Dietary changes and seizure control

How much coconut oil do you take every day?

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This is Dr. Perlmutter's latest post about an interventional study showing that probiotics do indeed have an impact on mood. I found it interesting that it was conducted on people who did not have any sort of mood issues. If such issues can be *created* by such an interventional study, then that raises the real possibility that intervention could turn the problem around the other way. Fascinating stuff.

http://www.drperlmutter.com/probiot...-99189329&mc_cid=5dca727a48&mc_eid=7e5258054e
 
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Bernard said:
Zoe used to talk a lot about Homocysteine years ago:

http://www.coping-with-epilepsy.com...lepsy-tied-nutritional-deficits-944/#post9215

http://www.coping-with-epilepsy.com/forums/f22/vitamin-b12-1766/#post13691

http://www.coping-with-epilepsy.com...ntally-disabled-aeds-bbc-story-1322/#post9794 (this one by RobinN)
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She has a lot of interesting threads. Any idea what became of her? I tried contacting her from her blog but the link was dead.
It seems that she was posting about stuff that is coming around to being more mainstream. Just a little ahead of her time.
 
fish oil

I know I've shared in these forums (and probably in this thread) about Jon's positive experience with fish oil. Just came across this small study at UCLA published several months ago. A low dose (1080 mg daily) brought about 34% seizure reduction and 25% of the patients on the low dose had their seizures cut in half (this was pretty much Jon's response to fish oil), and also experienced a modest reduction in blood pressure. The higher dose of fish oil (2160) did not have a beneficial effect.

http://www.dhaomega3.org/Nervous-Sy...ociated-with-a-Reduction-in-Seizure-Frequency

Here are some older studies on fish oil and seizures
http://www.dhaomega3.org/Nervous-System/Epilepsy-and-Omega-3-Fatty-Acids
 
I take two 1250mg capsules of krill oil daily. From some things I've read, (citations long lost), I chose krill over fish oil because, depending on where the fish are harvested and how they are processed some fish oil supps can end up being concentrated mercury supplements.
The krill are harvested from the arctic where human haven't yet gotten around to polluting things as badly.
 
Just read the article Karen put up. That is interesting about the dosing. They had three groups, no fish oil, low (1080mg), and high (2160). The zero fish oil and the high fish oil had the same results. Only the middle one was effective. Perhaps this is the "goldilocks" spot.
In the article they were saying that the lower dose is still way more than most americans get in a "normal" diet.
They also pointed out that the high dose could be taking the 03/06 balance too far toward 03. We think of 03 as the good one and 06 as the "bad" one but neither is really good or bad, it is about the balance. The typical american diet is way too high in 06. I have been thinking for a while that , since I eat a lot of fish and also all of my meat is grass fed, I may not need that much 03 supplementation.

I think I will switch to one capsule instead of two daily. Thanks Karen!
 
AlohaBird said:
I take two 1250mg capsules of krill oil daily. From some things I've read, (citations long lost), I chose krill over fish oil because, depending on where the fish are harvested and how they are processed some fish oil supps can end up being concentrated mercury supplements.
The krill are harvested from the arctic where human haven't yet gotten around to polluting things as badly.
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Most of the fish oils available on the market have negligible amounts of mercury (accdg to testing done by Harvard, etc.) -- the oil is extracted from fish like cod or sardines which don't accumulate as much mercury as fish higher on the food chain (Krill would obviously be pretty much at the bottom) (and thus fish lower on the food chain would be good choices to eat), and also most companies distill the oil to remove contaminants. We always buy the purified oils.

You're right about the dose -- one capsule (in most brands) is roughly equivalent to the "low dose" in the study that was more effective than either nothing or the higher dose. However, in the typical American diet, if we're not eating fatty fish several times a week OR taking a fish oil supplement, then we're not getting enough.

Just like with many supplements -- taking the proper amount is key. We considered raising Jon's fish oil a while back but didn't - -I think because it is a blood thinner and so was the Zonegran he was on. Zinc is another supplement that can be overloaded if not careful -- moderate amounts of zinc are very helpful for seizure control and also for immune system and gut issues, but too much can deplete copper stores in the body, leading to neurological symptoms. Always good to check the "upper tolerable limit" on any supplements and vitamins.
 
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The quality of supplements varies so much from brand to brand and it's hard to know who or what to trust especially online. I think that standardized testing has been added to most supps (the reputable ones anyway) to allay peoples concerns and it's a really good thing to look for. The articles I read about mercury contamination were from a while back. I wouldn't want to scare anybody away from taking fish oil, just look for one of the better brands.

Supps are one of those places where, IMO, it's often worth it to spend a bit more than the drugstore brand.

The other nice thing about krill is that it is (at least according to the literature of the people selling it) a very sustainable crop to harvest. Evidently krill multiply like bunnies and the larger predator fish that used to eat them are not as numerous as they once were.

In this case though if I am taking half the dose my (pretty pricey) krill oil will last twice as long. That's a good deal all around.
I'll see if there is any difference in seizure control by changing the dose.
 
AlohaBird said:
She has a lot of interesting threads. Any idea what became of her? I tried contacting her from her blog but the link was dead.
It seems that she was posting about stuff that is coming around to being more mainstream. Just a little ahead of her time.
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She has come and gone a few times over the years. Sometimes life gets in the way. Also, sometimes there wasn't a a group of people here interested in discussing these things at a level that kept her engaged.

Have you tried sending her a PM?
 
In experience with my dog, too much fish oil seemed to exacerbate seizure, maybe because her gut was so inflamed and fat malabsorption caused seizure (maybe similar in Celiac disease). So, in the wrong condition, you can have too much of a good thing.

What I find interesting about fish oil is how it lowers triglycerides (so does niacin, btw). And also how fish oil seems to block free fatty acids of microbial origin, even shifting flora in the right direction.

What's strange is how MCT oil is helpful, raising triglycerides. Still learning about the different types of triglycerides and how they affect free fatty acids which affect blood sugar levels.

What's fascinating is how fish oil is a triglyceride itself, but works to lower triglycerides in blood. My guess is because of the way it affects microbial free fatty acids, lowering triglyceride production in the liver. Microbes produce free fatty acids and also stimulate release of free fatty acids from host cells.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3563284/
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0020460
http://www.ncbi.nlm.nih.gov/pubmed/8139394/
http://repub.eur.nl/pub/54927/REPUB_54927_OA.pdf.
 
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Mammals biosynthesize the amino acid cysteine via homocysteine. Cystathionine β-synthase catalyses the condensation of homocysteine and serine to give cystathionine. This reaction uses pyridoxine (vitamin B6) as a cofactor.
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https://en.wikipedia.org/wiki/Homocysteine

L-DOPA to dopamine - a neurotransmitter
5-HTP to serotonin (5-HT) - a neurotransmitter
L-histidine to histamine - a neurotransmitter
phenylalanine to phenethylamine - trace amine neurotransmitter
L-tyrosine to tyramine - trace amine neurotransmitter
tryptophan to tryptamine - trace amine neurotransmitter
The enzyme uses pyridoxal phosphate, the active form of vitamin B6, as a cofactor.
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https://en.wikipedia.org/wiki/Aromatic_L-amino_acid_decarboxylase

Glutamate decarboxylase or glutamic acid decarboxylase (GAD) is an enzyme that catalyzes the decarboxylation of glutamate to GABA and CO2. GAD uses PLP as a cofactor.
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https://en.wikipedia.org/wiki/Glutamate_decarboxylase

I have read that Vitamin B6 deficiency (caused by poor diet, drug interference...etc.) is different from vitamin B6 dependency (caused by a genetic mutation(s)).

In patients with PDS, pyridoxine-deficiency is not present, and it is important to point out the distinction between pyridoxine-dependency and pyridoxine-deficiency to parents, therapists, teachers and others providing care to these patients.​
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Taken from page 3 of the following PDF:​
--------------------​
**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONSENT**​
 
The kids (all 3) and I do take fish oils to boost the benefits of the Omega 3 DHA & EPA in take. It's all aims to do generally the following benefits, depending on what literature and research is done.
1.Assist brain function
2. Promote learning
3. Healthy temperament and behaviour
4.Benefit eye health
5. Promote the nervous system.
 
I'm a little off topic but I'm querying whether anyone has had experiences in using Taurine?? I'm aware it's used as a suplplement for vegetarians but the nutritional Medical practioner has prescribed the liquefy Taurine to assist my Daughter with the other nutritional management.

I'm also using Pediodine Iodine drops for promoting healthy thyroid function.
Last year she had hypothyroid indicators (4.40) on her TSH levels, earlier this year her levels were back to normal @ 3.4 (TSH)
 
Keith said:
In experience with my dog, too much fish oil seemed to exacerbate seizure, maybe because her gut was so inflamed and fat malabsorption caused seizure (maybe similar in Celiac disease). So, in the wrong condition, you can have too much of a good thing.

What I find interesting about fish oil is how it lowers triglycerides (so does niacin, btw). And also how fish oil seems to block free fatty acids of microbial origin, even shifting flora in the right direction.

What's strange is how MCT oil is helpful, raising triglycerides. Still learning about the different types of triglycerides and how they affect free fatty acids which affect blood sugar levels.

What's fascinating is how fish oil is a triglyceride itself, but works to lower triglycerides in blood. My guess is because of the way it affects microbial free fatty acids, lowering triglyceride production in the liver. Microbes produce free fatty acids and also stimulate release of free fatty acids from host cells.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3563284/
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0020460
http://www.ncbi.nlm.nih.gov/pubmed/8139394/
http://repub.eur.nl/pub/54927/REPUB_54927_OA.pdf.
Click to expand...

Good info on the fish oil. There appears to be conflicting studies on whether MCT oil consumption will raise tryglyceride levels in humans. Cleveland Clinic says it will lower tyrglyceride levels, raise HDL, and also raise overall cholesterol levels, but mainly because of the rise in the good HDLs.
http://www.clevelandclinicwellness.com/Features/Pages/MediumChainTriglycerides.aspx#

However, both total cholesterol and tryglycerides rose in Jon to unhealthy levels when he was on 8 g of MCT oil per meal. I did find a study at that time that indicated that MCT could raise tryglyceride levels (which I can't seem to find now). So we reduced his MCT dose to 4 g/meal (also, his ketone levels were tending to be too high). And we reduced his diet ratio to 2.5:1 from 3.5:1 fat to carbs/protein. And we exchanged most of his dairy fats for healthy oils. And his doc added in carnitene, which somehow lowers cholesterol levels.

All of that worked to bring all the levels to where they should be, and they've remained excellent for about a year.
 
Blonde Angel said:
I'm a little off topic but I'm querying whether anyone has had experiences in using Taurine?? I'm aware it's used as a suplplement for vegetarians but the nutritional Medical practioner has prescribed the liquefy Taurine to assist my Daughter with the other nutritional management.

I'm also using Pediodine Iodine drops for promoting healthy thyroid function.
Last year she had hypothyroid indicators (4.40) on her TSH levels, earlier this year her levels were back to normal @ 3.4 (TSH)
Click to expand...

Jon's vitamin supplement contains 100 mg Taurine at his dose.
Taurine is neuroprotective (and has proven to be neuroregenerative in rodent studies), and improves hypothalamus function in the brain. It is a powerful antioxidant and has strong anti-inflammatory value. It blocks the excitotoxicity glutamate-induced pathway, and so is neuro-modulating (can reduce seizures). Taurine deficiency has been found in a number of central nervous system diseases, including epilepsy. However, the supplement form doesn't appear to cross the blood-brain barrier...hmmm...
http://www.ncbi.nlm.nih.gov/pubmed/26133737
http://www.ncbi.nlm.nih.gov/pubmed/23433181
http://www.ncbi.nlm.nih.gov/pubmed/24281261

ETA: Ok, based on this article, even though taurine apparently doesn't cross the blood-brain barrier, it helps suppress the vasopression hormone (which can cause low sodium levels, which can then deplete the brain of taurine and it's seizure modifying effects) and replenish astrocytes (which are involved in neuronal cell repair). Vasopression can be released due to gut inflammation, low blood sugar, and stress. According to this author, this might explain the salt-cravings in autistic kids.
http://www.ncbi.nlm.nih.gov/pubmed/21925797

ETA: And, this study, published a couple weeks ago, seems to indicate that vasopression levels are actually a bit low in autistic kids with social problems. http://www.medscape.com/viewarticle/848429
 
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I take my magnesium supplement in the form of Magnesium Taurate. I can't tell whether it works better than other mg supplements, but I feel that if the taurine provides any neuroprotective qualities, it's a welcome bonus.

What you've noted about taurine's effect on salt-craving is intriguing. It may be my imagination, but I seem to crave salt as a side effect of Lamictal. Maybe the taurine in my mg taurate supplement can help to offset this effect.
 
I will take note if my girl has the desire to chomp on salty stuff... Although she has generally liked savoury versus sweet stuff, even before the Taurine began.
The liquefy Taurine I can syringe, but I found the mixture very very sweet( the concoction was made by the pharmacist) I tried it myself it was like having a big sugar hit..didn't like that..was too sweet. :(....Now using the healthwise brand called L-Taurine in powdered grade, it's 100% pure pharmaceutical grade amino acid powder. I give her dose sprinkled onto her morning breaky cereal.
ATM
My girl is having approx 1 seizure a month, it's way better than few times a week.
Small steps... :)
Still think generally that wholesome healthy foods go a long way to general positive wellbeing.
 
I have learned that one can only try and be flexible and not underestimate the benefits of what Taurine could do.
The Doctor who I see who has studied nutritional medicine raves on about its benefits.

An interesting comment I've remembered from visits to the Dr that practises Nutritional Medicine is that he mentions that we generally crave foods that are generally not good for us.
 
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