Exploring the Gut-Brain Connection and Photosensitivity

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!

Status
Not open for further replies.
Thank you so much, Karen, it's been quite an honor communicating with you here.

RanMan, I call it the gut-eye connection, similar to the gut-brain connection and part of the same axis. I'm now writing a case study about my dog who suffered both photosensitive and gut origin seizures, hopefully to be published in the American Holistic Veterinary Medical Association Journal:
Gut Origin of Canine Epilepsy: The Gut-Brain-Skin-Eye Axis

I'm not a professional health expert, just an observer with an activist spirit.

She inspired this learning. Her problems were the world's as I see this issue as an environmental health problem of the highest order. Microbial balance is crucial to health, not just in our bodies, but also bodies of water, soil and all ecosystems. My theory is that people can be born imbalanced due to development in the womb. Yet modern science still promotes fallacy the fetal gastrointestinal tract is sterile without any evidence. In fact, evidence is mounting for what was once thought sterile is actually teeming with life.

RanMan, I'm sure you've already considered association of ulcerative colitis with epilepsy. I believe it was on this website where I learned of people putting two and two together. Have you ever noticed gastrointestinal symptoms surrounding seizure activity such as constipation? By the way, regarding heat per your post below, there are things such as ammonia of gut origin which become far more volatile when heated, a recipe for seizure.

Regarding photosensitive seizures, this was something which developed later in my dog, but became serious. I was working hard to heal her gut and she was improving greatly. It may have taken much longer to heal photosensitivity. I remain hopeful that it's possible to heal photosensitivity.

Here's a link to my Facebook photo, an exploration of gut origin of photosensitive seizure. It's pretty much a mirror image of what I've posted here on this site. But it's not limited to seizure as I also make the case for gut origin of now mysterious glaucoma, diabetic retinopathy, optic neuritis, optic neuropathy, macular degeneration . . .

Histamine excess, potassium ion channels, leptin resistance via high triglycerides, selenium deficiency and microbial toxins, all of gut origin, profoundly affect our eyes and brain:
http://www.facebook.com/photo.php?fbid=10152163847235602&l=2f40c5822f
 
Last edited:
Jon's GI doctor said there was a link between constipation and seizures. I didn't pursue that further with him because constipation hasn't really been an issue with Jon -- we've had more problems with diarrhea.

RanMan -- our 9 year old son has Inflammatory Bowel Disease. He struggles with malabsorbtion, lack of growth, and occassionally slips into being underweight when he has a flare-up. He also has seizures, but up until August 2012, they were not photosensitive -- but usually nocturnal seizures.

Jon had one year of being seizure free (and also diarrhea free) while on the Ketogenic diet, and after the first 6 months, was weaned off his seizure meds. Then he got a bad stomach virus, which shot everything to Hell -- he started having occasional seizures and also occasional diarrhea -- that was from March to August 2012. And then in August, he had a bad flare-up of his Inflammatory Bowel Disease, and at the same time, his seizures suddenly increased from one or two a month to two or three tonic/clonic (grand mal) and tonic seizures every night, and at this point he also began having daytime photosensitive seizures -- this was a completely new thing for him.

He was started back on meds -- which knocked out the tonic/clonics. But didn't put a dent in the photosensitive seizures. We then worked with various supplements -- such as fish oil and magnesium and MCT oil and higher doses or vitamins. This reduced the seizures from 2 or 3 each day to 1 or 2 each day.

Then he had another bad flare-up of IBD, which caused him to start having seizures every 2 hours, and had to be put in the hospital for several days. In the month of November, he had diarrhea almost every day.

So...in the month of December, the Neurologist and we agreed to give full attention to the GI problems, in hope that clearing that up would clear up the seizures. We worked with a GI doc and more importantly with a Pediatrician who specialized in nutrition. After treating with zinc and probiotics (both of which caused seizures themselves) and pancreatic enzymes, and eliminating all possible food triggers, the diarrhea was mostly conquered, and he has gained back the weight he lost.

So...from Christmas til now, we have been seen remarkable success with seizure control. He has been weaned off of Diazepam, and has almost completed a wean of Keppra, so he's down to just Zonegran and the Ketogenic diet. The only seizures he has had since Dec. 23 are when we take the Keppra down another notch -- he will have 3 or 4 seizures, and then be seizure free until it's time to taper once again.

So...for us...we have seen a definite link between seizures and bowel disease, and the photosensitive seizures popped up and got really bad (to the point where we could barely leave the house, couldn't watch TV, etc.) when he was having the bad flare-ups of IBD.
 
This new book may be very good:
Fighting Back with Fat: A Parent's Guide to Battling Epilepsy Through the Ketogenic Diet and Modified Atkins Diet
[ame="http://www.amazon.com/Fighting-Back-Fat-Battling-Ketogenic/dp/1936303450/ref=sr_1_1?ie=UTF8&qid=1357667095&sr=8-1&keywords=fighting+back+with+fat"]Fighting Back with Fat: A Parent's Guide to Battling Epilepsy Through the Ketogenic Diet and Modified Atkins Diet: Erin Whitmer, Jeanne Riether, Eric H. Kossoff M.D.: 9781936303458: Amazon.com: Books@@AMEPARAM@@http://ecx.images-amazon.com/images/I/41mVWPkdCzL.@@AMEPARAM@@41mVWPkdCzL[/ame]
 
This post may contain affiliate links for which Coping With Epilepsy Forums may be compensated.
Interesting studies about the ketogenic diet and activation of adenosine. I believe adenosine was previously discussed in this thread regarding microbes using their own ATP to make adenosine to hijack macrophages, the very cells sent out by our immune system to kill them. Perhaps this is related to adenosine receptors blocked by microbes suchg as protozoans and bacteria.

A ketogenic diet suppresses seizures in mice through adenosine A1 receptors
http://www.jci.org/articles/view/57813

Successful Treatment of Type 1 Diabetes and Seizures With Combined Ketogenic Diet and Insulin
http://pediatrics.aappublications.org/content/129/2/e511.abstract

Intracellular bacteria inhibited by adenosine:
http://www.plosone.org/article/info:doi/10.1371/journal.pone.0008299

Trying to find a relationship between adenosine and fasting, stumbled on this 2013 abstract regarding hibernation/sleep:
http://link.springer.com/chapter/10.1007/978-1-4614-3903-5_13?LI=true

Adenosine receptor activation ameliorates type 1 diabetes
http://www.fasebj.org/content/21/10/2379.full
 
Last edited:
Some of the doctors we work with here in Thailand published a paper several years ago on their research with a small cohort (20) regarding amino acids as a possible reason for the success of the Ketogenic Diet.

I noted in this study that the success rate with the 20 Thai kids with intractible epilepsy (13 of whom had generalized seizures -- very hard to cure) was much higher than usual. Only 6% of the kids had less than 50% seizure reduction, 25% were seizure free at 6 months, and the others all had significant reduction in seizures. They had them on a higher than usual ratio -- about 4.5:1 -- usually in the States we do 4:1 or less of fats to carbs/proteins.

http://www.si.mahidol.ac.th/Th/publication/2004/Vol87_No4_432.pdf
 
Karen, that's very interesting stuff, especially how they question ketosis as mechanism of success in Discussion. And then they focus on how reduced carbohydrates may be the important factor.

One thing they don't factor is microbial biosynthesis of amino acids such as tryptophan, meaning diet is secondary to flora. What we choose to consume affects our flora balance:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC246540/

Here's the gut-challenged autism community talking about a 2012 study about microbial metabolism by gut bacteria and amino acid balance:
"phenylalanine-bacteria connection with particular focus on an old bacterial friend, Clostridia"
http://questioning-answers.blogspot.com/2012/02/autism-aromatic-amino-acids-and-gut.html

Two amino acids not included in the Thai study seem to apply: glycine and alanine, both high in gelatin. Gelatin seemed to be the most important factor in halting seizure clusters in my dog to one seizure, akin to halting a freight train. Fasting was also crucial. Alanine is building-block for carnosine known to slow kindling in amygdalas, while glycine is a known treatment in seizure disorder, deficient in epilepsy:
http://israel21c.org/health/more-effective-epilepsy-treatment-coming-out-of-israel/

But perhaps the most important function of gelatin was to condition/coat the gut and absorb microbial toxins. I believe this because I tested other gut conditioners with success, but nothing as good as gelatin.
 
The Charlie Foundation (Ketogenic Diet for Seizures) recently recommended homemade gelatin (cooked from bones) for building up immune system.

When I cook Jon's chicken each week, I take the meat off the bones, and then throw the bones back into the rice cooker with a little vinegar, and let that simmer for the rest of the day. Then I use the gelatin for cooking his veggies (and also use it for cooking for my husband and I - it makes everything taste good!!)
 
Speaking of Meryl Streep (!!), I've been learning about strep imbalance in gut-brain where light sensitivity and seizure are symptoms.

It's called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections) and it's gaining recognition in OCD, tourrette's . . . it seems possible children can be born with this imbalance, not just a matter of contracting strep throat.
http://www.haaretz.com/news/feature...ked-israeli-researchers-find.premium-1.492692

excellent video here:
http://www.today.com/id/35814608/si...bless-you-girl-who-kept-sneezing-has-stopped/

I'll add some scientific background info and theoretical remedies later today.
 
Last edited:
I think Beth (the nutritionist) was recommending chicken broth, but she didn't recommend a specific dose.
 
Regarding PANDAS, now it's called PANS because the situation isn't limited to strep. Debated is Tourette's vs. PANS:
http://www.scientificamerican.com/a...n-cause-tourettes-like-symptoms-teenage-girls

The basal ganglia — an area of the brain that controls movement and motor skills — is particularly targeted, leading to OCD, tics and a large list of other neuropsychiatric symptoms.
http://auburnpub.com/lifestyles/a-c...5ce8-805e-260985a2e302.html?comment_form=true

Karen, had you suspected strep? See Thailand study here, actually a global environmental problem related to poor sanitation:
http://www.plosone.org/article/info:doi/10.1371/journal.pone.0038271

Here's one connection to photosensitivity, a girl who sneezed 12,000 times daily, finally diagnosed:
http://www.wavy.com/dpp/news/local_news/Sneezing-girl-officially-diagnosed

Sneezing explanation, including mysterious photosensitive sun-sneezes, is about connection of the hypothalamus to the attacked basal ganglia:
http://www.sciencedirect.com/science/article/pii/S0306452209006691
http://www.ncbi.nlm.nih.gov/pubmed/22529193

Previously, I've focused on histamine excess of gut-brain origin, however, histamine deficiency is also implicated. This breakthrough study reveals genetic mutation in Tourette's.
http://www.nejm.org/doi/full/10.1056/NEJMoa0907006

Histamine deficiency not just about gene mutation (the one responsible for making histamine faulty in PANDAS?!), but also microbial balance, i.e., high strep and low lactobacillus. Lactobacillus make histamine using their enzymes via L-histidine, also part of carnosine:
http://www.plosone.org/article/info:doi/10.1371/journal.pone.0031951

Seizure and light sensitivity in PANDAS; hotly debated is regulation of seizure activity by basal ganglia:
http://www.sciencedirect.com/science/article/pii/S1525505012003332

So, how to deal with a brain infection? Antibiotics helped girls in Le Roy, NY last year, though I'm not sure how they're doing now. How about balancing flora responsible for making the enzyme necessary to convert histidine to histamine, i.e., L. reuteri per study above and perhaps other types of lactobacillus. Wouldn't molecular DNA stool testing, i.e., Metametrix, be in order to know current balance? Supplements to provide building blocks of histamine include L-histidine and carnosine.

Carnosine is a dipeptide of beta-alanine and L-histidine known to slow the kindling effect in amygdalas. Beta-alanine is also a potential supplement and there's an interesting connection to seizure where itching is preictal (manic itching was the case with my dog before seizures ever began, then became preictal), associated with histamine deficiency, part of the gut-brain-skin-eye axis:
http://www.jneurosci.org/content/32/42/14532.short
http://www.nature.com/neuro/journal/vaop/ncurrent/full/nn.3289.html
Skin affects the brain; nociceptors also related to temperature sensitivity and pain pathway regulated by hormones via hypothalamus:
http://www.jci.org/articles/view/42843


This also makes the case for therapeutic dosage of virgin coconut oil (VCO), now being used to halt Alzheimer's in early stages. Supposed experts believe the mechanism is MCT fueling glutathione to detox mercury, but I believe it's more about lauric acid tagging along with MCT to neutralize brain infection. There's evidence Alzheimer's is the brain's innate immune system gone awry.
 
Last edited:
No reason to suspect strep. He hasn't had any high fevers or throat or ear infections since March 2011. His neurologist has been checking his ears and throat when Jon goes in (also suspecting some sort of underlying illness), but everything has been clear.

He had a stool culture in March 2012 (after the initial intestinal illness that the whole family got, but his didn't clear up) and again in early December 2012 (after having diarrhea almost every day in November), and I'm almost sure that strep was included as one of the pathogens tested for, and everything came back negative.

He's doing quite well these days. Diarrhea is pretty much gone. He made it through the final Keppra wean without any seizures -- so now is on day 9 without a seizure (he had a few seizures this month -- each time we reduced the Keppra he would have about 3 seizures, then go for a week or so without any). So now the only med that he's on is Zonegran, which seems to work well. His electrolytes are back in normal range. He has a good appetite and energy level. The only odd thing that we're seeing is that his blood glucose remains in the 90's, even when he's in good Ketosis.
 
Keith said:
Karen, had you suspected strep? See Thailand study here, actually a global environmental problem related to poor sanitation:
http://www.plosone.org/article/info:doi/10.1371/journal.pone.0038271

QUOTE]

That study done in Thailand was with babies in a refugee camp for the Karen hill tribe on the border with Myanmar. These refugee camps are quite dreadful places -- a dozen or more people living in a one-room dwelling, and perhaps 10 or 20,000 in one camp, so quite easy to spread germs.

I'm pretty sure that a brain infection would show up on an MRI -- when Jon had his MRI done in 2011 -- it showed quite a bit of inflammation (due to a sinus and ear infection), but the one done just 2 months ago didn't show any inflammation.
Click to expand...
 
That's great news.

I'm still learning about this issue. Apparently, such problems originate not necessarily from a brain infection, but from the body's immune response to an infection (such as strep), with the immune system essentially over-reacting and attacking part of the brain.

It appears difficult given current knowledge to discern autoimmunity from actual infection. The same situation seems to apply in Alzheimer's. But we're learning rapidly that what was once thought sterile is actually teeming with life. I've only recently discovered PANS/PANDAS and wondering if similar or identical issues play a role in epilepsy.
 
Thanks, Keith, will take a look at them.

BTW, on the topic of intermittent fasting, the Epilepsy Project newsletter just published a small study that Johns Hopkins did with children and the intermittent diet. They did it with kids that were already on the diet, but not responding very well, or who had relapsed.

I posted the study in the library section.
 
Karen, please provide a link to that info here as I'm not able to find it. Would love to review their methods and findings.

Here's a potential gut function explanation for benefit of fish oil (DHA), enhancing the flora-balancing effect of butyrate, so omega 3 fatty acids aren't just about brain health:
http://ajpgi.physiology.org/content/293/5/G935.full
 
Oops, sorry, senior moment.

I didn't post it in the Library section, I posted in Kitchen, and the title of the thread was about absence seizures and Glut-1 because the article was referencing two different studies.

Here's the link to the article over at the Epilepsy Project:
http://www.epilepsy.com/epilepsy/keto_news_feb13

The article references a study that just came out (last I checked, not yet available online) on intermittent fasting -- actually 2 studies -- one with mice, and one with 6 kids.

This also references the study:
http://www.sciencedaily.com/releases/2012/12/121206203122.htm
 
Thank you so much, Karen, really fascinating. How interesting they chose alternate day fasting as opposed to the other variations of intermittent fasting. The "8 hour diet" is quite trendy these days. But the 5:2 diet (fasting two days weekly) is falling out of favor as it may even cause problems like diabetes, especially in women.

Seems the low-carb diets (ketogenic, modified Atkins, paleo, SCD) combined with intermittent fasting would be a good thing for everybody in general.

As you know, I believe its power is in shifting gut flora in the right direction.
 
Yes, I thought the alternate day fasting was an interesting way to do it. Actually, they'd probably only be fasting every 3rd day, I guess.

I remember when I was back in college, if I just skipped one meal, I would have fainting spells. One time I didn't have time to eat lunch, then passed out in the choir while singing afternoon vespers. I was quite thin then, and always had really low blood pressure, and maybe my blood sugar was low as well.

With the mouse study -- they did a comparison of the ketogenic diet and intermittent fasting, and found that each worked to correct DIFFERENT types of seizures -- so I guess that's why Johns Hopkins was trying both out on the kids.

I think that reducing carbs is probably good for everyone, but I'm not so convinced that the strict ketogenic or Atkins diets are necessarily good for everyone. It's definitely good for Jonathan with regard to seizures, but he has to be closely monitored to make sure his blood sugar and electrolytes don't get out of whack. A lot of people on the Ketogenic or Atkins diets use mostly dairy fats (cream, butter, etc.) and don't take in enough fiber, and this can cause problems with constipation, high cholesterol, and other health problems. We haven't had these issues because we work mostly with healthier fats like olive oil, MCT oil, etc.

I haven't really looked into the paleo diet very thorougly, but I think the Selective Carb Diet is quite sensible -- that's pretty much what I'm doing for myself these days. Also the LGIT diet is a sort of modified form of the Ketogenic diet that allows more carbs, but they have to have a low glycemic load.

I think the Ketogenic diet probably works to stop seizures in a number of different ways -- it definitely can shift gut flora, also it lowers blood sugar, it eliminates gluten (sometimes a seizure trigger), it changes amino acids, it changes energy in the brain from glucose to ketones (very crucial for children with Glut-1 deficiency), and it changes the brain chemistry. Also, many parents who put their kids on the diet begin to reduce or completely eliminate processed foods, so these kids aren't getting crap like nitrates and MSG and preservatives and high fructose corn syrup, etc.
 
Status
Not open for further replies.
Back
Top Bottom