Exploring the Gut-Brain Connection and Photosensitivity

[kirsten]

I think we have hijacked an important thread. Keith, will you please start a new one and PM me the link rather than continuing here?

 

[Keith]

Hi Jessica, that's a lot of great insight you have and some excellent and very kind suggestions. Have you ever considered your issues caused by gut imbalances?

kirsten, I "hijacked" this thread on page 2 in September 2012 after it was dormant for two years. Please do me the honor of glancing through it if you haven't yet.

The vagus nerve does go into the abdomen and into the organs. :
http://www.midwestprs.com/essentials-of-the-gut-brain-connection-vagus-nerve-anatomy

Here's an interesting paper about vagal circuitry and glutamate receptors of the GI tract:
http://pharmrev.aspetjournals.org/content/63/1/35.full

I'd like to learn more about epigastric veins and arteries associated with the intestines. Please see this example:
http://onlinelibrary.wiley.com/doi/10.1002/bjs.18004015920/abstract

 

[Keith]

Great suggestion, kirsten. Perhaps there's already a thread about GI issues on the forum.

I've focused on GI imbalances on this thread because I believe that's the origin of the problem. The same is true of other mysterious eye diseases such as glaucoma and blindness caused by diabetes, diabetic retinopathy. Even now epidemic myopia (nearsightedness) is caused by insulin resistance, a phenomena of gut origin.

If someone comes to this thread looking for help in ameliorating photosensitive seizure, their eyes may be opened to a new solution: focus on the gut, not the brain.

 

[Nakamova]

Note to Keith and Kirsten --

This thread, with it's more in-depth discussion of gut-brain issues has been separated out from the initial "Sunshine and Seizures" thread.

That original thread can be found here:
http://www.coping-with-epilepsy.com/forums/f23/sunshine-seizures-3021/

 

[Keith]

Thanks for your hard work, Nakamova. Hopefully, this new thread will reach the broader audience for which it was intended. And thanks to kristen for inspiring the change.

From Palm Beach County With Love,

Keith

 

[lindsayschu2]

Keith: What about people who have seizures as a result of hypoglycemia, but do NOT have photosensitive seizures?

 

[Keith]

Hi lindsay, I would say that's far more common. That's the reason this thread was created by moderator, Nakamova, since gut origin of seizure may be a predominant issue. And I never say predominant.

 

[kirsten]

The vagus nerve does go into the abdomen and into the organs. :
http://www.midwestprs.com/essentials-of-the-gut-brain-connection-vagus-nerve-anatomy

Nowhere in this article does it state that the vagus nerve goes into the actual organs. It says only that it innervates them through connections to the walls, as I pointed out earlier. This is what causes butterfly sensations, and tells us about spasms, gas and so forth. Again, that the vagus nerve carries information from the abdominal walls is not the same as the GI organs actually making physiological changes to the brain. Assuming otherwise without evidence is like saying that because I eat an apple, the apple must necessarily also be eating me.

If you're looking to research the nerves directly connected to the gut, you're wanting the enteric nervous system, which is the most autonomous neurological network in the body; the so called second brain. It communicates with the vagus nerve.

 

[kirsten]

That's the reason this thread was created by moderator, Nakamova, since gut origin of seizure may be a predominant issue. And I never say predominant.

The thread was simply moved because it was misplaced under a disparate title, and not to lend weight to gut/seizure origin.

I was reading an essay from Edge.org last night and it reminded me of this discussion. The writer, Steve Grand, speaks of a time when he was a child using a map to direct his father to their destination. They pass several waypoints that coincide with the map, but find there are many churches, bridges and so forth that are on the road but not the map. Still, they assume that since some of the navigation points are consistent, they must be using the right page in the map book. Needless to say, they eventually find they have indeed being using the wrong page. He goes on to say, "Sometimes we manage to convince ourselves that we have a handle on what's going on, when in fact we're just turning a blind eye to contradictory information. We discard that information or ignore it because we don't understand it. It seems to make no sense, and a while goes by before we realise that the problem doesn't lie with the facts but with our assumptions."

 

[Keith]

scientists were shocked to learn that about 90 percent of the fibers in the primary visceral nerve, the vagus, carry information from the gut to the brain and not the other way around.

http://www.scientificamerican.com/article/gut-second-brain/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1766799/
http://www.nutritionjrnl.com/article/S0899-9007(00)00464-0/abstract
http://emedicine.medscape.com/article/1875813-overview


We need to shine a bright light on the gut-brain connection in epilepsy. It should no longer be discounted as it has been for decades. The same is true of photosenstitive seizure and eye damage due to gut imbalances.

 

[kirsten]

Quote :
"scientists were shocked to learn that about 90 percent of the fibers in the primary visceral nerve, the vagus, carry information from the gut to the brain and not the other way around."

Yes, as said in a previous post, "This is what causes butterfly sensations, and tells us about spasms, gas and so forth. Again, that the vagus nerve carries information from the abdominal walls is not the same as the GI organs actually making physiological changes to the brain."

Nothing about epilepsy there. You're wanting to shine a 'bright' light on the gut brain connection in epilepsy, yet you cannot tell us why through facts and evidence, or even academic articles. This is why I made mention of how assumptions often lead us to draw false conclusions. Assumptions, combined with certainty and attempts to help, can be incredibly dangerous. People with life threatening conditions may listen, and you may be entirely wrong, and they may stop their medications and standard treatments as most epilepsy patients so desperately want to do. And they could become incredibly ill, or they could die. At best, they may spend their money on GI tests and their efforts on diets that are of no consequence--all in all, focusing on one person's ideas instead of theories that have proven themselves through trial after trial after trial. Do you believe you know enough to take that risk?

I'm not saying we might not be completely wrong about what we know. We could very well be, and I believe we should always keep an open mind so that we will find out new things and zoom in on better treatments. But I am saying that when we do approach new concepts, we prove them thoroughly before we publicise them with such certainty. Ethically, bright lights are only shone on theories that have been exhaustively proven, so I'm wondering what is different about you and your ideas that makes you immune to such safeguards? If yourself and your ideas are not superior to those of the medical and scientific community, they need to be discussed as uncertainties, and they need to be approached without advice-giving. They need to be explored thoroughly through years of study and a comprehensive understanding of neurology before anyone at all shines a bright light on them.



If you want to discount the brain's connection with epilepsy, you have quite a task ahead of you. You will have to disprove the foundations that several fields are built around, including neuroscience, neurology, and neurosurgery. For instance, you'd need to explain why it is that lobe resections have such a high success rate with, say, temporal lobe epilepsy--where the focus of seizures is sectioned away from the brain but the GI tract is not touched or treated, why is it that 70 plus % of seizures improve? You'd have to tell us why it is that anticonvulsants are so often successful for increasing seizure threshold, yet there have not been a significant enough portion of Crohns/epilepsy patients who got their Crohns under control and stopped having seizures to have drawn attention to a link. It is cases such as those that have given us off-label uses for many drugs--viagra, neurontin, I could go on. The scientific community picks up these links, and they have not picked up Crohns patients whose seizures stopped when their Crohns symptoms stopped. Before you can say 'this is true' you need to have more than a belief that it's true--you need to have evidence, background knowledge, and an approach that begins research with a mind that is open to all possibilities, even those you aren't hoping for.

 

[Keith]

OK, let's continue the exploration together then, shall we? All the major gut diseases list seizure as symptom.

Take a look at this 2013 paper: Epilepsy Associated with Systemic Autoimmune Disorders
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3639560/

Especially interesting are the sections about Crohn's and Celiac disease.

In isolated patients with celiac disease and epilepsy refractory to AEDs, seizure control has been obtained with a gluten-free diet.

http://www.ncbi.nlm.nih.gov/pubmed/17122729

There's plenty of evidence the scientific community has picked-up on the relationship of epilepsy to the gut. I wonder what it will take for epileptics to follow suit and begin paying attention to their intestines. It would certainly help if neurologists knew the first thing about it. I've spoken with a famous one who still believes the brain controls the gut, never considering otherwise.

The vagus nerve is intimately associated with and part of the GI organs.

 

[kirsten]

OK, let's continue the exploration together then, shall we? All the major gut diseases list seizure as symptom.

http://www.ncbi.nlm.nih.gov/pubmed/17122729

You've misunderstood your text. The article says "Brain involvement commonly causes seizures," and not that the gut symptoms themselves cause seizures. To explain, these diseases have an inflammatory element, which causes damage to the brain. Others mentioned cause seizures, but not epileptic seizures or epilepsy. In the section about Crohns that you highlighted, epilepsy occurs in 3.5% to 5.9% of patients--an insignificant number and one that is most likely related to demyelination, typical in Crohns.

Your second study is of one patient--anecdotal evidence.

There's plenty of evidence the scientific community has picked-up on the relationship of epilepsy to the gut.

And yet you haven't yet offered any. I'm more than willing to look at the evidence if it is there.

 

[Keith]

There are 19 pages of discussion and links in this thread. I'm certain you can find the evidence you seek.

Here's a fact: gut microbiota affect brain development and behavior.

A few more links, thanks for inspiring research:
http://link.springer.com/article/10.1007/s10072-011-0629-x
http://onlinelibrary.wiley.com/doi/10.1111/nmo.12076/abstract
http://www.sciencedirect.com/science/article/pii/S1873994612001018
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3579055/
http://www.pediatricsciences.com/oj...age=article&op=view&path[]=482&path[]=pdf_172

So far, you haven't believed constipation may predict seizure or that the vagus nerve reaches the intestines. I hope I've demonstrated otherwise. No one's attempting to get people to toss their meds, but merely look at possible gut-origin of seizure disorders when modern medicine doesn't even try. Even the misunderstood ketogenic diet is about shifting gut flora, not raising ketones to fuel the brain.

 

[Keith]

I believe small intestinal fungal overgrowth (SIFO) is underdiagnosed. Fungi produce ethanol and acetaldehyde which somehow interferes with thiamine (vitamin B1). Thiamine deficiency is known to cause problems/damage in the vagus nerve.

Ethanol is also implicated in hypoglycemia by causing amplified insulin secretion. This is why drinking alcohol and epilepsy are not a good mix. But people can also "brew" alcohol in their guts due to yeast overgrowth.

 

[kirsten]

There are 19 pages of discussion and links in this thread. I'm certain you can find the evidence you seek.

Here's a fact: gut microbiota affect brain development and behavior.

http://link.springer.com/article/10.1007/s10072-011-0629-x
http://onlinelibrary.wiley.com/doi/10.1111/nmo.12076/abstract
http://www.sciencedirect.com/science/article/pii/S1873994612001018
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3579055/
http://www.pediatricsciences.com/oj...age=article&op=view&path[]=482&path[]=pdf_172

So far, you haven't believed constipation may predict seizure or that the vagus nerve reaches the intestines. I hope I've demonstrated otherwise. No one's attempting to get people to toss their meds, but merely look at possible gut-origin of seizure disorders when modern medicine doesn't even try. Even the misunderstood ketogenic diet is about shifting gut flora, not raising ketones to fuel the brain.

You haven't demonstrated otherwise and I have demonstrated why and how your citations don't stand up to scrutiny. You've yet to acknowledge or answer the questions I've raised about your research. In these sources, again, you've failed to understand the etiology of these GI diseases and their influence on neurology. You've also failed to read the parts of the citations where neurological consequences and their reasons are listed without epilepsy being on those lists.

In actual fact, your citations here do the opposite of what you want them to--they prove that epilepsy does have its origins in the brain. As mentioned earlier, your source about Crohns refers very specifically to neuropathy "[being] axonal or demyelinating [2,5]" They list the precise neurological disorders related, their extreme rarity in those with these conditions, and that they are caused by inflammations, encephalopothies, and demyelinisation, all of which directly damage either the nerves themselves or the brain.

Your citations also show us that scientists and the medical community are, indeed, looking into the relation between neurological conditions and the gut. And yet they've turned up nothing they didn't know already, as explained in the paragraph above. A cursory search on google for the gut origin of seizures turns up two topics, one here and one on the Epilepsy Therapy Project's page, both of which are written by you. That tells me quite a lot.

In terms of your not wanting anyone to stop their meds, people rarely have negative intentions. That seldom gets in the way of the consequences. It is up to us to carry the full weight of our responsibility, without hiding behind our positive intentions. You are implying that epilepsy has its roots in the gut rather than the brain. Anticonvulsants, lobectomies and VNS all treat the brain. You're drawing focus away from those (highly effective) treatments. That is the long and the short of it. Let me give you a personal example:

My mother had been feeling ill so she went to her homeopath, who did a heavy metal screening and told her that she had heavy metal toxicity and that chelation therapy would cure her. He had positive intentions. He really believed that his diagnosis was on the mark and that nothing else was wrong. He didn't tell her not to go to the doctor to rule out other potential causes. He simply drew her focus onto the treatment and diagnosis he believed in, much as you are here, albeit on a far more public forum that exposes far more people to your concepts. What followed was five years of periodic chelations and detoxes, which made her feel more sick than when she had first seen the homeopath. Almost three years ago, she fell and hurt her back, which led her to a medical doctor who performed a PET scan, only to find that she had been suffering from breast cancer for all those years. It had now spread to her liver, her spine, sacrum, and lymphatic system. Breast cancer, caught in the early stages, is highly treatable. Hers was in the fourth stage and was thus incurable. A few months from now, she will be dead, at the age of 57.

Medical ethics can be compared with taxi driving when it comes to discussions about positive intentions and certainty. Many fine taxi drivers end up in fatal car accidents. That is par for the course. Everyone makes mistakes. However, when a confident but incapable driver gets into a taxi and causes an accident, it is not only unethical, it is criminal.

 

[kirsten]

There was a particularly elegant study that I think is pertinent to this discussion. Geschwind syndrome is a long list of personality characteristics that were described in the Seventies and were claimed to be present in all patients with temporal lobe epilepsy. The 'symptoms' of the syndrome included deep philosophical thought, hypergraphia, hyperreligiosity, and some thirty other traits. There are still many proponents of Geschwinds, but a group of scientists undertook a massive study, which was intricately described in a book. But the study's methodology was simple to the extreme: They counted how many temporal lobe epilepsy patients had all the traits of Geschwinds, how many had some of them, and how many people without epilepsy had traits of Geschwinds. Since they found no TLE patients with all Geschwinds traits, and many TLE patients who had none, and many without epilepsy who had several Geschwinds traits, the conclusion that there was no evidence to support Geschwinds was clear.

80% of people suffer from constipation at least once in their lives. IBS affects 3 to 20%, and 5% of Crohns patients suffer from neurological symptoms (epilepsy not specified). Yet only about 5 in 1000 people suffer from epilepsy. The statistics alone are enough to cast aside any concepts of constipation being a precursor to epileptic seizures. If constipation was a precursor to seizure, all 80% of the population who suffered from constipation would have seizures. If Crohns disease was an underlying condition in all with epilepsy, all Crohns sufferers would have epileptic seizures, whereas only 5% suffer from broader neurological symptoms. We don't necessarily even need to look at the etiology of the GI tract issues you've highlighted. The statistics say it all.

 

[MAB]

I had already bought Chelated Magnesium -- that was what was available at my local pharmacy.

I'm going to try to get down to the pharmacy today (the streets are a bit flooded right now, so waiting for the storm to pass over) and see if they carry probiotics. If not, I think the pharmacist will order it.

The reason I wanted the Nutritionist to order it, is I need to get a formula that's low in carbs. But I think the Pharmacist can help with that as well.

go to a good heath food store. I'm sure they can help you. Frequently the best probiotics are kept in a refrigerated case in the store. The doctor told us my autistic grandson needs at least 5 billion per day.

 

[Keith]

Another important area I've been learning about associated with gut health and microbial balance is hormonal balance. Here's a paper about estrogens and seizure:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2909015/

So, how do microbes affect estrogen levels? They produce enzymes such as beta-glucuronidase which recirculates estrogen rather than excreting it.
http://www.translational-medicine.com/content/10/1/253
http://www.poliquingroup.com/Articl...ticle/586/Gut_health_and_excess_estrogen.aspx


Some types of bacteria such as proteobacteria eat estrogen:
http://tamutimes.tamu.edu/2013/05/28/estrogen-eating-bacteria-safer-water/#.UvgWNnewLXG

I've also become more clear about why estrogen is associated with fungal overgrowth, not because fungi eat estrogen, but because estrogen stimulates glycogenesis and fungi eat glycogen. Fungi produce ethanol which can amplify insulin secretion causing hypoglycemia, a well-known cause of seizure.

It seems powerful to know hormonal and microbial levels in order to make dietary decisions which would shift flora in the right direction for hormonal balance. For example, many of the enzymes causing imbalance may be in the family of Firmicutes, specifically clostridia. To lower this group may mean eating more meat and less carbs, however, too much meat would raise Bacteroides associated with gut disorders. But this may be one of the keys to success in the ketogenic diet where flora shifts away from Firmicutes and toward Bacteroides. This is called the Firmicutes/Bacteroidetes ratio, also studied in the field of obesity and diabetes.
http://www.nature.com/nature/journal/vaop/ncurrent/full/nature12820.html
http://www.npr.org/blogs/thesalt/20...d-dairy-alters-gut-bacteria-a-lot-and-quickly

 

[RobinN]

Keith: What about people who have seizures as a result of hypoglycemia, but do NOT have photosensitive seizures?

Lindsay - We believe this is why Rebecca's seizures began. Once we balanced her blood sugar levels, it appears to also have balanced her hormones, and seizures stopped. She still does monitor her glucose levels though.

She is not photosensitive.