https://www.livanova.com/epilepsy-vnstherapy/en-gb/hcp/produ...
It has really helped although obviously it took surgery and then also nine months of slowly tweaking the settings.
Before the VNS they could (for example) not go on a trampoline for more than a few minutes without having a seizure, but now they're fine all day. They did still have seizures at night after the VNS but we tackled those with a different treatment.
The Sentiva 1000 sends regular soft pulses (for one minute every 3.5 minutes) and can also react to heart rate rising suddenly (which might mean a seizure) by automatically increasing its pulses. During a seizure if we want to manually activate the device we swipe over its location with a strong magnet and that activates it to send stronger pulses for a minute or so.
Batteries last about eight years. A few times a year we go to check the battery, the nurses have an ipad and a wand-type thing that they hold over the implants location, it uses some sort of low power NFC to read data and diagnostics from the implant. When we do need to change the battery that will be an operation. But less complicated than the initial operation (and even that was in-and-out in one day)
All pretty amazing.
Really happy to be proven wrong!
It seems that stimulating the vagus nerve resets something to default in the brainstem when a cascade event is about to occur - probably shuts down the errant signals from propagating to the entire brain ???.
Do you know which lobe in her brain it happens ??? (my daughter has left temporal lobe)
The VNS can help stop seizures but also there's a sortof long-term effect from just having it firing every few minutes all the time, seems to re-train the brain in some way. I'm not sure if they really know how it works, just that it seems to help.
Another non-medication treatment that was very good for us was the ketogenic diet. Like, hardcore proper ketogenic diet, 4:1 ratio, prescribed and monitored by an NHS dietician. Every meal measured out by the gram. Its hard work but it did work very well. Its been properly researched - https://pubmed.ncbi.nlm.nih.gov/16146451/ https://pubmed.ncbi.nlm.nih.gov/25524846/ - for Dravet syndrome at least, keto is as effective as the best AEDs with fewer side effects.
Then once its all healed they turn the device using nfc wand thing and then slowly increase the power bit by bit over several months. There are various timing and frequency settings that can be experimented with.
Chemistry: Lithium carbon monofluoride
Voltage: 3.3 V, open circuit
Rated capacity: 1 Amp-hour
Self-discharge rate: <1% per year
Its a tiny non-rechargeable battery presumably carefully picked for safety and very slow usage over several years.
I suppose the main barrier to wireless charging of implant batteries would be heat - wireless charging generates heat. And when something goes wrong with wireless charging it can generate a lot of heat. So I guess its risky? But then surgery to change a battery is also a significant risk.
Also I guess someone would have to go through the long process with the FDA of getting it all approved, whereas (at a guess) people designing implants try and use already-proven components and techniques where they can to make approval more likely.
Breath: The New Science of a Lost Art https://www.amazon.com/Breath-New-Science-Lost-Art/dp/073521...
and
Altered Traits: Science Reveals How Meditation Changes Your Brain https://www.amazon.com/Altered-Traits-Science-Reveals-Medita...
Linden was emphatic about how science requires a mechanism of action, and that when people refer to this potential effect against cancer as due to “alignment of chakras” or whatever, it is “bullshit” to use his word.
I get where he’s coming from, but on the flip side, the benefits of meditative practice were arrived at long before science took any note of them. In fact for many years, the scientific perspective on it was that it was entirely bullshit. Meanwhile the people who were (admittedly incorrectly) talking about chakras were delivering real benefits to their followers. As such it seems to me that more respect is warranted, and perhaps even more caution. What do you think?
1 https://hubermanlab.com/dr-david-linden-life-death-and-the-n...
The chakras thing, or any other mystical model, is only a low-resolution model. It's useful to point you to a correct belief, but we have to be careful not to get too invested in wrong reasoning. Or else you end up with a system of beliefs which may be mostly wrong - ie, "If my X chakra does this for me, I am sure my Y chakra does that for me," - when what you may be looking for is a completely different phenomenon.
I don't think this is correct. Science is based on empiricism. Of course we'd like to understand the mechanism of action, but it's not strictly required for scientific description of some aspect of reality. For example, Kepler's laws were derived from the observed paths of the planets — it was only later that these same laws could be explained with recourse to the theory of gravity.
0: https://www.amazon.in/Kundalini-untold-story-Om-Swami/dp/818... 1: https://news.ycombinator.com/item?id=6910041
https://en.wikipedia.org/wiki/Stanislav_Grof
https://www.amazon.com/Holotropic-Breathwork-Self-Exploratio...
I'm a bit surprised that we don't have more criticism of this book. It was less of a pop science book, and more of an anecdotal gonzo journalism.
There's now a sleep apnea implant available, which also functions based on nerve stimulation, and is apparently quite effective. It's still a bit large, so not ideal for those of us who can deal with a CPAP, but in another 10 years maybe I can stop using my CPAP and just get a relatively straightforward surgical procedure every 5-10 years. I'd absolutely do it.
Still, better than keeping her up with my incessant snoring, I guess.
That said, you’ll want to go to a dentist who specializes in sleep apnea and is able to test / fit the oral appliance properly. (Source: father is dentist who specializes in TMJ pain and sleep apnea).
Seems like the 3d scanning my kids had for their braces, plus 3D printing could make it less expensive, at least for a prototype device to just try.
I should try that "tape over the mouth" thing to see if it helps, particularly as I'm super mild apnea, but I'm expecting it won't really work with my beard.
When I started investigating it (my coping mechanism during panic attacks) I discovered that the vagus nerve travels next to the esophagus through the diaphragm.
So my complete layman explanation was that the stomach pushes through the diaphragm during a hiatal hernia -> it rubs against the vagus nerve -> panic attack symptoms.
I might need to add the study of vagus nerve to "why haven't we studied this about the human body more" -list along with gut bacteria composition.
It has also been used quite extensively to combat post-covid neuropsychiatric symptoms.
I think the link here is that increased LPS/endotoxin production by your microbiota can induce acid reflux, cause neuroinflammation and psychiatric symptoms. Low acid production itself can result in a more inflammatory microbiome further exacerbating the problem. Long term fix would be working on the migrating motor complex, improve motility/gastric emptying and rebalance the microbiome by reducing gram-negative bacteria/pathobionts and increasing butyrate production via selective feeding. [I'm not a doctor, this is just the direction I've been working on things myself]
Can you share any relevant resources or ideas you've gotten on reducing the opportunists and increasing butyrate production? I've coaxed and cajoled my MMC and other digestive processes back into shape, or so it seems, but am struggling on the microbiome angle. It's tricky because the list of foods that trigger symptoms is insanely long, so it's hard to get creative and experimental as far as that goes.
Eventually after much reading I read that without enough stomach acid, food backs up and causes reflux. It also causes the LES to not close properly. So I started taking Betain HCL and Digestive Enzymes (Solgar ones) before I eat and I can't tell you what a difference it's made. It's so amazing. I get 0 symptoms and I also feel so much better generally.
I honestly encourage you to try this. The medication for this stuff just has it the totally wrong way around. I can't believe this stuff is given out as one of the most commonly prescribed drugs in the UK at least.
Basically if I eat stuff that digests slowly (fats and red meat), it takes my stomach a LONG time to actually break it down and move it forward. If I shove more stuff in there before it's done -> bad time.
I lost over 10kg during the worst episodes in about 9 months, I lived pretty much on rooibos tea (even green tea irritated my reflux), white rice and mildly flavored chicken.
In related information I've found that fortified yogurt helps not only my reflux but also improves my mood. But it never seemed to be enough to actually solve the reflux problem.
Just ordered the supplements. Truly hope this solves the problem.
Whoa I just realized that I have a hiatal hernia too. I didn't realize that's what that was. I hope this is a day of solutions!
Six months into COVID I hadn't experienced anything at all on what would have been 1-2 monthly flare ups. Once I had the realization I put it all together.
When COVID hit I had restarted taking a multivitamin and some extra iodine (which is involved in stomach acid production, as it turns out). I had thought my diet was pretty healthy, but as it turns out there was something I wasn't getting enough of. I still don't know what. But I keep up with it and I don't have symptoms.
1) Don't have an empty stomach. My stomach goes crazy. 2) Don't overeat. Large portions cause it nearly every time. 3) Don't eat anything within 2 hours of bed time.
So, basically, if I eat small meals often I am usually fine. And then there are trigger foods like too much coffee and alcohol and red sauces, and garlic and other things that cause indigestion.
It'll feel like a Tai Chi master is doing the Two Finger Death Touch on the right side of your diaphragm, but aside from that feels just like a panic attack.
Have you found any additional solutions, past the standard PPI and diet for acid reflux?
Thanks!
I have diagnosed EoE, I've had it for my whole life. I'm currently on 80mg omeprazole daily and an elimination diet. This helps a lot but is not a cure. I've also experienced benign heart palpitations for my whole life (confirmed by a cardiologist). For a long time, I've had a hunch that the two were connected.
On days when I have EoE flare-ups, I feel some pain and swelling in my esophagus, as though I have a bad chest cold. Food and liquids tend to linger in my esophagus for longer. Another unusual side effect is that, on days when my EoE flares up, I tend to experience frequent heart palpitations, most commonly right after consuming food or water.
Since the vagus nerve travels through the chest, adjacent to both the heart and the esophagus, I think the mechanism of action is this: the inflammation in my esophagus stimulates the vagus nerve, making a palpitation more likely. This inflammation also causes food and liquid to travel through the esophagus more slowly, which stimulates the vagus nerve further. The combined stimulus from inflammation and food or liquid can irritate the vagus nerve enough to cause heart palpitations.
Obviously I would like to cure both my EoE and palpitations, as they're currently the two biggest detriments to my quality of life. And inflammation due to an overactive immune system is the cause of EoE. So the possibility of reducing immune system inflammation just by stimulating the vagus nerve is very appealing to me.
If anyone reading this has an experience, opinion, research, suggestion, or anything they'd like to share, I'd love to hear it. I'm going to experiment with baking soda and famotidine to reduce inflammation, since I read in the above threads that either of those could work. But if there's some simple hack I can employ to reduce my symptoms (meditation/breathing technique, physical exercise, a stimulation device I can buy, some additional OTC medication I can take, etc), I love to hear it.
Large amounts of red meat is bad, because it just doesn't digest properly, I might burp in the evening and still taste my lunch sausage...
Metamizole is the only one that helps in the extreme cases (panic attacks), but luckily I don't get those anymore. I think I've had to take a single pill twice in the last 5 years. It's pretty much exactly 15 minutes from swallowing the pill and then all symptoms go away because it forces my diaphragm to relax and thus drop pressure to the vagus nerve.
Thanks!
Most of my worst symptoms went away after the checkup, but it took a LONG while for my digestive tract to fully heal. I couldn't burp at all for ... maybe two years, the pressure just stayed in my stomach. Drinking small amounts of fizzy drinks and rising on my toes + slamming my heels down got the air out sometimes.
There are still things I can't eat because they instantly irritate my reflux, buttery pastries being the worst ones.
By contrast the adrenal cortex, a little brain on top of the kidneys, automatically triggers fight or flight with threat detection. By the time you realize it your heart rate is already increasing. Breathing slowly, preferably through your nose, counteracts that physiological stress.
See also the last 100 years of research on the autonomic nervous system.
Did these (with supervision) during residency. As far as neurosurgeries go, fairly simple. You just have to be careful when you expose the vagus nerve as it lies between the carotid artery and the jugular vein.
This is in contrast to Deep Brain Stimulation which involves making a hole in the skull, exposing the brain, and inserting electrodes deep within the brain.
Yeah, that's an intense surgery.
The MD doing the implantation was a rockin' bitch-ass motherfucking stone cold killer. Sorry for all the curse words, but that's the best way to describe her. I've never been near someone so dead calm no matter what. Just ice in the veins. She was ~6'5" and wore 6" stilettos all the time. That surgeon had presence. I'd never want to meet her in a back alley late at night.
We were developing a new technique to help out with implantation. One of the hard parts of DBS is knowing where to leave the stimulating end of the electrodes. You want to hit a specific region, but as everyone's brain is different, there's no way to stereotype the process. We had a little optical sensor that we were trying to use to guide the electrodes and see differences in the neuronal density. The place you leave the electrodes is in an area of relatively high density (S. Nigra). Bunch of Fourier analysis, machine learning, and machine vision went into it.
[1] https://www.psychologytoday.com/intl/blog/the-athletes-way/2...
[2] https://www.psychologytoday.com/intl/blog/the-athletes-way/2....
It did a total number on my anxiety levels and pulled me out of the constant cortisol fuelled fight or flight mode I found myself as I slowly crashed and burned into the ground
I wish someone had taught me as a child, it would have made a marked difference on my life, I am sure of it.
eeeeeeeeeeeeeeeeeeeeeee…
https://www.tenspros.com/intensity-micro-combo-tens-microcur...
And then look at a study like https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7199464/table/T... to determine what settings to use for your condition.
https://docs.google.com/spreadsheets/d/1ibnJr6MqhHfpkXXzsKOD...
One might also achieve comparable effects by drinking baking soda.
>"We think the cholinergic (acetylcholine) signals that we know mediate this anti-inflammatory response aren't coming directly from the vagal nerve innervating the spleen, but from the mesothelial cells that form these connections to the spleen," O'Connor says.
>While there is no known direct connection between the vagal nerve and the spleen -- and O'Connor and his team looked again for one -- the treatment also attenuates inflammation and disease severity in rheumatoid arthritis, researchers at the Feinstein Institute for Medical Research reported in 2016 in the journal Proceedings of the National Academy of Sciences.
O'Connor hopes drinking baking soda can one day produce similar results for people with autoimmune disease.
https://www.sciencedaily.com/releases/2018/04/180425093745.h...
Where is the rest of this stuff coming from? Is there a deeper dive?
In other words: there's likely a genetic factor at play much like no amount of training will give you the genetic advantage Phelps has in terms of wing span and lung capacity: https://www.nationalgeographic.com/science/article/olympic-g...
From your link they checked exactly one thing: shivering response to cold following breathing exercises. Both twins did exactly as well on this one test. That's not "most tests". It's one test. And personally, being able to withstand cold is the least interesting claimed benefit of breathing techniques.
This claims to improve language learning through selective non invasive stimulation.
The great confusion with these things is given how the body has a tendency to recalibrate dynamically to new stable levels of stimulation the trick would be finding what sort of on/off routine is needed to create the desired effect.
(2013) "Capsaicin-sensitive vagal afferent neurons contribute to the detection of pathogenic bacterial colonization in the gut"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4188534/
> "We conclude that activation of the afferent arm of the parasympathetic neuroimmune reflex by pathogenic bacteria in the gut is dependent on capsaicin sensitive vagal afferent neurons and that the release of inflammatory mediators into intestinal tissue can be directly sensed by these neurons."
More general current open-source review of the overall topic (2018):
"Vagus Nerve as Modulator of the Brain–Gut Axis in Psychiatric and Inflammatory Disorders"
https://www.frontiersin.org/articles/10.3389/fpsyt.2018.0004...
Sure, it could be 6 months or 6 years before we see real improvements, but no one knows. No one knew that transformers were coming in the months before they arrived.
One thing that I think is encouraging is how fast computing power is increasing, along with languages, frameworks and models which allow you to make use of that power. I think that alone, even without AI, will result in world-changing advancements across many fields. The power to simulate large systems is growing rapidly and will enable prediction and discovery to achieve great societal benefits.
Isn’t inflammation an important process for healing? Too much is obviously bad, but if we go turning it off, won’t that lead to longer term issues?
Shouldn’t we be looking to solve what’s causing the inflammation in the first place?
> Tracey immediately recognised the therapeutic implications, having spent years trying to develop better treatments for inflammatory conditions such as sepsis, arthritis and Crohn’s disease. Existing drugs dampen inflammation, but carry a risk of serious side effects. Here was a technique with the potential to switch off inflammation without the need for drugs.
I don't think anyone wants to switch off inflammation for everyone, all the time or as treatment for everything, but there's treatments where it's desired.
I agree with that theory, but so far we haven't been able to figure out what really causes many auto immune diseases or how to heal them. The current treatment methods involve nasty drugs that turn off parts of your immune system entirely, but also have various other side effects.
If we can adjust the inflammation threshold, we can fix the symptoms while we're looking to solve the underlying problem. Fixing chronic inflammation will probably take a few decades at least, until then I see no reason why we wouldn't treat the symptoms better, especially if it can be done with cheap and relatively non-invasive devices.
So Vagus Nerve signals going to spleen really allows the body to more properly regulate inflammation.
Having more control over it with simpler interventions would be a good thing.
In Traditional Chinese Medicine terms, the spleen has always been described as the cause of chronic inflammatory disease. "Spleen deficiency" the core feature of ulcerative colitis and arthritis f.e.
We’re in a revolution, nerds. Wake the fuck up.
