Dietary changes and seizure control

How much coconut oil do you take every day?


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My sincere thanks to Dr Paolo Mainardi for his wonderful contributions. Research involves tremendous effort and submissions do have criteria for approval.
 

Bernard

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I was away from the computer all weekend. I'd like to ask everyone to remain calm and respectful.

I have a great respect for Dr. Mainardi and the work he is doing. He was very generous to join CWE and share with us a better understanding of the research that he was doing a few years ago. English is not his first language and I'm essentially ignorant with respect to biochemistry, but Dr. Mainardi still engaged me a bit when I asked a lot of questions trying to help me understand his work. I was particularly pleased to learn that Dr. Mainardi was in contact with Dr. Kossof (Johns Hopkins / diet research) and collaborating/vetting their research.

Epileric is a good person and is guided by a desire to protect the community from bad information and charlatans. Since CWE first started, we've had members periodically making some outrageous claims (like that one member that showed up every few months trying to tell everyone that Epsom Salts cured every form of epilepsy) and some measure of sobriety is warranted with respect to evaluating such claims and framing them in a context rooted in reality as best we can.

But Epileric is human too and sometimes, IMO, gets a bit too overzealous and loses the big picture. It's one thing to correct misinformation. We don't, however, want to stifle the exploration or discussion of ideas - especially when the discussion is framed as an exploration and not some marketing of a miracle cure. In this case Epileric, I think you went too far with your comments. It's possible to express your doubts or reservations without casting aspersions.

BTW, totally off topic, but Eric "earned" his "spaminator" title because of the work he does behind the scenes keeping a watch on new member registrations and identifying bad actors before they sully the forum with their trash.

~~~

...
He also claims:
Today, we know that ketones are not responsible for anticonvulsant action [4].
...
This has been known for a while now thanks to research on other alternative diets like the MAD and LGIT:

http://www.coping-with-epilepsy.com/index.php?p=modified-atkins-diet

IIRC, we also discussed this a bit with Dr. Mainardi in the Tryptophan thread.
 

epileric

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This has been known for a while now thanks to research on other alternative diets like the MAD and LGIT:

http://www.coping-with-epilepsy.com/index.php?p=modified-atkins-diet

IIRC, we also discussed this a bit with Dr. Mainardi in the Tryptophan thread.
Thanks Bernard, I'm still a bit skeptcial because I haven't seen any actual studies in peer reviewed journals showing how that's likely to be the case. I'm not saying there aren't any studies but if there are, I'd love to see them. If there's enough known I'd love to see how and why a specific neuropeptide might function in an anti-convulsant role. I think it'd be pretty cool if it did but as much as I'm hoping, I like to proceed cautiously.
 

masterjen

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The tryptophan/serotonin issue is a complex one in terms of how the body needs a certain form of tryptophan for the brain to be able to properly utilize it, and from there the brain breaks down or processes this form into the different chemical components in a step-wise fashion until it gets to the synaptic cleft where it is then released and the neuron fires. If researchers can figure out at what "level" this tryptophan processing goes awry (ie. not enough is produced) to cause a particular disorder, then supplements of that particular form of tryptophan can be made and used. Just going to the health food store and getting tryptophan in the hopes of treating some disorder is a shot in the dark unless you know exactly what form the tryptophan is and what form of tryptophan is needed for a particular disorder (assuming, of course, that there is significant evidence that any form of tryptophan can even work for that disorder).

Case in point: tryptophan has been shown to help with certain forms of dystonia. Not just any form, but the 5-HTP (5-hydroxytryptophan) type because it is the 5-HTP level of tryptophan processing in the brain that for some reason not enough is being made from the next higher up level of tryptophan processing. So, supplements of 5-HTP give a "boost" to that processing level in the brain to enable more normal firing of the neurons involved in motor control.

The other issue: I take medicinal grade 5-HTP that is specially formulated to ensure it crosses the blood-brain barrier and gets to where it is needed. Not to mention that the amount of 5-HTP is carefully controlled. None of this is the case with herbal supplements of 5-HTP or any other form of tryptophan. So far this medicinal grade 5-HTP is only available to research physicians such as geneticists and biochemical disease specialists unfortunately, at least in Canada.
 

Keith

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masterjen, that's good insight. What's gaining recognition is how gut microbiota degrade tryptophan and how this is associated with gut-brain issues including neurodegenerative diseases.

There's also interaction between good bacteria such as Lactobacillus and tryptophan which affects immune response to control fungi.
 

masterjen

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There's also interaction between good bacteria such as Lactobacillus and tryptophan which affects immune response to control fungi.
We know so little of how the various "good" bacteria interact with one another. Not to mention that we don't even know what all the bacteria in our bodies are. To randomly take a supplement of what seems to be a "good" bacterium is not such a good idea, since supplementing one could throw off the delicate balance of the other "good" bacteria, and perhaps even encourage more of the bad bacteria (or fungi) to flourish.
 

Zoe

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Keith,

Have you explored much about fermented foods and their role in maintaining and\or restoring good health, gut, brain, and otherwise? If you're interested, you may want to look into Sandor Katz and his writing. He is a long term AIDs survivor who used diet to restore his health.




Who Is Sandorkraut? | Wild Fermentation :: Wild Fermentation
www.wildfermentation.com/who-is-sandorkraut/‎Cached
SimilarMy name is Sandor Ellix Katz, and I am a fermentation revivalist. for The New
York Times Magazine. (c) Catherine Opie 2015. My interest in fermentation grew
...
http://www.wildfermentation.com/who-is-sandorkraut/

This may be another good resource.

Brain Maker by David Perlmutter: Food list – foods to eat and avoid
www.chewfo.com/.../brain-maker-by-david-perlmutter-food-list-what-to-eat-and-foods-to-avoid/‎Cached
SimilarMay 24, 2015 ... Eat a diet high in fermented foods, healthful fat. ... problems, depression, diabetes
, diarrhea, eczema, epilepsy, fibromyalgia, food sensitivities, ...

http://www.chewfo.com/diets/brain-maker-by-david-perlmutter-food-list-what-to-eat-and-foods-to-avoid/

Of course, whatever you eat can affect your seizures, so take nothing on faith and follow your own judgement in making decisions about your health care.
 

Keith

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Zoe

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Thanks for the link, I will check it out tonight! Do you drink fermented milk?
 

Keith

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Sometimes I drink fermented milk, but try to not use dairy too often. Dairy is controversial, spikes insulin, has estrogens and may feed Proteobacteria. Best to ferment it regardless.

I've been fermenting coconut cream and making sauerkraut.
 

livnbe

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Hello Jay1,
I'm new to this forum so forgive any mistakes .I suffer from partial seizures that seem to be controlled with Zonagran. I still have some that occur at night irregularly. I read your advice for diet and supplements. It seems that when I take the advice of "natural cures" it increases my seizures even making them occur in the day. This happens when I take Zinc, chromium, tumeric, B12, D3, B6, MCT, GABA, LCarnatine. So my question is... Do you know why this might be. I tried all of these things as individual additions and withing 2-5 days an increase in seizures and daytime occurances. Is it because of the region my seizures occur. ANY thoughts or hypothesis would be greatly appreciated.
 

Keith

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livnbe, do you have any gastrointestinal symptoms? Things like constipation and/or diarrhea? Maybe your reaction to the "natural cures" is due to your intestines, a gut-brain connection. Have you already considered that? Even probiotics can cause seizure in someone susceptible.
 

gnault

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I don't know if I would be scared to try something like this. They found lesions on my right temporal lobe and don't know if that was the cause of my seizures. My neurologist feels its not worth the risk to come off of medications or mess with things my epilepsy is under control.
 

masterjen

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This is not a very good example to use as information, in my opinion.

1. The link only leads to an abstract, not the full study.

2. The example provided based on case one mentioned in the abstract refers to someone with thrombosis, which would clearly be visible on imaging of the brain.

3. Case two mentioned had hemianopsia (decreased vision or blindness in half of the visual field) which I suspect gnault - and other CWE members - would be aware of.

4. Cause and effect cannot be proven based on two patients! One can't even say the researchers have enough information to support a hypothesis that disappearing brain lesion might be a cause of epilepsy.

Even articles from "scientific" journals need to be carefully scrutinized. Just because something is reported in a journal of this type does not mean one can jump to conclusions and think that a report therefore implies cause and effect. Not to mention that researchers themselves admit, as Keith mentions in his quote, that this is all poorly understood. Perhaps one day researchers will have data from many patients and reveal
whether the theory proved true or not.
 

Andrew

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AADC Enzyme

The tryptophan/serotonin issue is a complex one in terms of how the body needs a certain form of tryptophan for the brain to be able to properly utilize it, and from there the brain breaks down or processes this form into the different chemical components in a step-wise fashion until it gets to the synaptic cleft where it is then released and the neuron fires. If researchers can figure out at what "level" this tryptophan processing goes awry (ie. not enough is produced) to cause a particular disorder, then supplements of that particular form of tryptophan can be made and used. Just going to the health food store and getting tryptophan in the hopes of treating some disorder is a shot in the dark unless you know exactly what form the tryptophan is and what form of tryptophan is needed for a particular disorder (assuming, of course, that there is significant evidence that any form of tryptophan can even work for that disorder).

Case in point: tryptophan has been shown to help with certain forms of dystonia. Not just any form, but the 5-HTP (5-hydroxytryptophan) type because it is the 5-HTP level of tryptophan processing in the brain that for some reason not enough is being made from the next higher up level of tryptophan processing. So, supplements of 5-HTP give a "boost" to that processing level in the brain to enable more normal firing of the neurons involved in motor control.

The other issue: I take medicinal grade 5-HTP that is specially formulated to ensure it crosses the blood-brain barrier and gets to where it is needed. Not to mention that the amount of 5-HTP is carefully controlled. None of this is the case with herbal supplements of 5-HTP or any other form of tryptophan. So far this medicinal grade 5-HTP is only available to research physicians such as geneticists and biochemical disease specialists unfortunately, at least in Canada.
Hi masterjen,

You may be interested in reading the following URL:

Aromatic l‐amino acid decarboxylase (AADC; dopa decarboxylase; E.C. 4.1.1.28 ) is a PLP‐dependent enzyme that catalyses the production of dopamine and serotonin from l‐3, 4‐dihydroxyphenylalanine (l‐dopa) and l‐5‐hydroxytryptophan (5‐HTP), respectively.
https://onlinelibrary.wiley.com/doi/full/10.1111/j.1471-4159.2010.06742.x
 
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