Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Looking for support from fellow E newcomers
Sun, 12/19/2004 - 18:57Hi. It's my first time posting to this group. I'm 29, live in DC, and am looking for some support in the area. I've never been able to sit down with someone in a similar situation--close in age & also new to E. I was diagnosed less than 2 yrs ago. I was in my second semester of law school; it came out of the blue. It's been quite a ride to say the least.
After a string of med combinations that I was either allergic to, made me have a terrible memory/poor cognitive skills, or didn't control my seizures (Dilantin alone, Trileptal, Keppra), I think I've found the right one for now with lamictal/dilantin. I'll be losing the dilantin very soon--good riddance! At least I haven't had a seizure since April. When I do, I have pretty bad grand mals without any warning at all. After 2 weeks at NIH I found out I wasn't a good candidate for brain surgery--which is good in some ways I guess as long as the meds keep working.
Now that I've readjusted a little, it's time to work on the rest of myself. I have finally started to accept this and deal with it. This semester I got the courage to ask for extended time on my finals & to write my "disability" on govt employment applications. I have been doing a lot of yoga, which helps me keep good perspective. And my family & friends have been so supportive. But there are times when I just can't remember easy things (like how to use my ATM card or how to put a % into a calculator), and I remember how I used to be. That frustrates and saddens me. And as much as my family and friends love me, they can't understand what that's like. It would be nice to find someone who knows where I am coming from.
If you are looking for the same thing, I'd love to hear from you. Even if we can't meet in person it would still help since my situation seems fairly rare. Or if there's a support group in D.C. I'd love to know.
Good luck everybody. And thanks!
Jason
Comments
RE: Looking for support from fellow E newcomers
Submitted by jennamay on Thu, 2004-12-16 - 09:19
Hi Jason,
For a support group in your area you may want to contact The Epilepsy Foundation of America (EFA). You may do so at : www.epilepsyfoundation.org/. You may also find the following links helpful as well:
http://www.epilepsy.com/epilepsy/epilepsy_websites.html
http://www.epilepsy.com/epilepsy/support.html
Best Wishes
Epilepsy.com Staff
Hi Jason,
For a support group in your area you may want to contact The Epilepsy Foundation of America (EFA). You may do so at : www.epilepsyfoundation.org/. You may also find the following links helpful as well:
http://www.epilepsy.com/epilepsy/epilepsy_websites.html
http://www.epilepsy.com/epilepsy/support.html
Best Wishes
Epilepsy.com Staff
RE: Looking for support from fellow E newcomers
Submitted by desbah11 on Sun, 2004-12-19 - 04:39
Hi Jason,
I've been lurking on this site for a bit and came across your post. I'm 34, live in Montgomery County, MD and work in DC. I had three seizures about 6 years ago, out of the blue, like you. I took Tegretol for 3 years and was seizure-free for another three years until this past October, when I had my fourth seizure. This time they're saying "idiopathic epilepsy" and I'm back on Tegretol. I'm getting used to the fact that this is who I am, and just trying to go about my life in a normal manner, though I do tend to spend a lot of time wondering if/when I'll have another. I imagine all of these scenarios, like, what if it's when I'm in the elevator with a bunch of strangers, or on the Metro, or walking down the street, or god forbid, while driving. Those thoughts get me a little freaked out, but it passes.
I'd be happy to chat with you, if you'd like. It doesn't sound like my symptoms are as severe as yours, but I'm sure there are some common feelings we're experiencing. Many of my coworkers were there when I had the most recent seizure, so I've had to share some information with them. I'm reluctant, however, to just declare it to everyone. I don't want people treating me any differently.
Anyway, I look forward to hearing from you.
Regards,
Valerie
Hi Jason,
I've been lurking on this site for a bit and came across your post. I'm 34, live in Montgomery County, MD and work in DC. I had three seizures about 6 years ago, out of the blue, like you. I took Tegretol for 3 years and was seizure-free for another three years until this past October, when I had my fourth seizure. This time they're saying "idiopathic epilepsy" and I'm back on Tegretol. I'm getting used to the fact that this is who I am, and just trying to go about my life in a normal manner, though I do tend to spend a lot of time wondering if/when I'll have another. I imagine all of these scenarios, like, what if it's when I'm in the elevator with a bunch of strangers, or on the Metro, or walking down the street, or god forbid, while driving. Those thoughts get me a little freaked out, but it passes.
I'd be happy to chat with you, if you'd like. It doesn't sound like my symptoms are as severe as yours, but I'm sure there are some common feelings we're experiencing. Many of my coworkers were there when I had the most recent seizure, so I've had to share some information with them. I'm reluctant, however, to just declare it to everyone. I don't want people treating me any differently.
Anyway, I look forward to hearing from you.
Regards,
Valerie
RE: Looking for support from fellow E newcomers
Submitted by Christine on Mon, 2004-12-13 - 20:01
Dear Jason: My University studies were curtailed (suddenly) by an Epilepsy diagnosis. I have a different type of epilepsy than you (Complex partial/Temporal Lobe Epilepsy) but the memory absences are an adjunct of it. I was studying English Literature but after some seizures, and getting the medications correct (Dilantin for the seizures & Celexa for the mood/anger disorder that came with the disease) I was left with a severly diminished short-term memory. For example: I would read a book and be unable to recall the nuances of it. Now, I can not recall what has happened from chapter to chapter. I sincerely hope that this doesn't happen to you, but if it does...there is still life and happiness out there! It then becomes a matter of "changing" your dreams. Determining what you CAN do, and what makes you HAPPY!I always loved gardening, and now work at a nursery. I don't make as much money as I had hoped in life, but part of the disease, and recovery from it, may be realizing that money isn't the core of happiness.I'm glad to hear that you're practicing Yoga, because as you probably know by now, stress can exascerbate the seizure activity, as well as cause a multitude of other problems in life.All I can tell you Jason, is that you're not alone. When Epilepsy came into all of our lives (and realizing that it's not something that hard work and dedication can eliminate) it is much less than welcome. I don't know how old you are, but you'll find that life is lfull of good and bad surprises. The key is in learning how to deal with them, and to eventually triumph! (Note: As time progresses don't eliminate your local mental health center's programs on: self-esteem, goal setting, core beliefs, etc. If you are at all interested in the specifics just let me know via this site, I check it every morning.) Good luck! Yes, you will get through this! - Christine :)