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trentonbest

Appointment. Confused.

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.

Trent,

This is what I was afraid of.  You must have done some reading to know that you are having seizures.  ADD is a very dangerous misdiagnosis, if you really do have epilepsy because the medications used to treat it all have a significant seizure risk.

Just because the fancy tests are negative doesn't mean you don't have epilepsy, but pray that it's something easier to fix.  You really don't want to have epilepsy, but I think what you want the most is to be "fixed" so that your brain works.

The way you talk though, I suspect you are right, especially because you say that other people with epilepsy understand your symptoms.  Get your doctor to listen to you, examine you, and if you get "lucky," maybe you will have a seizure while he is asking you "do you feel this?"

I was "lucky" enough to have a seizure while being examined by the only decent neurologist I've ever seen.  I didn't know I was having it and would not have had he not been conducting the exam.  He got me the VEEG in two days after that.

That test was a not very funny comedy of errors.  The tech screwed up, the electrodes came loose, they ignored the video evidence, and ruled the epileptiform activity that did show up even with the electrodes loose as artifact.  They then took the lack of a conclusive positive diagnosis to be a positive rule out for epilepsy.

This is a logical fallacy.  Since you say you are a fellow geek, you will understand that just because you can't prove that A is true does not mean the converse, that A is false, is the case.  Unknown means unknown.  There is no law of the excluded middle here. 

This is like data base.  There is true, false, and null.  Null means void or unknown and is neither true nor false.  In data base, if you search for all of your "not trues," your result set will include all of your falses and nulls.  If you search for all of your "not falses," your result set will include all of your trues and nulls.

I know this is a bit counter-intuitive, but it's how the world works.  Doctors are not scientists and they are not logicians.  I don't expect them to be, but they should stop pretending they are and stop passing off logical fallacies as medical diagnoses.  They are killing people this way.

Just stick to your guns.  Why don't you try to write down your symptoms and bring the list to you doc?  That way you can't forget anything.

Also, why don't you try keeping a seizure diary?   I tried, but I coudn't because of the writing thing.  I usually can't write while or soon after my seizures although it depends on what kind and how bad they are.  It also depends on what I'm trying to write.  Writing like this is a conversation so to me, it's more like talking and I don't have a problem with that unless the seizures wander into my left frontal lobe or I've had TCs.

Click the next link to get to my newest post:  Escaped Mental Patient:  Why Can't the Jewish Zealot Epileptic Leper Escape From the Lunacy of the New York Office of Mental Health?

http://psychout.typepad.com/blog/2010/10/escaped-mental-patient-jewish-zealot-epileptic-leper-lunacy-new-york-office-mental-health.html

The link after my name will get you to the blog.

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

Re: Appointment. Confused.

Yeah!  People with Epilepsy relate to me.  So I honestly think I have both.  I have signs that match both of these things.  He just didn't think I had Epilepsy after I was hyperventilated.  Didn't have a seizure.  And also because in his career he has never seen a kid my age with Epilepsy, because I got it when I was so young.  I know all the answers will come out soon.  Maybe it will be both.  Let's hope we get this figured out!

Re: Appointment. Confused.

Trent,

The ADD is a symptom.  This is another classic case of psychiatrists turning the symptom into the disease. 

If your doc has never seen someone your age with epilepsy, go find another doctor!  Epilepsy is the most prevalent in infants and young children!

Just because you don't get seizures "on demand" doesn't mean you don't have a problem.  It could be an environmental provocation, which could explain why you don't have seizures in the nice, clean, airconditioned doc's office.

More likely it is that you have seizures deep in the brain where they cannot be detected by surface electrodes.  Please make sure your parents do not allow this doc to prescribe you medications that could worsen your seizures just because he decides you don't have them because he can't image them.

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

Re: Appointment. Confused.

Yeah.  He said if I had Absence seizures I would have, or most likely would have had one.  Again, so many other people say it sounds like Absence seizures so I really think I have both.  An EEG tomorrow.  Am I really considered young?  I think so.  Thanks for being supportive.

Re: Appointment. Confused.

Trent,

Fourteen is young, but not young for epilepsy.  Take a look around the site.  There are many Fora (Forums) for parents of children with epilepsy so you will see there are many children with epilepsy.  Read the other Youth Fora.  Read whatever you can.  The words of others like you will help you understand yourself.

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

P.S.  My latest grownup blog post: 

Epilepsy Carpe Diem: Psychiatric Patient Abuse Google Searching for Answers

http://psychout.typepad.com/blog/2010/10/epilepsy_carpe_diem_psychiatric_patient_abuse_pubmed_medline_plus_mayo_clinic_omh_ny_state_us_gov_nj_dmhs_ancora_jewish.html

Re: Appointment. Confused.

Do I click on another link after I click that one?

Re: Appointment. Confused.

Trent,

I'm not really sure you should read the blog if you can't figure out how to get there.  All you need to do is click one of the links either to the post or the blog and read the page just like any other.

If you can't see it, maybe your parents have limits set up on what you can see from your account.  That's a smart thing for them to do because there's a lot of bad stuff out there. 

My blog isn't bad, but it's not really for kids.  There's not anything obscene in it, but it is about grown up stuff.

I wish you all the best.  Don't let anyone tell you you're crazy because you'e not.

Baruch Hashem.  Hoshia na.

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

Re: Appointment. Confused.

Haha, sorry.  It was just all bundeled up, so I thought it was other searched stuff on Google or something.  It's 5 right now, had to stay up till Midnight.  :).

Re: Appointment. Confused.

Trent,

I've been thinking.  I believe you are having seizures.  They might not be epilepsy, but they sound like real seizures.

Lots of things can cause seizures, like not enough sleep and lots of things can cause not enough sleep, like noisy siblings, sleep apnea, high or low blood sugar (which can also cause seizures), etc.

ADD or ADHD is a terribly overdiagnosed "condition."  It is a symptom.  Lindsay Lohan is all over the news, just having discovered that she was misdiagnosed with ADHD and given medication for it, which made her really sick.

Make sure that all possible underlying causes are ruled out before you start taking AEDs or other brain medications as they can hurt more than they can help unless you really, really need them.

Please be careful and keep your eyes open.

You don't mention your parents much.  How do they feel about all of this?

Baruch Hashem.  Hoshia na.

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

Re: Appointment. Confused.

Real Seizures?  Other than Epilepsy?  How do they sound any different?  Can you give details please?  I appreciate it.

Re: Appointment. Confused.

Trent,

Pease read the information on this site.  In fact, go to the resources section and ask epi-help for help.  She does this for a living and I think she can give you good information.

The whole thing is very complicated and I think it is so complicated that the doctors don't even understand it, which is why they make so many mistakes.

People who don't have epilepsy are diagnosed with epilepsy and people who have epilepsy don't get diagnosed or worse, get diagnosed with things they don't have.  The result is that they get sicker.

You don't want this to happen, quite obviously.  This site has a lot of good information.  I don't agree with all of it, especially since this is a commercial site with vested interests.  Some of their information is biased, but it is a good place to start.

I can't spoon feed this stuff to you, nor should I.  I am not a doctor, though I started reading medical journals when I was 15.  I also know a lot of science.  My father was a well-known nuclear physicist.  His more recent work includes biophysics. 

My brother was a neurophysiologist and my uncle was a biochemist.  I picked all of their brains.  I learned a lot of this stuff at home.  The rest I learned by reading and talking to anyone I could find who knew stuff.

You must do the same.  Go to the library and get books.  Read what is on this site.

Are you having trouble understanding what you read or trouble putting stuff together?  There could be lots of things causing your difficulties.  Epilepsy may not be the answer.  If I were you, I would be praying for a condition that's easy to treat.

Things that can cause seizures:

  • Not enough sleep
  • Poor quality sleep (you keep waking up even if you don't remember it)
  • Low blood sugar (do you eat a lot of junk food?)
  • Medications
  • Medication withdrawal
  • Fever
  • Head trauma
  • Stress
  • Heart conditions
  • Aneurisms
  • Strokes
  • Etc....

It's a long list.  These things can all cause real seizures.  Fix them and the seizures go away!  If the seizures don't go away, it's possible that there's more than one thing wrong or that, say, you have a blood sugar problem and epilepsy.

Like I said, it's complicated and that's why so many mistakes are made.  Medicine is getting too complicated for most people to understand and doctors are people.  That's the problem.

Please take good care of yourself.  Please find out how to get the information on this site.  Ask epi-help.  I am sure she will be happy to answer your questions.

Baruch Hashem.  Hoshia na.

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

Re: Appointment. Confused.

I just have trouble putting it together, just because they said I had Absence Seizures.  Believe me or not, I have read a lot on this site.  Putting it together is hard.  Haha.  Thanks.  I know, you shouldn't be spoon feeding me, so I'm sorry I was forcing you to.

Re: Appointment. Confused.

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.

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.

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!

Re: Appointment. Confused.

I don't understand what 'the whole thing' is.  It's just because I don't think things through... like ever!  And I always get in trouble for it, and it's making me nuts!  Haha.  Part of NLD.  There are tons of symptoms of NLD.  Like thinking concretely.  I can't take a joke.  I take everything seriously.  Bad hand-writing.  Numbers of teachers have told me I need to take hand-writing classes.  But, obviously, I can't help that.  There's numbers of symptoms, and it would take me a LONG time to just type all of the symptoms.  But then to explain!  That's another story.  Haha!  What is TLE?  Oh, you mean Temporal Lobe Epilepsy.  I guess I have a new subject to obssess over. 

Re: Appointment. Confused.

Trent,

Please don't obsess.  It's not worth the effort.  You really may not have epilepsy at all.  Your seizures could have many causes.

I can't read.  I thought you said NLE.  Why on earth would they be talking about ADHD if you are already diagnosed with NLD?  (Nonverbal Learning Disorder).  This makes no sense!

I don't know enough about NLD to know what kind of neurological complications can go along with it.  You may or may not have a seizure disorder on top of it.  It is very important that you have a neurologist who is familiar with NLD. 

Also, I am concerned about the fact that you never mention your parents.  You have only mentioned a brother.  I know relationships between parents and teens are difficult, but you never even mention their attitude to your learning disabilities and neurological difficulties.

Try running this google search by clickin the link:  http://www.google.com/search?hl=en&q=nonverbal+learning+%28disorder+%7C+disability%29

It will return sites having to do with your condition.  Most of them are geared to parents or are very scientific, but there might be some stuff you can understand.  Sometimes it's just good to know that there are other people out there like you.

TLE can have similar symptoms to NLD because of the same left-right hemisphere asymmetries it can cause.  I think that explains why we have so many similar imediments even though they are from very different causes.

Just make sure your neuro doesn't saddle you with a lot of extra diagnoses you don't need.

Please take good care of yourself and promise me you won't obsess.  It won't do you any good and might make it hard to sleep or concentrate on other things.  You don't want that.

The NLD certainly explains a lot of your difficulties. 

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

Re: Appointment. Confused.

Oh, well I have a very good relationship with my parents, even though they are divorced.  I obssess because I LOVE medical terms, and it's so interesting looking things up.  My mom even told me to start obssessing about ADD, so that we can know the most about it.  Haha.  I like it though.  But if you think it will be dangerous academically then I will try not to obssess.  It's just what I'm known for!  Haha.  My parents....  They seem okay with my learning disabilities.  I think they do get frustrated when I can't understand what they are saying, for other nuerological disabilities I have.  But, they do want all of this controlled; that's normal.  So, I really am not quite sure if they are embarrassed, sad, or anything.  They shouldn't be embarrassed of it.  I just want to let you know that you are very smart, and you are very lucky for it.  Thanks for sharing your knowledge with me.

Re: Appointment. Confused.

Trent,

People should not be angry at you for your disability.  Not seeing the big picture is part and parcel of NLD.  It's not because you "don't think things through."  It's not because of anything you do or don't do.  It's the way your brain/miind works.

Your parents and teachers need to run that Google search in the link in the next post.  They need to understand this stuff as much or more than you do.

All the best.

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

Re: Appointment. Confused.

Trent,

It's getting too hard to read the comments down there.  Thanks for the compliment and you're welcome.

I'm glad you have a good relationship with your parents.  Now I understand that you don't mean literally obsessed, you just mean you'll have a new interesting project.  Well, go for it!  Knowlege is power.

By all means, learn everything you can about any possible explanations for "how you are."  Just don't fall into the first year med student trap of thinking you have every condition you find in your pathology text.  I use my research more to figure out what I don't have than what I do.  That's part of what's called differential diagnosis.

The more you know, the better you'll be able to communicate with your doctors.  If your mom says do research, then I'm all for your new "obsession."

Please keep me posted on your progress.

Baruch Hashem.  Hoshia na.

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

Re: Appointment. Confused.

I was wondering where you were!  Haha.  Thanks.  And you're welcome.  You deserve it.  Yeah, not my best choice of words.  Hehe, sorry.

Re: Appointment. Confused.

Trent,

Nothing to be sorry for.  We all use words for dramatic effect, not always realising what we are literally saying.  I just needed to make sure.

I'm glad you're doing OK.  You really have to stop apologising all the time.  It isn't necessary.  Save it for when you really mess up.

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

Re: Appointment. Confused.

Every body tells me stuff like that!  I just always feel bad, for some reason.  People say that I slip through a door, and I say thank you, when they don't mean to hold it open.  Haha.

Re: Appointment. Confused.

Trent,

People who say you "slip through a door" when they don't mean to hold it open after you've thanked them don't have very good manners.  Perhaps you should try taking the door from them and letting them finish walking through.  If they really mean to hold the door, they'll let you know.  That way you can avoid the problem.

You're at a tough age when you tend to feel self-conscious and you have a neurological condition that can make it more difficult for you to understand non-verbal "cues."  You're a smart kid, though.  I think you'll figure a lot of this out.

Just because you feel bad doesn't mean you have to apologise.  You apologise if you know you've done something that wasn't right or if someone says you hurt them or upset them.

If I know I did something wrong, I will say so and offer an explanation.  Not an excuse.  I will apologise for any unhappy consequences.  If possible, I will try to rectify the situation, but sometimes the best thing to do is to walk away.  It depends.

Now if someone says you hurt them or upset them, that doesn't mean you did anything wrong.  What I do in that case is tell the person that I'm sorry they feel hurt or upset.  I do not apologise for making them feel that way.  We cannot control what other people feel.  We can only control our own actions and our own feelings.

A lot of otherwise very smart people don't understand this.  I used to apologise too much, too.  I got over it.  It's much better this way.

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

Re: Appointment. Confused.

Yeah.  Sometimes when I hold the door open for someone, it makes me mad when I don't get a "thank you".  So maybe I'm just trying not to hurt myself, by slipping through the door.  That way I can give them a thank you, instead of someone ignoring me, and my efforts.  That's what makes sense to me, at least.

Re: Appointment. Confused.

Trent,

Sometimes it's hard to figure out where your problems end and the the other person's begin.  That's a tough one for all of us.

It's never "all your fault" and it's never "all every one else's fault" and never say never.

That's life.  Full of contradictions.  Just try to figure out what went wrong in an interaction and try something different the next time.  When things go well, try to remember that, too, so you can do it again.

We need to learn from our mistakes, but it's equally important to remember our successes.  That's how we gain self-confidence.

Baruch Hashem.  Hoshia na.

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

Re: Appointment. Confused.

You should seriously write a book or something.  All of this sounds like famous sayings.

Re: Appointment. Confused.

Trent,

Thanks.  If I live long enough, I will.  Right now I'm writing here and on my blog.  Maybe someday I'll turn it into a book.

The thing is, after a blog, a book is "dead."  The blog is alive in cyber space.  It is never the same, always changing as the internet changes.  A book is always the same, although it is different every time you read it because you have changed.

More weird universe stuff.

Take care of yourself.

Baruch Hashem.  Hoshia na.

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

Re: Appointment. Confused.

Thanks.  Let me know if you do.  Would love to read it.  You too.