Another new recruit

[jgeekie]

I totally missed the post about introducing yourself here before posting elsewhere, and want to apologize for that to the people who run this forum.

My name is Jay, and I have epilepsy. I was diagnosed at age 4 and have manifested absence seizures since before then. I had my first tonic-clonic at age 12 and have had a couple since then. I was put on valproic acid to deal with that. The epilepsy seemed to disappear around age 17, and I was actually off meds for 13 years. Slowly though, things have become unglued and treatment has recommenced.

I've found that treatment in my case has been much, much more effective with perscription meds and taurine. I'm a big fan of non perscription answers to the problems I have if possible.

I'm not sure what else to post here, but I'm willing to answer any questions people have. I have a battery of questions and ideas I'd like to bounce off the community and I'm very happy I've found what seems like a solid group to learn from.

Jay

 

[LJ-Bain]

Welcome!

 

[Chaz1]

jgeekie,

Big warm welcome to CWE.

I’m not one to share easily, I feel I can and do and I have truly learnt so much by others sharing their E journeys.CWE has helped our family in more ways that I can say, and 'Hope' being #1, 'Education' being #2, and I could go on and on and on

We sure can learn from your E journey and hopefully (no doubt) visa versa. 13 years free was a long run, so sorry they returned. Are they recommending same med?

My Son (26) is on valproic acid, was diagnosed 2009 (end but had seizure before then only not T/C) and after a rocky patch to start was controlled for 1 year and 7 months. Though still on meds, he started having big breakthroughs, enough of them to up the meds to prevent them becoming the norm.

He moved in with his girlfriend and it was like the flood gates opened, so we have pretty much figured out that’s it is emotional stress (how his brain manages) turned them back on, so we working on that in every way we can, therapy, N/F therapy (brain training), diet, sleep, nutrition, acceptance and awareness...and though not fully under control we are seeing improvement in the seizure types and lengths and their overall impact….dissecting the why (just looking and recognizing ‘potential’ triggers) can shed light. we working to get him back to reduction of med and pray long term, like you he may be able to take a real long break off the stuf...

keep sharing please..

Wonder has anything major changed in your life (style)?

 

[jgeekie]

Well.... Best guess at this point is a combination of factors the biggest one being a specific gluten protein in wheat. I was diagnosed with a wheat allergy when I was little and it basically disappeared at the same time the seizures ceased. I was able to eat bread without any ill effect for years and then suddenly I started to manifest some very, very ugly symptoms from it. As the old problems from my childhod started to reappear (nausea, lack of focus, fluctuations in energy levels, abdominal pain, joint pain, inflammation, insomnia) so did my partials. Stopping wheat consumption triggered something that a friend of mine who works at a clinic that deals with heroin addicts says she would ahve confused with the withdrawal symptoms she sees in her clients.

I started on a cyclical diet of small amounts of wheat every 4-5 days to try and balance the symptoms at both ends of the spectrum at bay while at the same time sounding the alarm bells with my family doctor and neurologist. I was politely told by both that they were unrelated and this was "all in my head" (family doctor's words).

This was followed by my own personal Hell with 5 hours of convulsions in a single day and a four day coma. I can't get a straight answer from anyone if my heart stopped. They say the convulsions stopped because my muscles actually ran out of fuel and it was not possible for them to actually respond to the signals from my brain. You can read more about this part in the Lemonade stand section if you want.

Since then, I've started taking a mix of trace elements and magnesium supplements as well and stopped calcium intake. It's a lot of changes, but I can feel things repairing and rebuilding and I feel stable again. What's scary is that I'm not sure why I seem to be reacting to wheat again. It's not all gluten because I seem to be able to eat rye and barley without ill effect, and that rules out celiacs. It's something specifically about wheat.

No recent increase in stress or anything like that. In fact, my stress level in the past few months is substantially less than it was a year ago so I've dismissed that as a trigger.

I fear I'm becoming a little long winded here, so I'll stop now. It's nice to have people with a common experience. Talking about epilepsy with my friends has always felt like talking about jogging with a group of wheelchair bound people.

Cheers everyone!

Jay

 

[Chaz1]

Could be the wheat you are eating is genetically modified?