New Diagnosis, scared!

[manda817]

My neurologist just called to let me know my EEG on tuesday was abnormal. Temporal Lobe? He wants me to start taking Lamictal right away for it. I have a MRI scheduled for Tuesday, and I meet with the neurologist on the 3rd. In the meantime, anyone have any advice, or anything for me to help make this easier? I am scared to start taking the medication. What should I expect from that?

[Endless]

Manda,

Welcome!

I'm sorry about your diagnosis. It can be so hard. I have temporal lobe epilepsy, too. Read through all the old posts in here and you'll get an earful about temporal lobe epilepsy. A lot of things were happening in my life that I didn't realize were seizures. Knowlege is power - when you know what is a seizure you'll have a better idea how well your medication is working.

Each Med is really different for everybody. I happened to like Lamictal - I actually had a brain on the stuff. It didn't affect my memory or thinking, and I had very few side effect. But I got a huge rash, so I had to stop taking it. I had to quit cold turkey and that was AWFUL. I had tons of withdrawl symptoms and a bunch of complex partial seizures (altered conciousness). Some people hate lamictal, and have lots of side effects. It just depends on your own body. One thing about lamictal is you have to ramp up on it very slowly. Follow your doctor's instructions on that exactly to be safe.

Hang in there. It all does get better eventually.

[Nakamova]

Hi manda, welcome to CWE!

First piece of advice: Don't be afraid to ask a lot of questions. And CWE is a good place to start! Re the Lamictal: I'm on it, with good seizure control and tolerable side effects, though it took a few months for some of the side effects to fade.

Second piece of advice: Write down all your questions for the neurologist, and make sure he answers them. If you can, have someone with you at the appointment to help keep track of what's said. And if you have questions after the appointment is over, be persistent about getting them answered as well.

There are a lot of unknowns with epilepsy -- even the best neurologists can only guess about the causes of a given seizure disorder, how it will progress, which meds might control it, etc. Part of dealing with epilepsy is learning to accept the unknowns while remaining as proactive as possible. This site in particular is a great resource for coping strategies (both with the seizures and with the side effects of the meds), as well information about non-pill treatments such as diet and neurofeedback that are very promising and anecdotally successful among CWE members.

Best,
Nakamova

[PhylisFeinerJohnson]

After eons of searching for the right med mix, I have found the combination of Lamictal and Klonopin to be a winner. With NO side effects. I take Lamictal (400 MG.) in the AM along with Klonopin (.05 MG) and then in the evening, I take 1.0 MG of Klonopin.

I'd say you're off to a good start...

Plus, you've found a caring community here, full of knowlegeable, kind people. Ask away and I'm sure someone, if not many will respond.

Best of luck with your appointments and outcome.

[Cint]

Hi Manda,

I also have Temporal Lobe epilepsy, with the seizures originating in the Left temporal lobe. When you go back in to see the neurologist be sure to ask which side the seizures stem from because that may be a factor in which treatment. Some medications work for some,and not for others. ALL medications originally have side effects that may/may not subside over time. I tried Lamictal about 10 years ago, but it didn't do anything to control my seizures. The side effects of Lamictal were minimal for me. Currently I'm on Keppra and Topamax, both with side effects that take time to get used to.

I hope you find answers soon.