Exploring the Gut-Brain Connection and Photosensitivity

[KarenB]

Hi Janus -- Coq10 is part of Jon's vitamin/supplement regime -- he uses the Nutrivene D formula, which has lots of goodies that seem to be helpful for epilepsy, as well as good immune system (when we cut back on it once, his seizures got worse). I also recently started taking it for myself, as my blood sugar is higher than I'd like (altho not in diabetic range)

I'm wondering about a connection between your high blood sugar and seizures? If, perhaps, fluctuations in blood sugar (either high or low) could be triggering seizures? (this was certainly the case for Jon prior to initiating the Keto diet -- also temporal lobe seizures). You mention being a vegetarian, but wondering about your carbs, and if the ones you consume are high fiber (and thus more slowly absorbed, which is better for the blood sugar)?

When Jon was at the height of his gut issues and horrible photosensitive seizures, we found that a combo of the Ketogenic diet (which he was already on) and the Select Carbohydrate diet to be helpful. The Select Carb diet (which was developed to combat Colitis & Crohns and seizures related to it) eliminates most grains, but legumes are permitted. Also sugar. They explain the science behind the "allowed" and "forbidden" and "ok when you're not having a flare-up" foods on their website.
http://www.breakingtheviciouscycle.info/

It seems that the diets most effective in controlling seizures (Ketogenic, Modified Atkins, Specific Carb, LGIT) all reduce or eliminate sugar and grains, and promote a low glycemic index -- which is good for both metabolic issues as well as gut issues (esp. small bowel)

 

[MAB]

Hi Janus -- Coq10 is part of Jon's vitamin/supplement regime -- he uses the Nutrivene D formula, which has lots of goodies that seem to be helpful for epilepsy, as well as good immune system (when we cut back on it once, his seizures got worse). I also recently started taking it for myself, as my blood sugar is higher than I'd like (altho not in diabetic range)

Does Jon take the CoQ 10 for seizures or just general heath? I told my neuro I took 100mg of CoQ 10 everyday and she suggested I increase it to 300mg. She must think I am rich but I take 300mg every day now.

 

[Janus]

Hi, I just use Coq10 because i have been warned that blood pressure meds deplete it and we really need it. A nutritionist told me we probably don't get enough in our food.

 

[Janus]

Oh yes i see the weird issue with Why is
Coq10 so over priced?

 

[Keith]

Janus, what type of TBI did you suffer in the 80s? Do you know which part of the brain? You also seem to have a few metabolic issues with blood pressure and high cholesterol indicating gut flora imbalance. How about glucose regulation? Is blood sugar stable?

Most neurologists would say the brain controls the gut without ever considering the opposite.

 

[KarenB]

For Jon, the COQ10 is one of the supplements that's included in his Nutrivene formula. He's been taking the Nutrivene for years, but I think that the C0Q10 may have been recently added in last couple years. (the Nutrivene vitamin/supplement formula are powders or capsules -- originally formulated for kids with Down Syndrome who have lower immune systems and issues with high oxidation in the brain). The Nutrivene has gotten increasingly expensive -- to the point that we almost stopped purchasing it. For ourselves, my husband and I purchase our supplements through Piping Rock -- they have reasonable prices -- esp. their catalog prices, which are often significantly lower than the online prices. I also use bitter gourd to control blood sugar (in Asia I just ate it fresh but hard to get it here) -- the Chinese rave about the health benefits of this vegetable.

When Jon was having a lot of seizures back in the Fall of 2012, we saw blood sugar readings that were unusually high -- kids on the Ketogenic diet normally run in the 60's and 70's range, and he was up in the 90's consistently, and even over 100. Of course, seizures and illness and other stress can raise blood sugar, but we were seeing high readings even when he'd not had a seizure in awhile and didn't have any illness of which we were aware. I was suspecting some sort of autoimmune disease. At any rate, the gut issues were cured back in December 2012, and by the end of January 2013 he became seizure free, and has remained so since, except he had a couple small seizures related to anesthesia for a procedure done in September 2013 (just as they were putting him under, and then again as he was in recovery). His blood sugar levels have been in a normal 60 to 70 range since last summer.

 

[Keith]

Karen, I wonder if the high blood sugar levels were result of microbial toxins and/or lipids causing insulin resistance. As we discussed, the LPS toxins are also known to cause leptin resistance which dysregulates histamine receptors associated with hypothalamic inflammation. These toxins are product of gram-negative bacterial overgrowth in the small intestine (Bacteroides).
http://www.plosbiology.org/article/info:doi/10.1371/journal.pbio.1001212

My continued prayers for his remaining seizure-free . . .

 

[KarenB]

Yes, Keith, that's entirely possible. His pediatrician (we found one who specialized in GI issues/nutrition) thought he probably had bacterial overgrowth, and treated with zinc and occasional rounds of probiotics and also simplifying his diet for a while (apparently gut inflammation can trigger food intolerances/allergies). We tried the zinc first, and saw an immediate improvement in appetite, reduction of diarrhea, and general overall health, along with fewer seizures. The first dose of probiotics produced a big cluster of seizures -- perhaps from toxins from bacteria/yeast die-off, but we waited a couple days, and then continued with the probiotics, and had no problems with them after that. Jon continues taking zinc daily, but hasn't had to use probiotics in some time.

Lipids are also a possibility, as those levels have been a bit off.

Jon has a 24 hr EEG today/tomorrow -- as we're going to need to make adjustments to either his med (Zonegran) or to the diet if everything looks pretty quiet. He's had chronic acidosis since starting Zonegran -- which can lead to bone loss, kidney disease, etc. So, we either need to wean the Zonegran (further -- already reduced from 250 to 150) or lower the diet ratio.

 

[Keith]

Karen, I don't understand how Zonegran causes acidosis, but the drug's mechanism of action itself isn't really known. I wonder if acidosis is part of what makes it effective as the brain halts seizure by raising acidity. I'm researching use of niacinamide and OptiMSM in this situation should you decide to lower dose of Zonegran. They're both natural components of the body with broad application including as anticonvulsant.

 

[Janus]

Hello again. Keith, i had a closed TBI at 50 miles per hour into a tree with no helmet and ensuing coma. This resulted in several other comas in the following few years from spinal meningitis before we found the un-healed skull crack. It seems so odd that the neuron coating which aids in neuron transmitting is lecithin, the transmitter that causes my seizure activity. I am finding ionic magnesium beneficial and i am interested in MSM and niacinamide. BTW i had for years suffered from chronic acid stomach as well as general fatigue. That is behind me now and i am not sure why. Lecithin is a big problem for me and i read of a study at M.I.T. where the found that supplements of lecithin given to rats diminished their seizure threshold. And yet the docs all say i am crazy for thinking that is relevant.

 

[KarenB]

Keith -- I don't know either, but the interesting thing is that the ONLY 2 meds that have ever worked for Jon are Topamax (which stopped working after 4 years) and Zonegran -- and both these drug cause acidosis. As does the Ketogenic diet, to a certain point. So, it seems that whatever causes Jon's seizures seems to respond well to therapy involving acidosis. A mild form of acidosis would be acceptable -- say bicarb levels in the 19-22 range. But, deeper acidosis can cause kidney stones, bone loss, heart palpitations, and even can be fatal.

Jon gets niacinamide in his Nutrivene formula. His EEG will be done in about an hour, and then it'll be about another day before we hear the results. I think his doc is leaning toward lowering the diet ratio rather than reducing the Zonegran any more at this time.

 

[Keith]

Karen, that's good insight. Keep in mind the niacinamide dose in Nutrivene is quite low. I've read niacinamide can potentiate some anticonvulsants and allow for lower dosages. My general understanding about MSM is the sulfur raises acid in the gut which then secretes bicarb into blood. Then there's inverse relationship between blood and brain pH via acid shearing by the blood-brain barrier. But I've also read brain pH is roughly correlated with blood pH via sensors of the brain stem, so there's conflicting info. But the sulfur also makes glutathione work, so is anti-inflammatory and it's also antimicrobial (sulfur is the world's oldest antifungal). I like OptiMSM because it's the pure form made via distillation, but it also has to be used in therapeutic dose which most people don't do . . . my guess is at least 10 grams daily in three divided doses.

By the way, I believe niacinamide does raise acidity as it raises NAD which fuels the Krebs cycle which kicks-out CO2. It's the raised CO2 which seems to give it its transient sedative effect.

Janus, that is heavy-duty. Obviously, you're lucky to be alive, no wonder you seem to live with such grace and humor. Ever research hyaluronic acid? It's supposed to coat nerves and is a ubiquitous part of the body. I wonder if that would help in your situation. It's extremely relaxing, so don't operate farm implements while using it. Best before bed, I think. I wonder if added sulfur would help in your healing process, it's a building-block for so many things including bone, muscle, connective tissue and GAGs (glycosaminoglycans, key in brain development and spinal cord injury repair, but sometimes the opposite approach is used to stimulate brain plasticity by using enzymes which break down GAGs).

 

[Janus]

I will look for hyaluronic acid to see what may happen and at what costs. My next question is about N-acetyl cystein and is that what causes rage attacks? I think once i tried L-glutathione caps and was energized but had uncontrollable rage attacks. I know it is used as a remedy for acetomenaphine over dose in hospitals but i thought i read it is good for brain cell repair. What say you? Thanks again for sharing your wisdom.

 

[Janus]

OH, and thanks for the MSM tip. I am now taking it for first time as a good sulfur addition for vegetarians. We will see on that one.

 

[MAB]

I will look for hyaluronic acid to see what may happen and at what costs. My next question is about N-acetyl cystein and is that what causes rage attacks? I think once i tried L-glutathione caps and was energized but had uncontrollable rage attacks. I know it is used as a remedy for acetomenaphine over dose in hospitals but i thought i read it is good for brain cell repair. What say you? Thanks again for sharing your wisdom.

My neuro thinks it's great that I take N-acetyl cystein. They also use it for lung problems in a hospital setting. But I think it's in a vapor form, maybe with a nebulizer. I take it hoping it will help undo some of the damage I did while I was smoking. I'm a bit prone to rage attacks and I personally haven't seen any increase since I've been taking it. I think I have been taking it for at least a year.

Neuro was also happy to see that I take probiotics, fish oil, curcumin, co-q10, magnesium, PPQ, acetyl-l-carnitine arginate. She even recommended higher doses of some of the supplements.

When I just recently saw my regular doctor, she asked what the neuro said about my supplements. When I told her the neuro was pleased and even recommended higher doses for some of them she seemed surprised and said "Oh, okay. good". like she thought we were both nuts. She is the one that recommended the neuro so I think she trusts her opinion.

 

[MAB]

Oh yes i see the weird issue with Why is
Coq10 so over priced?

I have sweetest boss. He is very into supplements (and serious weight training and bike rider) so sometimes we talk about different supplements and workouts. Once in awhile he even buys me bottle of something to try out. The other day I told him how my neuro suggested I up my CoQ 10 to 300 mg. I told him she must think I am rich. Next time he dropped by to talk, he handed me a $75.00 gift card for supplements. He is a very kind guy at times.

 

[Nakamova]

Hi MAB, is "PPQ" the same as "PQQ"? I think PQQ is considered neuroprotective and can [potentially] improve memory and attention. There hasn't been significant research to confirm the cognitive benefits, but just anecdotally, have you found that it has made a difference?

 

[MAB]

Hi MAB, is "PPQ" the same as "PQQ"? I think PQQ is considered neuroprotective and can [potentially] improve memory and attention. There hasn't been significant research to confirm the cognitive benefits, but just anecdotally, have you found that it has made a difference?

Yes, I actually meant PQQ. I proofread everything before I post and I can't believe some of the errors I still make.

 

[Keith]

Janus, here's a connection to lecithin as seizure trigger with gut bacteria: gut bacteria degrade lecithin to choline which is then converted to nitrosamines:
http://www.biochemj.org/bj/122/0028/1220028Pb.pdf

Wondering if you may have a clostridium overgrowth which can be detected using PCR stool analysis.

I recently saw a paper I can't find at the moment talking about an enzyme needed to slow cholinergic transmission to improve face blindness in autism.

 

[Keith]

Janus, here's another connection to lecithin as seizure trigger I'm just now learning about: cortisol receptors. Have you ever heard of the supplement Phosphatidylserine?

By far, the highest amount of phosphatidylserine in food is soy lecithin.
http://en.wikipedia.org/wiki/Phosphatidylserine

Phosphatidylserine is said to repair cortisol receptors in the hypothalamus. But there are also intracellular cortisol receptors in all cells, it seems.
http://www.sciencedirect.com/science/article/pii/092012118790043X
http://www.sciencedirect.com/science/article/pii/S0006899312003927

People are using phosphatidylserine to lower cortisol, but it also apparently applies to people with already low cortisol. I wonder if this would be a good thing for you given your sensitivity to lecithin.

Note: what causes high cortisol? Bacterial toxins are known to stimulate cortisol secretion. LPS stimulates cortisol release:
http://press.endocrine.org/doi/abs/10.1210/en.2004-0882