16 and newly diagnosed

gr33nr0se

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Hi, my name is Olivia. I'm sixteen and I'm just getting used to the fact that i have epilepsy. I had my first seizure in september 2010. It was tonic clonic and at first i thought it was just a one time thing. Then, two weeks ago i was sent home from school because my eyes rolled back and my body jerked several times. I was also sweating alot. Last friday I did something really stupid. My first EEG was normal so I decided to see if strobe lights would induce the myoclonic jerks that I have in the car. Well, it induced something. I woke to find my mom, dad, and 7 year old sister watching me. I had a tonic clonic seizure that lasted three minutes and i have now been diagnosed with epilepsy. The things that worry me are my auras because I have different ones all the time. And I haven't had enough seizures to know my auras yet. Which is a dilemma because i dont want to have any more. Im really happy to find this site because it truly makes me feel less alone. Thank you everyone for support:e:
 

epileric

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Welcome Olivia

I wouldn't call looking at the strobe stupid. First of all you now know that you're sensitive to it, not everyone is. Secondly, you provoked what was needed for the doctor(s) to recognize your epilepsy. Some people have gone for years with seizures but because it won't show on an EEG the medical profession refuses to acknowledge it.

As for auras, not everyone gets an aura. Somebody once described an aura (I think it was somewhere on this site) & they had described my seizures exactly. Apparently some peoples auras are the seizure. You'll figure things out soon enough as time goes on, I'm sure.

In the meantime, try marking down all your seizures on a calendar or diary so you know when you had them. Also mark down when you sleep, when & what you eat, how you feel that day & whatever else you might think is relevant. It's a great way to try to find what might be triggering your seizures.

So make yourself at home here & see what we've got. There's some excellent research material in the library & the people here are extremely supportive. We've even got a "padded room" if you need to vent.
 

Nakamova

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Hi Olivia, welcome!

Eric's advice is good -- keeping track of your seizures and other info might help figure out your triggers. As a teen, your metabolism is probably all over the place, so that may be a contributing factor, but the usual suspects are: fatigue, low blood sugar, hormones, electrolyte imbalance (from dehydration or other causes). It can also be a combination of things. For me, Nutrasweet is a trigger.

Here's a good place to start for info and advice:
http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

I'm glad you've found us here at CWE. The members are great for support and advice. Please feel free to ask questions -- the more information you have the better -- and we're here if you want to vent, too.

Best,
Nakamova
 

gr33nr0se

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Hi guys thanks so much for responding. I am going to start keeping a diary of everything that goes on. One problem i have though is that i have polycystic ovaries which is also a severe inbalance of hormones. I have another EEG on thursday that will tell me where the seizures happen. but i have no way of knowing if the two are connected.
 

epileric

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Hmmmm,:ponder: you might want to track of your cycle & see if theres any correlation between that & when you have your seizures.
 

Endless

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Hi, Olivia,

Welcome!

I'm happy you are going to start a seizure diary. A list of seizure diary types is in this string:
http://www.coping-with-epilepsy.com/forums/f23/seizure-journals-10776/

Keep track of all your possible seizure triggers, like mensrual cycles, not enough sleep, flashing lights, etc. In time you will see the patterns. I'm hoping your doctor will get to the bottom of things, get you on the right medication, and you'll never have another seizure again.

Hang in there. We are all here with you.
 

gr33nr0se

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thank you so much. i never thought a simple forum like this could make me feel so much better about what is going on. My family is really supportive too but a little over-protective. the night of my second tonic clonic, my mom insisted on sleeping in my room and i haven't been allowed to stay home alone since. she also compeletely rearranged my room so it was as seizure-safe as possible. i love my family to death but they will never know what it is like to actually have a seizure. thats why i am glad this is available. :)
 

RobinN

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Hi Olivia - welcome to CWE
My daughters first seizure was at the age of 14. She also had a tonic clonic.
Her story is linked down in my signature.
We tried meds, but they made her situation worse.
She is now seizure free for 6 months, and med free, all due to making nutritional changes.

Please remember that you were seizure free for 16 yrs. We all have a seizure threshold and for some reason yours was lowered. Hope you can find ways to change that, and reduce the episodes you are experiencing. Epilepsy is not a disease.
 

Meetz1064

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Hi, hello

and how do you do, Olivia?

It's nice to meet you, although it does suck that you've gotten the diagnosis of E. All of the suggestions that you've been given so far are terrific ones--and Robin has a great point--all of us have a seizure threshold. Finding out what has lowered it to cause us to seize, and then raising it back up again is an important step in the solution--and will help, in the long run, to keep you from seizing repeatedly.

When you keep that journal, be sure to show it to the doctor--it can seriously help them as well to help you. And if they blow it off, then it's time to consider another doctor.

DO be prepared to deal with the fact that the first med (or two or three) that you try may not work--and that's perfectly normal.

Knowing that you're photosensitive is a big thing--the strobe light--and you can find ways around that. The level of photosensitivity is what you need to understand. If you find that fluorescent tube lighting bugs you (think WalMart, etc) or even those new energy saving light bulbs--for some people the patterns on the road from trees as they drive past them can do it--there are alternatives out there.

Things like blue-tinted glasses that you can get from your eye doctor--not just painted onto the glass, but worked into the glass. Also, if computers bug you, try a glare screen.

Simple things....really.

Enjoy yourself here. I'm sure you're going to find the dinner party to be quite fun. Lots of people to meet, and talk to. So kick your feet up, and have a great time!

Meetz
:rock:
 

huskymom

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Hi Olivia!

Glad that you found us! This is a wonderful place to be. One of my triggers is numbers. Strange, I know, but if I spend the day focused on numbers it gets me every time. Lucky I have a great boss so that when it is time to do the billing, he will do as much as possible.

I too have a problem with stobes and other "flashy" things. When my son turns on music videos, I just leave the room. Be careful watching those!

I will be keeping my fingers crossed for you that you find the right combination that works for you. :tup:
 

gr33nr0se

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wow you guys are so helpful. robin, thats a really good point. you all made me feel so much better
 
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