Exploring the Gut-Brain Connection and Photosensitivity

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Keith

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Hi Carol, it may be related. I'm just now learning about Jeavons Syndrome which seems very similar to Sunflower Syndrome. Have you ever noticed gastrointestinal symptoms with your daughter? Constipation, reflux . . .

One example would be colic as an infant. This 2011 paper about Infantile Spasm concludes importance of correct diagnosis as "colic and stomach upset" may be factors associated with the problem.
http://onlinelibrary.wiley.com/doi/10.1111/j.1528-1167.2011.03127.x/abstract

A form of Infantile Spasm, Aicardi Syndrome, includes: "Chorioretinal lacunae (abnormalities in the retina, the light-sensitive tissue located at the back of the eye)"
http://infantilespasmsproject.org/aicardi-syndrome
 
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Keith

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3) AND...photosensitivity!!! There is a condition called Polymorphous Light Eruption, which is a type of allergy to the sun -- people get rashes when exposed to sunlight or other UV light -- and one study found that fish oil was helpful with this condition. So...that begs the question...it it's helpful with one type of photosensitivity, could it be helpful with seizures triggered by sunlight?
Been learning about niacinamide which is also said to help with Polymorphous Light Eruption (PLE) and many other things . . . there's a lot to learn about niacinamide.
 
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Hi Keith, thank you. Samantha has never had a big seizure and meds so far not working for flutter so thinking ketogenic diet. Can't get her to take fish oil
 

Janus

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Hi, I tuned into that niacinamide reference. There is a lot to be said for what the quality B-vitamins can do. I say that because I believe that is from the root of niacin, correct?
 

Keith

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Janus, the more I learn about niacinamide, the more I like. It's actually made naturally in the body from tryptophan.

Here's the study about polymorphous light eruption, a skin condition from light:
http://www.ncbi.nlm.nih.gov/pubmed/2942169

Might it also help with photosensitive epilepsy? I'm still investigating, but due to its overall effect, especially in the gut, it may be very helpful. Here it's shown to help with kindling:
http://www.ncbi.nlm.nih.gov/pubmed/6235864

Here's a nice general article about the many benefits of niacinamide (also called nicotinamide):
http://www.vrp.com/single-vitamins/...another-look-at-clinical-uses-for-niacinamide

This recent study demonstrates how you can have too much of a good thing. A human shouldn't use more than 3 grams daily and that's pushing it. http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=8939131

Reading through some old sewage treatment papers, it's apparently crucial for microbial sulfite reduction. I'm still researching hypothesis it raises gastric acid (that may actually be its most important benefit). Here's a packed 2009 paper:
http://www.mdpi.com/1420-3049/14/9/3446

It crosses blood-brain barrier:
http://www.ncbi.nlm.nih.gov/pubmed/2952896

Antifungal:
http://www.wellnessresources.com/he..._out_to_be_a_potent_candida-killing_nutrient/
http://www.sciencedaily.com/releases/2010/07/100708141617.htm


Another nice general article with some focus on all-important blood sugar control:
http://www.drmyhill.co.uk/wiki/Niacinamide
 
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Janus

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That is SO GOOD!! thank you Keith! I love all that info; I am a researcher, myself. I think it is important to cross reference info with different sources.
PS My psychiatrist told me that longterm use of niacin causes neurological damage in the brain... But I have yet to find other sources for that. But I keep looking.
 

KarenB

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Just looked it up, and Jon gets 66 mg of Niacinamide in his Nutrivene dose.

Rock on guys! I'll be back one of these days. It's just that now that Jon's doing so well (5 months seizure free!!) we've gotten pretty busy -- out and about in the sunshine at last!! :)
 

KarenB

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Carol -- our Jonathan hasn't been diagnosed with Jeavons, but he does have photosensitive epilepsy. The ketogenic diet has been quite helpful. He had one year seizure free (and was able to go off meds), and then a relapse following a bad gut infection that led to a lot of health issues, but now is seizure free again (5 months) and off of 2 of his 3 meds (still taking Zonegran).

You might be able to find others with Jeavons doing the Keto diet at either of these sites (they both have forums)
Charlie Foundation: http://www.charliefoundation.org/
Matthew's Friends: http://www.matthewsfriends.org/
 
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Thanks Karen. How does Johnathon show photosensitive. Samantha has a flutter and turns to sun so far only symptom. Samantha wants to stop doing this so kids don't tease her.
Carol
 

KarenB

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He was having tonic seizures that were triggered by sunlight (especially when flickering through the trees, or reflecting off water) and other bright lights (one time he was staying in the hospital, and there was a bright light in the foyer next to the bathroom, and he kept having seizures when we'd take him to the potty). He also had a seizure from a bright light over a display at the mall, and from headlights when we were driving at night. He would also sometimes have seizures when watching TV or looking at the computer screen.

When he had a seizure he'd at first just stare at the bright light -- kind of fixate on it, then he would scream out several times, and then stiffen (and sometimes slight convulsions or his right hand would slap the arm of the chair) for about 10 to 15 seconds. He'd often be very sleepy afterward, and usually would take a nap for an hour or so. If we were playing one of his DVDs -- he'd often walk up right to the TV screen and just stare -- and this often would trigger a seizure. I would keep the remote control handy at all times, and if he started getting close to the TV, I'd switch it off. He had what we called the "fly drawn to the light" syndrome at nighttime. If there was ANY light in the room at all -- like the little light on the AC unit, or the light on the laptop, or anything like that, he was drawn to it like a moth to a flame. He would get as close as he could and just stare at it, and often had a seizure when doing that. Wierd.

Jon has had nocturnal seizures since age 1 (tonic clonic or grand mal), but the photosensitive seizures were a new development that first appeared in August of 2012 following an illness. They got so bad he was having several a day (up to 9), and we really couldn't go anywhere. We had to just stay inside with the curtains drawn, and with muted lighting, and no TV or DVDs or anything like that -- all quite depressing for awhile. He wasn't able to go to school. We would read books and listen to music, and work on puzzles and things like that. But it was quite an isolated existence, for both Jon and me!! My husband would be working all day, and Jon and I were home alone -- couldn't even go for a walk to feed the ducks or to the playground or any of the little simple pleasures that take place outdoors. My husband would shoo me out the door on the occasional evening, so I could go out with friends, but within an hour or so, I'd often have to be running back home because Jon was in crisis.

I was on this forum CONSTANTLY (and especially on this thread), along with the Charlie Foundation forum -- the support was so wonderful, and Keith and Nakamova and others really helped me work through some different approaches, and thank God we seem to have made it through the crisis. Both the photosensitive and the nocturnal seizures have stopped since January.
 
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Oh that does sound a lot to deal with. Watching your child suffer in anyway is terrible. I suppose we can only do our best and I suppose suffer along with them. It sounds almost like every case is different to the other. Some things work and then some don't. We are only at the very beginning of our journey. The best I can do is to take one day at a time
 

KarenB

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Oh that does sound a lot to deal with. Watching your child suffer in anyway is terrible. I suppose we can only do our best and I suppose suffer along with them. It sounds almost like every case is different to the other. Some things work and then some don't. We are only at the very beginning of our journey. The best I can do is to take one day at a time
A lot of our journey was chronicled in this thread -- some of the things we tried worked, and some didn't. It seemed to be a combinations of several things (tweaking the diet, tweaking meds -- actually getting rid of 2, fixing his gut issues, and simply trying to eliminate triggers for awhile) that worked together to bring the current good health we're enjoying.
 

Keith

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Microbial imbalance, or gut-brain dysbiosis, appears overlooked, underdiagnosed and underestimated in epilepsy treatment. Gut origin of seizure, including photosensitive seizure, is barely on the map. Seizure may be caused by microbial toxins and irritation of the intestinal lining which contains the most innervation of the body including the vagus nerve connected to glutamate receptors. Gut dysbiosis may be the root cause of pH imbalances, also a direct cause of seizure. pH imbalance may lead to rapid changes in blood pressure including increased cerebral flow and intracranial pressure.

Here's one possible mechanism I've been learning about where microbes, especially acetogens such as clostridium consume CO2 to make acetate, a building block for lots of things: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC182497/
 

Keith

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Another example of microbial overgrowth of gut-brain origin potentially altering pH balance is studied in clostridium perfringens, yeast candida and strep bacteria. This study talks about strep using their own carbonic anhydrase enzyme to fix CO2. This was found especially pronounced in blood-brain barrier invasion.
http://jb.asm.org/content/192/15/4054.full
http://www.sciencedirect.com/science/article/pii/S0968089612004403

Carbonic anhydrase is a zinc-dependent enzyme required to manufacture gastric acid. So, anyone with low gastric acid (a very common problem) might consider zinc supplementation, especially if zinc deficiency is caused by microbial overgrowth. I've read zinc picolinate is best for systemic bioavailability.
 
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Janus

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that is wild. thank you and is that one reason i have changes in energy and notably, libido when i add zinc supplements to the diet?
 

Keith

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Today I'm learning about how clostridium overgrowth produces hydrogen which methanogens use to produce methane via CO2, a recipe for seizure. Methane is known to cause constipation which predicts seizure. Interestingly, high methanogens are found in anorexia, itself associated with epilepsy. More to come.
 

Keith

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So we know the brain halts seizure by raising acidity and that CO2 is protective of the brain:
http://www.ncbi.nlm.nih.gov/pubmed/7761212
http://raypeat.com/articles/articles/co2.shtml
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2673408/

How to raise CO2 may begin in the gut.

I've been learning about microbial free fatty acids of gut origin (implicated in diabetes and obesity) hindering mitochondrial production of CO2.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC441163/
http://www.ncbi.nlm.nih.gov/pubmed/12028371
http://www.ncbi.nlm.nih.gov/books/NBK21624/

So, how to block free fatty acids of gut origin? Balancing flora is the long term solution. But in the short term, there are some natural approaches:

1) gelatin: I've talked a lot about using gelatin to halt what would have been horrific 3-day seizure clusters in my dog to one seizure by immediately fasting her for 24 hours and giving her therapeutic doses of Great Lakes beef gelatin, 1-2 tablespoons about 4x/day. I've considered the mechanism soothing/coating the gut lining while trapping clostridium toxins which are known to cause seizure. We also know gelatin has high glycine content important to calm the brain as well as high alanine, precursor of carnosine known to calm kindling in amygdalas. But now I'm learning gelatin also traps free fatty acids which may allow CO2 production. Here are two illustrative examples:
Effect of Gelatin Coating on Fatty Acid Composition of Grass Carp (Ctenopharyngodon idella) During Refrigerated-Storage http://www.idosi.org/wjfms/wjfms4(5)12/7.pdf
http://www.ncbi.nlm.nih.gov/pubmed/11409998

2) Niacinamide (also called nicotinamide) somehow reduces/restrains free fatty acids. The more I learn about niacinamide supplementation, a natural component of the body, the more I like. It's actually a long term solution in balancing flora, activating innate immunity, raising NAD to raise ATP. It's antifungal and is even known to help the immune system tackle MRSA. Here's a study where nicotinamide (and caloric restriction) was injected to reduce free fatty acids in plasma:
http://diabetes.diabetesjournals.org/content/44/8/863.short

One other supplement I believe is very powerful in balancing pH is OptiMSM in therapeutic dose. This is the most pure form of MSM, organic sulfur, made by distillation, well known to balance pH by raising alkalinity. MSM and lauric acid in coconut oil make cell walls more permeable allowing acid waste out and antimicrobial peptides in to balance intracellular organisms. As discussed earlier, there may be inverse relationship between blood and brain pH due to acid shearing of the blood-brain barrier creating brain alkalosis. Metabolic acidosis is part of microbial overgrowth in the gut. Microbes such as fungi rely on high acid for growth where MSM is a known antifungal. http://www.sciencedaily.com/releases/2013/09/130924122458.htm
There seem to be so many benefits, including rebuilding gut lining, balancing pH toward alkalinity, making glutathione work . . . and completely non-toxic. Sulfur is also required to build collagen possibly needed to repair damage in the brain.

Is it well known epileptics have high triglycerides? Triglycerides are the result of free fatty acids combined with glycerol, another product of microbial imbalance. Here are two studies: http://www.ncbi.nlm.nih.gov/pubmed/18922053
http://www.ncbi.nlm.nih.gov/pubmed/227221
 
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Keith

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More paradoxical, counterintuitive information about the world of compartmentalized pH levels: there's an inverse relationship between metabolic pH and intracellular pH in the brain and body. These studies are about the addition of sodium bicarbonate (baking soda) alkalizing extracellular fluid while acidifying intracellular pH.
http://www.ncbi.nlm.nih.gov/pubmed/9497798
http://ajpheart.physiology.org/content/256/5/H1316

So, would the opposite be true? For example, if someone has metabolic acidosis, would they have intracellular alkalosis leading to seizure?

This is why an alkalizing diet and regimen works as it raises intracellular acidity in the brain.
 
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