Thinking about my EEG Results.

[skyfire322]

Well, even though I had the ambulatory over a month ago I keep thinking about my results every single day. I must say, it does worry me in a certain way.

Most people I know who have E mention that they have been diagnosed with E in a certain part of the brain, ie temporal, frontal lobe, etc. My results showed that my entire brain was going off the charts, so there wasn't any specific part of the brain where most activity was occurring.

The main reason why it worries me is it may limit the treatment options available. Since there IS activity all over, would you guys categorize this has "Generalized"? I was officially diagnosed with generalized idiopathic, which has been confirmed by three different neurologists. Also, should I worry this much about the "limitations of options"?

 

[rickard]

The main treatment that won't be available to you is surgery. Since there's no epicenter in your brain that can be identified as being the origin of your seizures, there's nothing that can be cut away that might resolve the problem. While brain surgery is a frightening concept, it can be a permanent cure for folks with localized epilepsy.

That being said, there are lots of other treatment options that may work for you.
- Medication Options: Keppra, Lomictol and Depakote both have been scientifically proven to be effective for treating generalized epilepsy.
- Surgery Option: Vagus Nerve Stimulator
- Homeopathic Options: Modified Atkins Diet/Ketogenic Diet

My wife has generalized epilepsy (Absense seizures with a myoclonic twitch). Hers happens to be very difficult to treat. She's currently on Depakote & is having between 1 & 0 seizures per day (which is a huge improvement from the beginning of this year). She just started the Modified Atkins Diet in hopes of becoming completely seizure free & possibly reducing or eliminating the Depakote.

It can be a long road finding the right treatment option. The key is not to give up & keep trying things until you find a treatment that works for you.

 

[JaneC]

My daughter's diagnosis is also generalised idiopathic, Skyfire. As Rickard says, the main implication of that is you won't be able to have surgery. In some ways, even though that means my daughter is "stuck with it", I'm quite glad. I hate the thought of brain surgery and the thought of potentially having to help her decide whether or not to have it. I suppose that's a way of putting a positive spin on it. She's doing not too badly on medication.

 

[Ker-stee]

I have ige too, found meds at a dose which suits me and I'm 4 months clear at the moment (previously 16 months clear)

 

[skyfire322]

The reason why I ask is because I've been really down the past few days because this is the most epileptic activity I've had in my entire life. It's been especially difficult on my family who lives 400 miles away, and also my co-workers. I hate to see them so concerned!

When it comes to medication, I'm on 600 mg of Lamictal and 1500 mg of Keppra. The odd part of it is that ever since Keppra was introduced, I've had more activity. Even if it's just auras. I was taking 2000 mg of Keppra for about a month or so, but my neurologist lowered it because I was having very bad side effects.

The thought of surgery did scare me a little, but it did cross my mind a few times until I got my results. Would it be worth asking my neurologist about the possibility of a VNS or diet change? I'm sure it wouldn't hurt. The one thing I'm concerned with when it comes to any type of diet change is that I have a ridiculously fast metabolism, and I'm about 15 lbs. underweight because of it. I have never heard of the MAD or Ketogenic diet though.

I've only had two appointments with my new neurologist, so I'm still trying to "figure him out", but it seems like he's one who likes to take baby steps.

 

[Nakamova]

You might want to start with the less-invasive options (like diet) rather than something like the VNS which has had very mixed results. See http://www.coping-with-epilepsy.com/forums/f23/vns-journal-ongoing-thread-19502/

The ketogenic diet is very restrictive and is usually more appropriate for young children. The MAD has been used successfully for both kids and adults, particularly to reduce absence seizures. You can read a bit more about it in CWE's Diet Subforum, as well as at the links below:
http://www.hopkinschildrens.org/Modified-Atkins-Diet-Treats-Childhood-Seizures.aspx
http://www.atkinsforseizures.com/

 

[skyfire322]

Thanks for all the info! Should I bring the diet idea up when I see my neurologist before jumping in?

 

[Nakamova]

Definitely talk it over with the neurologist first. I's ideal if the diet is okayed by your doc, and you have a nutritionist or dietician to help supervise it and answer questions. I hope your neurologist is open to the idea -- not all neurologists are familiar with dietary approaches, and some of them can be hostile to them even when there's plenty of mainstream studies that show they work.