Young and new to this, too? - Epilepsy Message Board

DC29guy · 07-09-2004, 02:46 PM

Hi,

I am 29, live outside DC, and am finishing my last yr of law school. I was diagnosed with E a little over a yr ago after a grand mal. I have been on several drug combos which haven't worked. Recently started having grand mals more frequently. I am in clinical trials at National Institutes of Health in preparation for surgery. Still no idea yet what is causing my seizures, though. Currently on Keppra 3000/day and dilantin 300.

Things kind of a mess now. I am down a lot because I can't think sharp like I used to and feel like I'm making excuses. My life isn't what it used to be, although I try to downplay the effect this is having. I have support from family, friends, and a great guy, but it would be nice to correspond with someone else in my shoes. Even better if in DC area. I'm a great listener btw and will do what I can to help.

I appreciate any comments. Take care!

dc29guy

tkdmom96 · 07-09-2004, 04:55 PM

Hi dc29guy,

Welcome to the boards! Our daughter just had a resection for her intractible Epilepsy. She is 16 now, but was diagnosed at 9 months old. She had surgery on June 7th, and so far has been seizure and aura free. Katie has Complex Partial seizures and has had 2 Gran Mals, both within the last year. I should clarify that they came at a time when all of her meds were removed and she was sleep deprived during a 6 day stay in the hospital having a VEEG study done. She went through a year of tests before being a surgical candidate.

Please read about the tests and things we had to do over the last year under the following threads "EPILEPTOLOGIST: PLEASE help find a board member...",
actually I forgot how many threads are out there with Katie's journey on them. Click on my board name and a little box will come up and you can chose to read all of the threads I have started. Any of the ones with "surgery" are informative, but read the one I mentioned above first. That has a great deal of info.

Did you have a head injury? Did they check for any possible stroke damage?
Did anything happen to you to cause a serious imbalance in your body chemistry? Did anything show up on an MRI?

Katie has been on 7 different meds (and combos of those meds) over the last 15 1/2 years. She had one med that worked for 12 years and then it just stopped working, that was Tegretol. It has been within the recent puberty years that the other meds had been tried, with no luck. Complex Partial are very difficult to control with meds.

If you have any questions regarding surgery, please feel free to ask. I'll answer whatever I'm able.

Take care and welcome,
Vicki

radasjewel · 07-10-2004, 05:56 AM

Hi dc29guy
My names Lori I am 26 and have had Epilepsy for my whole life. I am not one to ask about the clinical trials, but I can help you with ways of living and overcoming problems associated with Epilepsy. To start with it might be handy to start keeping a journal of when you feel "odd" as this will help the doctor to try and determine what is triggering them. Look back at what you were doing or what was surrounding you when you had your siezures. Was there a common denominator? Can you feel the siezures coming on with aura or dizzyness? I know this is going to sound strange but try and get more sleep it does help with the jumbled mind syndrome & I have found that having Epilepsy it does benifit if you sleep a little bit extra than the average person. Rests the brain a bit and it stops or hinders the severity of "short circuiting".
It does not mean the end it just means changes. It does have an effect on your life and you do need to go through a grieving period of what has changed, it helps you move on later. Please know that you can still lead a relatively normal life, some people will try and tell you otherwise but it is possibile.
If I can be of anymore help let me know
Lori

loony74 · 07-12-2004, 10:13 AM

I am also 29 & have epilepsy and I take 400mg of Topamax daily. This is the 4th type of medication I have been on. The first was 1500 mg of depakote daily. I got up to 22lbs and all of my hair fell out. The 2nd was dilantin which is horrible for the bones in your teeth and my teeth are pretty weak, then they tried lamictal. It made me hallucinate. Now I take the t-max. I lost down to 128 lbs and I can't gain weight with it. I would rather have that side effect that the others I have. It controls my seizures pretty well.

My life is pretty normal now. Like Lori said your life will change a little but you can pretty well lead a normal life. I do pretty much whatever I want and am ok as long as I take my meds.

If I can be any help let me know.