Introduction

[CarrieV]

Hi. I am Carrie and have had a seizure disorder of uknown origin since Jan. 2001. My seizure control had gotten progressivley worse since them. Going from need no meds during 2001 to 2004 to needing 600mg of Trileptal TID and still having breakthrough auras. I came here because I am frusterated and ready to cry. The neruo is not worried about the breakthroughs, as long as I am not having grandmals he seems to feel that the meds are controlling the seizures.

On the natural side of things I tried the MAD diet but was unable to stick with low amount of carbs. So as I looked back over my history I had less seizures when I was on a strict gluten free/ dairy free diet in 2007. (At that time used it for weightloss not seizures, just now made the connection.) So now I am going back to a GF diet and will probably progress to G.A.R.D.

If there are any moms with poorly controlled seizures here I would like to know how you handle your days. I currently have 5 children ages 7 and under. I also homeschool the oldest. With the amount of auras that I am having I am not able to take care of the kids. The noise and amount of movement sends me into a tailspin. When I am with them they have to be quiet and still which of course is hard on them. DH works from home so that if I need to take extra meds or things get bad he is able to take them into his office and let them use computer or play with special toys. My MIL also takes the kids 1 or 2 days during the week if I am having a bad week which has been pretty often since the baby was born in Feb. What do you do if your are having a bad day with seizures/ auras? How do you keep your kids safe incase you do have a seizure? DH will not let me be alone with the kids at this point. I do not give them baths, they take showers if I do it. I change diapers, on the floor ect....

I want to FEEL NORMAL again. Is there any hope? Right now I walk around in a drug induced stupor compouned by the breakthrough auras.

Ok, I am off my soapbox. I just had to vent. I feel like I do not have any safe place to do that.

Do you know of any doctors that support natural treatment of seizures? I know that a lot of mine are related to hormones. My neurologist just wants to do meds. I am in Florida but DH is willing for me to travel to get care.

Thanks for Listening,
Carrie

[BuckeyeFan]

First, I would like to welcome you to our house. Have a seat and relax when you get the chance. This could be the release you need.

It sounds like you have a good start on some information, but I think you will find much more here. We have several good people with diet experience. I personally have done fairly well on meds.

In my opinion, your neurologist is dead wrong on allowing the auras. Up until 5+ years ago, my doctors were fine with that as well. I agree that can be awful at times. When I got my current neurologist, he stated that the goal was no auras at all. The auras are seizures themselves and he felt it was inappropriate to not fully treat the E if possible. I don't know your complete situation, but I would consider a second opinion.

Best of Luck and welcome again.

[skillefer]

Hi Carrie! Welcome to CWE. I agree with Buckeye. With my neurologist, the goal is no auras, no seizures. As to the question about being a mom...I don't know. I'm going to be a mom in July...add to the epilepsy the fact that I'm hard of hearing, and it's going to make raising an infant interesting. My MIL lives with us, and she'll have a monitor in her room as well in case I don't hear the baby cry. It looks like your getting a good start on the GARD diet. Have you tried supplementation? Some of us, inclucing myself, use Magnesium supplements. My neurologist said 1000 mg. a day is fine. Trust me, you'll know if you're using too much. (very loose stools) The magnesium is like a muscle relaxant. You might want to give it a try too. Welcome to CWE....feel free to ask questions, chime in, or just vent in the padded room as needed. ( And trust me, we all need to at some time or other.... ) Just curious....has your hubby gone to your neurologist appts with you?? It just seems that he's kinda overreacting, and maybe you both need to just sit and have a good talk with the doc as to what are reasonable expectations...what you can and shouldn't do with the kids....just my opinion.

[Meetz1064]

and how do you do?

I have to agree with both Buckeye and Skilly. Your doc is wrong about not treating the auras, and your hubby does need to sit down with the doc, too.

While being an E patient is not fun, being a E spouse is not all that great either, I'm sure. But hubby needs a bit of a reality session.

Doc, on the other hand, seems to forget that auras really ARE seizures. OY.

Commendations to you for homeschooling, especially with that many young ones in the house. I wouldn't be able to do it myself.

Feeling NORMAL? Uh, yeah. I've been begging for that for years. The closest I got was on the GARD diet.......and now that I've been diagnosed as a celiac (with severe lactose intolerance), and am slowly converting over to that diet, things ARE getting better. I feel steadier. So there IS hope, there truly is....don't get down into that pit of thinking that there isn't any hope, OK?

Feel free to check out all of the nooks and crannies here in the AWESOME home that Mr B, our host, has built for us. Lots of good information in the Kitchen and Library, too. And, I see, Buckeye brought you some of his yummy coffee (far better than mine, I promise).

Take care, and good luck!

Meetz