Neurofeedback - Rebecca's Story

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!

Nor was the white flour, the white sugar, the aluminum in the baking powder, ...
Here it is 2009 and we are still eating this type of food. We sure don't learn very quickly
 
I did not know about the aluminum. It must have been in other foods too. I am a slow learner. Probably from all of that junk.

Ruth
 
Aluminum is being linked to alzheimers. So any pots or utensils used in cooking should be thrown away.
 
When we buy pots and utensils, we make sure they are made of stainless steel. Is that bad as well? It probably is. What is it linked to?

We used aluminum for a long time. My husband said that aluminum is in antacids. He also said that it is used because it is cheap. When we go out to dinner, we do not know what they are using in the cooking area. We cannot see it. We do not go out to dinner to often. Maybe every once in 2 months. I did not know that aluminum leads to Alzheimers.
 
Continueing my research, as my daughter has had a huge flare up of eczema and lack of stamina. This came in my inbox today from Dr. Mark Hyman.

When your intestinal lining breaks down, all the sewage inside your intestines leaks into your blood stream and activates your immune system.

This turns on all sorts of signals that affect your whole body leading to autoimmune disease, allergies, joint pains, headaches, mood problems and cognitive issues.

Having a leaky gut is a huge problem. We're recognizing this more in medicine.

It's called increased intestinal permeability. It's a big word, so I call it a leaky gut. We now know how to identify it and how to fix it.

But how do you know if you have a leaky gut?

I'll explain how to get the answer in a second. But first let me ask you another question.

Do you or someone you know struggle with eczema?

Most doctors, know how to put on potions, lotions and salves, which work on the outside, BUT skin problems like eczema really come from the inside.


So unless you address the underlying cause underneath your skin you won't fix the problem...

You'll just deal with the symptoms.

The things that trigger inflammation in your skin are the same things that trigger inflammation in your brain.

In fact some people, if they have an inflamed gut will get eczema while others will get autism or depression.

But the treatment is the same -- it's treating a leaky gut.

So if you want to fix your skin, you need to fix your gut.
 
If there is a single marker for lifespan, as they are finding in the centenarian studies, it is insulin, specifically insulin sensitivity.

What you have to do if you are going to treat any disease is get to the root of the disease. If you keep pulling a dandelion out by its leaves, you are not going to get very far. But the problem is that we don‘t know what the root is.

Here we are getting a little bit further down into the roots of disease. It doesn‘t matter what disease you are talking about, whether you are talking about a common cold or cardiovascular disease, osteoporosis or cancer, the root is always going to be at the molecular and cellular level, and I will tell you that insulin is going to have its hand in it, if not totally control it.
A less known fact is that insulin also stores magnesium. But if your cells become resistant to insulin, you can‘t store magnesium so you lose it through urination.

Intracellular magnesium relaxes muscles. What happens when you can‘t store magnesium because the cell is resistant? You lose magnesium and your blood vessels constrict.

This causes an increase in blood pressure and a reduction in energy since intracellular magnesium is required for all energy producing reactions that take place in the cell.

But most importantly, magnesium is also necessary for the action of insulin and the manufacture of insulin. When you raise your insulin, you lose magnesium, and the cells become even more insulin resistant. Blood vessels constrict and glucose and insulin can‘t get to the tissues, which makes them more insulin resistant, so the insulin levels go up and you lose more magnesium. This is the vicious cycle that begins even before you were born.

Insulin sensitivity starts to be determined the moment the sperm combines with the egg. If a pregnant woman eats a high-carbohydrate diet, which turns into sugar, animal studies have shown that the fetus will become more insulin resistant.

Worse yet, researchers have used sophisticated measurements and found that if that fetus happens to be a female, the eggs of that fetus are more insulin resistant. Does that mean it is genetic? No, you can be born with something and it doesn‘t mean that it is genetic. Diabetes is not a genetic disease as such. You can have a genetic predisposition, but it should be an extremely rare disease.
http://articles.mercola.com/sites/articles/archive/2001/07/14/insulin-part-one.aspx
http://www.mercola.com/article/carbohydrates/lower_your_grains.htm
http://www.mercola.com/article/carbohydrates/scientific_evidence_low_grains.htm
 
Last edited:
Now I am really confused. If you have seizures due to hypoglycemia, it is not Epilepsy? It is just a body reaction to the low blood sugar? So for 2.5 yrs they have been treating Rebecca for the wrong thing?



http://www.sciencedirect.com/science...e4d2baa3c997fb


I looked up hypoglycemia and amnesia, and sure enough there is a relationship.

There is a relationship also to the insulin / liver / hormone imbalance too.

I am going to discuss this with Sue at EEGInstitute, because if there is no abnormal brain wave patterns, if there is no imbalance, or instability. Perhaps the improvement is largely due to the nutritional changes, and the cognitive improvement is solely due to NFB.

Rebecca had another seizure yesterday, right on schedule. At the end of her sensitive week, and I have found evidence of nutritional cheating. It also occurred around 10:30 am which is within the margin that it usually happens. Some clue here with breakfast, workout, snack... crash. I am determined to figure this out. She made it 42 days. Sure beats 6 seizures a month on meds.

[Sorry, your request could not be processed because the qualifier of the URL (/science...e4d2baa3c997fb) is incorrect. Please contact the Help Desk if the problem persists.]

I guess the link expired. Wish that I had read it.
 
Q: What is reactive hypoglycemia?


A: This is hypersensitivity of the insulin-secreting cells of the pancreas. When people with this condition sonsume foods or drinks containing sugar or eat high glycemic carbohydrates, they develop a dramatic fall in their blood sugar. After many years of eating such a diet, they reach a condition of crisis, in which they feel so terrible
they think they are dying. This is because the pancreas gets gradually more
sensitive, so that the periods of hypoglycemia occur more frequently and with greater severity. The most-common symptoms are weakness, uncontrollable tremors, anxiety, sweating episodes, heart palpitations and feelings of doom. In some cases, coma can result. The condition is very common and affects at least half of the population. Many doctors overlook this condition and instead order an enormous number of expensive tests that lead nowhere. The diagnosis is usually made with a three-hour glucose tolerance test. Hypoglycemia-triggered adrenal release of epinephrine is the cause of most of the symptoms and is made much worse with using caffeine.

Dr. Russell Blaylock

The Blaylock Wellness Report (June 2009)
 
Neurofeedback doesn't just happen to work. It works; and when it doesn't, there must be a good reason. The failure of Neurofeedback when success is expected serves for us as a significant data point to be pursued further.


The reasons tend to fall into a manageable set of categories:

* Allergic reactions cause the effect of Neurofeedback / EEG Biofeedback training to be highly variable, and to fluctuate with the severity of the allergic challenge

* Food intolerances present a physiological challenge to the trainee that we cannot fully overcome with Neurofeedback

* Dietary insufficiencies don't allow the full benefit of Neurofeedback training to be felt

* Digestive malabsorption impinges negatively on function, including in particular brain function

* Heavy metal toxicities or excesses in certain minerals frustrate our efforts

* Irlen Syndrome, and other disturbances in visual processing, limit our gains

* Primary auditory processing disorder can tax the brain

* Deficits in blood glucose regulation (dysglycemia) impinge directly on brain function

* Poor sleep or poor sleep hygiene is detrimental to learning of the process and the consolidation of gains

* Degenerative conditions prevail, such as among the elderly, leading to fading of the Neurofeedback gains on some time scale after the sessions

* Structural injury in the brain limits what can be accomplished in the training. This is an obvious one that we usually know about in advance: stroke injury; brain tumor; arteriovenous malformations; hydrocephalus; history of meningitis, etc.

* Cerebral under-perfusion. This may result from the use of anti-hypertensive medications in the elderly, leading to compromised brain function

* Environmental factors within the home or school that militate against training success: emotionally unsettled or even a traumatizing home environment; being subjected to bullying behavior at school, etc.

In each case there is usually a small number of hypotheses to pursue, and the most common relates to dietary issues. This is not a topic that can be dealt with briefly. The best we can do is refer to more extensive sources.

Neurofeedback doesn't just happen to work. It works; and when it doesn't, there must be a good reason. The failure of Neurofeedback when success is expected serves for us as a significant data point to be pursued further.


The reasons tend to fall into a manageable set of categories:

* Allergic reactions cause the effect of Neurofeedback / EEG Biofeedback training to be highly variable, and to fluctuate with the severity of the allergic challenge

* Food intolerances present a physiological challenge to the trainee that we cannot fully overcome with Neurofeedback

* Dietary insufficiencies don't allow the full benefit of Neurofeedback training to be felt

* Digestive malabsorption impinges negatively on function, including in particular brain function

* Heavy metal toxicities or excesses in certain minerals frustrate our efforts

* Irlen Syndrome, and other disturbances in visual processing, limit our gains

* Primary auditory processing disorder can tax the brain

* Deficits in blood glucose regulation (dysglycemia) impinge directly on brain function

* Poor sleep or poor sleep hygiene is detrimental to learning of the process and the consolidation of gains

* Degenerative conditions prevail, such as among the elderly, leading to fading of the Neurofeedback gains on some time scale after the sessions

* Structural injury in the brain limits what can be accomplished in the training. This is an obvious one that we usually know about in advance: stroke injury; brain tumor; arteriovenous malformations; hydrocephalus; history of meningitis, etc.

* Cerebral under-perfusion. This may result from the use of anti-hypertensive medications in the elderly, leading to compromised brain function

* Environmental factors within the home or school that militate against training success: emotionally unsettled or even a traumatizing home environment; being subjected to bullying behavior at school, etc.

In each case there is usually a small number of hypotheses to pursue, and the most common relates to dietary issues. This is not a topic that can be dealt with briefly. The best we can do is refer to more extensive sources. [/QUOTE]

http://www.eeginfo.com/research/vitamin_main.html
 
From the John Hopkins Epilepsy Center site:

Are there other conditions that can be confused with Epileptic Seizures?
There is more than one kind of epileptic seizure. Similarly, epilepsy can be divided into primary epilepsy and secondary epilepsy. Primary epilepsy can be "idiopathic" - that is of no currently known cause. However, more and more cases of primary epilepsy are found to have causes.

For example, some cases of epilepsy are due to abnormalities of brain development, or are due to changes in the genetic code. Second, there are conditions that can produce epileptic seizures, such as strokes, infections, tumors, abnormalities of brain developments, and Alzheimer's disease. Finally, there are conditions that can produce changes in sensation, consciousness, or behavior that can resemble epileptic seizures, but that are not actually epileptic seizures. These conditions include migraine, heart and other cardiovascular conditions, psychological disorders, sleep disorders, substance abuse, and abnormalities of blood components including fluids, electrolytes and hormones.
 
Hi Robin,

Most of my seizures are definetely epileptic seizures. I also have NEAD (Non Epiletic Attack Disorder.) They are also known as NES (Non Epileptic Seizures). Mine are caused, I believe by psychological disorders.

The doctors do not recognize my idiopathic seizures because of my real epileptic seizures. I did not know that they can also be caused by sleep disorders. I have a tough time sleeping at night. I can be busy all day and still cannot sleep at night. Maybe a few hours.

Thank you for the info. I did not know a lot about it! It is diagnosed by a Video-EEG.
 
Last edited:
Yesterday we "celebrated" (?) the fact that it has been three years since Rebecca had her first seizure. Three years of an wild roller coaster ride. I have grown in ways I never knew possible, and Rebecca and I have been on an incredible journey together.

She has improved so much. Leaps and bounds all due to nutrition and neurofeedback.
I do not believe we would be seeing the MONTHS of seizure FREEDOM as we have now, without making these steps in our daily life. We have had to make sacrifices, but really I have to say after learning what I have about nutrition, I think this has saved our lives over time. I thought we were eating a healthy diet, but in fact we were on a crash course. I am holding my breath waiting for others that do not understand the need to change their course. I fear that they won't make the healthy changes in time.

Quality of life is extremely important to me. Allowing Rebecca this time to be med free, and see improvement in her QOL, is like a huge hug from her Creator. I believe I have been given a mission to show others that it can be done. There is HOPE even in areas of medicine that are a mystery.

Being brave to stand up to a medical community that has been bought out by Pharma, and expect a seizure free life, without meds, has not been easy. It has been a financial drain, but I would not change the direction that I have taken. My research has paid off. My daughter has been seizure free now for three months. Most of my choices have been made without doctors help. Being intuitive, knowing my daughter, watching for nuances, and recording as much info as I can. I adjust my answers to fit the questions. I continue to ask WHY, and not accept answers that make no bit of sense.

We will begin NFB again, as we are settled into a new home, and our dual schedules have eased up a bit. Rebecca is in agreement that this is a gift that will not always be there for her to use. Her time is now, to improve and heal, from the inside out.

I can only hope that her story will encourage others to find the strength to improve their situation, and quality of life. By not stopping until they have turned over every stone looking for answers.

Thank you all for your support. It has meant a great deal to walk our path with your encouragement.
Thank you Rebecca, for allowing me to experiment on you. You are well worth the education.
 
It's terrific to see what you and your daughter have accomplished Robin. It's also a shame that you had to do this "research" on your own, while the medical establishment continues to turn a blind eye.
 
And I personally think that it's AWESOME that Rebecca has a mother that is willing to do all this for her......
 
Congrats!! I can only imagine how hard you work. I am so glad you are seeing results from your efforts.
The more I learn about E, the more I realize what unchartered territory it is. I have found more by tracking patterns than from alot of conventional thinking.
I wish you continued success*
joan*
 
That is awesome!! Three months seizure free. It is all due to your continued research. Nutrition and Neurofeedback is the way. I know Rebecca will be seizure free longer.

I have been on medicines for 60 years now. I wish I knew about the facts that you know about, years ago. Meds cause a lot of heartache and the quality of life is not as good.
 
We began chelation 7.17.09 based on Andrew Cutler's protocol. I am using Alpha Lipoic Acid. I have begun with 25mg every three hours, around the clock. Yes... I do get up in the middle of the night to give it to Rebecca. It is based on a 3 day on 4 day off plan.

I will let you know what positive or negatives I witness.

Also, I want to let you know that I have researched this for over a year, and I am finally at a point where I feel confident that I know enough to proceed.
I hesitate recording this, since there might be some that believe this should not be done without a doctor advice. I feel quite confident, with the support and knowledge of Andy Cutler. There is a tremendous amount of info from people that have followed his protocol.

I don't feel Rebecca will ever fully recover, unless we eliminate the metals that for some reason her body has held on to. She has had a toxins test, so I am not just guessing. I have used the counting rules, that Andy Cutler advises to use.

She continues to remain seizure free and med free.

http://amalgamillness.com/AboutTheAuthor.html
http://en.wikipedia.org/wiki/Chelation_therapy
http://en.wikipedia.org/wiki/Alpha_lipoic_acid
 
Last edited:
Hi Robin,
I have heard of Alpha Liporic Acid. It was way in the past so I have forgotten a lot about it. I will look up the web sites that you have given me. Since you have studied it for a year, you know what you are doing.

How long has Rebecca gone without seizures now?
 
Back
Top Bottom