What diets have you tried (>1 month) for seizure control?

[Pluto]

Like I said, I try REALLY hard to avoid processed foods. I def avoid anything that blatently has MSG in the ingredient listing (or glutamate). I don't use broth unless I make it myself or RARELY by the organic kind. I always do my best to read labels and I do consider myself fairly educated in this area.
I guess the point I was making in my earlier post was that no one is perfect and I occasionally do crave a hamburger and french fries. I think it is ok to indulge once in awhile and have that. Also, my birthday is coming up and even though my cake will be organic......I will go eat sushi! And I will enjoy it.

[Tate]

i havnt tried any specific diet....
I do take magnesium and vit b complex
Which has infeact helped..
especially reducing my headaches which in my case can and often do lead to a seizure and they help with the brain fogginess from my meds...
I also havnt managed to give it coffee up i have to have something indulgant in my life though I no longer drink it from about 4pm on wards. i also have given up smoking and I feel together with stopping smoking and the coffee intacke at night has helped as they both stimulate the brain....

on one of my hospital week long video EEG monitoring sessions they gave me about 6 cups of coffee to try to get one my seizure out of me on the last day..... and what do u know it deffinatly did

[Pluto]

Tate,
I feel your love for coffee! Especially in the morning or cold weather. I do try and drink hot tea after my morning cuppa (or two)! But I do understand how it can be a nice treat.
Just out of curiosity, how often are you having seizures (if you don't mind me asking).
-j

[TeeTees]

Tate,

In relation to your caffeine intake - I gave up coffee back at the beginning off the year, and to be honest I still continued having seizures, so it really didn't help me. So, I went back on it again around May time. I certainly feel as though I need it too in the mornings - especially on work days, and as it's a good stimulant for the brain, and has been proven to reduce the risk of Parkinson's, it really can't be THAT bad a thing can it ?

Everything in moderation I believe.

Regards,

TeeTees

[Tate]

Hi Pluto & Tees

i have partials, complex partials and auras almost daily.... i can go for a few days with out any.... and around a f/nite with no partials...
though i havnt gone moer then 4 days completly clear...
I have t/c seizures between 2wks longest in the last 2 years is 8 weeks.... that was kool...
i am having surgery on the 12th and 19th Nov.. not long now....

In regards to coffee in take to tees and pluto
i havnt given up coffee 9 no sir ree... i dont want everyone to see me with absolutly no caffine that could be rather scary.. he he) i just dont drink it into the evening anymore i try not to have it past 4pm and if i do wont have it after about 7pm... ( as i do tend to be a bit of a night owl now that I dont have to get up for work...and yes still have reg good sleeping pattern)

i have found not having it in the evenings to make a difference with my night time auras i havnt been able to tell just yet if my seizures are reduced by not having it as i havnt stopped in the evenings all that long ago...
The reason for the evening exclusion was 90% of my t/c seizures are in the evening and i have a distinct aura that upsets me in the evening and when trying to get to sleep and they have eased.. ( oh yay oh yay) and i will try anything for that to stay that way

[Bee91]

I went (somewhat) gluten free (about 90% gluten free) I suck at reading labels... But even limiting the amount of gluten I noticed a bit of a difference....I think I went 13 days with no big seizures....just little ones...I'm thinking about trying this diet again except actually going 100% gluten free and see how that works...

[Dutch mom]

The story of my keto kid is on the homepage of matthewsfriends.com - 'stories'- fifth in row from the top.

[RobinN]

I went (somewhat) gluten free (about 90% gluten free) I suck at reading labels... But even limiting the amount of gluten I noticed a bit of a difference....I think I went 13 days with no big seizures....just little ones...I'm thinking about trying this diet again except actually going 100% gluten free and see how that works...

Dogtor J says that it is his experience that if you are still having seizures, you need to re-examine your diet

On these dietary restrictions, I just want to make one thing very clear. We are restricting the level of glutamate and aspartate in the diet because the neurons of the brain (and their associated supportive cells called glial cells, or astrocytes) are diseased and cannot handle the high levels of this non-essential, neurostimulating amino acid in our typical diet. By eating what has become the Standard American Diet (S.A.D.), we are absolutely bombarding our brain with these “excitotoxins” in the form of grains, dairy, soy, and the rest.

But, it is the fact that the brain is unhealthy that explains why we are seeing the syndromes such as epilepsy, ADHD, insomnia, fibromyalgia, and various neurodegenerative diseases. I need to reemphasize this point for a number of reasons but mainly to establish why a person would develop one of these conditions and another not while eating the same foods. There must be something that distinguishes that person from the other…and there is…there always is. These things are covered elsewhere on the Website, but this might be a good time to check out my newest section, Viruses-Friend or Foe?

Here’s the point: When we are in the throws of one of the excitotoxin-related disorders, we need to reduce our consumption of the foods rich in these amino acids as much as possible. Doing so places a big Band-Aid on the situation and yields notable and often remarkable results in a short period of time. Dogs have stopped seizing in 24 hours. I felt noticeably better in four days. My fibromyalgia was improved in less than a week and gone in a month.

The phenomenal thing is that the long-term recovery also comes from the same diet. The principle reason this disease-producing cycle was set into motion to begin with was the damage effects of the “big 4” (gluten, casein, soy, and corn) on the intestinal villi and their ability to absorb vital nutrients. This combined with the showering of the body with exctotoxins, allergens, lectins, estrogens, and other substances from these same foods sets us up for the disease states that follow. Once the immune system starts to suffer from the same process, we are pretty much done.

The good news (yes, there is some good news) is that once we are off the “big 4” long enough, the process does reverse. Imagine the benefits of your body properly absorbing the calcium, iron, iodine, B complex, vitamin C, and trace minerals it so desperately needs. Imagine a brain, liver, and entire body that is getting what it needs to repair and thrive and in an environment free of the top four human, dog, and cat food allergens (cow milk, wheat, soy, and corn), which are also providing major quantities of allergens, damaging lectins, estrogens, depressants (casomorphins/gliadomorphins), and excitotoxins. Do you think you might just start feeling better??? (Smile)
***

http://dogtorj.tripod.com/id31.html

[keyna]

I have an 11 year old boy who is a very very picky eater, the thought of trying to do a diet sends my body full of massive amounts of stress. I eat organic foods, but that's about the best I can do.

[alivenwell]

Does anybody feel unusually cold (chilly hands are my symptoms) with epilepsy? Could this be caused by a vitamin deficiency or possibly anemia? It's winter right now, so obviously it's a common thing for most people with or without epilepsy. I find that when I do a long walk, I start to warm up during the walk.
I'm curious if medications or a deficiency could be causing this.

[Bernard]

That could be indicative of a circulatory problem.

[alivenwell]

That's something I wondered about as well. I frequently wear several layers of clothing, especially at work. Other people there have invested in space heaters (a taboo thing). Those without the space heaters are wearing heavy sweaters (or even jackets). We sit around at our desks and I also suspect the inactivity contributes to the chilly feeling. After work, when I walk my dog in 20 degree weather, I really need the layers of clothing out there. Once we go for at least a half hour at a brisk pace, I start to warm up. I try to breathe through my nose, not my mouth. And, I always wear one of those extra warm 'Hot Headz' hats, really thick gloves, at least 3 layers of clothing and a pair of outdoor tracking boots with tread. I try to warm up before going outdoors so that it takes a while for the cold air to penetrate my clothing.
At bedtime, I really feel cold, especially after I wash my hands. It's probably both the coolness of night time combined with inactivity. I may start to use one of those thermal bags that can be microwaved and take it to bed with me.

[angel]

i get really cold mostly while on high dose of some meds i was sleeping in my coat i was so cold.... im cold right now but not as bad as it was while taking the med the neurologist has lowered....

so im thinking some e meds cause us to be cold...

love
angel

[RobinN]

I think when your body is sick and the immune system kicks in, we can indeed have changes in body temperatures.

Hope you feel better soon Angel

[angel]

Im actually feeling awesome really good since cutting the other med... tomorrow no more of that one..... I get to stop it completely!!! im not sure what effects going from 500mg to none will have but i dont care at this point... ive upped carbamazepine (tegretol) (+ take klonopin)to what the doctor wants me on.. so im sure it will be just fine..

love
angel

[jjb]

We are doing the Low Glycemic Index Treatment NOT the Low Glycemic Index Diet. There is quite a difference.

LGIT has been wonderful for my daugher Ava.
The seizures are fairly well controlled ... have gone from having two or more status episodes a month and lots of subclinical gook ... to tiny simple partial seizures once or twice a month. ... with the occasional SE.
We were able to go off meds. We use Ativan as needed.
My daughter is now doing great dev wise.

[jjb]

Does anybody feel unusually cold (chilly hands are my symptoms) with epilepsy?

Could be autonomic symptoms too.
Look up autonomic dysfunction & cold hands.

[jjb]

When I eat any, I have to be very careful about how much and what kind. If I have two bites of something (last night's cake and pudding), I'm satisfied.

What kind of sugars do you do?
Have you tried Agave or Stevia?

This is all I use for Ava now. I don't like the taste of Stevia, but Ava does. I love the Agave though.

[skillefer]

Let's see...I don't necessarily eat a particular diet to control seizures. With a hubby who is a picky eater, not very likely. However, we only eat out once a month at a restaurant, and I only eat the school cafeteria food maybe 4 times a month. Also, I don't keep any premade foods in the house. Personally, I think the Standard American Diet is causing obesity and other health problems. As for coffee, what can I say.... I love it. I used to drink 9 cups a day...and that was all by 7 PM. Now, I just drink 1 cup in the morning. And about 3-4 cups of decaf. Getting me to quit coffee entirely is not too likely to happen. As for smoking, well, let's just say that the last time I tried to quit, my hubby bought me a pack after about 28 hours, packed it down, and lit the cigarrette for me. He couldn't take me anymore. But I have cut back. Now I'm down to a 1/2 pack a day. Which, considering I was smoking 2 packs a day, is pretty good.

[alivenwell]

Skillefer, I'll place a bet with you. If I quit chocolate before you quit smoking, I win. If you quit smoking before I quit chocolate, you win.
This one will be a major challenge. I especially love those 60 calorie Hershey dark chocolate sticks (the look just like brown cigarettes!).
I know that when I cut back on Diet Coke, I lost 10 pounds. Go figure. I would have thought that low sugar stuff would keep weight off and I had to wear a belt with my jeans.
To make this easy, we'll have to keep an honest record on here of how many 'splurges' we have of our own devices. I had 4 sticks of chocolate this afternoon. That means you'll have to only smoke 4 cigarettes to make it even.
Are you up for the challenge!?

Imagine yourself with one lung. I know somebody like that. He still smokes. I realize it's really addictive. I also read that cigarette producers have increased nicotene to make their stuff more addictive.