New here

[tsjohnson]

Hello everyone. I have been reading through the forums for the past day and found some really good info here. CWE seems like a really great place.

A little about my E-xperiences.

I had my first Grand Mal about 12 years ago (23 years old). I went to see a Neurologist in the area, did EEG's, CT etc....
He told me that they generally don't treat a single seizure because as he put it "anyone can have one at any time". I was fine with that....then. I was young.

3 months later, I had another. He started me on Dilantin. I had to stop taking it though, it was giving me unbelievable heartburn. My seizure frequency increased to an average of once a month. It took almost 14 months and a few different meds and diferent combos of meds to get them under control somewhat. What I mean by that is every 6 months.

After 2 years and 15+ seizures later I started to get petite mal seizures also. I may have had them before, just never really recognized them or understood what they were until I really started to research seizures. My doctor then added Trileptal, which I am still on today.

So now skip ahead 4 years, seizures every 6 months or so and my doctor just feeding me meds. I am starting to lose confidence in him because we can't seem to get them under control. I want a second opinion on what my doctor is doing. I make an appointment with a specialist in Boston, MA.....8 month wait . I was told he was one of the best. He basically agreed with everything my Dr. was doing.

I went on like this, then I told my Dr. I was not happy and we need to do something more, I was tire of the seizures. I had to quit my job because I worked 72 miles from my house and had no license anymore. We commenced on different combos of drugs again....stayed on trileptal because those seemed to keep the partials at bay for the most part, took me off of what ever I was on at the time and put me on Lamictal. Over time, the frequency decreased. We kept raising the amount that I take. I went 4 1/2 years with no seizures......Until this past Oct when on Oct 5, I had three in one day.

Currently Trileptal dosage is at 2700 a day, raised Lamictal to 600 from 400 and added Keppra..1000

Sorry for the long post....but I didn't know how to say it any other way without losing detail.

Tom

[Nakamova]

Hi Tom --

Welcome to CWE!

It sounds like you've been on the medication merry-go-round for awhile. I hope you've found a combo that will work long-term in controlling your seizures. You may be interested in some of the non-medication approaches (such as diet and neurofeedback) to reducing or controlling seizures that others on this site have had success with.

I share your frustration with finding not only the right meds, but the right doctor as well. A knowledgeable, responsive neurologist seems to be a rare thing, even allowing for the complexities of seizure disorders.

Feel free to ask questions, share experiences, vent, etc. This is a great forum and a terrifically supportive community.

Best,
Nakamova

[tsjohnson]

I am pretty sure I narrowed my triggers down to stress and lack of sleep. Unfortunately, they both probably led to my last 3 seizures. Even though I am sure that those might be my triggers my doctor still wants to keep me on meds. I have tried the Ketogenic but when I told my primary care physician about it, he strongly suggested against it....due to having high cholesterol.

[Nakamova]

The ketogenic diet definitely has negatives, and is usually most effective with kids. But there are other diets such as the mediterranean, GARD and MAD that are worth considering.