New Here, I have questions..

[sumood]

Hello dear all,
I have been reading your comments and stories for a while now. I have come to admire your courage and determination in fighting this battle against epilepsy.
My wife has epilepsy. We have been married for over twelve years. We have three kids; ages 7, 5, and 4. Usually, she would have a tonic-clonic (Grand mal) seizure once a year. Lately though, she has had 3 so far this year. The last one was yesterday.
My question: my wife takes Lamictal. She has been taking it for the past nine years. Could it be that this medicine is losing its effectiveness? We are going to see her doctor as soon as we get an appointment.
We live in Charlotte, North Carolina. Does anyone know of a good neurologist in our area?

In solidarity,
Sumood.

[RobinN]

Welcome to CWE sumood.

I can't say for sure that the medication is losing its effectiveness, but yes it can happen. In my opinion it is like a bandaid for the disorder. Unless you find the cause, you will be needing to change the bandaid occasionally.

My daughter has a seizure disorder. Her seizures are tonic clonic seizures. She use to have 6 a month, when we tried meds. Now that she is med free and we have done a combination of alternative therapies she hasn't had a seizure in about 4 months.

There is a direct connection with hormones. Are hers connected to her time of month?
The three that she has recently had, can she connect them to any reason?

I know how scary it is to see your loved one go through this. I can't help you with a good neurologist in your area, but maybe someone else will be by tomorrow with some suggestions.

Keep reading and perhaps you will find some alternatives that will raise your wifes seizure threshold again.

[epileric]

I agree with Robin that you should research the various alternatives.

Meanwhile try this site to find yourself a neurologist.

http://www.neurologychannel.com/mdlocator/index.shtml

[epileric]

Here are the alternatives. They might work well in conjunction with medications but if you're lucky you can eventually ween your wife off of them.

http://www.coping-with-epilepsy.com/...ive-treatments

[Meetz1064]

your wife needs to look into other reasons, and possibilities. OK, the med maybe losing its effectiveness, it may be need to be upped. But that doesn't solve the long term problem.

Have her keep an E journal. It will help determine the pattern to her seizures, especially since they're becoming more frequent. If they ARE tied to her cycle, that's called CATAMENIAL epilepsy....and it can be tied to the actual cycle, or the ovulation, or the week before, or after....you see what I mean. CATAMENIAL is directly related to the woman's hormones.....

Here is a list of things that I tell people to put into an E journal. OK, it's a detailed list, and it's extensive, BUT, it will help you, her and the doctor to find a pattern. And, if it's tied to food, (that happens quite often to E patients) you can look at one the diets listed here to help with the seizure control....

GARD, Ketogenic, LGIT & Modified Atkins Diet (aka MAD)

So, here's the list.......don't get too overwhelmed......

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

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. Also, LADIES, DO get a thorough check of ALL your hormones done—female, thyroid, and any others. Believe it or not, they do factor in on seizures.

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. ****side note**** Auras ARE partial seizures!!!

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 mods, 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).

3. Look into a glare screen for your computer 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 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.

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

I will be back later tonight if you have any questions..

Take care, and welcome to CWE.

Meetz

[Bernard]

Hi sumood, welcome to the forum.

... My question: my wife takes Lamictal. She has been taking it for the past nine years. Could it be that this medicine is losing its effectiveness?

Yes, it is possible. It's also possible that her metabolism has changed, or there could be liver problems, or vitamin deficiencies (whether caused by the anti-epileptic drug or not), or something else.

I'd suggest getting her medication's blood syrum levels checked to ensure that she is still at the therapeutic dose. It would also be a good idea to get some tests done on the liver to make sure it's healthy (most anti-epileptic drugs, including Lamictal, are metabolized in the liver). Finally, it wouldn't hurt to take a good multi-vitamin.

[dfwtexas]

I have had my keppra levels upped a few times and it is not unusal for the meds need to be upped. Has she talked to her doc about it?