New Member, partial complex, annatto

[DHMary]

My wife has partial complex siezures. Currently on zonigran (sp), and vimpat with no good control. After 3 decades of no control and lo progress we are together working on eliminating the siezures.

Currently 5 to 10 per month.
Sometimes like in Feb only 1 siezure but we don't know why.

Recently we started exercizing (walking together) and are exploring the Ketogenic diet.

My hot question for the day is what is being discovered and experienced regarding annatto and the bixen it contains as a trigger for seizures.

My wife has allergies: Egg, nuts, peanuts. Currently no dairy or processed sugars in her diet.

DHMary

 

[Ruth]

Hi, welcome to CWE.

What is annatto and bixen?

Peanuts is a really bad allergy.

I am on the Glycemic Index Diet for my seizures.

This forum was made by Bernard, out of love for his wife Stacy. That love permeates throughout the whole forum.

 

[DHMary]

Annatto natural food coloring and spice of South America. Find it in candy, yellow cheese, ice creams, Taco Bell meat, Earth Balance margarine

Bixin is what the pigment is made of 80%.

DHMary


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[N Sperlo]

Hi DHMary.

Is "Bixin" also known as "bixaceae"? It looks similar to annatto, or are they the same? I know the world of natural substances for food is expanding and there are a lot of things being researched. Is there a reason you are asking specifically about bixin and annatto?

 

[Ruth]

I asked about it because I did not know what they were.

Thank you very much for the info, DHMary.

 

[DHMary]

I asked because of apparent correlation of her seizures with consumption of annatto. We are investigating. Not likely but there is a reason one month one seizure next month 8?

DHMary



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[N Sperlo]

How do you keep track of that? I'm just curious.

I remember there were a bunch of claims that Red 40 made kids hyper. I could never figure it out. Not trying to threadjack you.

 

[DHMary]

The idea for checking is asking the question "what is distinctive about timing of seizures" Taco Bell eating, butterscotch candies, earth balance margin? One thing is annatto.
To test we will do on off testing for allergic reaction. Then will include crushed annatto seed in partial factorial experiment as we try to build a diet that will work with current drugs. Eventually will also track efficacy of those drugs in a similar manner.

We have an exciting seizure history. Running into the ocean. Hedge trimmer to the face. Driving the lawn mower across the road. Proclamations during solemn church service. Opening the van door attempting to get out while we were doing 70 on a crowded freeway bridge.

The normal ways of getting to a solution just are not working. So we will get scientific and sacrifice some and risk some and will know we have tried our very best with what we had. Too many years just getting no where and suffering.

We are content yet motivated.

DHMary



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[N Sperlo]

Well, I certainly wish you the best of luck in your research. There is just so much to look into with such detail. I look forward to hearing about the proclamations in the future, though.

 

[DHMary]

Thank you!


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[Cint]

The idea for checking is asking the question "what is distinctive about timing of seizures"

That is an important question. Has she considered hormonal changes could cause seizures for some women and maybe a visit to a hormonal dr. would benefit.

http://www.epilepsy.com/learn/triggers-seizures/menstruation

What causes seizures to be seen during hormonal changes with menses?

The hormonal changes during the menstrual cycle are the most likely cause of changes in seizure frequency. The brain contains many nerve cells that are directly affected by estrogen and progesterone, the main sex hormones in women. Studies in animals have shown that high doses of estrogen can cause or worsen seizures. Yet progesterone can protect against seizures. It’s thought that seizures may occur in women with epilepsy because they don’t have enough progesterone at certain times of their cycle or there’s an imbalance between estrogen and progesterone. Other hormones are being looked at as possible triggers of seizures during menses and at times of other hormonal changes in women.

Or maybe it could be low blood sugar causing the seizures. I have Type 1 Diabetes and carefully watch my diet, mainly carbs, and get plenty of exercise. If my glucose level drops too low, I could go into seizure.

I thought the Keto diet was mainly for kids. onder:

 

[DHMary]

Yes to hormones. Stopped at puberty. Started 10m after 3rd child. It's on our list even though menopause 12 yrs or so. (Came early) While pregnant she felt better and somewhat fewer seizures.

She has mild reactive hypoglycemic - drop sugar 168 to 68 in 30 min.

John Hopkins Philly said Keto works decent for adults with two cautions. Blood lipids go up must monitor, and parents have trouble with self discipline. Self control. Last attempt at Keto she got scared and baled out! She just finished a meal of sunflower seeds, margarine, pork apple lettuce and spinach. Lots of margarine and is pleased to be testing .

DHMary


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[Nakamova]

Hi DHMary,

I hope the annatto isn't a seizure trigger for your wife -- it's a good source of tocotrienols, which seem to have brain-protective and other health benefits. Is your wife at all sensitive to MSG and/or soy? They're both found in Taco Bell foods (though not in butterscotches or margarine as far as I know). Keep us posted on how well your wife does on the keto diet and if it makes a difference.

 

[Ruth]

When I was going through hormonal changes until I was late into my 50's, my seizures always increased during my monthly period. My seizures have decreased severely since I no longer have that problem.

I have type 2 Diabetes and that can cause seizures. Since I was diagnosed with Diabetes, I no longer have status seizures. My seizures can increase when I do not test my BG regualry and stick to my diet.

DHMary, what age group are you going to test?

Keep us updated.

 

[Tez_20]

Hello Cint,
You've got a good point regarding hormonal changes as my seizures used to hit me a lot heavier around my monthly's...I'm just pleased those have been stopped now to help in many reasons :clap: besides my seizures.

 

[DHMary]

Wife is 55 so we start there for age. So far in our pre-testing 4 seizures. All four during or just after vigorous walk. Nice to have at leAst something the same everytime, even though rate is not significantly less. With Keto diet, vimpat, zonigran what about electrolytes? Any one here experience or know about lo sodium seizures?





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[Ruth]

I like your name, DHMary, Darling Husband Mary. I call my husband DH, too.It shows how much you love her.

Are you talking about too much sodium? There is a lot of sodium in the foods we eat. I do not put extra salt on the food we eat. We do not add extra salt to the food we are eating. That is because there is plenty of salt in the foods that we buy. Ask your doctor to be tested for sodium to see if you are getting too low, too high or just the right amount of sodium.

I only take electrolytes when I am vomiting, or are having diahrrea. I take Pedialyte, over the counter. I only take less than a fourth of a cup. You do not need much. It says that it is for children, but it works for adults, too.

 

[DHMary]

While stranded in Cinncinatti on flight delay checked out zonigran and Keto diet. Bad mix. Tomorrow we cut back on ketones and on zonigran. Each of past four seizures during exercise (daily walk) each same time of day. I was asking about sodium because thought her lectrolytes out could be a cause. If I went to pedialite we would lose ketosis and reduced acidosis at he same time. Definitely learning! She forgave me for not checking for drug interactions with Keto. Any thoughts?


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[Ruth]

Pedialyte is an over the counter brand name for electrolytes. It is just electrolytes. It stops my vomiting and diarheea. That means that Mary cannot have any electrolytes. I am just talking about 1/4th cup or less.

Mary will not need it every day. Only once in a while.

Is the doctor cutting back on Ketones and zonigran? If not, you should ask the doctor.

Since you are worried about Sodium, look at processed foods. They usually have a lot of sodium. You can also go to Calorie King to find out how much sodium is in fruits and vegetables.

Mary is having seizures during daily walks. How long are her walks? Maybe you can break them up to a half hour walk a day.

Those are my thoughts, I hope they help.

 

[DHMary]

Thank you so much.
Dr wants to increase zonigran by 33% just see if what has not not helped at all may work if it is increased. Does this with each med ti ll it's maxed out then onto a new med. we probably need a better dr, but each has had their faults

We walked leveler and cooler today. And drank during the walk. Started lime lemon baking soda drink 5 Times today. Yet ketosis remains strong. One less zonigran tonight until we get ph strips in and know she is not in serious metabolic acidosis or neAr it

The walks were supposed to be like a mild stress test. Then figure out why several days no seizures. Most recently 3 seizures on consecutive days each within 50 ft of each other about a mile into the walk

Today no seizure but there is some water retention, like she used to get when pregnant in the summer.

Again thank you!

DHMary





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