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Re: What Kinds of Seizures?

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In a message dated 3/9/02 6:31:27 AM Pacific Standard Time, slmclauchlan@... writes:

Cornelia:

My son has simple partial seizures. He has been known to fall out of bed

during a seizure. For him every muscle in his body tenses up. He doesn't

lose consciousness but he cannot communicate while having a seizure.

However, after the seizure he can tell us what we said to him during the

seizure so we know he hasn't lost consciousness. His eyes are open during

his seizures. Sometimes his limbs shake/jerk during his seizures, but not

often.

I don't know if this will help, but it's an example of one type of seizure.

>From: "john moisuk jr." <moisuk1@...>

>Date: Fri, 08 Mar 2002 13:07:13 +0000

>

>Hi,

>Just a note to see if any of you can identify what kind of seizure

>activity would have caused our son to like in my husband's arms with

>eyes wide open, pupils dilated, and shake all over his entire body for

>about five minutes (not sure now) before this all stopped and he became

>responsive and was able to walk to the waiting gurney to go to hospital.

>There was no incontinence. For unknown reason, he fell out of bed, hit

>his head slightly with mild laceration, no stitches. I think the sz

>caused the fall, not vice a versa.

>TIA

>Cornelia

One time when our pediatric neurologist was actually in the room watching one of 's seizures, (this was towards the end of his time having seizures), I said, "now what kind of seizure was that?" He laughed and replied that now he knew what I was trying to describe but that he couldn't name it either, other than that it was a generalized seizure. The seizures changed a lot as the medications changed, I really think as a result of the medication. We went through all the medications that were available except for Topomax. When it came time to put him on that we were also given the option of the diet and we took that and weaned him rather quickly from his other medications.

The first (Cornelia's) description would have to be a generalized seizure, I would even guess a grand mal. I have heard seizures are like migraines, never the same for any two people and capable of many different manifestations in just one person. Remember, we don't know why they are occurring. Maybe when we learn more about that we will have more names for the different appearances. I sure hope we learn a lot more about them soon. Besides which drugs will stop them; I mean as in why they occur in the first place, or what causes them.

Those were terrible times for me.

Elaine

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Cornelia:

My son has simple partial seizures. He has been known to fall out of bed

during a seizure. For him every muscle in his body tenses up. He doesn't

lose consciousness but he cannot communicate while having a seizure.

However, after the seizure he can tell us what we said to him during the

seizure so we know he hasn't lost consciousness. His eyes are open during

his seizures. Sometimes his limbs shake/jerk during his seizures, but not

often.

I don't know if this will help, but it's an example of one type of seizure.

>From: " john moisuk jr. " <moisuk1@...>

>Date: Fri, 08 Mar 2002 13:07:13 +0000

>

>Hi,

>Just a note to see if any of you can identify what kind of seizure

>activity would have caused our son to like in my husband's arms with

>eyes wide open, pupils dilated, and shake all over his entire body for

>about five minutes (not sure now) before this all stopped and he became

>responsive and was able to walk to the waiting gurney to go to hospital.

>There was no incontinence. For unknown reason, he fell out of bed, hit

>his head slightly with mild laceration, no stitches. I think the sz

>caused the fall, not vice a versa.

>TIA

>Cornelia

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Elaine writes in part:

>Besides which drugs will stop them; I mean as in why they occur in the first place, or what causes >them.

Hi Elaine,

I have asked every Neurologist that I have every had that Question and every single response was, "Excluding Symptomatic, I have absolutey no idea what causes Seizures".

Please keep in mind that when we talk about Epilepsy we are talking about One Of The Oldest Ailments know to Mankind.

Re: [ ] What Kinds of Seizures?

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,

At least you took the time to question your neurologists about the cause

of your epilepsy. That's a step in the right direction. Some

doctors - such as the ones at s-Reiter - specialize in discovering

what it is that triggers a person's seizures. No two people can make

the exact same claim as to a specific trigger. No two people have

the exact same metabolism or body chemistry. That's probably one

of the reasons for s-Reiter's five-day intensive program. You

cannot reach a determination of one's seizure triggers by simply doing

a routine check-up, blood test, EEG or MRI.

More often than not a person who has epilepsy has other problems as

well. I know people who are ADD, autistic, bi-polar, or diabetic,

etc. in addition to having epilepsy. That is why I think isolating

one's epilepsy from other problems is a mistake. Everything that

is not as it should be needs to be taken into consideration by the doctor

treating the epilepsy - including the possible side-effects of medications.

No one goes to a doctor wanting more problems. No one goes to a doctor

wanting to exchange one problem for another. Even getting

one's seizures under control should not the sole goal of seeking medical

help. The goal of getting medical help is either to prevent a problem

or get rid of it. I learned the hard way that simply getting my seizures

"under control" was not good enough. Why? Because I was told

in order to bring my gran mal seizures under control I needed to take medication.

I needed to do this for the balance of my life. What I was not told

is that taking the medication would do damage to my brain and body in ways

which had nothing to do with seizures. I had no idea my doctors

would have me exchanging one problem for a myriad of others. This

lowered my quality of life. Thank God, I found some doctors who told

me the truth about my particular situation. In my case, it was the

folks at s-Reiter. Today, I am drug-free and nearly seizure-free

thanks to them.

Lamar

wakiza21- wrote:

Elaine

writes in part:>Besides

which drugs will stop them; I mean as in why they occur in the first place,

or what causes >them.Hi

Elaine,I have asked every

Neurologist that I have every had that Question and every single response

was, "Excluding Symptomatic, I have absolutey no idea what causes Seizures".Please

keep in mind that when we talk about Epilepsy we are talking about One

Of The Oldest Ailments know to Mankind.

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Lamar

I am already in the process of sending info to s Reiter, as they are very interested in my son. Thanks for letting us know about this.

Kathy

Re: [ ] What Kinds of Seizures?

, At least you took the time to question your neurologists about the cause of your epilepsy. That's a step in the right direction. Some doctors - such as the ones at s-Reiter - specialize in discovering what it is that triggers a person's seizures. No two people can make the exact same claim as to a specific trigger. No two people have the exact same metabolism or body chemistry. That's probably one of the reasons for s-Reiter's five-day intensive program. You cannot reach a determination of one's seizure triggers by simply doing a routine check-up, blood test, EEG or MRI. More often than not a person who has epilepsy has other problems as well. I know people who are ADD, autistic, bi-polar, or diabetic, etc. in addition to having epilepsy. That is why I think isolating one's epilepsy from other problems is a mistake. Everything that is not as it should be needs to be taken into consideration by the doctor treating the epilepsy - including the possible side-effects of medications. No one goes to a doctor wanting more problems. No one goes to a doctor wanting to exchange one problem for another. Even getting one's seizures under control should not the sole goal of seeking medical help. The goal of getting medical help is either to prevent a problem or get rid of it. I learned the hard way that simply getting my seizures "under control" was not good enough. Why? Because I was told in order to bring my gran mal seizures under control I needed to take medication. I needed to do this for the balance of my life. What I was not told is that taking the medication would do damage to my brain and body in ways which had nothing to do with seizures. I had no idea my doctors would have me exchanging one problem for a myriad of others. This lowered my quality of life. Thank God, I found some doctors who told me the truth about my particular situation. In my case, it was the folks at s-Reiter. Today, I am drug-free and nearly seizure-free thanks to them. Lamar wakiza21- wrote:

Elaine writes in part:>Besides which drugs will stop them; I mean as in why they occur in the first place, or what causes >them.Hi Elaine,I have asked every Neurologist that I have every had that Question and every single response was, "Excluding Symptomatic, I have absolutey no idea what causes Seizures".Please keep in mind that when we talk about Epilepsy we are talking about One Of The Oldest Ailments know to Mankind.

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Lamar, the Ritter clinic you keep talking about, what was involved in

your treatment? Did you actually go to the clininc or just consult via

E-mail? What was involved in the treatment?

Hope these questions are not too personal and you do not consider me probing.

Thanks, Tracey

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Lamar,

Can you please tell me which medications do harm to the brain? My daughter takes sodium valproate (200mg twice per day). She is extremely bright.

She had her first seizure the day before Christmas last year. She simply fell backwards and was very pale. She didn’t jerk or clench, her eyes were open. After two minutes it was over. We had her EEG taken (normal) but she was put on sodium valproate just in case. In the following 5 weeks, she had one seizure per week, the worst being a “stare” of 6 minutes – at least she wasn’t falling backwards any more. We took her to a homeopath who put her on homeopathic medication and Chinese tea, and she hasn’t had a seizure since - the last seizure was 7 weeks ago.

I noticed the triggers are heat (we live in South Africa, so its hot during December and January), low blood sugar and excitement, olive oil, and wheat. So I avoid these things too.

Thanks.

Lorinda

,

At least you took the time to question your neurologists about the cause of your epilepsy. That's a step in the right direction. Some doctors - such as the ones at s-Reiter - specialize in discovering what it is that triggers a person's seizures. No two people can make the exact same claim as to a specific trigger. No two people have the exact same metabolism or body chemistry. That's probably one of the reasons for s-Reiter's five-day intensive program. You cannot reach a determination of one's seizure triggers by simply doing a routine check-up, blood test, EEG or MRI.

More often than not a person who has epilepsy has other problems as well. I know people who are ADD, autistic, bi-polar, or diabetic, etc. in addition to having epilepsy. That is why I think isolating one's epilepsy from other problems is a mistake. Everything that is not as it should be needs to be taken into consideration by the doctor treating the epilepsy - including the possible side-effects of medications. No one goes to a doctor wanting more problems. No one goes to a doctor wanting to exchange one problem for another. Even getting one's seizures under control should not the sole goal of seeking medical help. The goal of getting medical help is either to prevent a problem or get rid of it. I learned the hard way that simply getting my seizures " under control " was not good enough. Why? Because I was told in order to bring my gran mal seizures under control I needed to take medication. I needed to do this for the balance of my life. What I was not told is that taking the medication would do damage to my brain and body in ways which had nothing to do with seizures. I had no idea my doctors would have me exchanging one problem for a myriad of others. This lowered my quality of life. Thank God, I found some doctors who told me the truth about my particular situation. In my case, it was the folks at s-Reiter. Today, I am drug-free and nearly seizure-free thanks to them.

Lamar

wakiza21- wrote:

Elaine writes in part:>Besides which drugs will stop them; I mean as in why they occur in the first place, or what causes >them.Hi Elaine,I have asked every Neurologist that I have every had that Question and every single response was, " Excluding Symptomatic, I have absolutey no idea what causes Seizures " .Please keep in mind that when we talk about Epilepsy we are talking about One Of The Oldest Ailments know to Mankind.

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Lorinda,

Your question to me - which medications do harm to the brain? - is too

broad a question. Why? Because I personally think all medications

designed to prevent seizures adversely affect the brain. To my way

of thinking, "adversely affecting the brain" could be interpreted as "harming

the brain." For some people this may appear a catch-22 situation

- either do harm to the brain and stop the seizures or allow the seizures

to occur and do nothing. No doubt, for many people, life with

epilepsy must look like a "no-win" situation.

But, I am an advocate of the philosophy that says "when the going

gets tough the tough get going." I didn't truly begin to understand

my epilepsy until my life began to unravel at the speed of a rollercoaster

going downhill. Suddenly, I needed to start connecting the dots of

things in my life which were not right. I needed answers to questions.

And, when my own doctors were not answering my questions to my satifaction,

I had no choice but to seek advice wherever I could find it. The

most helpful advise I found came initially from the Internet. It's

amazing how quickly you can become educated when you fear your very existence

is being threatened.

The reason anti-convulsant medications work to prevent elictrical storms(seizures)

from occurring in the brain in the first place is because they change the

way the brain works in some fashion. More often than not, when you

change the way the brain gets the job done - including slowing down the

speed of the overall operation - there are going to be consequences.

Therefore, it just makes sense to learn the potential conseqences of taking

certain medications before you start taking them. In fact, it makes

a great deal of sense to learn as much about an individual's epileptic

condition as possible before implementing solutions to solve the problems.

Indeed, investigate more than one avenue of treatment. After all,

it costs a lot less to learn about your options than it actually does to

dive into them. I have suggested here numerous times that people

seek second opinions. The s-Reiter Clinic will respond to questions

online. They will even review medical records for free to determine

if a person can actually benefit from their clinic's treatment protocols.

I have a feeling that most people who go in for treatment concerning an

epileptic condition do not do it for a 5-day period. But, that is

just exactly what s-Reiter offers its brand new patients who are

out-of-towners - which just happens to be the overwhelming majority of

their patients. You might do well to visit their website. They

are listed in our Bookmarks section.

Please understand, I am not a medical professional. Please

do not go on or off any medication based on my experience. Each

person with epilepsy is a unique case. A decision needs to be made

by a medical professional as to what medication is good or not. But,

you can certainly benefit by getting a little education under your belt.

It helps to look at the adverse reaction information which comes with the

medication when you pick it up from the pharmacy. It also helps to

visit websites like the one listed in our Bookmarks section for Drug Information

Interaction Site. I particularly like this website because you can

actually request information on more than one drug at a time.

That is to say, are there different potential side-effects for a person

taking Dilantin alone than there would be for a person taking Dilantin

and Phenobarbital at the same time? This website is not just

good for epileptic medications. This website is good for gathering

information on any prescription or combination of prescription medications.

Therefore, it should be utilized by both doctors and the public-at-large.

When I was first diagnosed with epilepsy, I was taking both Dilantin

and Phenobarbital at the same time. But, at the time I was taking

them I did not have a clue as to how they might be adversely affecting

my life. Neither myself nor my parents asked any questions about

those medications to my doctors. My doctors did not volunteer

the information, either. So, who was at fault? I guess we all

were. Some people keep a journal regarding their epileptic experiences.

Perhaps that would prove beneficial for you in reporting back to doctors?

I doubt anyone would disagree with me that being able to bring seizures

under control without drugs is the best option. But, my experience

has been that most doctors do not give their patients that option.

That is why I am so impressed with s-Reiter and thankful I found

them. It is one epilepsy clinic which actually gives people who qualify

for a drug-free lifestyle the tools with which to do it.

Lamar

Lorinda wrote:

Lamar,

Can you please tell me which medications do harm

to the brain? My daughter takes sodium valproate (200mg twice per

day). She is extremely bright.

She had her first seizure the day before Christmas

last year. She simply fell backwards and was very pale. She

didn’t jerk or clench, her eyes were open. After two minutes it was

over. We had her EEG taken (normal) but she was put on sodium valproate

just in case. In the following 5 weeks, she had one seizure per week,

the worst being a “stare” of 6 minutes – at least she wasn’t falling backwards

any more. We took her to a homeopath who put her on homeopathic medication

and Chinese tea, and she hasn’t had a seizure since - the last seizure

was 7 weeks ago.

I noticed the triggers are heat (we live in South

Africa, so its hot during December and January), low blood sugar and excitement,

olive oil, and wheat. So I avoid these things too.

Thanks.

Lorinda

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