Coping With Epilepsy Mindy Fox, Marriage and Family Therapist
10% off neurofeedback training for CWE members - Santa Monica and Torrance, CA
Neurofeedback Partner - Free Advertisement
 

Go Back   Epilepsy Forum > Peer Support > The Kitchen



Reply
 
LinkBack Thread Tools
  #1  
Old 02-20-2011, 06:22 AM
Weaving the Community Fabric
 
Join Date: Oct 2007
Location: England
Posts: 189
Thanks: 5
Thanked 80 Times in 55 Posts

(((*** 40 years on vitamin b6 ***)))


20th February 2011: It was on this day, 40 years ago, that my then paediatrician first administered Pyridoxine HCl (vitamin B6) in the hopes that it would stop my severe seizures.

Here is my story regarding B vitamins:

I had my first seizure at two weeks old. I spent the first 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. At this time I was having many ‘different types’ of seizures a day some of which went status. Countless tests were being 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 Hydrochloride (vitamin B6). Pyridoxine Hydrochloride 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. Because of the positive effects that Pyridoxine had on my seizures doctors slowly weaned me off all the antiepileptic drugs (this was back in 1970-71). I’ve been taking Pyridoxine Hydrochloride on a daily bases ever since.

I was still experiencing my aura when taking vitamin B6 only, so when I was 19 years old, with my doctor's consent, I added a multi B complex tablet to my daily medication. This stopped my aura.

I have only used B vitamins to control my extremely rare, Atypical form of Pyridoxine (vitamin B6) Dependent Epilepsy.

Without B vitamins (mainly vitamin B6 (pyridoxine HCL)) I would probably be mentally impared or worse due to severe seizure activity.

Here is a puzzle I can solve: http://en.wikipedia.org/wiki/V-Cube_7

Here is a question that I wrote to fermilab and their reply:

http://www.fnal.gov/pub/inquiring/qu...blueberry.html

Apart from an absent type seizure all my different types of seizures are pretty well controlled.

Here is some information on vitamin B6 Dependent Seizures:

http://ghr.nlm.nih.gov/condition/pyr...ndent-epilepsy

http://ghr.nlm.nih.gov/condition/pyr...ndent-epilepsy

http://www.ncbi.nlm.nih.gov/omim/266100

http://wapedia.mobi/en/Vitamin_B6

B vitamins - for me - are the equivalent of your anti-epileptic drug(s).

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

Regards,

Andy

Last edited by Andrew; 02-20-2011 at 09:35 AM.
Reply With Quote
  #2  
Old 02-25-2011, 11:12 AM
Joined the Party
 
Join Date: Oct 2010
Posts: 30
Thanks: 0
Thanked 3 Times in 2 Posts
Andrew, Do you know if there is a definitive test yet for B6 seizures? My daughter's seizures stopped after three days on b6, three days BEFORE surgery to remove a brain tumor. Her EEG cleared up after the tumor removal so the doctor has always attributed it to that. But I have noticed absense and nocturnal seizures over the past several years and have upped the B6 but would love professional guidance on this. For me, the fact that the seizures stopped BEFORE surgery on b6 was always quite telling for me. And are there any new guidelines with regard to "how much" b6.
Reply With Quote
  #3  
Old 02-25-2011, 02:46 PM
Weaving the Community Fabric
 
Join Date: Oct 2007
Location: England
Posts: 189
Thanks: 5
Thanked 80 Times in 55 Posts
Hi Maddiesmom,

You may find this of interest: http://www.ncbi.nlm.nih.gov/books/NBK1486/

also: http://faculty.washington.edu/sgospe...ine/index.html

Regards,

Andy
Reply With Quote
  #4  
Old 05-30-2019, 03:57 PM
Weaving the Community Fabric
 
Join Date: Oct 2007
Location: England
Posts: 189
Thanks: 5
Thanked 80 Times in 55 Posts
Quote :
Mutations in PROSC Disrupt Cellular Pyridoxal Phosphate Homeostasis and Cause Vitamin-B6-Dependent Epilepsy
https://www.cell.com/ajhg/pdfExtende...297(16)30447-5
Reply With Quote
The Following User Says Thank You to Andrew For This Useful Post:
Bernard (05-30-2019)
  #5  
Old 06-03-2019, 05:17 PM
Freda's Avatar
Weaving the Community Fabric
 
Join Date: Aug 2017
Location: Essex, England.
Posts: 142
Thanks: 54
Thanked 45 Times in 37 Posts
That is so interesting Andrew, I've passed this on to my daughter who developed epilepsy eighteen months ago at age 36. At the time her dad had been diagnosed with terminal cancer and as she's a medical secretary at the hospital he was being treated at (Southend Essex) she would arrange his appointments and go with him each time - there were times he'd just up and walk out if he had to wait (obviously he was under immense stress) and my daughter was under extreme pressure from him too. It's thought that this stress added to her developing seizures but we will never know for sure. She does take B complex but will be very interested to know what dose you take and how often - the constant changing of epilepsy meds take their toll as well as her loss of independence. She copes well and still holds her full time job but it's hard to watch the changes some of these meds have had on her, we recently had to make a 4am trip to A&E due to Stevens-Johnson syndrome and a very sudden severe rash with flu like symptoms.
Obviously she wouldn't change her meds without consulting with her neurologist but she could talk to her about adding more B6 and complex.
Reply With Quote
Reply

Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are On


Similar Threads
Thread Thread Starter Forum Replies Last Post
[Research] Vitamin D RobinN The Library 26 11-30-2010 05:04 PM
Vitamin D RobinN The Library 6 06-07-2008 10:52 PM
Vitamin C RobinN The Library 1 02-02-2008 01:03 AM
Vitamin B12 RobinN The Library 7 11-16-2007 01:26 AM
Vitamin B6 Bernard The Kitchen 2 06-13-2006 06:55 AM


All times are GMT -5. The time now is 03:22 PM.


Powered by vBulletin® - Copyright ©2000 - 2019, Jelsoft Enterprises Ltd.
Content Relevant URLs by vBSEO ©2009, Crawlability, Inc.
Copyright 2005 Measuring Up. ALL rights reserved.