Wednesday, March 16, 2011

Epilepsy Sucks


I was working on a post about something else entirely, but two things happened. One, I need to re-work some things about it because some parts I had written just don't work for me anymore, and the other is that I got something in my Inbox that I felt like sharing.

I subscribe to a newsletter from The Epilepsy Therapy Project at epilepsy.com, and this month's primary article made me stop and think a bit, I believe mostly because so many kids I know of lately are having a return of their seizures again so the Seizure Beast is on my mind a lot. It's frightening to think about how easy it is to trigger a seizure relapse when you have had seizure freedom for so long.

Let's face it. Epilepsy sucks.

To say that I don't often look at my son and wonder if and when his internal bomb might go off would be an outright lie. Does it add to my anxiety? Lots of things do, and yeah, it's definitely a contributor. My heartburn has become so bad of late I may need to investigate yet another medication for acid reflux. It's bad. Wakes me up at night sometimes.

Ah, the joy of stress.

This particular line really tripped me up...

Even some herbal supplements can increase the chance for seizures.


WTF? Herbal? C'mon...that just isn't fair.

Here is the article, called On My Mind: Drugs and Supplements that May Increase the Chance for Seizures. I want to pass it along for anyone that might be able to use the information and doesn't already get the newsletter.

OUT.

9 comments:

  1. No offense, but that article at epilepsy.com is rudimentary -- at best. The herbs listed ARE known contributors to seizures, but you'll notice as well that he lists many drugs that are considered anti-epileptic but that can CAUSE seizures if improperly used. Perhaps it's because I've been in this game for so long, but when I read articles like that I roll my eyes. The bottom line is that these guys are working in the dark -- it is up to us to navigate that darkness as well and what works for one person is devastating to the next. Of the eighteen drugs that we tried for my daughter's seizures, I can honestly say that nearly ALL of them either caused her great harm through side effects or MADE HER EPILEPSY WORSE. Chinese medicine, including herbs and acupuncture, osteopathy and homeopathy have been the most beneficial to her overall well-being.

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  2. Oh, man, Ken, don't you ever learn from my mistakes?

    In this club, do not ever, ever, EVER even hint at disparaging herbs or anything ending in "pathy"!

    Sheeesh. ;)

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  3. S.D....God loves all the "pathy's".

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  4. Whoa, take it easy on the new kid. I do realize that I am not as WILY as the veterans, and cannot tell the difference from the wheat and the chaff, but this is where people like yourself, a veteran, would be valuable.

    YOU CAN.

    So yeah...OK, maybe the article is rudimentary and worth rolling your eyes at. How can I know that? I'M rudimentary and worth rolling your eyes at. I pretty green at this myself. SO...that being said, if my attempt to get info from a source such as this seems flawed to someone with a level of experience like yours, Elizabeth, then school me.

    I'm an open-minded dude...tell me where I should point me melon and there it will be pointed.

    I have this same problem with a LOT of the other types of things I try to learn about when it comes to some of our issues. I just don't know where to look. Some people swear by one site, others by another. I run into it a lot in the Autism world and am at a real loss as to what is fact and fiction.

    As for you, SingleDad...I've paid attention in class, I would never diss the PATHY'S, not in this group...no way. NO how. Besides...I thought I was clear that my sentiment was that I thought it was unfair of That Which Controls the Direction of Life As We Know It that 'natural' stuff would cause seizure breakthroughs.

    Seemed wrong to me somehow. But...I wasn't specific about it. So, I suppose I should have been.

    Did I get out of bed this morning? I can't tell yet.

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  5. The tricksy thing about comments, and written communication in general, is that it doesn't use the nonverbal elements of speech, such as tone, intonation, facial expression, and gestures, which can modify or totally alter your message. Due to its linguistic limitations, a comment can come across or be interpreted very differently than it was intended. Probably that's why emoticons were invented, to protect cyber friendships. All this crap is to butt in and say that in my reading Elizabeth's eye rolling was directed strictly at the article (which you didn't write, so you are safe) and the guess-work that is going on in epilepsy treatment, and the tone in her head was probably much warmer than the tone that came across to you. Now, if you were actually dissing the pathy's, she might have cyber-wipped you a bit :)

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  6. But dissing psycho-pathy is ok, but only if he comments here ...

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  7. Yikes! I think I missed the party that I started! First of all, Erika's comments are oh so apt and true. I should create an emoticon of a mouth with a scythe for a tongue. And, Ken, when I wrote that I had just barely come down from a lengthy discussion with a school official and was fuming over some new shit that I couldn't possibly go into right now. I was totally not disdaining nor rolling my eyes at you and, to tell you the truth, not rolling my eyes at that article. I think after dealing for so long with so much of this stuff, when I see these neat little packages all tied up with string on websites, I feel -- well, I guess I feel the words "oh, brother. Tell me something that I don't already know." I actually deeply admire and respect that website -- it has done more for the community in its short life than decades of the Epilepsy Foundation. I'm an editor for epilepsy.com's parent journal and have actually published some stuff on the website! The list made me laugh because basically nearly everything in the universe can "give one seizures" --or at least that's what it implies. It's sort of like the drugs our kids take and the side effects: "this can make you euphoric or this can make you suicidal; may cause diarrhea or may cause constipation; may make you blissfully euphoric or may kill you." It is what it is, to use an over-used expression, and it makes me laugh my darkest laugh.

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  8. Well, the thing that gets me is how little they still know about epilepsy and the brain. Humans have such amazing understanding of all sorts of things and then you mention the brain and we run and hide like it's a magical device from the world of Harry Potter.

    I'm a huge fan of natural remedies because when I look at them I see that has worked long enough or for enough people that it's become common practice.

    What I would love to see is more research into foods/diet and why some can reduce or eliminate epilepsy--seems to me that something is going on there and it's largely being ignored.

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  9. Agreed Katy, diet is super critical and oft-overlooked.

    And Elizabeth? I just over-analyzed. My bad.

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