New to the Site

[mha]

Hello all. I've been reading the posts at CWE for months, and thought I should post and introduce myself. (This is Long).
I was diagnosed with absence seizures at 9. I had my first tonic clonic at 12, and went through all the medications, without much success--or with side effects that outweighed the benefits.
I think I was what doctors call 'noncompliant', but that's okay, because my doctors were 'nincompoops' (and worse).
I was told, with each new drug, that this was the newest one, with almost no side effects at all, except I might be a little more tired. But for me, the side effects were Effects. Not off to the side, but front and center.

Up until my mid twenties, I had a total of about 5 tonic clonic seizures, the rest were mostly auras and absence szs. Then I started having one tonic clonic a month, around the time of my period.
My doctors wrote it off as coincidence, they'd never heard of such a thing. I knew it wasn't coincidence. I even noticed I had more auras when I was ovulating. And that began my interest in solving this puzzle myself, rather than being embarassed, or pretending it didn't exist, or hoping doctors knew more than I did about my brain and body.
I didn't have insurance throughout my twenties, or much money either, which probably helped. There was no way I was going to pay hundreds of dollars I didn't have to another "specialist" who had no idea how to help me, except to drug me into incoherence.
I found that taking about 15 mg. of phenobarbitol under my tongue, during the day or two before my period, helped. A single inhale of pot would stop my auras from progressing to tonic clonic seizures. I went two years without a tonic clonic.
I had a few more post-partum, after the births of my two kids. I have not had a tonic clonic in seven years. But it isn't gone. I always felt like I was fighting it.
Two years ago, I started having horrible anxiety-type attacks. It wasn't my heart. It wasn't anxiety--although these spells caused a lot of anxiety. It didn't happen during an eeg (of course). It felt like seizure activity, but different. Something new. My life changed drastically--I couldn't make plans, drive, commit to volunteer at my kids school--I never knew when it was going to happen. It was my worst nightmare, come true.
One day, I came so close to fading out into a tonic clonic--its the closest I've ever come without actually having one. I could not figure out why.
Long story short, I hopped on the internet and started reading, and reading, and reading. I tried progesterone, atkins, magnesium, daily phenobarbitol, Lamictal (weepy zombie with a rash, that was me for 2 mos.).
I asked my new doctor to test me for allergies--not eating wheat seemed to help a little. She gave me an ELISA allergy test, and of the 96 foods tested, I reacted to 18! My strongest allergy was to yeast. With those foods out of my diet, and taking digestive enzymes, the odd adrenaline-fading out-low blood sugar sensation was gone. (at one point, I bought a blood glucose tester and was testing my blood sugar during these episodes--it was steady, and in the middle-normal range). It keeps getting better every month--it's been three so far. I always had a strong feeling that hormones and nutrition were part of the answer.
The Dogtor J website was a start for me, but actually getting that ELISA test--which tests for delayed food allergies--helped so much. I always thought of allergies as immediate; hives, itching, anaphylactic shock. When I took dairy out of my diet, my skin cleared up. And without the test, I don't think I could have figured it out--I'm mildly allergic to cranberries, wheat and eggs--all in cookies I ate a few hours before my last serious seizure. I thought the seizure. activity was from a blood sugar freefall. I never would have known that a delayed allergy to cranberries was even possible!
I still have epilepsy and I'm sure there's more to figure out--I'm my own guinea pig and I wish neurologists were half--or a quarter--as interested in this as I am.
But finding those triggers and eliminating that stress on my system is helping so much, and I wanted to share that--and thank all of you for the information I've read in your posts over the past months.

[Nakamova]

Hi mha, welcome to CWE! (Or I guess, welcome as an official member. Now we can tell you the secret handshake).

Your post backs up a lot of the anecdotal evidence provided by CWE members regarding the role that food sensitivities and nutrition play in seizure disorders. I think epilepsy is very individualized -- not everyone has the same primary causes, secondary triggers, or metabolic profiles -- and it would be great if doctors would recognize that individuality, and tailor treatments accordingly.

Good luck with continuing to be successfully proactive!
Best,
Nakamova

[epileric]

It's always good to have new experiences here but being curious about diet & more "alternative" methods of controlling epilepsy I think it'd be great to hear your stories as they unfold.

[Bernard]

Hi mha, welcome to the forum (officially I guess!).

Hello all. I've been reading the posts at CWE for months, and thought I should post and introduce myself.

I love it when long time lurkers decide to register and join the community. It may not seem like a big deal to you right now, but forums really are a product (more than a sum) of their parts. Everyone's input is valuable.

... And that began my interest in solving this puzzle myself, ... I have not had a tonic clonic in seven years. But it isn't gone. I always felt like I was fighting it. ...
But finding those triggers and eliminating that stress on my system is helping so much, and I wanted to share that--and thank all of you for the information I've read in your posts over the past months.

Awesome!

[Ruth]

Hi mha, welcome to CWE. I am glad that you decided to join. Now, we can visit.

Bernard made this forum out of love for his wife Stacy. That love permeates throughout the whole forum.

I had my first abscence seizure when I was 6 years old. I had my first tonic clonic when I was 21 years old. I am 67 years old now. I have had status, jerking of my hands, "falling down seizures." I am on 5 medicines for seizures: Lamictal, Neurontin, mysoline, Keppra and clonazepam.

This is what works for me to help prevent seizures.

Glad to have you here to get your support.

[Endless]

Welcome, MHA!

I'm glad you found us.

You are a living example of how we are truly the most important person in figuring out and treating our own seizure disorders. Each doctor operates from their own narrow line of knowlege. Very few doctors take a holistic view. We are our own best detectives.

Well done!

[Aussie69]

Gives me inspiration to become my own doctor! Yes, doctors can work from a book just a liitle too often and forget each person should be treated on a case by case basis.

[Ruth]

Sometimes doctors forget that each one of us are individuals. The causes of our seizures can be different. Meds work different on each one of us.

[Aussie69]

Which is why a little more rspect must be given to each person's needs.

[RobinN]

mha - Welcome. I am glad that you decided to join in.
I love to hear nutritional successes.

I believe we are about where we are at this time. Though I do believe Rebecca's seizures have a strong blood sugar component, I am not sure she had the best allergy test available. I paid out of pocket but took what was offered. I have heard about the ELISA test, and I need to compare it and what we had. Thanks for the reminder.

I too believe there is a leaning or sensitivity towards seizures, but the more she "heals" (for lack of a better word) the longer periods of time she can go between seizures. Thankfully the calendar I have proves this Others that are concerned that she is not taking medication realize that we are on to something.

I hope that you have continued success with the path that you are on.
Would you mind telling me what enzyme product you chose to take?