New to forum...have a few questions...

[Joyful]

Hi, everyone. My name is Joy and I have been living with epilepsy since the age of 9 (am now 44). I was wondering if anyone has had success with the paleo diet for help in controling seizures. Mine occur at least twice a month. I really want to get off of all of these meds.
Also, I recently found out that my aunt, who suffers from migraines, experiences auras just before her migraines. Could there be a genetic link there ? No history of epilepsy in my family - never knew how I got it.
Any info on either of these topics would be appreciated. Feel free to ask me questions, too!

 

[masterjen]

Hi, Joy and welcome to CWE!
Both my maternal grandmothers suffered from migraines, although there is no history of other neurological problems including epilepsy. I have several neurological based issue including seizures and atypical hemiplegic migraines. In my case there has been determined to be a "probable" genetic link based on genetic testing.
Having said that, though, many cases of epilepsy are idiopathic, that is, no known cause.
Good luck to you, and let us know how you make out with the diet!

 

[AlohaBird]

Hi Joy,

Welcome to paleo and CWE!

I've been paleo since 1/1/09 after a bout with breast cancer forced me to take a hard look at my diet/lifestyle factors. The more I researched the cancer angle, the more I found overlapping information that what was beneficial for preventing cancer recurrence was also good for me neurologically.

Just recently I've decided to go for the full "hard ass" paleo and cut out the dairy. I had been doing the Primal version of paleo (basically the brand name of Mark Sisson of Mark's Daily Apple website) but Primal leaves dairy as a decide-for-yourself issue based on if you have lactose problems or not. Then I read the work of Dr. John Symes (website dogtorj.com) who posts here sometimes. He says that it is not about the lactose but rather the glutamate contained in the casein protein in cow dairy that is the problem neurologically.

I recommend the Whole9 website and their companion book "It Starts With Food" and cookbook called "Well Fed" for serious paleo.

 

[AllShookUp]

Hi Joy. I'm not an expert and am really just searching for answers myself but my Neurologist said something very interesting I thought I'd share. When I asked what the next step would be if the EEG came back normal he replied that we could trial a medication that helps seizures and migraines as I have a history of headaches. In speaking with my pcp, he said yes, Gabapentin can help both as well as restless leg syndrome (which I don't think I have, muscle fasciculations only).
So a medication used for both does not prove they are connected but very interesting none the less.
By the way, no history of epilepsy in my family either, I'm the lucky one to get it as a child. Supposedly outgrew it, now looking at a re-occurence at age 53.

 

[Joyful]

A big thanks to everyone. I was really just kinda' curious about the whole migraine/epilepsy related thing b/c I was so surprised when my aunt said that she gets auras before her migraines. (I had thought that only happened w/seizures)

My main focus right now is sticking w/ this paleo diet to get off of these medications. (if possible) Thanks again. It is so good to talk with others who have epilepsy. Never really felt comfortable abt. talking about it before.

 

[Cint]

I was really just kinda' curious about the whole migraine/epilepsy related thing b/c I was so surprised when my aunt said that she gets auras before her migraines. (I had thought that only happened w/seizures)

I also get migraines and often have auras that consist of colorful squiggly lines right before the headache. (I also get auras before my seizures, but they are totally different). As with epilepsy and auras, there are different types of migraines. Some folks get auras, some don't.

Read about the anatomy of a migraine:
http://headaches.about.com/cs/headp...1a8e037d-dce9-490e-9222-cfbbe240f321-0-ab_mse

And there could be a genetic link between migraines and seizures. Check this out:
http://www.epilepsy.com/article/2013/2/migraine-and-epilepsy

The investigators found that the prevalence of a history of migraine with aura, but not migraine without aura, was increased in patients who had two or more additional affected first degree relatives. This connection supports the hypothesis that there is some type of genetic relationship between patients who have epilepsy and patients with migraine with auras.

 

[Joyful]

Thanks again for this info! This explains so much. I have been seeing a natropath dr. who found mercury in me and helped me to detox from it. We were hoping that once I was detoxed, I'd be seizure free. No such luck.
There are no more metals/toxins in my system, I am eating healthy(paleo) but continue to have seizures a couple times a month(sometimes more). So, now I see that if it is truly genetic - and I believe it is now, then I can stop trying to find some explaination or cause and just accept it.
I'm still going w/ the paleo, though!
Thank you! Oh,and sorry, I about the name mix-up earlier. Now I see it's Cint, not Clint. Ooops, my bad! (as the kids say!)

 

[Cint]

Thank you! Oh,and sorry, I about the name mix-up earlier. Now I see it's Cint, not Clint. Ooops, my bad! (as the kids say!)

Your welcome. And you're forgiven. Not many see the mistake, so thanks.

 

[AlohaBird]

Thanks again for this info! This explains so much. I have been seeing a natropath dr. who found mercury in me and helped me to detox from it. We were hoping that once I was detoxed, I'd be seizure free. No such luck.
There are no more metals/toxins in my system, I am eating healthy(paleo) but continue to have seizures a couple times a month(sometimes more). So, now I see that if it is truly genetic - and I believe it is now, then I can stop trying to find some explaination or cause and just accept it.
I'm still going w/ the paleo, though!

I'm glad you are staying with the paleo. It's not just about "detoxing" some particular substance. It's a whole metabolic paradigm shift. Depending on how far into the unhealthy eating habits you were pre-paleo, it can take a while for that to be fully accomplished. While I'm not saying that genetics can not play a role in predisposing our brains to something, a predisposition is not fate. Our genetic expression (look up the term epigenetics) how the genetic hand we are dealt plays out, is a product of our environment and our choices. Don't give up hope.

 

[Joyful]

I wasn't eating too unhealthy before, but I did have the occaisional fast-food. Alot of processed meals - you know, open a box or bag of something - stick it in the microwave...okay, yeah..my eating habits were pretty bad! Oh, and chocolate! I do miss that!
Anyway, I'm really enjoying the paleo. I've also eliminated all sugar and caffine.

Forgive my ignorance here, but I'm not too sure I understand..."metabolic paradigm shift" ? I'll look it all up, thanks. Oh, and don't worry, I won't give up hope - that's what keeps me going!
Oh, btw, I've been doing alot of research and came upon something that defined an epileptic aura as a petit seizure. Never knew that, Ialways considered it a warning sign!

Eating healthy - the only way to go!

 

[AlohaBird]

The paradigm shift I'm talking about is from being someone whose body only knows how to burn glucose for fuel to being someone who can switch back and forth effortlessly from glucose to fat.

Google "The Fat Burning Beast" on the Mark's Daily Apple website.

When we eat too many microwave lasagnas etc our metabolism gets stuck in glucose mode and can't switch out easily. How do you know if this is you? Do you get shaky or headaches if you go more than three hours without food?

That's great that you have gotten off the sugar and caffeine too. Those both keep you on an insulin roller coaster ride of highs and crashes. Paleo food helps keep your insulin on an even keel. I know many people on the MDA forum who have been completely cured of diabetes even after doctors had told them it was something they would just have to live with (and keep taking the pills) forever. Not just talking about managing diabetic symptoms here. Completely cured.

 

[Cint]

I know many people on the MDA forum who have been completely cured of diabetes even after doctors had told them it was something they would just have to live with (and keep taking the pills) forever. Not just talking about managing diabetic symptoms here. Completely cured.

That would be folks with Type 2 diabetes, not Type 1 diabetes. Folks with Type 2 diabetes can "cure" themselves by changing their diet and watching their carbs, exercising and watching their weight.

Oh, btw, I've been doing alot of research and came upon something that defined an epileptic aura as a petit seizure. Never knew that, Ialways considered it a warning sign!

Auras are simple partial seizures. Check this out for more info about types of seizures: http://www.epilepsy.com/learn/types-seizures
And chocolate can bring on migraines for some, so good you gave that up.

 

[AlohaBird]

Right. I was talking about type 2. But a lot of doctors still think that it is a lifelong condition once you have it unfortunately. They just hand people some Metaformin and often don't really explore the dietary option.
I cured my Dad's diabetes with paleo food. And not just "cured" in quotes. It was cured as in the docs couldn't find any evidence that he had ever had it.

 

[Joyful]

Hi, everyone. Sunday I had seizures for the first time since starting paleo. (abt. a week & 1/2 of being paleo) Anyway, I thought I had just had some small ones, and then fell asleep. When I awoke, however my body felt "heavy" . (don't know if anyone out there feels that way after a grand mal-I do)
So I asked my husband and he told me that I had had a grand mal. First one in a month, and the one a month ago was the first in months!

So, I thought I'd share with you all about the way I'm following my diet - maybe I'm doing something wrong.
Basicly I just quit eating all grains, legumes, dairy, sugar, all processed foods. I've been eating only Meats - pork, beef, chicken etc. and fresh vegetables - carrots, beets, beet greens, spinach, & salads. I snack on pumpkin seeds, sunflower seeds & chia seeds(like a trail mix)
I drink water w/ lemon during meals but also drink Dandilion tea (Dandy Blend from VitaCost) w/ cocconut milk, no sugar. However, I checked the ingredients on the carton and it does contain sugar (SILK brand cocconut milk) I had thought I was doing right.
Yesterday morning I had a cup of it - no water, just heated up the C.M. and added the Dandilion blend.

Could that be the reason I went into a grand mal ? I thought paleo was supposed to cure this.

Not losing hope... losing patience!

 

[masterjen]

Carbohydrates is the body's main source of fuel if you are physically active, and if this is you then just the meat and veggies may not be providing enough fuel for your muscles. Since the brain needs a certain amount of glucose to function properly, it could be that the amount of glucose you are consuming in your current diet is not sufficient for both muscle function and brain function. http://www.ncbi.nlm.nih.gov/books/NBK22436/

 

[George__]

As long as I keep mildly active with lifting and cardio I can drink and eat without getting big obese fat....

But if I kick lifting and cardio I get obese

 

[Cint]

Could that be the reason I went into a grand mal ? I thought paleo was supposed to cure this.

Not losing hope... losing patience!

The paleo diet is not going to be a cure-all diet for seizures. But then, neither are the AEDs. As long as one has E, one needs to learn to have patience as well. And as masterjen said, carbs are the main source of fuel for the body, and if not getting enough, your glucose could be off somewhat, therefore causing your body/brain dysfunction.

 

[Joyful]

Thanks eveyone. I am definitely getting my carbs - plenty! I eat the "good" carbs. nothing processed. Fresh fruits and veggies are my main source of carbs.
I cook my veggies in cocconut oil,olive oil, or bacon grease - never corn oil or butter. I usually oven roast or saute' them.

I realize I need to be patient, and I know paleo is not a cure. I was just dissappointed.

As far as excercise goes - unfortunately, not much. I am a housewife if you consider housework exercise !

 

[AlohaBird]

a week & 1/2 of being paleo) First one in a month, and the one a month ago was the first in months!
I snack on pumpkin seeds, sunflower seeds & chia seeds(like a trail mix)
However, I checked the ingredients on the carton and it does contain sugar (SILK brand cocconut milk) I had thought I was doing right.

Could that be the reason I went into a grand mal ? I thought paleo was supposed to cure this.

Not losing hope... losing patience!

This is the problem. Yes, it does work. No, it is not a quick fix. It took you a whole lot longer than a week and a half to do damage to your body. It is going to take longer than a week and a half to fix it.

Yes, you are at the "fine tuning" phase right now where you find those sneaky sugars hidden in things (I found that Lowreys garlic salt has sugar in it!). That's good. You just have to be "that person" at the grocery store who stands there in the aisle reading the full ingredients list. And you need to check the ingredients list of everything in your pantry, not just for sugar but for glutamate in all its forms, MSG, "hydrolyzed vegetable protein", "natural flavorings", etc. It's amazing what is there. I found stuff I wouldn't want to eat in spices, spice, blend, sauces, soup stocks, anything canned like diced tomatoes.

Another thing you might want to fine tune is to go easy on the nuts and seeds for a while. They are high in glutamate too. After you have done some healing these can be brought back in.

 

[Joyful]

AlohaBird, thanks a bunch for the info. I have not been following a meal plan or schedule of any kind yet. I have just ordered the books "Practical Paleo" and "Grain Brain" from amazon. Until they come in, I really don't have a routine - like I said, I have just eliminated certain foods from my diet.
Thanks also about the reminder to check the ingredients - the bacon I bought contains sugar as well! I thought I was doing good - it said "Pure, uncured" bacon.

As for the meats, none of it is grass-fed. I guess that can make a difference. The only problem is - we can't afford it.
My husband has been so great through all of this, but the price for grass-fed was almost double !
So, is it okay to eat grain-fed meats ?