New Here

[mitsybitsy]

Hi, I 'm new here, I have had epilepsy all of my life, I have been on every kind of med and have had every kind of seizure. I have had 2 brain surgeries. It has almost been a yr since my last surgery. Well its kind of a long story as to why there were 2. Anyways although I'd like to call myself seizure free, my md doesn't. I every once in a blue moon get a funny feeling in my arm. I would like to look into a more natural way of curing epilepsy. I was looking into the G.A.R.D diet but I don't quite understand it. Does anyone have any thoughts on this? Thanks in advance.

[Nakamova]

Welcome Mitsybitsy!

Love the killer kitty!

You've come to the right place -- there's lots of information on this site about alternative approaches to treating epilepsy, including diet and neurofeedback. You can search for those and other topics in the forums, and our resident experts will chime in too.

I hope you feel free to share your stories and experiences. There's plenty of room to do so, and different forums here depending on whether you want to chat, vent, or ask questions.

Best,
Nakamova

[mitsybitsy]

Well thanks for the reply Nakamova, this seems like a really great site for people with epilepsy. I am not too sure where to get started though. I am looking for ways to improve my life syle to keep seizures away. I've been reading up on the G.A.R.D diet and I think he is on to something has anyone tried this? I would like to but I'm not sure I quite understand how it works. Any feedback would be much appreciated. Thanks again.

[Nakamova]

There's a "GARD (GFCF) diet" Social Groups that you can join here. You can also send a PM to some of the members of the Social Group for more information.

[Nakamova]

Sorry, I meant to include this in my reply. It's a link to the GARD social group on this site:

http://www.coping-with-epilepsy.com/...gfcf-diet.html

[RobinN]

Hi Mitsy -
When anti-epileptic drugs weren't working for my daughter I found DogtorJ online, and we discussed the pros and cons to the GARD. I also think he is on to something, and when he asked me "What do you have to lose?" I said "Nothing"... so we have been doing a fairly good job of being GFCFSFCF. I have a teenager, so at times she does not follow the leader.

She went from having 6 seizures a month on medication, to none in the past three months. Pretty awesome!

When I first started investigating, I found a kids yahoo group that was helpful. There are also other sites that consider similar nutritional changes and are helpful for neurologist symptoms. I do think that it is too easy to eat high carbs on the GARD, flours, rice, potatoes, etc, I think this is going to backfire unless the calories come from veggies, protein, nuts, seeds. and fresh fruit. IMO

[Meetz1064]

been using the G.A.R.D. diet up until about 6 months ago. At that point, I had become very ill, was nearly hospitalized, and after a couple of months, and over 50 pounds lighter, the doctors realized that I had Celiac Disease. So, I am now on a much stricter diet than before.

Did I find seizure control with the G.A.R.D.? Yes. I did have 2 more types pop up about the time I became ill, but I have still had pretty good control--not perfect, but the one new type in particular is difficult to control.

Do seriously consider the G.A.R.D. It may be exactly what you need......

Take care, and good luck.

Meetz

[mitsybitsy]

Wow, thanks everyone for all your responses and help. I just had a question about what you are supposed to eat on the GARD diet. I know they say no gluten, wheat, soy, caisen, or dairy, but do you think that is really necessary? What if I just stay away from all the msg and the glutamate and high fructose corn syrup? what if I just stay away from anything with chemicals in it? I don't know if this makes sense, but maybe its because I don't quite understand the GARD diet yet I am still reading into it. I am willing to try anything to get off these pills. I take way too many. Thanks so much.

[Bernard]

Hi mitsybitsy, welcome to the forum.

The usual recommendation with restriction diets is to overdo it in the beginning - ie. be the strictest possible. This allows (forces?) the body/system to adapt/acclimate to the absense of potential allergens. Once the body has healed (or restored a more natual functional equilibrium/state without the allergens), you can try re-introducing things slowly to see how your system tolerates it.

That said, I would encourage you to try as much of the diet as you feel comfortable with and see what happens. Keep a journal/diary of what your doing diet-wise and how you are doing with seizure activity and track the (any) changes.

[RobinN]

I don't know if you have a Whole Foods in your area. When I decided to go this route with my daughter, I wanted to do it all. I wanted the seizures to stop, and I knew it could take 8 months for the glutent to clear from her system. I realized I wasn't going to be perfect from the get-go. But we jumped in anyways. Instead of looking at what she "couldn't" eat, I decided to have her look at what she "could" eat. This made it a lot easier. I had snacks of what was safe, and occasionally I made a mistake, but we slowly moved toward health. The preservatives are a must to eliminate, but the others have been truly important to also eliminate. Go live in the produce section of your grocery store for a year. Or enjoy a Farmer's Market each week. It does get easier over time. There are some wonderful products on the market ,that will help your transition.

Take a deep breath, and realize that you won't be perfect at first, but grow into the new choices over time.

[mitsybitsy]

Thanks very much for the responses, I appreciate it. I will definately keep a diary, but the thing is that I really don't have any seizures right now. the only thing I really get is a funny feeling in my left arm, at least ever since I had my last surgery. I would like to do this because I want to get off my meds somehow, my dr thinks my arm thing is somehow seizure related, and won't take me off any meds. I am 28 and married and I want to start a family soon but I can't do that until I get off at least some of these meds. To be honest I believe I am over medicated but my dr. won't budge. So I feel if I work on my diet then when I come off the meds maybe that will be maybe more helpful to keep them away. Well, thanks again.

[Bernard]

Well, you might find the LGIT diet (or a variation thereof) to be easier than the GARD. My wife is on a pseudo-LGIT diet (she doesn't restrict total carbs per the protocol - only simple carbs) and it has helped in her case. Here's some other ideas: Proactive Prescription for Epilepsy

[RobinN]

My daughters odd sensation in her limbs were all due to medication. We also were told that this was seizure related, but once the med was out of her system the symptoms ceased. So they might have been neurological, but that was brought on by the drug IMO.