[jenD]

Its possible i'm having absent seizuer. and from what ive read most meds are very invasive and i dont want to be given just any type of anticonvultion or seizure med, i've heard drs play around with meds that have terrible effects and that worries me if this does turn out to be epilepsy? thanks guys
i'm on low dose valium at the moment until we learn more about what going on. EEG MRI ect.
jen

[jccgf]

Hi Jen,

You will probably get more and better advice about AED's on the Epilepsy forum.

But, my daughter took Depakote (valproic acid) for about 3 years for her absence and partial seizures. At least at the time, it was the drug of first choice for absence seizures in a girl her age (then 12). Best not used during childbearing years/pregnancy. She had about a 20 pound weight gain in a couple months time, although she was a young teen in her growth years so that may be deceptive. Still, weight gain is one of the better known side effects. She also had stomach upset with it, and drowsiness, but those got better after the first months. After a couple of years, she began to show mental slowing/concentration problems on it... and we weren't sure it was a drug side effect, seizure acitivity or something else. The doctor decided to wean her off, and she's been medication free/seizure free since (six years now). Her mental sluggishness/cognitive problems disappeared.

All AED's have some potential side effects, so nobody wants to be on them unless they have to be. Many people have no choice, especially if their seizures are frequent or severe, and finding the best drug can be a matter of trial and error and very individual.

Meanwhile, we did find out that my daughter has an underlying B6 deficiency (pyroluria), that I believe was causing her seizures. Just google up B6 GABA seizures. Anyone with celiac disease has the potential for vitamin deficiency, so finding a doctor willing to look and treat nutritional deficiency could be important for you too.

Let us know how the EEG and MRI turn out.

Cara

[KimS]

Epilepsy is a very general term. It's really like saying IBS of the brain... which means... we don't know what/why but let's try some meds and see if they work for you.

That is not a criticism of docs. by any means... it's what they are taught, know what to do... and have seen it work for people.

What they haven't seen or had much experience with or been taught, is that dietary control can help people avoid/reduce drugs and still improve their quality of life.

During WWII there were plenty of case studies where people with seizures improved because they could not get hold of any bread.... same thing for IBS-type issues and for schizophrenia, depression etc.

Basically it seems to be that people were eating a paleo-type diet. I have read accounts over the past several years about people who:

1) did not respond to a gf diet, but did respond to a gf/cf diet
2) did not respond to a gf/cf diet, but did respond to SCD
3) did not respond to a SCD diet, but did respond to a more restrictive diet (for example: also no nuts and/or no nightshades and/or no lily family)

This is part of the reason I continue to be such a big proponent of a Total Elimination Diet... it gets you down to YOUR basic foods in the fastest way possible. Also, you learn to acknowledge the messages that your body gives you rather than depending upon testing which can be inaccurate.

This is time consuming and, many feel, too much work... but I've seen it work for people who have had testing done and the testing really didn't get them much farther ahead because there is no testing for 'sensitivities' and sensitivity impact on a person's quality of life is not really acknowledged in the medical community - yet.

You need to decide what course of action you need to take. I know many people who just feel better taking a pill. They feel like it is a type of insurance... and these personal choices need to be okay and deserve support. All situations are unique to themselves.

If you want to know more about SCD - the group that can help you with it is connected to pecanbread.com.

Don't be intimidated by the fact that it is for autistic children - there are all kinds of other people there who are just not as vocal... ask about who improved their seizure situations and you will either get several answers or referrals to posts where people have written in about their improvements. You could even do a search first to see what you can find in their posts and files.

I am hoping that you are not operating large/dangerous equipment until you figure this out.

hth

[KimS]

Originally Posted by jccglutenfree

Meanwhile, we did find out that my daughter has an underlying B6 deficiency (pyroluria), that I believe was causing her seizures. Just google up B6 GABA seizures. Anyone with celiac disease has the potential for vitamin deficiency, so finding a doctor willing to look and treat nutritional deficiency could be important for you too.

Let us know how the EEG and MRI turn out.

Cara

Yes, speaking of GABA, you can improve your levels by practising meditation or yoga. This has been studied for years and years. Scientists who don't know about other testing seem to think they've 'stumbed upon something' and don't like to say that their findings are conclusive but you can decide for yourself. Do a search at docguide for 'increase gaba'. That should get you plenty of reading material.

It will also back Cara's idea that malabsorption can really mess up brain chemistry.

We also had a brain situation (I don't like to say the 's' word because it was never official - but 'it' cleared up extremely quickly once we removed food offenders) and we happened to be supplementing B6 and zinc also. (Just by chance we were doing the same as Cara as I did not have a computer back when we started and I did not know her yet.)

Five years later and supplementation has been reduced to once or twice a month, rather than every day. Supplementation is another spot where knowing how to 'read your body' comes in very handy.

[jccgf]

Thanks Kim,

I must have been in a hurry (I am...need to shower before that dentist appt). You covered a whole big area I just missed. Knowing what I know now, I would certainly start with an elimination diet (SCD a good place to start) and nutrition to try and control seizures.

I've also met other people with pyroluria... (resulting in deficiencies of B6, zinc) who had seizures that resolved with proper nutritional therapy.

These things our neurologists don't know or don't tell us about.

Cara

[NancyM]

I'll just throw this thought out there. I follow a low carb diet and am active on a message forum about low carb dieting. I ran into an epiletic woman, in her 40's I think, who mentioned her seizures were dramatically reduced on a low carb diet. I know they use a ketogenic diet on kids, but apparently it can help adults too.

Anyway, just an idea, I don't know if you'll have any use for it or not.

[RathyKay]

My son has epilepsy. "Epilepsy" just means recurrent seizures. It doesn't bother me that my son has epilepsy. It just bothers me when he's having a seizure. Does that make sense? Many successful people have / had epilepsy. Mr. Kay prefers to say Tom has seizures. Some doctors will say "seizure disorder," but it all boils down to epilepsy.

Anyway, Tom does not have absence seizures (yay!). I did look up in my book ("Seizures and Epilepsy in Childhood" by Freeman, Vining and Pillas... "the book" for the Child Neurology seizure crowd), and valium is used for absense seizures, along with ethosuximide (Zarontin in the US), Valproic acid (Depakene, Depakote in the US, epilim in the UK), and Benzodiazepines (Diazepam/Valium, lorazepam/Ativan, clonazepam/Klonopin, clorazepate/Tranxene). Of these, I only have personal experience with Depakene (Valproic acid) for Tom's partial seizures.... weight gain (which was good for him), poor bladder control at higher doses (and I've read other adults complaining about nighttime accidents while on Depakote), hairloss (another big side effect), and that's all I can think of for now. At the time, I thought it was a good drug for him. I don't miss it, though.

Unfortunately, doctors have to "play around with meds" because different people react differently to them.

Tom's big seizure trigger is dairy. Should you decide to give up dairy, you need to give it six weeks to get it out of your system. Be warned that Tom had withdrawal seizures two weeks into our dairy-free experiment. They weren't as strong, but he had them. We went eight weeks dairy-free, and then let him have some. He did not have a seizure, but he was soooo hyper and it took three days for him to calm back down. It is my theory, that he needs a steady "milk buzz" to get the daily seizures going again. But, I'm not going to prove that. I'm happier with his drug-free progress and alertness.

Our neuro recommended vitamin B6 and magnesium as being "calming" to the brain. So, in addition to the multi-vitamin Tom takes, he takes additional B6 / Mg. And, all of these drugs deplete something or other, so if you aren't on a good multi-vitamin, *please* start.

A seizure log is also a good idea. Feel free to write down anything that pops in your head, as it may help determine your seizure triggers.. time of day, how long it lasted, what you were doing (some people react to flicker of lights... TV, fluorescent bulbs, computer screen, sunshine through the trees as you ride by in the car), weather (sudden thunderstorm), what you last ate or anything you ate recently that you haven't had in a long time. With absence seizures, you'll probably just have to guess if / when you had one. Anytime you notice sudden loss of time, write it down.

Now that I reread this, I realize we've also used Diazepam/Valium with Tom. He is currently med-free, but this is one of my "he's acting kind of seizurish, I'd really like to give him something to make it stop / or keep it from getting worse" emergency drugs. He's had it three times over the past year and a half? All three times he was in a vomiting, chewing, sleeping cycle that didn't seem right. He threw up the Diazepam 10 minutes later, and then slept for a few hours and was fine after that - vomiting cycle broken.

That's all I can think of for now. (((Hugs))) Seizures suck.

[jenD]

THANKYOU ALL SO MUCH, YOU DONT KNOW WHAT THIS INFO MEENS TO ME.
I'M VERY FRIGHTEND AND I'M GOING TO HAVE TO TRY TO STAY OFF THIS DUMB COMPUTER FOR A WHILE UNTIL I GET A NEW FLIcKER FREE SCREEN, AS ITS MAKING THINGS WORSE. AND THAT ANNOYS ME AS I NEED TO LOOK UP ALL THIS INFO YOU'VE JUST GIEN ME . HUGS JEN.D

Originally Posted by jenD

Its possible i'm having absent seizuer. and from what ive read most meds are very invasive and i dont want to be given just any type of anticonvultion or seizure med, i've heard drs play around with meds that have terrible effects and that worries me if this does turn out to be epilepsy? thanks guys
i'm on low dose valium at the moment until we learn more about what going on. EEG MRI ect.
jen