vitamins and epilepsy

tulip12

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hello
i would like to know if any one has been seizure free with taking vitamins i take b6 omega one a day and vit e but still have quite a bit of seizures a month have also heard that vitamins do not help any so dont know what to believe
 

Bernard

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Yes, Lindy posted about her experience using vitamins to control epilepsy successfully. Zoe has also posted quite a bit about various vitamins in the forums (I don't have the links handy though).

I'd suggest looking at the seizure control diets listed in the chart linked in my signature. :)
 

Andrew

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My name is Andrew and I am 37yrs old. I have a very rare type of epilepsy known as Pyridoxine Dependant Epiepsy. I had my first seizure at two weeks old. I was in mum’s arms at home and the seizure was in the form of a slight tremble. I was about 3 weeks old when I had my next seizure. After this I was having many ‘different types’ of seizures a day. Phenobarbital was administered, which turned out to be ineffective. At about 5 weeks old I was admitted to hospital. I spent the first five to six months of my life in and out of hospital. Doctors were mystified by my illness. None of the ‘normal’ antiepileptic drugs that were administered had any positive effects. When I had a severe seizure in hospital doctors administered Paraldehyde to bring me out of the seizure and keep me sedated. Countless tests were done including, EEGs, lumber punctures… etc. A top pediatrician from the main city hospital told my mother that he was going to a meeting. He said he would talk about me in the hope that someone there would be able to help us. At this meeting there was a professor who was doing research into childhood epilepsy. He suggested a trial of Pyridoxine HCL (vitamin B6). All antiepileptic drugs were withdrawn and the Pyridoxine HCL was administered (I was five months old). Within two to three days my mother noticed a big difference in me. I’d stopped having severe seizures. I’ve been taking Pyridoxine HCL ever since.

When I was 15 years old I underwent a very unsuccessful two year therapeutic trial of AEDs. At 19 years of age I discovered a multi B complex tablet. I had searched for one that contained at least 50mg of Pyridoxine HCL (same as what is in one of the B6 tablets that I am prescribed). The idea was to replace one of these. Since I have been taking this Multi B complex I rarely experience my aura. :tup:

The only seizures I have now are absent type seizures.

I also eat plenty of oily fish (Omega 3) and I have recently added a Magnisium tablet to my daily intake of B vitamins.

AEDs have never had any positive effects on my seizures.

Thank you for your time,

Andrew
 

tulip12

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hi andrew
are u seizure free at all what vitamins do you take i take the b6 right now the omega vit e and one a day thanks alot
 

Andrew

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Vitamins and epilepsy

I would just like say that I have a very rare form of epilepsy. The first case of Pyridoxine Dependent Epilepsy (PDE) was diagnosed in 1954. Since then more than 100 cases have been recognized in medical litriture. I do not appear to have the usual type of PDE according to doctors. My ALDH7A1 gene located on Chromosome 5q31 appears to be normal.

I have not found a single person with exactly the same type of PDE as myself.

I have read many stories, from all around the world, mostly of children who are using B6 for seizure control. Some of them also use anti-epileptic drug(s) with their B6 (Pyridoxine Responsive Seizures). Others use Pyridoxal 5'-Phosphate (the active form of B6) instead of Pyridoxine, and there are those with a mutation in the ALDH7A1 gene.
You may also find the URLs interesting in a previous post of mine:

www.coping-with-epilepsy.com/forums/f23/autisum-gaba-vitamin-b6-seizures-2746/

To control my seizures I now use Thiamin (vit. B1), Ribofiavin (vit. B2), Niacin (vit. B3), Pantothenic Acid (vit B5), Pyridoxine HCL (vit. B6), Cyanocobalamin (vit. B12), Folic Acid (vit. B9), Biotin (vit. B7), Choline Bitartrate, Inositol, ParaAminobenzoic Acid (PABA).

As a supplement I take Magnesium (Mg). (I have been using Mg for less than a year). I also take Amino Acids, but not every day, and eat a small portion of oily fish (Omega 3).

There are many different types of epilepsy. Out of all of these very few seizures are controlled with vitamins. Also some vitamins can interfere with AEDs.

For Example:

www.epilepsy.org.uk/about/positionstatements/folicacid.html

Please do not alter your medication without your doctor's consent.

Andrew (Pyridoxine dependent for over 37 years)

P.S. Do not include any spaces in the above URLs.
 
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tulip12

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is this vitamin altogether the superb-complex i just went to get it at the store has lots of b vit in it
 

RobinN

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Rebecca takes a Vit B complex. Andrews situation is unique, but one that parents should be aware of. I think it shows up within the first two years of life. I am sure that there are exceptions... and maybe they don't know enough about it, and it can happen other ages too. I don't trust all of the research and answers. I think there are far too many exceptions.

Another thing to be aware of, and I don't really have an answer yet for my own peace of mind. It really depends on the vitamin company as to how effective the supplement is. You can get a brand off the shelf and the quality of the vitamin is rather poor, while others are quite pure. I think we all need to do a little digging to find the best manufacturers that have our health in mind not just their bottom $$$.
 

tulip12

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what brand of super b is your daug taking this one is spring valley i have never heard of brand having any thing to do with the vit working that is something new
 

RobinN

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Just as with any product there are some that are superior and some that actually are eliminated before they are even absorbed, or the vitamin isn't a quality product.

The brand that was suggested for Rebecca, and I trust the doctor that did, is made by:
Integrative Therapeutics, Inc.
NF Formulas Spectra B
High-potency Vitamin B Complex with mineral co-factors

I have learned that if you are sensitive to free glutamates, that any pill in a gelatin capsule is one that you do not want to take.
 

RobinN

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The above link isn't working for me even when I close the gaps.

Many sites list a fairly common list of vitamins that have been known to support brain health. What I also do is think of the symptoms that are occuring that denying overall good health. I research looking for ways to support the organ or function that is not working properly and most of the time a vitamin source will be suggestion. At least there is a connection as to a deficiency. That is where I begin finding answers.
 

Bernard

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I fixed the link. It works now.
 
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