Hi

[cfarley121]

I just found this site while looking for more information on dealing. I have spent the afternoon reading posts. I wish I could say it made me feel better, but I am in a very dark place right now. I suffered a TMI 9 years ago and have had seizures since. I have been on just about every medicine out there. I am on a "cocktail" now that lessens the frequency (down to 5 a week instead of 5 a day). I feel so out of control. Everything I was seems to be gone. I feel like a shell of who I once was. I normally try to look on the up side of things but the memory issues are really getting me down.
I have a wonderful boyfriend who is so supportive, but I ponder how long he will stick around. We are not married and I am sure this is more than he realized he was signing up for.

 

[Endless]

Hi, cfarley,

Welcome to the forum!

Yes, our posts are not always cheery but we are honest in what we think and feel, we support each other through the ups and downs, and that gives us strength. We also try to look on the light side and find what beauty we can in a tough situation. In the end we are here as a community to lean on each other and to help each other. The spirit of the place is like a dinner party among friends.

Something you may find useful is the information in here - we share the information we wish our doctors had or would. Many have links to the research so you can see what's being said is accurate. Knowlege is power - it helps us gain back some sense of control and the ability to make good decisions about our own health care.

I am so so sorry you are going through all this. Seizures are hard mentally and physically, and it's hard to keep our spirits up. The reality that new drugs and treatments are coming out all the time keeps a lot of people going.

Here's a link to non-invasive solutions that are coming out soon.
http://www.ninds.nih.gov/disorders/epilepsy/epilepsy_research.htm#Section2_3
http://www.ninds.nih.gov/disorders/epilepsy/epilepsy_research.htm

Memory is a really hard one to deal with. I find it frustrating that my family and friends say, "just write everything down!" Well, if I wrote everything down I'd have a 100 page book every day. How do I know what I'll need to remember? Or how do I even remember to write it down? I used to love to cook - about a year ago I almost burned the kitchen down because I forgot I was cooking and it caught on fire. Should I have written that down??? lol.....

That said, occupational therapy can help give you some tips on the memory thing. It may not make a huge difference, but may help in small quiet ways that make life more livable. I've also found that cutting myself some slack helps a lot. If I stress over forgetting something it makes my memory even worse.

Boyfriend - if he loves you and he is mature enough he'll stick around. If he doesn't love you or he is immature he might go. In the first case he's a real keeper and hug him tight. In the second case you deserve better and it will come to you. Know that you will always be loved in this life.