Hello Everyone I'm New

[ashlealady]

Hi my name is Ashlea and I had my frirst seizure November 1st 2005. I was 20 years old. Since then I have been on and off 4 or 5 different types of medications. I am currently on 3 different types that total 1702mg per day. I have both Absence Seizures and Tonic-clonic Seizures. My mother also had seizures in her late teens. My last seizure was in December of 2009. I am currently not working.

I love to read but I have been having extream focus problems the last few months so that has been hard. I also love to go to concerts and listen to music. I also love movies...any Harry Potter fans getting ready for the 19th?

I missed lots of silly 20 something things due to this...partying and such, but I mostly miss being able to drive myself to the store or go on a walk with my Great Dane by myself or work or right now even read a book.

I'm 25 now and as more and more of my friends start to have kids and knowing that the doctors can't tell me why this is going on...if it has something to do with the fact that my mother too had seizures. I don't have the strength to do that to a little person if I can help it.

[Nakamova]

Hey, ashlealady, welcome to CWE!

The "not knowing" can be one of the tougher things about epilepsy. For the majority of people with a seizure disorder there is no known cause. My first seizures came out of the blue when I was 35, and although I have a lot of guesses, I don't think I'll ever know for sure. Even with a possible genetic link as in your case, there's still the question of what initial or secondary triggers might be. Since you and your mother both had your first seizures in your late teens, perhaps there is a hormonal cause?

It's great that you've been seizure-free for a year. Any chance that your doc would explore backing off slightly on the doses of your meds, in the hopes of reducing the side effects?

Best,
Nakamova

[travel bug]

Hi Ashlealady,

Welcome to CWE. I think you'll find that this site is really helpful and the people are wonderful and supportive.

I'm sorry you're having difficulty focusing and aren't able to read as much as you'd like to. Reading is always such a nice little vacation from everyday problems; that must really suck!

And no, those "silly twentysomething things" aren't silly. You have a right to feel like you've been denied an important part of life. BUT, it's never too late; you don't always have to do those twentysomething things in your early twenties. And "silly" doesn't have to be extreme. You can have a good time without putting your health at risk. I was an uptight goody-goody during my twenties and had absolutely no fun what-so-ever. It wasn't until a few years ago that I loosened up a little a gave myself a second chance at my twenties a few years late. I then realized how great it is to be "silly" and really bond with friends, but I was still true to myself and didn't indulge too much, but still had a great time and my friends respected the fact that I liked to have fun within certain limits. Don't let others put you in an either/or situation, and never let others dictate your timeline!

Hang in there! With time, you may find the right combination of meds, get good seizure control without side-effects, and then you can get back to a "normal" life, or at least back to driving or walking your Great Dane.

By the way, I'm also looking forward to the 19th!

[Cint]

Hi Ashlea,

Sorry to hear your life was put on hold, like so many others on this site. I had my first seizure when I was 22 years old, out of the blue. No history of seizures in my family.

I was already engaged to be married when the seizures started, so we went ahead and married, had two wonderful children who are now both grown, one is married, the other is in law school and both are healthy. Neither have seizures.

I've not been able to work because of the seizures, but it differs with each person. Since you haven't had a seizure since last December, like Nakamova said, maybe it's time to discuss decreasing the meds with your neurologist, since the side effects are effecting your ability to focus.

BTW, could you go for a walk yourself with your Great Dane? Would the dog be able to detect a seizure before it happens?

I hope you're seizures do remain under control.

[Endless]

Ashlea,

Welcome!

It's so hard to get clear straight answers from the doctors. I went through 4 doctors before I got a good diagnosis as well as solid answers about what was happening to me.

Getting the right doctor is key. If you continue to not get the answers you are looking for, consider going to a regional epilepsy center. It looks like you have a level 4 center near you: http://www.via-christi.org/body.cfm?id=403&fr=true

About having a normal life. I'm finding my seizures are isolating me. I can't drive either. At first my friends were pretty good about coming to pick me up and taking me into town, but that tapered off over time and now I rarely see anyone. There is a dog park within walking distance and I meet lots of nice people there, but it's a really long walk so most days I can't go. My joints are too painful from the Lamictal. I have to walk over 3-4 miles to go anywhere by bus which is impossible with the current situation with my joints. When I walk anywhere I sometimes find myself stranded, unable to walk back. I've depended on the kindness of strangers, which I don't think is a very safe practice.

It's too hard to remember where I am in a book and it hurts to think too much so I rarely read a book. The ones I do read are "dumbed down" from the types of topics I used to read. Forget about dating. The last 2 men who asked me out ran for the hills when they found out I have a seizure disorder. I hear there are really nice men out there who don't care, but I haven't met one of those yet. I walk my dog alone. I worry about having a complex partial seizure and wandering into the busy road.

People don't understand how epilepsy affects our lives. Seizures are bad enough, let alone how all of it changes the way we live.

I am trying to build up my brain again. One of the doctors I saw said it's like exercising muscles. The more I do the more I'll be able to do. And the place to start is something I both can do, and enjoy. So I write. I find I can do more at one time every day, and it is becoming more cohesive over time.

I try to find happiness in the things I can do. I can write. I listen to music. I can post here and hopefully contribute and help others. I can take my dog on small walks and breathe in the fresh air, and enjoy the scent of the pine trees and wet leaves. I can email with friends around the world that I've met in my travels. I can create art, and do small projects to help others. I plan to go back to work as soon as I can, and then I'll be doing good work, too.

Hang in there. Things are going to get better for you.

[RobinN]

Hi Ashlea - welcome to CWE
My daughter Rebecca is 19 on the 17th of this month.
If she can be an inspiration, she is med free and has been seizure free for 6+ months now. She could actually be allowed to drive now in CA, but I asked her to be seizure free for a year. High school was not a very great time for her, but now she is moving along beautifully into a very independent life. She goes to school, just started a new job with Banana Republic, a new boyfriend, and loads of new supportive friends.

Life has it's down turns, but it makes us appreciate the upsides.

[ashlealady]

It's great that you've been seizure-free for a year. Any chance that your doc would explore backing off slightly on the doses of your meds, in the hopes of reducing the side effects?

We have had little to no discussion of it as of yet. After my first seizure in 2005 I went just over 2 years seizure free. Got tapored off my meds just to have another tonic-clonic seizure. So it is something we might consider in another 6 months or so. All my blood work looks great and the addition of my 3rd seizure/sleep medication seems to be helping.

[ashlealady]

And no, those "silly twentysomething things" aren't silly. You have a right to feel like you've been denied an important part of life. BUT, it's never too late; you don't always have to do those twentysomething things in your early twenties. And "silly" doesn't have to be extreme. You can have a good time without putting your health at risk.
By the way, I'm also looking forward to the 19th!

I have been able to do many things. I even worked at a bar after my seizures started. I still go out with my friends...I have to take more breaks or nap before we go out. I do miss doing more for Halloween, strobe lights cause a problem, and being able to enjoy amusement parks. (I have always had bad motion sickness but after the seizures started it got WAY worse.) I do have to say that I tend to save up all my energy and sillyness for any Harry Potter event.

[ashlealady]

I've not been able to work because of the seizures, but it differs with each person. Since you haven't had a seizure since last December, like Nakamova said, maybe it's time to discuss decreasing the meds with your neurologist, since the side effects are effecting your ability to focus.

BTW, could you go for a walk yourself with your Great Dane? Would the dog be able to detect a seizure before it happens?

I hope you're seizures do remain under control.

I've only been not working since June of 2009. Sadly since it's just me I'm between neurologists right now since I have no health coverage. There is a community network of doctors that provide their office visits for free and they are working on getting me into see one soon. Lucky for me my regular doctor has treated me off and on since 2005 and has history treating epilepsy. So we get by. She feels the focus problems may have been linked to a bought with sleeplessness I was having. So she added a 3rd medication that helps with both the sleep and the seizures.

As for the dog, my doctor is to comfortable at this time me walking her alone, or going places alone for that matter.