
>> >> has uncontrolable multi focal myoclonic seizures. Julia typically
>> has
>> >> 6 seizures a day each lasting 5 - 10 minutes in duration and we
>> >> typically have to stop a seizure with diastat once in a 3 week
>> period.
>> >> Julia is taking 125 mg of zonagram 2x/day and 100mg of Lictamal
>> >> 2x/day and 325mg/day of vigabatrin (not FDA approved). We also tried
>> >> the keto diet and it did nothing but give Julia the worse case of
>> acid
>> >> reflux. Now 8 days ago we started HBOT and Julia only had 3 yes 3
>> >> extremely short seizures today and is doing so many new things. This
>> >> is SHOCKING!!! They are discovering that seizures arise from parts
>> of
>> >> the brain that are low in oxygen and Hyperberics help promote the
>> >> groth of blood vessles to areas of the body (brain in Julia's case)
>> >> that are low in oxygen. I hope that Julia will be seizure free
>> within
>> >> the next few weeks!! I will keep you all posted. One new thing that
>> >> Julia started doing after one yes ONE treatment was chew her food.
>> >>
>> >> FYI hyperberics are used in the treatment of seizures in China.
>> >>
>> >> Wendy
>> >>
>> >> On Sun, Aug 23, 2009 at 2:33 PM, amanatullah
>> >> Pathan<_dramanatkha
>> >> >
>> >> >
>> >> > wikipedia.org
>> >> > Treatment of EPILEPSY
>> >> >
>> >> > Epilepsy is usually treated with medication prescribed by a
>> >> physician;
>> >> > primary caregivers, neurologists, and neurosurgeons all frequently
>> >> care
>> >> for
>> >> > people with epilepsy. In some cases the implantation of a
>> stimulator
>> >> of
>> >> the
>> >> > vagus nerve, or a special diet can be helpful. Neurosurgical
>> >> operations
>> >> for
>> >> > epilepsy can be palliative, reducing the frequency or severity of
>> >> seizures;
>> >> > or, in some patients, an operation can be curative.
>> >> >
>> >> > [edit] Responding to a seizure
>> >> >
>> >> > In most cases, the proper emergency response to a generalized
>> >> tonic-clonic
>> >> > epileptic seizure is simply to prevent the patient from
>> self-injury
>> >> by
>> >> > moving him or her away from sharp edges, placing something soft
>> >> beneath
>> >> the
>> >> > head, and carefully rolling the person into the recovery position
>> to
>> >> avoid
>> >> > asphyxiation. In some cases the person may seem to start snoring
>> >> loudly
>> >> > following a seizure, before coming to. This merely indicates that
>> the
>> >> person
>> >> > is beginning to breathe properly and does not mean he or she is
>> >> suffocating.
>> >> > Should the person regurgitate, the material should be allowed to
>> drip
>> >> out
>> >> > the side of the person's mouth by itself. If a seizure lasts
>> longer
>> >> than
>> >> 5
>> >> > minutes, or if the seizures begin coming in 'waves' one after the
>> >> other
>> >> -
>> >> > then Emergency Medical Services should be contacted immediately.
>> >> Prolonged
>> >> > seizures may develop into status epilepticus, a dangerous
>> condition
>> >> > requiring hospitalization and emergency treatment.
>> >> >
>> >> > Objects should never be placed in a person's mouth by anybody -
>> >> including
>> >> > paramedics - during a seizure as this could result in serious
>> injury
>> >> to
>> >> > either party. Despite common folklore, it is not possible for a
>> >> person to
>> >> > swallow their own tongue during a seizure. However, it is possible
>> >> that
>> >> the
>> >> > person will bite their own tongue, especially if an object is
>> placed
>> >> in
>> >> the
>> >> > mouth.
>> >> >
>> >> > With other types of seizures such as simple partial seizures and
>> >> complex
>> >> > partial seizures where the person is not convulsing but may be
>> >> > hallucinating, disoriented, distressed, or unconscious, the person
>> >> should be
>> >> > reassured, gently guided away from danger, and sometimes it may be
>> >> necessary
>> >> > to protect the person from self-injury, but physical force should
>> be
>> >> used
>> >> > only as a last resort as this could distress the person even more.
>> In
>> >> > complex partial seizures where the person is unconscious, attempts
>> to
>> >> rouse
>> >> > the person should not be made as the seizure must take its full
>> >> course.
>> >> > After a seizure, the person may pass into a deep sleep or
>> otherwise
>> >> they
>> >> > will be disoriented and often unaware that they have just had a
>> >> seizure,
>> >> as
>> >> > amnesia is common with complex partial seizures. The person should
>> >> remain
>> >> > observed until they have completely recovered, as with a
>> tonic-clonic
>> >> > seizure.
>> >> >
>> >> > After a seizure, it is typical for a person to be exhausted and
>> >> confused.
>> >> > (this is known as post-ictal state). Often the person is not
>> >> immediately
>> >> > aware that they have just had a seizure. During this time one
>> should
>> >> stay
>> >> > with the person - reassuring and comforting them - until they
>> appear
>> >> to
>> >> act
>> >> > as they normally would. Seldom during seizures do people lose
>> bladder
>> >> or
>> >> > bowel control. In some instances the person may vomit after coming
>> >> to.
>> >> > People should not be allowed to wander about unsupervised until
>> they
>> >> have
>> >> > returned to their normal level of awareness. Many patients will
>> sleep
>> >> deeply
>> >> > for a few hours after a seizure - this is common for those having
>> >> just
>> >> > experienced a more violent type of seizure such as a tonic-clonic.
>> In
>> >> about
>> >> > 50% of people with epilepsy, headaches may occur after a seizure.
>> >> These
>> >> > headaches share many features with migraines, and respond to the
>> same
>> >> > medications.
>> >> >
>> >> > It is helpful if those present at the time of a seizure make note
>> of
>> >> how
>> >> > long and how severe the seizure was. It is also helpful to note
>> any
>> >> > mannerisms displayed during the seizure. For example, the
>> individual
>> >> may
>> >> > twist the body to the right or left, may blink, might mumble
>> nonsense
>> >> words,
>> >> > or might pull at clothing. Any observed behaviors, when relayed to
>> a
>> >> > neurologist, may be of help in diagnosing the type of seizure
>> which
>> >> > occurred.
>> >> >
>> >> > [edit] Pharmacologic treatment
>> >> > Main article: Anticonvulsant
>> >> >
>> >> > The mainstay of treatment of epilepsy is anticonvulsant
>> medications.
>> >> Often,
>> >> > anticonvulsant medication treatment will be lifelong and can have
>> >> major
>> >> > effects on quality of life. The choice among anticonvulsants and
>> >> their
>> >> > effectiveness differs by epilepsy syndrome. Mechanisms,
>> effectiveness
>> >> for
>> >> > particular epilepsy syndromes, and side effects, of course, differ
>> >> among
>> >> the
>> >> > individual anticonvulsant medications. Some general findings about
>> >> the
>> >> use
>> >> > of anticonvulsants are outlined below.
>> >> >
>> >> > History and Availability- The first anticonvulsant was bromide,
>> >> suggested in
>> >> > 1857 by Charles Locock who used it to treat women with "hysterical
>> >> epilepsy"
>> >> > (probably catamenial epilepsy). Potassium bromide was also noted
>> to
>> >> cause
>> >> > impotence in men. Authorities concluded that potassium bromide
>> would
>> >> dampen
>> >> > sexual excitement thought to cause the seizures. In fact, bromides
>> >> were
>> >> > effective against epilepsy, and also caused impotence; it is now
>> >> known
>> >> that
>> >> > impotence is a side effect of bromide treatment, which is not
>> related
>> >> to
>> >> its
>> >> > anti-epileptic effects. It also suffered from the way it affected
>> >> behaviour,
>> >> > introducing the idea of the 'epileptic personality' which was
>> >> actually a
>> >> > result of the medication. Phenobarbital was first used in 1912 for
>> >> both
>> >> its
>> >> > sedative and antiepileptic properties. By the 1930s, the
>> development
>> >> of
>> >> > animal models in epilepsy research lead to the development of
>> >> phenytoin
>> >> by
>> >> > Tracy Putnam and H. Houston Merritt, which had the distinct
>> >> > advantage of treating epileptic seizures with less sedation[29]
>> >> advanta
>> >> > 1970s, an National Institutes of Health initiative, the
>> >> Anticonvulsant
>> >> > Screening Program, headed by J. Kiffin Penry, served as a
>> mechanism
>> >> for
>> >> > drawing the interest and abilities of pharmaceutical companies in
>> the
>> >> > development of new anticonvulsant medications.
>> >> >
>> >> > Currently there are 20 medications approved by the Food and Drug
>> >> > Administration for the use of treatment of epileptic seizures in
>> the
>> >> US:
>> >> > carbamazepine (common US brand name Tegretol), clorazepate
>> >> (Tranxene),
>> >> > clonazepam (Klonopin), ethosuximide (Zarontin), felbamate
>> (Felbatol),
>> >> > fosphenytoin (Cerebyx), gabapentin (Neurontin), lacosamide
>> (Vimpat),
>> >> > lamotrigine (Lamictal), levetiracetam (Keppra), oxcarbazepine
>> >> (Trileptal),
>> >> > phenobarbital (Luminal), phenytoin (Dilantin), pregabalin
>> (Lyrica),
>> >> > primidone (Mysoline), tiagabine (Gabitril), topiramate (Topamax),
>> >> valproate
>> >> > semisodium (Depakote), valproic acid (Depakene), and zonisamide
>> >> (Zonegran).
>> >> > Most of these appeared after 1990.
>> >> >
>> >> > Medications commonly available outside the US but still labelled
>> as
>> >> > "investigational" within the US are clobazam (Frisium) and
>> vigabatrin
>> >> > (Sabril). Medications currently under clinical trial under the
>> >> supervision
>> >> > of the FDA include retigabine, brivaracetam, and seletracetam.
>> >> >
>> >> > Other drugs are commonly used to abort an active seizure or
>> interrupt
>> >> a
>> >> > seizure flurry; these include diazepam (Valium, Diastat) and
>> >> lorazepam
>> >> > (Ativan). Drugs used only in the treatment of refractory status
>> >> epilepticus
>> >> > include paraldehyde (Paral), midazolam (Versed), and pentobarbital
>> >> > (Nembutal).
>> >> >
>> >> > Some anticonvulsant medications do not have primary FDA-approved
>> uses
>> >> in
>> >> > epilepsy but are used in limited trials, remain in rare use in
>> >> difficult
>> >> > cases, have limited "grandfather" status, are bound to particular
>> >> severe
>> >> > epilepsies, or are under current investigation. These include
>> >> acetazolamide
>> >> > (Diamox), progesterone, adrenocorticotropic hormone (ACTH,
>> Acthar),
>> >> various
>> >> > corticotropic steroid hormones (prednisone) corticotropi
>> >> >
>> >> > Effectiveness - The definition of "effective" varies. FDA-approval
>> >> usually
>> >> > requires that 50% of the patient treatment group had at least a
>> 50%
>> >> > improvement in the rate of epileptic seizures. About 20% of
>> patients
>> >> with
>> >> > epilepsy continue to have breakthrough epileptic seizures despite
>> >> best
>> >> > anticonvulsant treatment. [30][31].
>> >> >
>> >> > Safety and Side Effects - 88% of patients with epilepsy, in a
>> >> European
>> >> > survey, reported at least one anticonvulsant related side effect.
>> >> [32]
>> >> Most
>> >> > side effects are mild and "dose-related" and can often be avoided
>> or
>> >> > minimized by the use of the smallest effective amount. Some
>> examples
>> >> include
>> >> > mood changes, sleepiness, or unsteadiness in gait. Some
>> >> anticonvulsant
>> >> > medications have "idiosyncratic" side-effects that can not be
>> >> predicted
>> >> by
>> >> > dose. Some examples include drug rashes, liver toxicity
>> (hepatitis),
>> >> or
>> >> > aplastic anemia. Safety includes the consideration of
>> teratogenicity
>> >> (the
>> >> > effects of medications on fetal development) when women with
>> epilepsy
>> >> become
>> >> > pregnant.
>> >> >
>> >> > Principles of Anticonvulsant Use and Management - The goal for
>> >> individual
>> >> > patients is, of course, no seizures and no side effects, and the
>> job
>> >> of
>> >> the
>> >> > physician is to aid the patient to find the best balance between
>> the
>> >> two
>> >> > during the prescribing of anticonvulsants. Most patients can
>> achieve
>> >> this
>> >> > balance best with monotherapy, the use of a single anticonvulsant
>> >> > medication. Some patients, however, require polypharmacy; the use
>> of
>> >> two
>> >> or
>> >> > more anticonvulsants.
>> >> >
>> >> > Serum levels of AEDs can be checked to determine medication
>> >> compliance,
>> >> to
>> >> > assess the effects of new drug-drug interactions upon previous
>> stable
>> >> > medication levels, or to help establish if particular symptoms
>> such
>> >> as
>> >> > instability or sleepiness can be considered a drug side-effect or
>> are
>> >> due to
>> >> > different causes. Children or impaired adults who may not be able
>> to
>> >> > communicate side effects may benefit from routine screening of
>> drug
>> >> levels.
>> >> > Beyond baseline screening, however, trials of recurrent, routine
>> >> blood or
>> >> > urine monitoring show no proven benefits and may lead to
>> unnecessary
>> >> > medication adjustments in most older children and adults using
>> >> routine
>> >> > anticonvulsants. anticon
>> >> >
>> >> > If a person's epilepsy cannot be brought under control after
>> adequate
>> >> trials
>> >> > of two or three (experts vary here) different drugs, that person's
>> >> epilepsy
>> >> > is generally said to be medically refractory. A study of patients
>> >> with
>> >> > previously untreated epilepsy demonstrated that 47% achieved
>> control
>> >> of
>> >> > seizures with the use of their first single drug. 14% became
>> seizure
>> >> free
>> >> > during treatment with a second or third drug. An additional 3%
>> became
>> >> > seizure-free with the use of two drugs simultaneously.
>> seizure-free
>> >> with
>> >> the
>> >> > in addition to or instead of, anticonvulsant medications may be
>> >> considered
>> >> > by those people with continuing
>> >> >
>> >> > [Non-text portions of this message have been removed]
>> >> >
>> >> >
>> >>
>> >>
>> >>
>> >>
>> >>
>> >>
>> >> [Non-text portions of this message have been removed]
>> >>
>> >
>> >
>> >
>>
>
>
>
>
>
>
>
> Messages in this topic (53)
> ____________
> 6.2. Re: TREATMENT OF EPILEPSY
> Posted by: "sylviaapodaca" sylviaapodaca@
> Date: Tue Sep 1, 2009 4:05 pm ((PDT))
>
> I agree with you 100% Oxygenated water is so beneficial! My family drinks
> it all the time. Penta water is expensive. What's the link to the water
> ionizing machine? I remember a vendor came into the hyperbaric clinic
> with a machine that did that, but it was way expensive.
>
>
> --- In epilepsy@yahoogroup
>>
>> Sylvia & Wendy, Thanks for stepping up and sharing this. I am new to the
>> group but my 7 yr old daughter has Tuberous Sclerosis. Seizures and some
>> slight autistic issues as a result for 5 years now. I will look for one
>> of these services in so. Cal near us.
>>
>> We recently purchased a quality water ionizing machine. It reduces the
>> size of the water for higher absorbtion and is highly Oxygenated by the
>> process as well. We have long recognized dehydration to be a trigger for
>> her seizures. Maybe a sensory thing but she hates to drink anything. Our
>> daughters seizures have dropped by almost 50% and her mental / cognitive
>> abilities have greatly increased too. Our only regret was researching it
>> for 2.5 months before allowing her to drink it! I think being better
>> hydrated is also helping her meds work better too. Our doctors and her
>> specialist all laughed at the notion.
>> If anybody wants info on it please email, a link may get deleted.
>> Gianna's Dad
>>
>>
>> --- In epilepsy@yahoogroup
>> >
>> > I worked at San Antonio Hyperbarics for several years. Hyperbaric
>> treatment did help almost everyone that had seizures, my own daughter
>> included. It is a bit expensive, about $125-$150 a treatment,
>> depending on how many you want to do. Most places reccommend doing a
>> round of 40 treatments. Then you take a break and go back in a few
>> months, depending on how you do. My daughter did over 300 treatments
>> in a 5 year time frame. I can tell you from experience it helps a
>> variety of ailments. Just keep in mind it is not a cure, but in some
>> cases, it has been. Your neurologist may not like the idea because
>> hyperbaric medicine is still considered a treatment for wound care
>> only by most of the medical community. Do your own research. The
>> staff at San Antonio Hyperbarics are excellent! Give them a call,
>> they will be happy to answer any questions you may have. Email me
>> privately if you'd like also.
>> >
>>
>
>
>
>
>
>
>
> Messages in this topic (53)
> ____________
> 6.3. Re: TREATMENT OF EPILEPSY
> Posted by: "Wendy Baur" wendy.sue@gmail.
> Date: Tue Sep 1, 2009 4:52 pm ((PDT))
>
> I haven't ever herd of 100% oxygenated water where do you get it?
>
> Wendy
>
> On Tue, Sep 1, 2009 at 7:05 PM, sylviaapodaca<sylviaapodaca@
> wrote:
>>
>>
>> I agree with you 100% Oxygenated water is so beneficial! My family
>> drinks it
>> all the time. Penta water is expensive. What's the link to the water
>> ionizing machine? I remember a vendor came into the hyperbaric clinic
>> with a
>> machine that did that, but it was way expensive.
>>
>> --- In epilepsy@yahoogroup
>>>
>>> Sylvia & Wendy, Thanks for stepping up and sharing this. I am new to
>>> the
>>> group but my 7 yr old daughter has Tuberous Sclerosis. Seizures and
>>> some
>>> slight autistic issues as a result for 5 years now. I will look for one
>>> of
>>> these services in so. Cal near us.
>>>
>>> We recently purchased a quality water ionizing machine. It reduces the
>>> size of the water for higher absorbtion and is highly Oxygenated by the
>>> process as well. We have long recognized dehydration to be a trigger
>>> for her
>>> seizures. Maybe a sensory thing but she hates to drink anything. Our
>>> daughters seizures have dropped by almost 50% and her mental /
>>> cognitive
>>> abilities have greatly increased too. Our only regret was researching
>>> it for
>>> 2.5 months before allowing her to drink it! I think being better
>>> hydrated is
>>> also helping her meds work better too. Our doctors and her specialist
>>> all
>>> laughed at the notion.
>>> If anybody wants info on it please email, a link may get deleted.
>>> Gianna's Dad
>>
>>>
>>>
>>> --- In epilepsy@yahoogroup
>>> wrote:
>>> >
>>> > I worked at San Antonio Hyperbarics for several years. Hyperbaric
>>> > treatment did help almost everyone that had seizures, my own daughter
>>> > included. It is a bit expensive, about $125-$150 a treatment,
>>> depending on
>>> > how many you want to do. Most places reccommend doing a round of 40
>>> > treatments. Then you take a break and go back in a few months,
>>> depending on
>>> > how you do. My daughter did over 300 treatments in a 5 year time
>>> frame. I
>>> > can tell you from experience it helps a variety of ailments. Just
>>> keep in
>>> > mind it is not a cure, but in some cases, it has been. Your
>>> neurologist may
>>> > not like the idea because hyperbaric medicine is still considered a
>>> > treatment for wound care only by most of the medical community. Do
>>> your own
>>> > research. The staff at San Antonio Hyperbarics are excellent! Give
>>> them a
>>> > call, they will be happy to answer any questions you may have. Email
>>> me
>>> > privately if you'd like also.
>>> >
>>>
>>
>>
>
>
>
>
>
> Messages in this topic (53)
> ____________
> 6.4. Re: TREATMENT OF EPILEPSY
> Posted by: "mylmy@bnin.net" mylmy@bnin.net mylmy
> Date: Tue Sep 1, 2009 9:27 pm ((PDT))
>
> Sylvia.
>
> So is your daughters' body in a chamber or like a bubble?
>
> I've worked in a hospital and have seen O2 given in the nose by
> hoses and have also seen a stronger plastic put on a face that
> covers the mouth and nose. I've also seen pictures of people in
> O2 tents. (I think that some some years ago.)
>
> Or is it like a CPAP where they say O2 is given to you while
> you sleep? It evidently is stronger than that
>
> Does she purposely have to breathe deeper or does it just happen?
>
> Millie
>
>
>
>
>
>> Hi Millie,
>> HBOT is a treatment. The oxygen used is considered a "drug". Once you
>> do
>> a series of treatments, usually 40, you go back for more as needed. The
>> effects last weeks, months, years-everyone is different. I took my
>> daughter in about every 6 months. The treatments consist of medicinal
>> oxygen under pressure (which happens when you are in the chamber) which
>> allows oxygen to reach parts of the body it would not normally reach at
>> "ground level" meaning, when you are in the chamber it simulates the
>> pressure you would feel if you were 16-32 feet under water (normal
>> treatment ATA/PSI). By breathing the oxygen under pressure your
>> bloodstream carries the oxygen to the injured areas, in our case, the
>> brain. That's why HBOT works so well for burns and wounds because it
>> speeds up the healing. Hope I made myself clear. It's really not that
>> complicated!
>>
>> --- In epilepsy@yahoogroup
>>>
>>> Sylvia,
>>>
>>> Welcome to our group.
>>>
>>> It sounds like Hyperbaric is a teatmaent -- not a med. How often
>>> do you need a treatment?
>>>
>>> What does it constite of?
>>>
>>> Millie
>
>
>
>
>
>
>
> Messages in this topic (53)
> ____________
> ____________
> 7.1. Re: being taken to hospital unneccisarily
> Posted by: "Kelly Porter" kellyporter@
> Date: Tue Sep 1, 2009 5:15 pm ((PDT))
>
> One of the things my epileptologist is very specific about is the fact
> that there is no need for me to go to the hospital unless I have a
> seizure that lasts more then 5 minutes. For everyone who wears a medic
> alert braclet that might be the answer to this issue. Ask your specific
> doctor "how long of a seizure do I need to have before you feel the need
> for me to go to the hospital to be seen?" Put that on your medic alert
> something like this:
>
> "Epilepsy-no need for hospital unless seizure is 5+ mins. or repeated
> incidents. will be post-ictal-this is normal w/o need for medical
> treatment."
>
> Perhaps we need to take it upon ourselves to inform the medics who show
> up what we want done.
>
> Kelly P
>
> Tammy Wolfgram wrote:
>> Well Steve, every time they called an ambulance for Megan, the
>> seizure was either over before they called the ambulance or shortly
>> after, so that she was always post-ictal by the time the ambulance
>> got there. And they STILL always wanted to haul her off to the
>> hospital. I don't care if an ambulance is called. What I object to is
>> the paramedics automatically hauling her to the hospital because she
>> is post ictal and can't communicate effectively at that point.
>>
>>
>>
>>
>
>
>
>
>
>
> Messages in this topic (32)
> ____________
> ____________
> 8a. Re: same/different-
> Posted by: "Kelly Porter" kellyporter@
> Date: Tue Sep 1, 2009 7:24 pm ((PDT))
>
> FWIW--its the spice called "Accent". Many people use it in cooking with
> no harmful effects. It IS MSG. I have some in my spice cabinet
> now--YES I use it and I am in intractable post right temporal lobectomy
> epileptic. NONE of my 10 post surgical seizures in the 17 months since
> my surgery have been tied to when I used it. So there goes that theory
> as far as my seizures go.
>
> Kelly P
>
> Jason wrote:
>> Millie,
>>
>> You can buy it at the spice racks in supermarkets; they make it from
>> fermented molasses. You sprinkle it on meat or seafood in lieu of salt.
>>
>> I'm almost tempted to get some now. They stopped putting it in a lot of
>> stuff because of the bad publicity.
>>
>> Jason
>>
>>
>
>
>
>
>
>
> Messages in this topic (5)
> ____________
> ____________
> 9.1. Re: high numbers of seizures a day (old post)
> Posted by: "Kelly Porter" kellyporter@
> Date: Tue Sep 1, 2009 7:49 pm ((PDT))
>
> Prior to being diagnosed I was having a minimum of 12-15 a day that were
> ocuntable. my gues snow is it was much higher then that becuase I
> wasn't counting the ones I just thought were "dizzyness"-
> the ones that drove me to the Dr. and then took months to diagnosis-yes
> months.
>
> Kelly
>
> Jason wrote:
>>> a man with his toddler
>>> son came up to me to tell me that this cute little boy had had twenty
>>> or thirty seizures a day starting in infancy, but that his seizures
>>> had been completely controlled by surgery. Are these really frequent
>>> seizures more common in very young children? Are there particular
>>> types of epilepsy that are characterized by many seizures a day?
>>>
>>
>>
>
>
>
>
>
>
> Messages in this topic (53)
> ____________
> ____________
> 10a. Re: Disability (just an honest response)
> Posted by: "Kelly Porter" kellyporter@
> Date: Tue Sep 1, 2009 8:19 pm ((PDT))
>
> Julie,
>
> I can tell you that having EP does NOT automatically qualify you for
> SSDI. To get SSDI you have to be unable to work any competitive job at
> all for which you are trained or educated, or can be expected to become
> trained or educated for. As you can imagine having EP is not a good
> enough claim to say you can't work. Many many many epileptics work
> every day in competitive jobs for which they are trained and educated.
> You meet the definition when you are having ongoing intractable seizures
> and/or side effects so severe as to interfere with every day living.
> Also if there are other medical conditions that go along with your EP.
> The definition of ongoing seizure according to the SSDI standard is
> technically "one per week".
>
> My advise--(don'
> anyone who asked me)--dont apply unless you are seriously disabled and
> can honestly say that you could not go out and find any job for which
> you are reasonably trained or educated. SSDI isn't designed to help
> everyone who got sick even if its serious--it is designed to help those
> who absolutely cannot work. When people who could go get a job apply
> for SSDI, which thousands are doing, it backs up the system. Currently
> the system is working on applications as old as over 3 years. I finally
> had my hearing in July--I applied in June of 2006.
>
> Some perspective-
> lobectomy, still intractable, on 3 AED meds so have multiplied side
> effects, have an additional neurological disorder on top of epilepsy, I
> have herniated disks in two places, I have a blood clotting disorder
> that cannot be named because 90% of them cant be identified, I have
> central sleep apnea, now I have a thyroid problem.....
> on........ask yourself--am i applying because I really cant go get a job.
>
> julies2go wrote:
>> I am a stay at home mom with two young kids and diagnosed this year with
>> ep. Does anyone know if I can recieve disability payments from social
>> security or how I go about it? I have not worked in five years and my
>> husbands income is sufficient, but I would like the extra income to help
>> cover medical expenses, child care and transportation costs. What
>> programs are available to help the financial burdon of this condition?
>> Does my neurologist need to fill out any paperwork?
>>
>> Julie B
>>
>
>
>
>
>
>
> Messages in this topic (22)
> ____________
> 10b. Re: Disability (just an honest response)
> Posted by: "Julie Hope" epilepsyhealth@
> Date: Tue Sep 1, 2009 9:20 pm ((PDT))
>
> Yes Kelly you are definitely right there. Probably why it is so hard to
> get. If you can apply for it
> mentioning some other condition that truly would fit them then do .... it
> would get a much quicker response.
> Example, should you have a broken back, :)) from a seizure, the reason on
> the sheet would be that not
> epilepsy, epilepsy you can add as a side thing as you got the back problem
> because of the epilepsy. Then they
> will/should act more quickly. Can't answer any of those questions there
> for you Julie as I have never tried
> applying for it. Don't cut yourself short, it never hurts to try.
> Julie
>
> Julie Hope
> epilepsyhealth@
> http://www.2betrhea
> ----- Original Message -----
> From: "Kelly Porter" <kellyporter@
> To: <epilepsy@yahoogroup
> Sent: Tuesday, September 01, 2009 9:19 PM
> Subject: Re: [epilepsy] Disability (just an honest response)
>
>
> Julie,
>
> I can tell you that having EP does NOT automatically qualify you for
> SSDI. To get SSDI you have to be unable to work any competitive job at
> all for which you are trained or educated, or can be expected to become
> trained or educated for. As you can imagine having EP is not a good
> enough claim to say you can't work. Many many many epileptics work
> every day in competitive jobs for which they are trained and educated.
> You meet the definition when you are having ongoing intractable seizures
> and/or side effects so severe as to interfere with every day living.
> Also if there are other medical conditions that go along with your EP.
> The definition of ongoing seizure according to the SSDI standard is
> technically "one per week".
>
> My advise--(don'
> anyone who asked me)--dont apply unless you are seriously disabled and
> can honestly say that you could not go out and find any job for which
> you are reasonably trained or educated. SSDI isn't designed to help
> everyone who got sick even if its serious--it is designed to help those
> who absolutely cannot work. When people who could go get a job apply
> for SSDI, which thousands are doing, it backs up the system. Currently
> the system is working on applications as old as over 3 years. I finally
> had my hearing in July--I applied in June of 2006.
>
> Some perspective-
> lobectomy, still intractable, on 3 AED meds so have multiplied side
> effects, have an additional neurological disorder on top of epilepsy, I
> have herniated disks in two places, I have a blood clotting disorder
> that cannot be named because 90% of them cant be identified, I have
> central sleep apnea, now I have a thyroid problem.....
> on........ask yourself--am i applying because I really cant go get a job.
>
> julies2go wrote:
>> I am a stay at home mom with two young kids and diagnosed this year with
>> ep. Does anyone know if I can
>> recieve disability payments from social security or how I go about it?
>> I have not worked in five years and
>> my husbands income is sufficient, but I would like the extra income to
>> help cover medical expenses, child
>> care and transportation costs. What programs are available to help the
>> financial burdon of this condition?
>> Does my neurologist need to fill out any paperwork?
>>
>> Julie B
>>
>
>
>
> ------------
>
> 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
>
>
>
>
>
>
>
>
>
> Messages in this topic (22)
> ____________
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