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
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@
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)
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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)
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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]
------------
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[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@
>
>
> 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)
____________
6.4. 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
>
------------
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Messages in this topic (22)
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