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Appointment. Confused.

Tue, 10/26/2010 - 19:22
Hi, I just want to keep the people up-dated.  So, I went to my appointment today, and the doctor thinks I have ADD.  I have 30 seizures a day, and, yes, some things of ADD do add up.  But Epilepsy just seems like the correct thing.  I don't know.  But I have two more EEG's to take, one this Thursday.  Need to get to the bottom of this.

Comments

Re: Appointment. Confused.

Submitted by zealot on Thu, 2010-10-28 - 11:31

Trent,

You are not forcing me to do anything.  It is my choice to try to help you.  It's tough enough to be a teenager without your brain playing tricks on you!

I had migraines, seizures, auras, concentration problems, etc., for as long as I can remember.  I remember picking myself up off the floor after having passed out home alone at age 12.  I lost count of how many head injuries I'd gotten before I started Kindergarten.  I know it can be bad.

I somehow managed to compensate and did well in school.  I did well in life until some terrible things happened and I tried to get help, was misdiagnosed, and after eight years of mistreatment, I'm much sicker than when I never took a pill or went to see the doctor.

I want nothing more than for you to have the best life possible.  That means your doctors need to find out what's wrong with you.  Please make sure you get at least a second opinion before you accept treatment for "not epilepsy." 

"Not epilepsy" covers a lot of ground.  ADD/ADHD is another minefield.  You don't want to go there either.

A lot of things can cause difficulty concentrating and putting things together.  You keep saying you have absence seizures.  I'm not sure what you mean by this because if you have typical absence seizures you wouldn't know it unless someone told you.  That's the only reason I know I have them.

What you are describing sound more like partial seizures where you are aware that something is happening.  These are the most common types of seizures.  Absence seizures occur deep in the brain and will not show up with surface electrodes.  They need to be diagnosed by observation and examination. 

I actually had at least one on camera during my VEEG.  The nurse came in and asked me if I was OK and if I knew I was blinking and that she'd come in because I'd been staring blankly into space.  I answered yes to the first question and no to the second.  That is a textbook typical absence seizure.

I don't think you have atypical absence seizures because your life woud be a whole lot worse if you did.  They are not awful seizures, but they go along with a lot of other awful things.  You seem to have an above normal IQ even with your difficulties.  That is a definite rule out for atypical absence seizures.

Partial seizures may or may not be detected with surface electrodes.  It depends on where they occur.  So you see, having seizures doesn't mean you have epilepsy and not having a seizure the doctor sees doesn't mean you don't.

Don't feel stupid if you can't understand this.  The whole thing about diagnosing epilepsy doesn't make any sense so it's really hard to understand.  You just need to make sure that you get the help you need and that no one makes you take medicine that makes you sick.

If you get medicine, take it exactly the way you're supposed to.  Pay very close attention to how you feel.  Make sure you tell your parents, teachers, doctors, etc. how you feel. 

If you feel bad don't be quiet about it.  If you feel better, let them know.  If you just feel different, not better, not worse, let them know.  Different isn't better and no medicine is better than medicine that doesn't make you better.

You need to ask your doctor these questions and he needs to explain this stuff to you.  If he doesn't, ask your parents to find you a doctor who is willing to help you, not just talk at you.

Have you been tested for learning disabilities?  There could be a lot of things going on here.  You need to get to the root cause.

Devorah Zealot Soodak http://psychout.typepad.com/ the zealot needs help!

Trent,

You are not forcing me to do anything.  It is my choice to try to help you.  It's tough enough to be a teenager without your brain playing tricks on you!

I had migraines, seizures, auras, concentration problems, etc., for as long as I can remember.  I remember picking myself up off the floor after having passed out home alone at age 12.  I lost count of how many head injuries I'd gotten before I started Kindergarten.  I know it can be bad.

I somehow managed to compensate and did well in school.  I did well in life until some terrible things happened and I tried to get help, was misdiagnosed, and after eight years of mistreatment, I'm much sicker than when I never took a pill or went to see the doctor.

I want nothing more than for you to have the best life possible.  That means your doctors need to find out what's wrong with you.  Please make sure you get at least a second opinion before you accept treatment for "not epilepsy." 

"Not epilepsy" covers a lot of ground.  ADD/ADHD is another minefield.  You don't want to go there either.

A lot of things can cause difficulty concentrating and putting things together.  You keep saying you have absence seizures.  I'm not sure what you mean by this because if you have typical absence seizures you wouldn't know it unless someone told you.  That's the only reason I know I have them.

What you are describing sound more like partial seizures where you are aware that something is happening.  These are the most common types of seizures.  Absence seizures occur deep in the brain and will not show up with surface electrodes.  They need to be diagnosed by observation and examination. 

I actually had at least one on camera during my VEEG.  The nurse came in and asked me if I was OK and if I knew I was blinking and that she'd come in because I'd been staring blankly into space.  I answered yes to the first question and no to the second.  That is a textbook typical absence seizure.

I don't think you have atypical absence seizures because your life woud be a whole lot worse if you did.  They are not awful seizures, but they go along with a lot of other awful things.  You seem to have an above normal IQ even with your difficulties.  That is a definite rule out for atypical absence seizures.

Partial seizures may or may not be detected with surface electrodes.  It depends on where they occur.  So you see, having seizures doesn't mean you have epilepsy and not having a seizure the doctor sees doesn't mean you don't.

Don't feel stupid if you can't understand this.  The whole thing about diagnosing epilepsy doesn't make any sense so it's really hard to understand.  You just need to make sure that you get the help you need and that no one makes you take medicine that makes you sick.

If you get medicine, take it exactly the way you're supposed to.  Pay very close attention to how you feel.  Make sure you tell your parents, teachers, doctors, etc. how you feel. 

If you feel bad don't be quiet about it.  If you feel better, let them know.  If you just feel different, not better, not worse, let them know.  Different isn't better and no medicine is better than medicine that doesn't make you better.

You need to ask your doctor these questions and he needs to explain this stuff to you.  If he doesn't, ask your parents to find you a doctor who is willing to help you, not just talk at you.

Have you been tested for learning disabilities?  There could be a lot of things going on here.  You need to get to the root cause.

Devorah Zealot Soodak http://psychout.typepad.com/ the zealot needs help!

Re: Appointment. Confused.

Submitted by trentonbest on Thu, 2010-10-28 - 11:44
Here's the thing.  I know when I've had it, but not anything that happened DURING the "seizure".  I have Dyslexia, Dysgraphia, possibly NLD and Dyscalculia.  So, yeah.  My whole development process was weird.  It always took me longer to learn how to do something than normal kids.  I'm getting by though.  And I am in Pre-AP classes, and am doing well in those classes.  You could say I have above-average, but I feel stupid sometimes, just because I'm not smart outside of school.

Re: Appointment. Confused.

Submitted by zealot on Thu, 2010-10-28 - 12:13

Trent,

You and me both.  I am dyslectic, dyscalculic, and at times, dysgraphic.  I had to teach myself how to write again a couple of years ago and I'm desperately trying to regain what I lost after my last really bad couple of months of seizures. 

That's why I have to turn writing into conversation or art.  I can't just write.  I can hardly write at all by hand, I really have to use a keyboard.

I don't remember what NLD is.  Maybe you can teach me something.

You are obviously very bright because you are pre-AP track in spite of your learning disabilities.  You could very well have undiagnosed TLE.  The other people I've met who are the most like me including the learning/developental disabilities were either diagnosed with TLE or had it, were misdiagnosed, and are really, really sick or worse.

It's a tough thing.  Just make sure you take good care of yourself.  I don't think you're "stupid" out of school either.  I bet you can do lots of things the other kids can't even though the stuff that's easy for them is hard or impossible for you.  That doesn't make you stupid or "not smart."  It just makes you different.

Different is a tough way to be.  I know because I'm "different."  My high IQ isn't normal.  My seizures aren't normal.  My way of thinking isn't normal.  My way of speaking isn't normal.  My way of writing isn't.  But they work for me.

Doctors and psychiatrists all want to pathologise not normal.  There's nothing wrong with abnormal.  Being really smart isn't normal, but would you not want to be smart becase of that?  That's what's so stupid about the whole thing. 

Normal doesn't mean good, it doesn't mean bad, it just means the statistical norm.  Numbers don't care!

Devorah Zealot Soodak http://psychout.typepad.com/ the zealot needs help!

Trent,

You and me both.  I am dyslectic, dyscalculic, and at times, dysgraphic.  I had to teach myself how to write again a couple of years ago and I'm desperately trying to regain what I lost after my last really bad couple of months of seizures. 

That's why I have to turn writing into conversation or art.  I can't just write.  I can hardly write at all by hand, I really have to use a keyboard.

I don't remember what NLD is.  Maybe you can teach me something.

You are obviously very bright because you are pre-AP track in spite of your learning disabilities.  You could very well have undiagnosed TLE.  The other people I've met who are the most like me including the learning/developental disabilities were either diagnosed with TLE or had it, were misdiagnosed, and are really, really sick or worse.

It's a tough thing.  Just make sure you take good care of yourself.  I don't think you're "stupid" out of school either.  I bet you can do lots of things the other kids can't even though the stuff that's easy for them is hard or impossible for you.  That doesn't make you stupid or "not smart."  It just makes you different.

Different is a tough way to be.  I know because I'm "different."  My high IQ isn't normal.  My seizures aren't normal.  My way of thinking isn't normal.  My way of speaking isn't normal.  My way of writing isn't.  But they work for me.

Doctors and psychiatrists all want to pathologise not normal.  There's nothing wrong with abnormal.  Being really smart isn't normal, but would you not want to be smart becase of that?  That's what's so stupid about the whole thing. 

Normal doesn't mean good, it doesn't mean bad, it just means the statistical norm.  Numbers don't care!

Devorah Zealot Soodak http://psychout.typepad.com/ the zealot needs help!

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