Anyone with Epilepsy 19 years or more?

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Hmmm, 46 - 47 years for me. An eternity when I consider all the time I lost to worrying about my brain.
 
What a competition! ha ha ha! All boasting abt the thing they hate the most! Well on a serious note, we all are so brave, competing here! Dear Mike do tell when u come back from hospital. Take care! What surgery is it! Do tell if u want to tell. And as far the competition, I lag behind a lot................................ just 20 years!! 20 balck cloudy years! But yes! every cloud has asilver lining!! What say?
 
sturg said:
I found that eliminating msg/aspartame/exitotoxins has really helped me over the last 2-3 years. I also switched to lyrica which is a glutamate blocker for my brain. It's hard to get doctors to discuss that. It's on google though.
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Absolutely NO surprise they won't. A lot of it isn't their fault....they can only legally go by what's taught to them (as their oath reads in part: "....I will not use the knife, not even on sufferers of stone, but will withdraw in favor of men that are engaged in such practice...") But I'll give you 3 guesses as to who the #1 influence is as far as what goes into their textbooks in college....! (This has been admitted to me by at least 1 M.D. as well as printed several times in those on-line M.D. newsletters I get.)
 
I use gluten. It is in whole grains. It fills me up so I do not overeat. I know everyone believes in different diets. That is your choice Sturg.
 
I had my first seizure when I was two weeks old and my then Paed. first prescribed vitamin B6 when I was ~5 months old. That all happened over 40 years ago.

I have an extremely rare type of epilepsy. My medication consists of B vitamins only.

http://www.epilepsy.org.uk/info/syndromes/pyridoxine-dependency

**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONSENT**
 
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Andrew, what kind of epilepsy do you have?

Glad to meet you.
 
Andrew said:
I had my first seizure when I was two weeks old and my then Paed. first prescribed vitamin B6 when I was ~5 months old. That all happened over 40 years ago.
I have an extremely rare type of epilepsy. My medication consists of B vitamins only.
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BINGO! BINGO! BINGO! B6 or better yet, B-complex is 1 of nature's greatest wonders when it comes to nerve damage repair! We need more people educated in this type of thing! :)
 
Andrew, I looked up your link. You have pyridoxine-dependent epilepsy. Pryidonine is an abnormal lack of Vitamin B.
1. It begins in infancy-usually status epilepticus and tonic clonic seizures.
2. It is common to have hypothermia, dystonia and rigidity.
3. Anticonvulsant meds are inefifctive.
4. It is treated with large daily doses of Vitamin B 6 or pyridoxine.
5. This type of epilepsy occurs in 100,000-700,000 people. 100 cases have been reported worldwide.
6. It is unclear how a lack of Vitamin B 6 causes the seizures.

I agree with Jfpinnel, you should have large doses of Vitamin B Complex to keep it under better control.

Some of my meds cause a depletion of B-complex. I am on it on a daily dose.

Andrew, how many seizures do you have, as an average and what kind of seizures, since meds do not work on a lack of Vitamin B-6 (Pyridoxine).
 
Ruth said:
Some of my meds cause a depletion of B-complex. I am on it on a daily dose.
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How or what form of B do you take? I am supposed to take it but have not found any forms yet that don't cause terrible tummy aches :paperbag:
 
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Hi, I take the brand name of Spring Valley,

It is Natural Super B-Complex. I take 1 tablet a day. I am under doctor's orders to take it. Even otc supplements can have side effects with our meds. So ask you doctor first.
 
Ruth said:
Hi, I take the brand name of Spring Valley,

It is Natural Super B-Complex. I take 1 tablet a day. I am under doctor's orders to take it. Even otc supplements can have side effects with our meds. So ask you doctor first.
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Yes, My doc says to take a b complex as well, as a matter of fact I have that same one you describe, hard to take it daily b/c it makes my tummy hurt something fierce.. any suggestions?
 
The b-Vitamins can be a bit acid, so take them with a light non-greasy meal if possible.
 
This is going to sound strange perhaps. Try a bit of apple cider vinegar in some yogurt with it. There's a good chance that either your tummy doesn't have ENOUGH acid (ironic as it sounds!) or your digestive enzymes aren't sufficient. (Same with heartburn...if you eat too much, your tummy doesn't have enough acid in relation to the amount of food. It could be that you don't produce enough to effectively digest that B-6. (I've explained this one several times in other threads.)
 
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I had my first seizure (grand mal) back in 1992. I was driving home from work, the next thing I remember was being parked in a neighbor's driveway with my tongue half bit off. Diagnosis TLE with multiple focal points.
 
Nakamova said:
The b-Vitamins can be a bit acid, so take them with a light non-greasy meal if possible.
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Thank you Nakamova, I will try that.. I already tried the yogurt thing, but I am dairy sensitive, so.. lol that didn't work out so well.. :cheers:
 
Elaine H said:
Hi Mike
I thought it was me that had been stuck with my "wobblers" the longest ever!!! I was diagnosed with TLE in 1986 aged 23, and I'm now 48, so there ya go, a quarter of a century!!! I've had brain surgery twice aswell!! I call them wobblers because it's the only way to deal with it, and that is to laugh at it, my first surgery was in 2000, I was seizure free for just over five years, passed my driving test, got a great new job, and it came back in 2005, I then had my second op in 2008, and I still have cluster seizures, I try not to tell too many people with epilepsy about this, it doesn't look good does it, and I don't want to put people off surgery, it's just my bad luck I guess, and I seem to be stuck with it!
I hope all is well with you Mike, do let me know, what medication you are on etc, I am still trying to find the right balance, although one of my AEDS has finally stopped the dreaded auras, thankfully!!

Best Regards
Lainey
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Hi Lainey,

Sorry its been a couple weeks for a reply. Been recuperating from jpouch surgery. As now my other problem has been fixed. :) Now about my good ole seizure prob. Actually on 3 meds at the moment which include Depakote, Lamictal and Felbatol. I starting taking the Felbatol in February of last year that has helped the most. If you'd like to know more please feel free. -Mike

survivor said:
What a competition! ha ha ha! All boasting abt the thing they hate the most! Well on a serious note, we all are so brave, competing here! Dear Mike do tell when u come back from hospital. Take care! What surgery is it! Do tell if u want to tell. And as far the competition, I lag behind a lot................................ just 20 years!! 20 balck cloudy years! But yes! every cloud has asilver lining!! What say?
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Hi survivor,

Sorry to you for a rather long reply back as well. To answer your question, I had j-pouch surgery. Was a 2nd surgery after losing my colon. :( Now with the j-pouch i'm back being able to go normally.-Mike
 
Thanks to all who replied to the thread! Here I thought 18 years was a long time with seizures, wow!
 
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