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  #41  
Old 02-21-2010, 12:23 PM
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Congratulations Andrew.
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Neurofeedback - Rebecca's Story

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  #42  
Old 02-21-2010, 01:58 PM
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An informative blog post by Dr Mark Hyman:

Quote :
Most people don’t know how poorly they feel until they feel better. In fact, most of us don’t recognize that fatigue, digestive problems, aches and pains, allergies, headaches, and more aren’t just annoying symptoms. They are early clues to impending diseases that can disable and kill us.
read more...
http://www.ultrawellness.com/blog/7-...-ultrawellness
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Neurofeedback - Rebecca's Story

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  #43  
Old 03-20-2010, 05:05 PM
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very confused


I haven't had time to dig through all these posts and I lose my train of thought while trying to figure out what they are saying, but one thing that I keep asking myself is...where to begin? How do you know you are allergic to this or your body needs more of that? Do you need to combine all the alternative's to be on the safe side? Can supplementing your diet with additional vitamins hurt or do they just filter through if they aren't needed?
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  #44  
Old 03-20-2010, 06:32 PM
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Good questions.
I felt that at the beginning too. What I did was begin by cleaning up our nutrition. I had always thought I was feeding my family well. I learned quite a lot by starting there. I found forums that discussed and shared ideas in addition to the information here at CWE.
I began to feel some control over the situation as I cleaned up our cupboard, and refrigerator.

At the same time I researched vitamins and minerals that might be useful. A few healthcare providers have recommended Omega 3 - DHA and the nutritionist said he would suggest around 3000 mg for brain support. He is testing to see if her intestinal tract is absorbing nutrients, and there is also a test that we are going to have that does show what foods you might possibly be sensitive to.

Now that Rebecca and I are no longer eating foods with gluten, casein, soy and corn (doing our best), we both get a reaction most of the time if we do make a bad choice. The body is clearly sensitive. I think when it has a problem with absorption, there is no indication or it isn't clear as to why you might be having the symptoms that you do.

I know when I had migraines, after 30 yrs it was recommended that I try magnesium. I found instant relief and have not had another migraine in about 5 yrs. At times trial and good journal keeping allows you to see where one is helpful and another can be eliminated. If your GI tract is not healthy, then the absorption of the vitamins and minerals will not be as productive.

I found it also helpful to consider all health issues. For my daughter it was constipation, eczema, oral health, being an athlete, low water consumption, addiction to sugared food items and refined foods. I began my research by doing Google searches with combinations of symptoms. I have been slowly been able to narrow down the possibilities.
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  #45  
Old 03-20-2010, 07:58 PM
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Thank you Robin
That is a task I will have to take on once we get moved and I get in to see a doctor in this area. The first thing I think I need to do is get my thyroid tested and I plan to take as much information in with me when I go so they can't say that it's not possible. I told three different neurologist that I had a feeling my seizures were hormone related and all three said that wasn't likely. I guess from here on out I'm going to go with the gut feeling. There is nothing worse than having to tell a doctor your diagnoses which turns out to be correct and they still bill you! I already did that once and hopefully don't have to do it again.
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  #46  
Old 03-21-2010, 01:18 AM
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I too was told that hormones did not play a role in seizures. After much research, I find that catamenial seizures are quite common among women. I was also told that nutrition didn't play a part in seizures, and come to find out there are direct connections. Also a GI doctor said he doubted very much that the GI system could cause seizures.

The only therapy we were offered was medication. However, after I had started neurofeedback with Rebecca, her neurologist did offer a prescription for it.
Now we have adult doctors and we are seeing a Nutritionist that seems to have more current education on the subject. It can take a few trials before you find a good fit.
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Neurofeedback - Rebecca's Story

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  #47  
Old 03-21-2010, 08:35 AM
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Originally Posted by donding View Post:
...where to begin?
IMO, it begins with a seizure diary/journal. You need to keep track of your seizure activity and your diet, sleep schedule and any other factors that you think might be important. You should be able to identify potential triggers over time if you are diligent. You can then experiment with eliminating the potential trigger and seeing what effect (if any) it brings.

The three biggest (non-pharmaceutical) factors that are within your control are sleep, diet and vitamin/mineral supplements. I tried to consolidate all these ideas into this thread: http://www.coping-with-epilepsy.com/...epilepsy-1254/
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New to CWE? I suggest reading the proactive prescription and epilepsy 101 threads. Also check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback. More great stuff can be found in the list of the best forum threads.

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  #48  
Old 09-10-2011, 08:33 AM
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Here is "A support group for parents of children with Pyridoxine Dependency, or parents who are using B6 as an anticonvulsant."

http://health.groups.yahoo.com/group/b6children/

**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONSENT**

Andy (Pyridoxine Dependent for over 40 years)
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  #49  
Old 02-01-2012, 01:06 AM
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I dont really know how to find my messages on this site but I hope this gets to you. It was very interesting about the Vitamins, thats what I am researching now myself. If you still contact people via this site could you please PM me and make contact as I am in Australia i am 50 and was diagnosed with Epielpsy 6 years ago after a blow to the head. I am about to start Vitamin therapy too as the doctors are useless and just want to give me drugs which make my hair fall out.

Thanks Laura

Last edited by epileric; 02-01-2012 at 01:42 AM.
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  #50  
Old 12-20-2012, 04:20 AM
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Research - TAURINE


I wasn't able to attach the article but if you want the article just message me.

From the Journal of Neuroscience Research (2009) "Prevention of epilepsy by taurine treatments in mice experimental model".

Taurine is the most abundant free amino acid in the mammalian brain and is critical for proper brain development and functioning.

Moreover, taurine has also been considered as a neuroprotector
following injuries and various researchers have described the protective function of taurine against excitotoxicity induced by glutamate, preventing neuronal depolarization.

Some studies have related taurine and epilepsy, because it has
been demonstrated that taurine deficits cause prolongation
of seizures and the persistence of hyperexcitability
in the brain.

Furthermore, large increases in extracellular taurine levels have been associated with kainate and Nmethyl- D-aspartate (NMDA) excitotoxicity experimentalmodels in hippocampal slices.
An increase in taurine has also been found in brains of humans with epilepsy, as in experimental models of epilepsy. Thus taurine production following pathological conditions may act as an endogenous neuroprotectant.

Moreover, taurine acts as a neuroprotectant in various diseases;
in epilepsy, for example, it has the capacity to reduce or abolish
seizures (Hippocampus, 2011)
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  #51  
Old 12-20-2012, 07:36 AM
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Originally Posted by M1ssy View Post:
researchers have described the protective function of taurine against excitotoxicity induced by glutamate
This reminded me of the following article regarding vitamin B6 entitled:

Quote :
Glutamate in Pyridoxine-Dependent Epilepsy: Neurotoxic Glutamate Concentration in the Cerebrospinal Fluid and Its Normalization by Pyridoxine
http://pediatrics.aappublications.org/content/94/3/318

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  #52  
Old 08-14-2018, 09:48 AM
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Hi I am having success so far (6 weeks) with 200 lamictal, 1500 depakote. This is after a string of long seizures. There is a lot of talk about neurologist-feedback. I had a chance to try it once. One time years ago I happened apon a great doctor who happened to have time for a few visits, pro-bono (free). I wish I could try that again! It uses a different part of the brain. It's a challenge to me and intriguing, there may be good treatment for me there. BUT. Who knows where to find that treatments of metro feedback that can be afforded. I can not do a 100.$ a whack. As I said, I'm having success with some meds now (6weeks but this is long for me. I'm afraid, wishing to try feedback but not able to go for that much.
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  #53  
Old 08-25-2018, 05:10 PM
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sulfinoalanine decarboxylase


Originally Posted by M1ssy View Post:
Taurine is the most abundant free amino acid in the mammalian brain and is critical for proper brain development and functioning.
Quote :
This enzyme participates in taurine metabolism. It employs one cofactor, pyridoxal phosphate.
https://en.wikipedia.org/wiki/Sulfin..._decarboxylase

Also see: https://www.genome.jp/dbget-bin/www_bget?ec:4.1.1.29
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