Dietary changes and seizure control

How much coconut oil do you take every day?


  • Total voters
    48

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Thank you AlohaBird, fresh lemon grass is much easier to find than fresh turmeric.

I hope I'm not grossing anyone out, I just wanted to show what "almost normal" skin looks like with psoriasis. It is truly amazing.

url: postimg.org/image/lzzu91n4d/
 
I just want to confirm that there seems to be something going on with the turmeric.

I have psoriasis on arms and legs, and adding turmeric to everything else, made my psoriasis look like almost normal skin - in just two days! Personally I believe that my psoriasis, gluten and tle is all linked in some way, so if it makes my psoriasis look good, it will be positive for my tle.

curcumin is fat soluble, and I already drink a ginger tea, so I just added turmeric powder, black pepper and coconout-oil to the ginger tea. One teaspoon of each, (also the ginger) - three times a day.

Needless to say this is an awful brew in taste, I don't think any kid would drink this?

You may be on to something with the potential link between your psoriasis, gluten intolerance and temporal lobe epilepsy. Psoriasis is believed to be an auto-immune response. This study found a strong correlation between auto-immune diseases (including psoriasis) and epilepsy. http://www.ncbi.nlm.nih.gov/pubmed/24687183
Celiac disease is also auto-immune. Temporal lobe seizures are most commonly associated with autoimmune epilepsy.

http://www.ncbi.nlm.nih.gov/pubmed/23646005
http://www.ncbi.nlm.nih.gov/pubmed/26076858

I have a mild curry powder I got from Thailand (two primary ingredients are turmeric and ginger) and I just sprinkle that on Jon's veggies when I cook them. Turmeric and ginger are strongly anti-inflammatory so work well with auto-immune issues.

A couple other spices that have strong anti-inflammatory properties are cinnamon and saffron. When I lived in China, I would go to the pharmacy to buy these, as they were considered medicine there (and the saffron was actually affordable, unlike here). I put a full gram of cinnamon into Jon's morning flaxseed/almond flour muffins.
 
Last edited:
graph1_c621cf69-4eb8-4a4d-805d-49402d0edc43_grande.jpg



graph2_2fbf8cc2-02c5-468c-81e9-4d41d3ab6aa7_grande.jpg

I think that first graph for the classic Keto diet isn't quite accurate. The highest ratio for most kids is 4:1 (4 g fat for every gram of protein or carb), so fat should only take up 80% of the graph for the highest ratio (and lots of kids are at lower ratios -- 3:1, etc. When I eyeball that graph, it looks more like fat is closer to 90%. But that may just be because I'm still on my first cup of coffee.
 
You may be on to something with the potential link between your psoriasis, gluten intolerance and temporal lobe epilepsy. Psoriasis is believed to be an auto-immune response. [...]

For those of you with kids and whom suspect auto-immune response in epilepsy, I'll put down the order of diagnose. I was first diagnosed with tle at the age of 5 with EEG, borderline gluten at 12 with blood testing, and biopsy diagnose of full gluten at the age of 20, psoriasis at age around 21-22.

I have a sister that was diagnosed with gluten at the age around 5, and we suspect that she has a very mild form of tle, she also has psoriasis.

The progression of this suspected auto-immune response from childhood to adult seems not to follow a strict pattern? The only conclusion I can draw from my family is that psoriasis is the last in this progression.
 
Last edited:
For those of you with kids and whom suspect auto-immune response in epilepsy, I'll put down the order of diagnose. I was first diagnosed with tle at the age of 5 with EEG, borderline gluten at 12 with blood testing, and biopsy diagnose of full gluten at the age of 20, psoriasis at age around 21-22.

I have a sister that was diagnosed with gluten at the age around 5, and we suspect that she has a very mild form of tle, she also has psoriasis.

The progression of this suspected auto-immune response from childhood to adult seems not to follow a strict pattern? The only conclusion I can draw from my family is that psoriasis is the last in this progression.

I'm assuming you avoid wheat and other gluten products? Does this have an effect on seizures and skin issues?

I was reading this study that Jay 1 linked earlier and it talks about inflammation breeding seizures which then is breeding more inflammation which then causes more damage to the brain and breeds more seizures. Too many doctors and researchers only concentrate on the neuronal aspects of epilepsy (i.e. the brain) and only use meds to control the neuron activity, without getting the the root causes, which in some cases come from issues somewhere else in the body (for example, Celiac Disease). This study indicates that some patients with epilepsy have better seizure control with anti-inflammatory treatment than with AEDs http://www.hindawi.com/journals/mi/2014/901902/
 
Last edited:
I hope folks get the chance to read Dr. David Perlmutter's latest two books, Grain Brain and Brain Maker. Grain Brain is mostly about the role of not only gluten but all excess carbs in neurological dysfunctions while Brain Maker concentrates on the emerging science of the gut-brain connection.

I ran across that now elderly (and locked) thread that Keith did in which Karen and the struggles to regain her son Jonathan's health were so central. (What was the name of that thread again Karen?)

People got a bit caught up in (as Bernard put it) "dogging on" Keith for playing a bit fast and loose with his scientific citations that the whole thing deteriorated into a slug fest and had to be shut down. Before that happened though, there was some really interesting information there.
Granted, the people dogging on Keith had a point that he was not providing sufficient back up for his assertions some of the time. I think however that, if that thread were re-done today, the back up would be there.
Some of the folks that were categorically dismissive of his ideas might be forced to eat their words (with a side order of kimchee).

As Dr Perlmutter pointed out in a recent speech I saw online, more than 80% of everything that has ever been written about the microbiome of the human gut and its connection to our brains has been written in the past five years.

All these concepts tie in together:

Get rid of gluten
Get rid of all other sources of excess (empty) carbs
Get rid of processed junk oils
Get rid of fake additives like MSG and aspartame

Add healthy fat to a diet of abundant fresh produce and adequate protein.

All of these things together work to reduce inflammation. They reduce intestinal permeability and restore the healthy balance of the gut flora.

I don't think any one thing is a "silver bullet".
 
I'm assuming you avoid wheat and other gluten products? Does this have an effect on seizures and skin issues?

I was reading this study that Jay 1 linked earlier and it talks about inflammation breeding seizures which then is breeding more inflammation which then causes more damage to the brain and breeds more seizures. Too many doctors and researchers only concentrate on the neuronal aspects of epilepsy (i.e. the brain) and only use meds to control the neuron activity, without getting the the root causes, which in some cases come from issues somewhere else in the body (for example, Celiac Disease). This study indicates that some patients with epilepsy have better seizure control with anti-inflammatory treatment than with AEDs

Yes, eating gluten would cause more inflammation in my psoriasis and lead to more seizures. That is for sure. In my case this is a very plausible scenario with anti-inflammatory treatment. The Tegretol I ate from 5-16 did not help. To the contrary.

I recently read that there seems to be a gene mutation that is very positive for the family in it's whole, but negative for those individuals in the family that get certain diseases from this mutation, these diseases include epilepsy, schizophrenia, bipolar, gluten-intolerance, etc... This would be a broader perspective than just looking at the epilepsy or the autoimmune part, and also positive news for a family hinting that they have a strong positive mutation, linked with some negative aspects for certain individuals within the family.

Epilepsy, schizophrenia, bipolar all seems to benefit from roughly the same alternative treatment, not only that, in some cases can share the same drugs.
 
Here are the published medical papers which prove that AEDs cause more seizures.


(1) AEDs cause inflammation in brain tissue and weaken blood brain barrier.

http://www.hindawi.com/journals/mi/2014/901902/


(2) Brain Inflammation and weakened blood brain barrier causes recurrence of more stronger seizures. Brain inflammation is considered a biomarker of onset of epilepsy.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3625731/


(3) Epilepsy and Inflammation - Inflammation decreases Seizure threshold and causes autism, seizures and memory deficits.

University of Milan (Italy), University of Amsterdam (Netherlands), School of Medicine at UCLA, Los Angeles, University of Calgary (Canada)


http://www.gutbrainaxis.org/pdf/vezzani%20epilepsy%20and%20brain%20inflammation.pdf



(4) Ongoing brain inflammation lowers seizure threshold and increase in DNA fragmentations.


1742-2094-6-38-4.jpg



(5) Cellular injury and neuroinflammation in children with chronic intractable epilepsy

http://www.jneuroinflammation.com/content/pdf/1742-2094-6-38.pdf
 
Last edited:
Jay,
You know I'm with you about diet, right?

That said, none of those articles says what you say they do about AEDs causing BBB permeability or increase in seizures.

They all talk about inflammation being a biomarker for epilepsy susceptibility and talk about the potential for treating seizures by targeting the inflammation instead of the ion channel blocking methods currently in use.

The first article does refer to the fact that most AEDs are CNS depressants and that this is not helpful but it doesn't give any evidence of increase in seizures or BBB permeability and doesn't even posit that this is occuring.

The chronic inflammation over time is shown to damage the BBB and recurring seizures also cause injury but none of those papers says, "The AEDs did it".

I know English is not your first language but you need to read your articles more carefully before making posts that summarize them when a lot of people will not bother to read the article, they will just take your summary as truth.
 
I totally agree that inflammation is the key.

The flaw I see in all of those studies is that they talk about inflammation as a "mediator" and a "biomarker" for epilepsy but none of them delves into the root question of where the inflammation comes from in the first place. Instead of wasting time developing a drug that will lower inflammation, we could be lowering it by diet.
 
I have not yet read your articles linked to your (1)-(4), but no where in the article linked to your (5) does it say medication causes the cellular injury and neuroinflammation. The article says certain disease conditions that lead to seizures, and the continuing seizures themselves, led to cellular injury and inflammation and therefore more seizures.
 
Oxidative Stress


Various antiepileptic drugs may impair the endogenous antioxidative ability to prevent oxidative stress. Therefore, some antiepileptic drugs, especially from the older generation, may trigger oxygen-dependent tissue injury. The prooxidative effects of these antiepileptic drugs might lead to enhancement of seizure activity, resulting in loss of their efficacy or apparent functional tolerance and undesired adverse effects.


https://www.ncbi.nlm.nih.gov/pubmed/23730257



In the serum of children and adolescents with epilepsy, the oxidants-antioxidants balance is modified by antiepileptic therapy.

https://www.ncbi.nlm.nih.gov/pubmed/15174247



The Role of Reactive Species in Epileptogenesis and Influence of Antiepileptic Drug Therapy on Oxidative Stress

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3520043/pdf/CN-10-328.pdf



Antioxidants as a preventive treatment for epileptic process: a review of the current status

https://www.ncbi.nlm.nih.gov/pubmed/25977679
 
Last edited:
Now this is a totally different but interesting subject. Mitochondrial dysfunction, oxidative stress, and cell damage.

All of those papers are full of terms such as "may" and "might" and "it is proposed" and "it would seem reasonable" so they are far from being definitively anything other than speculation.

That said, I do think there is merit to this line of inquiry and I hope more research will be done to fill in the "mays" and "mights".

In the mean time I will continue to take an anti-oxidant supplement. Can't hurt, might help.


Jay, I hope you realize that people are not calling you out to be negative or closed minded. It's just that, if we, the people who believe in alternative methods of treatment, are not to get a rep as dimwits who believe everything they read on who knows what blog, we have to be careful about what we post.

If you say an article says, "xyz" and it doesn't say anything like that, not even an indication in that direction, then, my friend, you look very foolish.

I have posted many times on this board trying to get people to be more open to new ideas and treatment modalities. If I am telling you that you need to check your facts and be more careful about what you post, well..............

No more screaming red headlines about articles that PROVE something when it is really only speculation that may or may not be related.

OK?
 
Now this is a totally different but interesting subject. Mitochondrial dysfunction, oxidative stress, and cell damage.

All of those papers are full of terms such as "may" and "might" and "it is proposed" and "it would seem reasonable" so they are far from being definitively anything other than speculation.

That said, I do think there is merit to this line of inquiry and I hope more research will be done to fill in the "mays" and "mights".

In the mean time I will continue to take an anti-oxidant supplement. Can't hurt, might help.


Jay, I hope you realize that people are not calling you out to be negative or closed minded. It's just that, if we, the people who believe in alternative methods of treatment, are not to get a rep as dimwits who believe everything they read on who knows what blog, we have to be careful about what we post.

If you say an article says, "xyz" and it doesn't say anything like that, not even an indication in that direction, then, my friend, you look very foolish.

I have posted many times on this board trying to get people to be more open to new ideas and treatment modalities. If I am telling you that you need to check your facts and be more careful about what you post, well..............

No more screaming red headlines about articles that PROVE something when it is really only speculation that may or may not be related.

OK?
Alohabird,

Which antioxidant supplements do you take? I happened to read about numerous folks on this forum dying from SUDEP and it scared me a lot about my 9 year old son.

As for AEDs, I have messed up with the link. I am still trying to find the correct link in my bookmarks. There was another one about Keppra and I can not find that one either.

Keppra contains Blue 2 and titanium dooxide colors. Both of these colors have been found to cause brain cancer in Rats. These colors are not even allowed in Europe. How do we explain this issue in Keppra?


Regards,
Jay
 
Jay,
I am the last person you need to convince on this forum that AEDs are often more harmful than helpful.
But that is my personal belief, I'm not claiming to have hard science and then not backing up what I say. If you find references that are solid, I would love to read them.

Yes, it is horrifying the junk that is in pills that are supposed to be medicine. There are parabens in my Valproic acid. But, as the articles you posted above point out, seizures themselves cause damage on a cellular level so, for someone with a severe case of epilepsy, the cost/benefit analysis of taking AEDs vs. having the seizures may come down if favor of the AEDs.

SUDEP is a terrifying thing which has many potential explanations. I have read that there is a possibility that it could be related to sleep apnea causing oxygen deprivation.

(Note all the qualifiers in the above sentence. "Potential" "Could" "Possible" "I have read". I am not claiming anything to be PROVEN in screaming red type.)

I prefer all natural ways of getting my anti-oxidants so I take Moringa leaf capsules. I also take turmeric, alpha lipoic acid, krill oil, and a multi strain probiotic.
 
I ran across that now elderly (and locked) thread that Keith did in which Karen and the struggles to regain her son Jonathan's health were so central. (What was the name of that thread again Karen?)

As Dr Perlmutter pointed out in a recent speech I saw online, more than 80% of everything that has ever been written about the microbiome of the human gut and its connection to our brains has been written in the past five years.

All these concepts tie in together:

Get rid of gluten
Get rid of all other sources of excess (empty) carbs
Get rid of processed junk oils
Get rid of fake additives like MSG and aspartame

Add healthy fat to a diet of abundant fresh produce and adequate protein.

All of these things together work to reduce inflammation. They reduce intestinal permeability and restore the healthy balance of the gut flora.

I don't think any one thing is a "silver bullet".

The original thread was entitled something like "Sunshine & Seizures." (It was later renamed to something like "Gut Brain Connection." It began as a thread about photosensitive seizures by a Mom whose child would have seizures on the beach, I think, from the sun reflecting off the water. I got involved in that thread back in 2012, because in the Fall of that year, Jon started having photosensitive seizures, which was a new thing for him. He'd been completely seizure free for a year on the Keto diet, and then, following a tummy flu, had a severe relapse that went on some months. In addition to his tonic-clonic and tonic seizures, which he'd had before, he started having gelastic seizures (giggling/crying fits -- we didn't even realize they were seizures for a few months) and then tonic seizures that were triggered by photosensitive stuff -- like light reflecting off water, or the TV screen, etc. For months, Jon and I were shut-ins, sheers drawn across the windows, low lights on in the house, no TV or other electronic amusement. We read books a lot and listened to music, and I home-schooled when he was conscious enough to pay attention.

It was Keith, I believe, who alerted me to the gut-brain connection, which certain folks poo-pooed as having no hard science behind it. However, I began to put 2 and 2 together. Jon started having seizures at age 1, and at the same time, he began having chronic diarrhea that he has had most of his life. This was the same time that he was weaned from breast milk, and began eating wheat and other grains in addition to rice. Later, we suspected Celiac disease, because we noted the diarrhea was more severe when we were in the U.S. (on a wheat-based diet) than when living in Asia with a rice-based diet. When he started the Keto diet, the diarrhea cleared up. But then, after the tummy flu, he started having diarrhea again. And seizures.

We had a GI work-up, and the GI doc said Jon had Inflammatory Bowel Disease, but could not suggest a remedy. I consulted with a pediatrician in Thailand, whose specialty was nutrition (and the Keto diet). She said that, due to the tummy flu, Jon's gut was chronically inflamed, and he was not absorbing fats (or meds) properly. Thus, he wasn't getting enough of the important fats from the diet to make it work. So, she worked with us on healing the gut. A very simple diet for a few weeks of foods that were helpful for inflammation and easily digested, a round of probiotics, pancreatic enzymes (to break down fat molecules), and zinc supplement (which helps heal gut). After a few weeks on this regime, the seizures faded away, and within 2 months stopped altogether. And, now, 2 1/2 years later, he remains seizure free.

ETA: I also forgot to add that she put him on MCT oil. She explained that MCT oil is a treatment for people with malabsorbtion syndrome and other bowel diseases like Crohns because the MCT oil is absorbed differently and more efficiently than other fats.
 
Last edited:
Sometimes using that Thanks button for a post (or two) isn't quite enough. AlohaBird hit the nail on the head several times here. I hope Jay that you are able to understand what she is telling you. How you present information is important.

And thanks KarenB for touching on "the Keith controversy". Keith started out much like Jay - very zealous and with a tendency to overstate things. I got a lot of complaints about his posts. However, Keith was able reign it in (ie. conform to the forum guideline) and he did post some interesting info/ideas. I'm glad to hear that it led to at least one member finding something that worked. Honestly, that really makes all the headaches that come with administering a forum worthwhile.
 
Bernard, I agree with you wholeheartedly. I also want to thank you for your background [mostly] presence. Your importance here blows me away!

I want to say that I have felt myself to be a winner as I have followed the discussions since Jay1 began to post. These back and forths have invited me to reflect on my own nutritional journey as it relates to seizure control. I would not have remembered the uniqueness of my wandering ways or appreciated my own good sense if I had not been told what I should have been doing but was not. I am amazed that I have been heading in a sensible direction without knowing it. I am also grateful to have been invited to think [for the umpteenth time] about the anxiety of sticking with the incredible complexity of being alive. That really means sticking with what is true -- I don't know very much at all.
 
Back
Top Bottom