Coping With Epilepsy Seizure Study
Sponsored Advertisement - Advertise on this site
 

Go Back   Epilepsy Forum > Our House > The Foyer



Closed Thread
 
LinkBack Thread Tools Display Modes
  #1  
Old 02-21-2008, 05:47 PM
Tyler's Avatar
New Here
 
Join Date: Feb 2008
Location: Vancouver
Posts: 7

Hey everyone


Hey everbody,
Just wanted to drop by and introduce myself.
My names Tyler, i'm 17 years old and suffer with epilepsy.
I have my first seizure during the spring of last year.
Unfortunatley, I wasn't with the most reliable people, and we didn't end up realizing it was a seizure until it happened again in the following months.
I've spent the past year now switching on and off different medications, and my neurologist doesn't even seem to give the issue the time of day, and treats this as if it's a cold I'm going to get over.
I feel really alone, as none of my friends understand the issue and it would be difficult to explain it, and my family is just as confused as myself.
I'm still in high school and it takes control of my day to day life. Since this first happened I experience incredible migraines on an almost daily basis, which I never had before. My neurologist claims to "just take some advil, it's nothing". Also, certain lighting can set off brutal headaches and even make my vision hazy and blurry, and make me feel like I don't have the energy to make it past my front door. I've become very frusterated and frightened and scared. I was just hoping i'd find some people with common side effects and/or any advice. I take Valproic Acid...it's about the only medication that seems to SOMEWHAT help.
Thanks for taking the time to read this.
Ty
Add Post to del.icio.usNetscape this post!Stumble this Post!
  #2  
Old 02-21-2008, 08:38 PM
Bernard's Avatar
Your Host
 
Join Date: Mar 2005
Location: Friendswood, TX
Posts: 3,316
Hi Tyler, welcome to the forum.

There's lots of good information here about epilepsy, seizures and migraines (among other things). Make yourself at home.
__________________
Check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback
Add Post to del.icio.usNetscape this post!Stumble this Post!
  #3  
Old 02-21-2008, 08:55 PM
Birdbomb's Avatar
Super Moderator / VNS Guru
 
Join Date: Apr 2005
Location: Las Vegas, Baby!
Posts: 1,692
Welcome Tyler

You will also find several other teens here, You may not have many in your group who understand, but I'll bet everyone here does!

Quote :
Since this first happened I experience incredible migraines on an almost daily basis, which I never had before. My neuro claims to "just take some advil, it's nothing". Also, certain lighting can set off brutal headaches and even make my vision hazy and blurry, and make me feel like I don't have the energy to make it past my front door.
I had a neurologist like that.

He was a pinhead. I found me another one. Seizures and migraines are closely related. If you have both, why isn't the neurologist treating both? I would get migraines after seizures, they could last for a couple of days. I got a prescription for Midrin and that really calmed them down. I rarely had to take more than 3 - 4 doses.

You may have to try several different doctors until you find the right one for you. Some are fantastic, some are ok and some should be working at McDonalds.

Since you are new to this, I recomend you begin a journal. Log all your seizure/migraine activity, sleep patterns and what you eat. You may find a pattern and be able to eliminate certain triggers.
__________________


"If you are going through hell, keep going."
(Sir Winston Churchill, 1874-1965)

Work like you don't need money,
Love like you've never been hurt,
And dance like no one's watching.
Add Post to del.icio.usNetscape this post!Stumble this Post!
  #4  
Old 02-21-2008, 09:13 PM
Tyler's Avatar
New Here
 
Join Date: Feb 2008
Location: Vancouver
Posts: 7
Quote :
Seizures and migraines are closely related. If you have both, why isn't the neuro treating both?
Oh geez, I wish somebody would have told me this before. I asked my neurologist that once and the response I got was "mm, well, I guess they can be linked....but then again almost anything can."
Quote :
Some are fantastic, some are ok and some should be working at McDonalds.
If she needs a reference to work there I'd be glad to help. She's terrible. You can tell she really isn't keen on actually trying to help you figure out your issues...but is spending more time thinking about when she get's off for lunch. Makes you feel like your never going to actually get anything figured out...
Add Post to del.icio.usNetscape this post!Stumble this Post!
  #5  
Old 02-21-2008, 09:30 PM
Birdbomb's Avatar
Super Moderator / VNS Guru
 
Join Date: Apr 2005
Location: Las Vegas, Baby!
Posts: 1,692
Oooo stick around Tyler, you'll find out ALL our secrets! Might even want to get the parents involved. At least then everyone would be educated and not so fearful.

As for your kind of neurologist....

Those are "cattle call" doctors. Get in as many patients as they can, give em a script, send on their way, see em in three months. It's only about the

I dealt with one like that for 3 years and got totally disgusted. He was as cold as a fish too, but sang opera! Go figure.
__________________


"If you are going through hell, keep going."
(Sir Winston Churchill, 1874-1965)

Work like you don't need money,
Love like you've never been hurt,
And dance like no one's watching.
Add Post to del.icio.usNetscape this post!Stumble this Post!
  #6  
Old 02-21-2008, 09:30 PM
RobinN's Avatar
Super Moderator
 
Join Date: Aug 2007
Location: SoCA
Posts: 2,429
Send a message via Yahoo to RobinN
Hi Tyler - Welcome to CWE
My daughter is 16 and has recently been caught up with uncontrolled seizures. She is in 10 grade and has many at school. We can both relate to what you are going through.
I have migraines and she has seizures. I have researched this quite a bit. I was able to get total relief of my migraines by taking magnesium.

I hope you can find someone you like to help you out.

http://www.medscape.com/viewarticle/522392
http://www.ncbi.nlm.nih.gov/pubmed/10595289
Quote :
A relationship between epilepsy and migraine has long been postulated, but the nature of this interaction is still debated. We studied adult patients with epilepsy and investigated the relationship between migraine and epilepsy. Fourteen percent (n = 412) of adult patients with seizures were identified with a diagnosis of migraine. We also found a direct relationship between migraine and epilepsy (a migraine-induced epilepsy) in 1.7% (seven patients) of the patients with seizures. Patients were at increased risk for both conditions if they had migraine with aura and catamenial epilepsy. The seizure began during or shortly after the migraine aura in all of the cases and preceded the headache. Three of four patients who were refractory to management with antiepileptic drugs using either mono or combination therapy improved seizure control with combination antimigraine and antiepileptic drugs.
http://www.rense.com/politics6/excito.htm
Quote :
There are a growing number of clinicians and basic scientists who are convinced that a group of compounds called excitotoxins play a critical role in the development of several neurological disorders including migraines, seizures, infections, abnormal neural development, certain endocrine disorders, neuropsychiatric disorders, learning disorders in children, AIDS dementia, episodic violence, lyme borreliosis, hepatic encephalopathy, specific types of obesity, and especially the neurodegenerative diseases, such as ALS, Parkinson's disease, Alzheimer's disease, Huntington's disease, and olivopontocerebellar degeneration.1
Add Post to del.icio.usNetscape this post!Stumble this Post!
  #7  
Old 02-21-2008, 09:45 PM
Tyler's Avatar
New Here
 
Join Date: Feb 2008
Location: Vancouver
Posts: 7
Wow, thanks alot guys.
I've been browsing almost every thread on the forums and am already learning tons.
This is alot of help, because I know NOTHING about epilepsy either. Kind of ironic.
My first time in there my neurologist said "Ok, so, you have Epilepsy, which means you get seizures (no kidding, that's the reason I came in wasn't it?), however it's treatable with medication so not to worry".
And send me on my way with meds.
So please bear with me if I have alot of stupid questions or concerns about things.
Because I can get so incredibly lost with this stuff.
Add Post to del.icio.usNetscape this post!Stumble this Post!
  #8  
Old 02-21-2008, 09:59 PM
skillefer's Avatar
Moderator
 
Join Date: Jan 2008
Location: California
Posts: 474
Welcome Tyler! You'll find the folks here are great at answering questions. Read the Epilepsy 101 post. It'll give you a good overall view of what epilepsy is. As for me, I am a high school teacher. I know how cruel kids can be. Also, I used to take Valproic Acid (Depakote). For me, it worked great. No side effects other then weight gain. But that was me. Other's here have had some terrible side effects. Stick around and feel free to ask any questions.
__________________
"Watch your words, for they become actions.
Watch your actions, for they become habits.
Watch your habits, for they become character.
Watch your character, for it will become your destiny."
Add Post to del.icio.usNetscape this post!Stumble this Post!
  #9  
Old 02-21-2008, 11:13 PM
Tyler's Avatar
New Here
 
Join Date: Feb 2008
Location: Vancouver
Posts: 7
wow, i just read the epilepsy 101 like you said...
Im honestly getting a new neurologist.
I didn't even know there were different types of seizures.
And everything she told me that is unrelated to the seizures,
and is either just in my imagination (i'm psyching myself out), or something she's unsure of,
are ALL extremly common symptoms.
Honestly guys, thank you so incredibly much for the support.
I have a feeling I'm not gonna spend another year feeling down and depressed everyday, not knowing what's wrong, having even the doctor not believe me.
Thanks a ton, I'm having such a great day now
Add Post to del.icio.usNetscape this post!Stumble this Post!
  #10  
Old 02-22-2008, 12:57 AM
epileric's Avatar
Weaving the Community Fabric
 
Join Date: Dec 2007
Location: Victoria, B.C., Canada
Posts: 177

Welcome to the site


You might want to see if your city or town has an epilepsy foundation. I just discovered the epilepsy centre here where I live & they seem to have a lot to offer.

Meanwhile I've found this site to be a great resource & the other members are extremely helpful & supportive
__________________
It's no longer a question of staying healthy. It's a question of finding a sickness you like.
-Jackie Mason
Add Post to del.icio.usNetscape this post!Stumble this Post!
  #11  
Old 02-22-2008, 03:15 AM
Birdbomb's Avatar
Super Moderator / VNS Guru
 
Join Date: Apr 2005
Location: Las Vegas, Baby!
Posts: 1,692

Thumbs up Our house is a very Fine House!


__________________


"If you are going through hell, keep going."
(Sir Winston Churchill, 1874-1965)

Work like you don't need money,
Love like you've never been hurt,
And dance like no one's watching.

Last edited by Birdbomb; 02-22-2008 at 03:22 AM.
Add Post to del.icio.usNetscape this post!Stumble this Post!
  #12  
Old 02-22-2008, 03:47 AM
Joe's Avatar
Joe Joe is offline
Getting Comfortable
 
Join Date: Feb 2008
Location: Silves, Algarve, Portugal.
Posts: 24

Smile


Welcome Tyler! It's a daunting moment to be diagnosed with e - there's a hell of a lot to take in, to come to terms with, to live with.

There is so much info on this site - and so much help, advice, and caring voices - it's good to not feel so alone and disorientated.

New here too; just keep working through the threads - there's plenty of 'em...think I'll still be at it when I'm 40!!
Add Post to del.icio.usNetscape this post!Stumble this Post!
  #13  
Old 02-22-2008, 06:39 AM
Bernard's Avatar
Your Host
 
Join Date: Mar 2005
Location: Friendswood, TX
Posts: 3,316
Tyler, it's great that you are getting some answers/support here at CWE. Hopefully, it will allow you to communicate better with your doctor.

Originally Posted by epileric View Post:
You might want to see if your city or town has an epilepsy foundation.
Vancouver hosts the BC Epilepsy Society
__________________
Check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback
Add Post to del.icio.usNetscape this post!Stumble this Post!
  #14  
Old 02-22-2008, 08:06 AM
BuckeyeFan's Avatar
Moderator
 
Join Date: Feb 2008
Location: Ohio - Buckeye country
Posts: 426

Ask all you want


Tyler, ask all the questions you want here. Part of beating anything is knowing what you are fighting. You are making a great step by learning as much as you can. I have had E for 26 years and still learn new things.

There are lots of good sites out there and I have found this one good for me. I hope we make you comfortable as well. If not, I am sure someone here will help you find a site that fits you. Plenty of other teens here as well.

There is also some good humor here to help take the edge off.

Add Post to del.icio.usNetscape this post!Stumble this Post!
  #15  
Old 02-22-2008, 09:30 AM
Bernard's Avatar
Your Host
 
Join Date: Mar 2005
Location: Friendswood, TX
Posts: 3,316
__________________
Check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback
Add Post to del.icio.usNetscape this post!Stumble this Post!
  #16  
Old 02-22-2008, 10:54 AM
RobinN's Avatar
Super Moderator
 
Join Date: Aug 2007
Location: SoCA
Posts: 2,429
Send a message via Yahoo to RobinN
Now what nutritional plan does that fall under Bernard?
Add Post to del.icio.usNetscape this post!Stumble this Post!
  #17  
Old 02-22-2008, 11:17 AM
Bernard's Avatar
Your Host
 
Join Date: Mar 2005
Location: Friendswood, TX
Posts: 3,316
It's part of the seefood diet.
__________________
Check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback
Add Post to del.icio.usNetscape this post!Stumble this Post!
  #18  
Old 02-22-2008, 12:45 PM
speber's Avatar
Super Moderator / CWE Muse
 
Join Date: Sep 2007
Location: Austin, TX
Posts: 900

Cool Somebody brought Seeefoood?...........






Welcome Tyler!...check out all your options!
Pills do work for many, but they usually bring side-effects with them.
Alternative therapies and treatments are very good to know about...even if you choose not to use them!
Then you can at least consider yourself well-informed!
__________________
Music\auditory Stimulus and the Epileptic Brain...List of music/epilepsy related links...CWE Members can also visit Speber's Auditorium where they can vote on how different music affects them in simple polls.
Add Post to del.icio.usNetscape this post!Stumble this Post!
  #19  
Old 02-22-2008, 01:10 PM
Birdbomb's Avatar
Super Moderator / VNS Guru
 
Join Date: Apr 2005
Location: Las Vegas, Baby!
Posts: 1,692

Thumbs up


Mmmmmmmmmmm......Sundae Cone! Ohh.... Ice Cream Sandwich ! Hey! Where's the Fudgecycles!
__________________


"If you are going through hell, keep going."
(Sir Winston Churchill, 1874-1965)

Work like you don't need money,
Love like you've never been hurt,
And dance like no one's watching.
Add Post to del.icio.usNetscape this post!Stumble this Post!
  #20  
Old 02-22-2008, 01:57 PM
Weaving the Community Fabric
 
Join Date: Dec 2007
Location: Atlanta
Posts: 181
Hey Tyler,
Welcome!! You are not alone!! I am new to knowing about my seizures too. There is alot of support and help. I understand how you feel in alot of ways. I'm a Mom(41)...my kids are around your age. My son is almost 17. He's had his share of health issues also. He has asthma bad and would get pneumonia constantly. It was very hard on him. He finally seems to be doing much better. It really sucks having health problems...It can be really hard. Just know you are not alone. I bet there are more kids at your school that have the same thing as you. Your friends will understand and be cool..just talk to them. If they are good friends they will. Maybe there is a group near where you live with teens your age. Just remember people everywhere have all different sorts of things and live full,healthy,happy lives. And you will too! Keep your head up! Drs. can sometimes be less than compassionate..maybe because they treat soo many things and it becomes routine or they see much worse cases. Not to excuse bad bedside manners, but maybe you could look into a new Dr. or know the one you've got is there to help and he's a drip! Ha!
Anyways..hope things go well for you. I am on my 3rd med too. I am sure they'll figure things out for both of us and everyone else! Stay positive: )) What is that saying...and this too will pass! Life is full of little bumps in the road...and this is one of them. But it'll get better!Take care!

Michelle : )

Last edited by Georgiagirl88; 02-22-2008 at 01:59 PM.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Closed Thread

« new here | Hi »
Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are On


All times are GMT -5. The time now is 11:29 PM.


Powered by vBulletin® - Copyright ©2000 - 2008, Jelsoft Enterprises Ltd.
Content Relevant URLs by vBSEO ©2008, Crawlability, Inc.
Copyright 2005 © Measuring Up. ALL rights reserved.