natural ideas

[lindsayschu2]

Well this is getting to a more philosophical discussion and slightly off the detox discussion originally started, and that is maybe a good thing considering the controversial and emotional nature of this thread. So I'll add onto Ruth's comment because I have always found that topic very interesting. So many of our medicines come from herbal medicinal roots. Aspirin comes from the bark of the willow tree, which was used before commercial aspirin was developed. The cardiac drug digitalis comes from foxglove. Opium comes from poppy. It only makes sense that what they used as medicinal plants over time gets studied to determine the chemical compound that is effective, which is then made in a laboratory setting into something that can be mass produced. That's my only non-controversial contribution to this thread

 

[Bernard]

...
I just want to let you know. Unlike a lot of others I'm very experimental with my epilepsy. ...

There are a lot of people on CWE that have experimented with different approaches - diet, neurofeedback, acupuncture, aromatherapy, etc. When I created this forum (almost a decade ago!), I was very vocal about my wife's experiments with various approaches. I encourage people to explore their options (safely!).

...
I have a theory that a fitter and healthier we are and the less toxins we carry in our blood stream we can naturally control epilepsy. ...

It's quite possible that this is true for some people, but remember that "epilepsy" is an umbrella term encompassing a wide spectrum of conditions. Have you seen some of the more ... "information dense" discussions in the forum on this topic?

http://www.coping-with-epilepsy.com...-gut-brain-connection-photosensitivity-22787/

http://www.coping-with-epilepsy.com/forums/f22/does-tryptophan-help-prevent-seizures-5183/#post57089

...
Don't be so negative you lot, stand up and fight. Always look for a better way. There's always a better way.

Cry babies!!! LOL

This is where you lose people. Epileric is CWE's resident skeptic. He butts heads (politely) with folks who promote ideas that haven't yet passed through the crucible of medical science (completely). As I have told others (Keith, Robin, etc.), don't let his disagreement discourage or stop you. When ideas are challenged, there is opportunity for exploration and learning. Let's not devolve into challenging people personally.

Yep and clearly joking isn't on his forum.
...

http://www.coping-with-epilepsy.com/forums/f21/cqs-10242/

Generally, it's not perceived as a joke if it comes at the expense of the ones you are trying to humor.

please lock this up.

This thread still has potential for exploring the issue that ammeread raised in the OP. What relationship does toxicity (and/or the body's auto-immune response to same) play with respect to seizures/epilepsy.

I know there are specific case issues along these lines that have been posted over the years. Here's one:

http://www.coping-with-epilepsy.com/forums/f23/systemic-candida-causing-seizures-2915/#post25115

 

[Janus]

OK I know i've said this before, it is worth repeating, especially here. that there is a great , honorable, icon, that has brilliant things to add and maintain a life saving tool. Mr Bernard, has once again spot on. succinct and eloquent. Thank you again.

 

[Ruth]

Hi Ammeread, I want to welcome you to the forum.

I hope you will continue this thread. Bernard is a friend to everyone here. You can contact him anytime by PM or a Visitor message.

Bernard started this forum out of love for his wife Stacy. That love permeates throughout the whole forum.

 

[Janus]

Speaking of 'natural healing' (for lack of a better term). I am curious about a subject i introduced a bit ago and no one has mentioned it or replied? The possible healing properties of psychedelic mushrooms. I know there is potential (theoretical) danger here but with the science behind the physiological/psychic healing results shown in science. The FDA says no, is that why they say it is illegal to have RAW milk? Here i have local raw milk every day. many of us do, for years. The FDA says "you may get Polio! or other terminal diseases. Its really the dairy industry that said that and paid the house to let them take the market even though they just got permission to put aspartame in milk and not label it. As a scam that people will like it and have more, ie better bones. And what does a nutritionist say about that? Or about fluoride ? osteo-fluorosis ?

 

[lindsayschu2]

I think you are taking your chances with anything like that. You MIGHT have a good experience--or you might have a very high anxiety, panic ridden high that causes massive seizures. No one knows how they are going to react to those drugs during any given use--even if you've used it before, you could still have a really bad high because of the paticular batch, particular circumstance, whatever. Once you have taken them you are stuck with the result for hours. That's my two.

 

[epileric]

Speaking of 'natural healing' (for lack of a better term). I am curious about a subject i introduced a bit ago and no one has mentioned it or replied? The possible healing properties of psychedelic mushrooms. I know there is potential (theoretical) danger here but with the science behind the physiological/psychic healing results shown in science.

It is true that psychedelic mushrooms have been shown to be relatively safe http://www.sciencedirect.com/science/article/pii/S0273230011000080 for people without chronic medical issues but I have seen no scientific claims regarding the physiological or psychological (I'm assuming that's what you meant rather than psychic) healing. Nor is there any reason to think that speeding neural firing can in any way have a positive effect on seizures or epilepsy. I'd be curious where you got the idea they might help epilepsy.

 

[ammeread]

Bernard .I'm not gonna go into the whole joking thing. It is what it is. Generally when you see a at the end of a sentence as you did after my comment it's meant as a joke.

I'm not gonna any longer waste time discussing peoples hurt feelings it's on the internet, it's something typed out ,it's no basis to pass judgement on what anybody meant by a comment. People are different , people are individuals , what some find a joke others don't and vice versa. People with epilepsy bang this drum constantly that everyone's individual. Yeah they are, that doesn't just apply to epilepsy, it's life . Get over it move on and let's have a sensible discussion.

I'm certainly aware that people have suffered from E worse than me. That is not the issue.

The issue is this. People go to a doctor the doctor knows one way of treating any illness. Chemicals! Treat problems with chemicals. I disagree.

Acupuncture, acupressure, natural cures are the way to go. We learn them by trial and error.

It's called micro evolution.Micro evolution has brought about more epidemics and more problems than it has advantages. We have new diseases popping up left right and centre. Because man always think he knows a better way. A person can't sleep, they give them a sleeping tablet . Now the person can't wake up , they add another tablet to help them wake as a result more toxins and more chemicals are being pumped into the body. WE soon need more and more tablets.

Now if we can take our environment and our diet all he way to how the cave man lived we will see vast improvements.

In nutrition the basic concept is simple, eat what a caveman could only eat. Your physical health runs at optimum level.

Yeah it's a theory . Yeah it's also an opinion. (A professional opinion admittedly) however 200 to 25 mg is not something to take lightly and i'm still in the experimental stage.

I'm not scared to experiment with my E I know some are I'm not. But the way I see it is. If you can't control it, don't go under. At least make an attempt to beat it and if you fail . So what? You're only back where you started anyway. OK I get it your tired you're drained , you can't be bothered.But there's no way on this earth I'm gonna let my E control me I'm gonna control it.

 

[Dolores]

Ammeread, I don't really get the whole caveman diet. Eating organically grown foods is one thing but having the diet of a caveman is impossible as we don't have the animals around that they did. Nor is our environment anywhere near that of a caveman's and we can't change it back. The toxins are blowin' in the wind, traveling down the rivers, buried in the soil. Nor do we live like cavemen. They hunted mastodons and woolly mammoths. We sit at desks and hunt computer viruses (well some of us anyway). None of us have their lifestyle at all.

So I don't understand how eating like a caveman would be good for me. Shouldn't I eat based on my lifestyle? I readily admit to not understanding this latest dietary method. So what am I missing that makes it so great to live in the 21st century but eat like I lived 100,000+ years ago?

 

[Janus]

Dolores, that is a good point. I will however add that i know about and know some people that are doing much better now that they are on the Paleo diet. That is much like our ancestors, high meat/fat, no wheat etc. it is popular and can easily be found on line.

 

[kirsten]

The cavemen's average lifespan was 35 years. A more direct study of the diet and experimental use of natural treatments: The San

50% of children die before the age of 15; 20% die within their first
year (mostly of gastrointestinal infections). Average life expectancy is about 45-50 years; respiratory infections and
malaria are the major reasons for death in adults. Only 10% become older than 60 years.

(http://www.kalahari-meerkats.com/fileadmin/files/guides/Bushmen_light.pdf)



Can you tell us exactly what the Paleolithic diet consists of and how it is beneficial for epilepsy? Which cavemen are you using to formulate what you eat? Those in the Savannah whose diets consisted mainly of termites and gathered vegetation, those who lived in the arctic and existed primarily on fish, or those hominids who sustained an almost entirely vegetarian diet? And which phase are you emulating? Those who existed before 1.5 million years ago, when they weren't yet omnivorous, or those afterwards, who had begun to eat meat and marrow? Those who cooked their food, or those prior to 800 000 years ago, who had a raw diet?

I guess I'm a little confused about how you know this stuff has worked for you. You say you've had three tonic clonics in your life (in one place you say your first was in 2014 and on your profile you say it was in 2010) and you've also said in a number of places that your lamictal treatment (which you say was at 100 mg on your profile but 200 mg here) has been keeping you under control. You've presumably been making your dietary changes in the past month, and with seizures so seldom, a month wouldn't be long enough to test any efficacy. If your epilepsy was controlled and you seldom have tonic clonic seizures, how do you know that the diet is effective for your epilepsy? Also, since you stopped smoking and drinking when you started the detox, how do you know whether it wasn't the lack of alcohol and nicotine that brought an improvement?

 

[Janus]

I do not know that the diet has anything to do with epilepsy. I only know "of" the diet. it seems lots like what ammeread was talking about. I am not on the diet and the people i know on the diet do not have E so if i gave the wrong impression.. I also had sustained T/C' in the 1990's but they told me that that was cause from the sickness i had (spinal meningitis 3 times. I did not count those in my seizure history. I have lived with chronic temporal lobe seizures for decades starting in 1986 after the motorcycle accident. Those were many a day and untreated until i started having Tonic Clonics. I am not sure why your trying to 'pull rank' on me i am not at all siding with the nutritionist here. Nor am i trying to be some expert I am not a 'professional' in any way. I never said that i was. I am a low level epileptic like some of the less intelligent people on here unlike the medical experts on here. Please re-read some of my earlier posts on this thread, i am not one of them. Nor have i said i know all about nutrition diets if that is what you heard. Did you think i am so much less qualified to be here than yourself?

 

[kirsten]

I'm not scared to experiment with my E I know some are I'm not. But the way I see it is. If you can't control it, don't go under. At least make an attempt to beat it and if you fail . So what? You're only back where you started anyway. OK I get it your tired you're drained , you can't be bothered.But there's no way on this earth I'm gonna let my E control me I'm gonna control it.

You're misunderstanding the reasons behind choosing not to take the holistic route for epilepsy treatment. It has nothing to do with being tired or drained or not bothered. If you, for example, take a patient who has been forced into having a resection, there are weeks of ambulatory EEGs to go through, another few weeks in hospital with electrodes attached to your brain under your skull, hours of counselling and neuropsychiatric testing and, after a (terrifying) surgery, weeks of recovery time followed by doctors' appointments and experimentation with which AEDs are needed and at what dose. Those of us who haven't had surgery go through an enormous amount of pain and effort getting our medications right. I have bloods drawn monthly, a minimum of two doctors' appointments monthly, I travel four hours in total to see one doctor, and I cope with horrific side effects. My life is dominated by medical treatments. In the past I've had reactions to medications that have left me bedridden and ill for months. Those I know on CWE who take this route are heroes who are courageous, powerful people who have never given up even after decades of weekly seizures and years of failed surgeries. They, too, are not letting their epilepsy control them.

The reason I use allopathic medicine as opposed to holistic therapies is because I prefer to give myself the best chance at recovery. No matter how you spin it, the trials for acupuncture, most nutritional supplementation (in absence of undernourishment) , and detoxing have not produced repeatable results. In most cases, trials are small and are poorly designed. Those that have produced good results have crossed the line from the holistic world to become allopathic treatments. This series of acupuncture trials is typical of the industry. http://en.wikipedia.org/wiki/German_acupuncture_trials#Overview_and_results

I base my treatments on evidence that they have been successful in trials with sample groups of thousands, over years. Because I want to give myself the best chance.

You might not be scared of experimenting with your epilepsy but those of us who have up to 20 seizures a week, all of which destroy our cognitive abilities and memories bit by bit, and which wreck our quality of life and ability to be independent, would rather let the scientists do the experimenting. It's not called 'fear', it's just wise.

 

[kirsten]

Janus, my post is directed at ammeread's comment:

In nutrition the basic concept is simple, eat what a caveman could only eat. Your physical health runs at optimum level.

I asked the questions because he says he's a certified nutritionist, so he should be able to go into more depth about what he's said. I'm very much aware that your epilepsy situation is far more serious.

 

[Cint]

You might not be scared of experimenting with your epilepsy but those of us who have up to 20 seizures a week, all of which destroy our cognitive abilities and memories bit by bit, and which wreck our quality of life and ability to be independent, would rather let the scientists do the experimenting. It's not called 'fear', it's just wise.

:agree: I'm not afraid of experimenting with my epilepsy, either. I choose to go down the same path that Kirsten is, given that I also was having 20+ seizures a week and ended up in the hospital several times because of them. I was more fearful of dying from a seizure and so were my children.