need to switch from Topamax, any advise?

[hisdigness]

Hello everyone,

My wife had a grand mal seizure over 4 years ago. Before that and up until now she suffers from complex partial seizures (zones out).

She has tried Tegratol (possible birth defects potential), Depakote(slowed brain functions), and Lamictal (rash)

She is now on Neurontin (400mg) and Topamax (100mg).

Her ability to respond has slowed enough for myself and her to notice. Her last EEG showed 12 spikes of activity proving that Topamax is not doing what Lamictal did so well.

She is going to see her doctor in a couple days to discuss a different drug treatment and I was wondering if anyone had any advise or opinions on any drugs that work and don't impede her ability to think. Pretty much looking for Lamictal without the rash

Any help is greatly appreciated.

Fellow Coper,

Hooman

[hisdigness]

She was considering the drug called Keppra btw...

[RobinN]

Doctors know that if the first few medicines fail to stop a person's seizures, the chances are not so good that a different medicine will be completely successful. Then it may be time to consider some other type of treatment.

epilepsy.com

Was your wife put on meds after her very first tonic clonic?

My daughter was put on meds after her first two (in one day). Many seizures continued on a trial of 4 different meds, that first year. I finally eliminated the meds, and went looking for the cause. She is now more in control of her seizures than she ever was on meds. Making nutritional changes has made a world of difference.

This didn't happen overnight, but over the last two years, and with the addition of neurofeedback, she has improved dramatically. She is med free.

Was there a reason that you know of as to why 4 years ago your wife had a seizure?
Had she been seizure free most of her life? You might consider working backwards, and help her raise her seizure threshold, back to where it was prior to four years ago.

[Meetz1064]

problem is, that everyone reacts differently to meds.

For example, a number of us here do very well on Keppra, and have absolutely NO problems on it.

Others, however, side effects, like the "Kepprage" (mood swings) which can usually be dealt with by taking vitamin B6. Ask your neurologist about that.

On the other hand, there are others, like me, who have REALLY WEIRD reactions to it, and become the Energizer Bunny on Speed OR see things in triplicate while they are rotating. Yup, it happened.

Talk to her neurologist, see what they think. Some meds are contraindicated based on medical histories/or even race. It's not to be discriminatory, but it's how the chemistry of how certain races have been found to process certain meds....

Nutritional changes are a good start......and an E journal is a great thing, too. It will definitely help your doctor track things down, and hopefully find the triggers so that you can eliminate them.

Here's what I suggest to put into an E journal:

1. Sleep. List how much & when.

2. Eating. List how much, when & what. It's possible to have seizures caused by allergies to food.

3. TV/computer/video games. Yup, they can affect you if you're photosensitive, so list when, what, and HOW LONG.

4. Menses (for women). Start tracking your cycles. CATAMENIAL epilepsy does exist, sometimes it's tied to ovulation, sometimes its right at the TOM.

5. Stress List when it occurred, and what happened.

6. Exercise List what you did, when, and any reactions.

7. Seizures/auras. If you have either, DOCUMENT THEM. Auras--note what they're like--do you smell or taste something that others don't? Hear something? Seizures--how long, when, where, what happened. If you don't KNOW what happened, get eyewitness accounts when possible and DOCUMENT THEM.

8. Smoking and alcohol. Ditch them--both are neurotoxins for our brains.

9. Meds (of ANY kind). List the dosages, and when taken.


*******************

Responses to the above list

1. You MUST get 7 to 7.5 hours of sleep as a MINIMUM, no ifs, ands or buts about it.

2. Eating--one of the other supermods here, Skillefer, (we call her Skilly) promotes eating 6 small meals a day, using a dessert plate, filling it with a carb and a protein. Good idea, I think. However, some people, like me are allergic to certain foods. You might want to look into various diets. Ketogenic, Modified Atkins, Low Glycemix Index, Gluten Free Casein Free (see www.dogtorj.com).

Even though I was on the GARD diet for years, it took the doctors a while to figure out that I was actually a celiac patient, so now my diet is even more strict. But it DOES help my seizure control...I can't imagine where I'd be if I didn't practice it.

3. Look into a glare screen or blue tinted polarized GLASSES (available by prescription from eye doctor). These can help cut down on seizures that are caused by photosensitive epilepsy.

4. GUYS--you may not have a cycle, but you DO have hormones. DO get your doc to do a full hormone screen, check thyroid, etc, just to make sure.

5. Use things like yoga, music, walking, whatever it is that you do to bust out your stress. Keep a separate journal to write in so that you can write out your feelings in--and keep it for your eyes only. Write it out by hand, two or three pages at a time. It helps A LOT. DO IT EVERY DAY.

6. REFLEX E, as well as some other types of E, can be caused by exercise, so DO track what you do. Keep in mind that you SHOULD NOT swim, bike, hike or bungee jump by yourself. Same goes for mountain climbing.

7, 8 & 9. 'Nuff said.

OK, the journal IS a pain in the arse. No doubt about that one. BUT it DOES help the doctors track things down.

Oh, and by the way, welcome to CWE. Feel free to kick up your feet, and check things out. Hopefully someone will bring around something decent to drink, as I'm messing everything up today.

There's lots of nooks and crannies to check out here, the Library and Kitchen are chock full of information, and the Padded Room is great for venting when you need to, so feel free.

Mr B, our host, has built us an AWESOME home here...

Take care, and I hope I didn't overwhelm you TOO much!

Meetz

[hisdigness]

WOW Thanks for the great info...this site rocks.

The grand mal was 4 years ago, however I think for at least 1 year before that (5 years ago) she was experiencing what we thought we zone outs...we didn't know what they were until the grand mal one.

I will have her look at the list you guys made too

[hisdigness]

One other thing to note, is that she only had 1 grand mal seizure ever (THANK GOD) the rest have all been complex partials.