Coping With Epilepsy Neurofeedback & Counseling Associates
10% off neurofeedback training for CWE members - Las Vegas, NV and Denver, CO
Neurofeedback Partner - Free Advertisement
 

Go Back   Epilepsy Forum > Peer Support > The Library



Reply
 
LinkBack Thread Tools
  #1  
Old 02-18-2019, 07:13 PM
DayDreamer's Avatar
Weaving the Community Fabric
 
Join Date: Jun 2009
Location: Earth
Posts: 197
Thanks: 9
Thanked 75 Times in 56 Posts

I have HOPE for myself and others


I have been having luck after finding those GABA related antibodies from an anti GAD test after asking for autoimmune or genetic tests from my neurologist.

I started a new, third, medication focusing on increasing the use of GABA: clobazam. I wouldn't be able to afford this without our insurance. Since starting this my seizures for the first month decreased and in the last month have gone away. This has been tracked by my responsive neurostimulator. Man! I hope this continues.

There is a hope for seizure control. I won't count on it as there are infinite variables to seizure control, but my hopes are there. We will see. This has been a sudden stop of seizure activity that hasn't been seen in four years since starting Neuropace even during the night with small seizures that I would never have been aware of ten or twenty years ago.

If your insurance covers it try and have some tests for antibodies related to neurological conditions done and then ask your doctor to focus on medication related to whatever chemical may be altered. This may not be an option or even relate to many, but if so it could be very good.
__________________

No matter where I find myself, I am the navigator, and happiness my desired permanent position.
Epilepsy, Type 1 Diabetes and Hashimotos at times interferes with this location.
Family and Friends help with calibration.


I almost always play the devil's advocate and turn conversation to debate. It is helpful to remain silent so often. I cannot do this with myself. My idea of heaven is absence of thought.
Reply With Quote
  #2  
Old 02-23-2019, 07:42 PM
Sweetroll's Avatar
Joined the Party
 
Join Date: Jul 2018
Location: Glendale Ariazon
Posts: 68
Thanks: 28
Thanked 8 Times in 8 Posts
That's great! They just started me on colzbpam for about 1 or 2 months ago. I am still having seizures everyday. I have them on both sides of the brain and a VNS unit as well nothing right now looks hopeful but I'm not going to give up fighting. I know my Boy would of wanted me to keep fighting.

Sent from my SM-T377V using Tapatalk
Reply With Quote
  #3  
Old 02-25-2019, 10:15 AM
Weaving the Community Fabric
 
Join Date: Oct 2007
Location: England
Posts: 186
Thanks: 5
Thanked 79 Times in 54 Posts

PLP (the active form of vitamin B6)


"Glutamate decarboxylase or glutamic acid decarboxylase (GAD) is an enzyme that catalyzes the decarboxylation of glutamate to GABA and CO2. GAD uses PLP as a cofactor."

https://en.wikipedia.org/wiki/Glutamate_decarboxylase

https://www.sciencedirect.com/topics...-decarboxylase

https://bmcbioinformatics.biomedcent...71-2105-10-273

My story:

https://www.coping-with-epilepsy.com...amin-b6-11674/


**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONSENT**
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
[Info] There IS Hope! PhylisFeinerJohnson The Library 4 11-15-2010 09:18 PM
I hope it wasn't just me!! huskymom The Kitchen 4 09-09-2010 06:32 AM
New, need hope. Aidans family The Nursery 7 10-12-2009 05:39 AM
Hi Everyone. I hope I can be of some help. DogtorJ The Foyer 34 10-14-2007 07:54 PM


All times are GMT -5. The time now is 02:42 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.