I must be invisible or something!

[Alysa]

Hello, my name is Alysa, I'm 25 and I had my near-fatal car accident when I was 19. I have had seizures for about 6 years now, and of course, they are not controlled by medication. It seems I can't find someone with a similar problem who is even near my own age group! There must be more out there! c'mon!

[Birdbomb]

NO ONE is allowed to be invisiable here!

OH Alysa! You've come to the right place! Everyone has a different story to tell and we have people from ALL walks of life and all ages!

My Epilepsy began out of the clear blue with no rhyme or reason, no injury, no disease in May of 2001. I tried several anti-epileptic drugs and a VNS implant but none were able to control my seizures. But as of April 2005 my seizures have stopped.

Sorry I'm not in your age bracket but I can understand where you are coming from.

Welcome to CWE!

[Bernard]

Hi Alysa, welcome to the forum.

I'm guessing you were diagnosed with TBI as the source of your seizure activity? There are some good results being reported with OchsLabs LENS system and classical EEG neurofeedback for retraining the brain to work around the damaged tissue.

You won't be invisible here unless you choose to be. Most of us are

[Tiara]

hey my name is Tiara and i am 18. i have had epilepsy for just under a year. my first seizure came out of nowhere. i am very sorry to hear about your car crash. that must have been tough to get through. i am now taking 13 pills a day to try to control my seizures and i still have them. you are not invisible in any way. thats how i felt before i came here a short time ago. good luck!!!

[RobinN]

Hi and welcome to CWE
My daughter Rebecca is 16 and has been having seizures (out of the blue) for 1.5 yrs.
She is having less seizures off meds, eating a nutritional diet.
However, I want to have her try the EEG neurofeedback, as she has a definite area of the brain that they are localized.

I hope you choose to stick around for a while. There are others your age here.

[Stacy]

Welcome. I'm sure you will enjoy the site. My husband has done an excellent job with it.

[skillefer]

Hi Alysa! Welcome to CWE! I'm 36 ( a little older than you). My seizures started at the age of 3 after a traumatic brain injury. Everybody here has a different story, so I'm sure you'll find someone with similar experiences. Again, welcome!

[speber]

You're definitely not alone...make yourself at home!
Peace

[Alysa]

Tell me a bit about yourself! Your name, your age...
if you want to of course. You are the first reply I got back!

-alysa

[skillefer]

LOL....which one of us?

[Meetz1064]

How's it going? And NO, you're NOT invisible!!

Welcome to CWE! You've found a great HOME here. You'll fit right in, I promise. Ask all the questions ya want. We'll help ya all we can.

Meetz

[Bernard]

Alysa, if you click on any member's user name, you should get a menu that includes a link to view their profile. Most members have the basics listed there (you can edit your own profile from the User complex partial link at the top of the page). Most members have also created their own introduction threads here in The Foyer.

[kirk267]

Hi Alysa my name is Kirk and I'm 27!

I've had my share of near fatal seizures one in particular comes to mind was when I to was driving a car, luckily my mom was in the car to grab the steering wheel or we would have definitely crashed into something.

Talking about being lucky for both our sakes hey!!!

I've had epilepsy ever since I was 13 and presently my epileptic medications are not controlling my seizures either, I'm just so frustrated!
The best advice I can give you is not to give up and keep talking to your neurologist about what's happening like side FX and how it's affecting your life.
Or maybe look @ alternative epilepsy treatments and talk to your neurologist about them. Just google search " alternative epilepsy treatments"

I hope you didn't get injured and remember your health and safety comes 1st!

[Alysa]

Hi Alysa my name is Kirk and I'm 27!

I've had my share of near fatal seizures one in particular comes to mind was when I to was driving a car, luckily my mom was in the car to grab the steering wheel or we would have definitely crashed into something.

Talking about being lucky for both our sakes hey!!!

I've had epilepsy ever since I was 13 and presently my epileptic medications are not controlling my seizures either, I'm just so frustrated!
The best advice I can give you is not to give up and keep talking to your neurologist about what's happening like side FX and how it's affecting your life.
Or maybe look @ alternative epilepsy treatments and talk to your neurologist about them. Just google search " alternative epilepsy treatments"

I hope you didn't get injured and remember your health and safety comes 1st!

Kirk! I finally figured the way you reply to these messages! I know, it's easy, but I really look hard enough. So yes, yesterday I had 3 partial complex seizures. I now seem to have mostly "catamenial seizures" which, if you don't know, are the female hormonal seizures in sinc with the menstrual cycle. Fun. Every month. So I am desperate for friendships! Tell me where you live? I have the feeling it's nowhere near L.A. Anyway, write back if you want!

alysa

[Alysa]

Kirk! I finally figured the way you reply to these messages! I know, it's easy, but I really look hard enough. So yes, yesterday I had 3 partial complex seizures. I now seem to have mostly "catamenial seizures" which, if you don't know, are the female hormonal seizures in sinc with the menstrual cycle. Fun. Every month. So I am desperate for friendships! Tell me where you live? I have the feeling it's nowhere near L.A. Anyway, write back if you want!

alysa

Oh, and I'm involved in some alternative therapies too- but I am still on "Western medicine." Are you? if so, which ones? and which alternatives are you on?
thanx!
alysa

[RobinN]

Hi Alysa - my daughter isn't near your age, she is 16. However, I know exactly where Westchester is. My neice lives in your town. I am near Pasadena. I bet there is a Epilepsy group in your area where you could meet others.

I believe a lot of Rebecca's seizures are catamenial seizures too. She has had others that don't seem to be related, however the cycle is a funny thing and hormones can fluctuate even based on foods that you eat.

Glad you joined us. If you have any more questions about the site, just ask.

[Alysa]

Hi Bernard- I just want to say that I did neurofeedback for quite a while and it really didn't do anything positive! So I feel like I'm some "special case" where nothing works! I kind of don't like talking to my neurologist about this because all he wants to do is try a different medication or put me on more of the ones I'm on! As if those don't have side FX already! making me sooo tired!
I'm determined to find some other route!
alysa

[Meetz1064]

I don't remember if I've said hi to you yet or not, so if I haven't......HELLO! If I have, well.......HELLO AGAIN! Hehehehe.

It can be frustrating trying to find control. I do know this. I went through a rough period of lack of control, and that was with my nasty, violent t/c's that I wouldn't wish on anyone. I've literally broken my back from them.

What kinds of alternative therapies are you considering? Or have you just started looking? There are diets that you can consider also. Some of us ep patients are gluten and lactose intolerant......some of us aren't. But some diets do help. Some supplements, like magnesium, potassium, CoQ10, taurine and a few others help us also.

I use a modified form of the GARD diet, and I think someone else on here is using the LGIT diet (Stacy, maybe?)...RobinN's a guru when it comes to supplements and such, I think. Zoe's full of good stuff, too.....a walking encyclopedia that one, when it comes to alternative stuff. Bernard.... Mr B does know his stuff!!

Take care!

Meetz

[kirk267]

Hi Alysa it's Kirk from this point on if you want we can start our new frienship! OK?

I'm from Winnipeg, Manitoba and I was diagnosed with epilepsy when I was 13 and have lived with it over half my life!

I have a neurologist that I've been seeing for about 3 or so years now and I'd have to say that my life has definitely been a wild rollercoaster life style!

I've had some close encounters throughout my life having gran mal seizures when I was a teenager but presently have only petite mal seizures.

2 years a ago I was sent by my neurologist to see if I was a candidate for brain surgery in Montreal but unfortunately I wasn't because they found out that my seizures activity in my brain was located in my speech area and even if it were in a different location I had no scar tissue (it was genetic) so that they could accurately pin point the precise location on where to operate .

So they concluded that it was far too risky to do brain surgery on me so of course I was a non-candidate!

And ever since that time my neurologist has had a difficult time adjusting or changing my medication even up to now so that it would control my seizure activity.

I'd like to add that I'm really having a difficult time dealing with this matter and also the fact that on October 16th last year a break press machine i was operating malfuntioned and crushed my 4 fingers on my dominate left hand and I'm presently on Workers compensation and unable to work for approximately 9 months to a year!

This traumatic injury caused my epilepsy to go out of control because chronic pain and stress is a perfect way to trigger seizures.

But on the good side I got my index,middle, and ring finger recontructed by one of the top plastic surgeons in all of Canada. And am presently focusing on recovering and healing my hand by having numerous physio therapy and occupational therapy appointments and doing my numerous daily physio exercises so that I can get back as much movement as I can in my fingers.

Anyways I define these problems as "THAT'S JUST A PART OF LIFE AND I HAVE TO ACCEPT IT AND MOVE ON THE BEST I CAN ".


In my personal life I enjoy rollerblading, cycling, weigh training, watching movies and japanese anime, and jamming on my electric guitar with my friends.

SO LETS BE FRIENDS SHALL WE AND I LIKE SAID IN MY PREVIOUS MESSAGE NEVER THINK YOUR ALONE
BECAUSE IF YOU DO YOUR JUST KIDDING YOURSELF! OK?


Take care Alysa and I hope you feel better soon!

[Bernard]

... I did neurofeedback for quite a while ...

It took Stacy ~5 months on a NeuroCare Pro before we really noticed any results. We almost quit 3.5 months into it because we weren't seeing any results. Fortunately we persevered.

How long did you try it? What brand of machine were you using?