Hey everyone

[Tyler]

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 neuro 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 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'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

 

[Bernard]

Hi Tyler, welcome to the forum. :hello:

There's lots of good information here about epilepsy, seizures and migraines (among other things). Make yourself at home.

 

[Birdbomb]

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!

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 neuro 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 neuro 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.

 

[Tyler]

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 neuro that once and the response I got was "mm, well, I guess they can be linked....but then again almost anything can."

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...

 

[Birdbomb]

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 neuro....

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.:roflmao:

 

[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

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

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

 

[Tyler]

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 neuro 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.

 

[skillefer]

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.

 

[Tyler]

wow, i just read the epilepsy 101 like you said...
Im honestly getting a new neuro.
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

 

[epileric]

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

 

[Birdbomb]

Our house is a very Fine House!

 

[Joe]

Welcome Tyler! :hello: 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. :tup:

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!!

 

[Bernard]

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.

You might want to see if your city or town has an epilepsy foundation.

Vancouver hosts the BC Epilepsy Society

 

[BuckeyeFan]

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.

:cheers:

 

[Bernard]

 

[RobinN]

Now what nutritional plan does that fall under Bernard?

 

[Bernard]

It's part of the seefood diet. :roflmao:

 

[speber]

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!

 

[Birdbomb]

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

 

[Georgiagirl88]

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 : )