New/nervous/shy, so I rambled...

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Game_Maker

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Hey, pretty sleepless night so I was on the web reading up on my Epilepsy (Photo-Sensitive Absence seizures and possibly a Myoclonic here or there along the way), and i stumbled across this great site!

A Little About Me:
I have always been so cautious of these forums though because I always worry that my Epilepsy isn't as big of a deal as someone elses and I should just be okay. But hopefully that is not my experience here. I was diagnosed when I was 16, almost crashed the car with my whole family in it due to a seizure brought on by the sun flickering through the trees. And from there after many doctor appointments and many different doctors and many different HORRIBLE drugs I am here today. Trying to let go of my pride put myself out there. I have always internalized my Epilepsy, didn't want to talk about it, and now I am 22, married, going to college and it has been so rough and I needed to start getting help. I hope these forums can be a place where I can get my feelings out or just relax and find some hope.

Currently:
I am seeing a great Neurologist who is very helpful (been a while since I actually saw one), but in the process of switching meds yet again, back on to depakote and off of zonisamide. this will be my 3rd med in the last 10 months and it's hard on the body, just wondering what to expect while on Depakote and such, I was on it before but had to get taken off because the levels I had to be on were too high, the doctor suggested may be a second medication if that happened. I'm taking 1000mg of Depakote AM and PM, quite a few tremors and tired but at the same time restlessness and sleeplessness, just concerned because I need to be on top of this a lot better than I have been in the past.

Thanks for the great site, and hopefully a place to feel welcome
 
Welcome darlin, I'm hope they get your med situation straightened out soon, I have never been on depakote, so I'm no help there, but I'm sure someone else will have advice. Epilepsy is epilepsy, and people with all forms are welcome here. Here you can swallow your pride and share your thoughts and feelings without judgement and amongst those who understand what you are going through. :-)
 
Hi Game Maker and welcome :)

Don't feel like you have to meet a certain epilepsy standard to be here. As mommymela mentioned, this is a site for everyone. Hope to see you here often.
 
Hi Game Maker, welcome to CWE!

I'm sure there are members who can share their experiences with Depakote. (I'm not one of them alas, though if you want to dish on Zonisamide or Lamictal, I can help you there). You can also use the "search" tab in the upper right area to look for posts on specific topics.

Best,
Nakamova
 
Welcome to CWE Game Maker.

I worried about joining CWE as well since our daughter had not been diagnosed yet with epilepsy and at the time had and still has only had one seizure. It did not take me long to feel at home here and find that with all the different people with different stories that there is one common bond..we all suffer to some degree with epilepsy/seizures. Some of the members' seizures are very well controlled whether from medication, diet, surgery, biofeedback or a combination. Other members seizures are not so controlled despite all of the above. But when you put all of our experiences, opinions and information together we can take from this forum a little more insight on epilepsy.

I'm glad you decided to join, and hope that you feel comfortable posting and asking questions. I'm sorry that I dont have an answer to your first question. I am still very new to the epilepsy medication world. Our daughter just started taking Lamictal, the neuro is ramping her up slowly.
 
Thanks everyone!! It's sooo good to feel welcomed and included and that it doesn't matter. It's nice to be able to read stories and experiences and this sure has been a good place to start. still working on figuring out my medication though, i just want some normalcy in life haha. but oh well
 
Game_Maker said:
, i just want some normalcy in life
Click to expand...

Normal? What is this normal you speak of? :)

I finally decided that everybody has their own idea of 'normal'. Whats normal for one person is abnormal for another. That being said, we have had to find a 'new' normal in our lives and home. It took us a little bit to get the hang of it, but now it seems just as natural as before the seizure and epilepsy diagnosis.
 
NORMAL.......oh that would be so nice. After 3 long hard years I finally accepted just last week that my life will never be the same again :( I can only try and make the most of what I've got now.
 
:agree:

That's right, we can only make the most of what we have. Some days it's just harder to remember, but thank you, and sorry if me desiring some 'normal' life bothered anyone, it was just a really bad day when I wrote this.
 
I have photosensitive epilepsy too, the lights between the trees are terrible because no one ever expects that that could cause seizures. I didn't even untill the light between the trees started hurting in Novemeber. And don't worry, i think everyone jsut wants a "normalish" life. I know I do sometimes.

--
“Be who you are and say what you feel because those who mind don't matter and those who matter don't mind." ~Dr. Suess
 
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