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Epilepsy

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Epilepsy

Postby Palaver » Mon Oct 29, 2012 5:50 am

I did a search but couldn't find any threads about epilepsy.

Does anyone else here have it? How old were you when you had your first seizure? What kind do you have? How have you been treating it? Do you experience auras? And so on and so forth...

I had my first seizure at age 17 and have been on various medications since. Fortunately I have only had two seizures in as many years but there was a period where I was having about one a month. I have grand mal seizures as well as some petit mal seizures and I always experience auras before the grand mals.

No one is sure why I have epilepsy. My sister does as well. My mother believes it's because we're from Rome, GA and as children we happened to live less than an acre away from a site where G.E. dumped massive amounts of PCBs into the local water. They eventually shut down their transformer plant and it has gone unused since because it is so toxic. They are currently performing their fifth cleanup of the site that was near my childhood home and it PCB levels are still high enough there that they have to rotate out workers. This is a really nice area bordering a private college and a national forest too =/ G.E. has since spent over $700 million on cleanup, lawsuits, and studies on three areas in the U.S. including my hometown due to their gross negligence. It's worth mentioning there has been no direct link between PCBs and epilepsy in humans but there have been studies done on lab rats that show PCBs most certainly cause various forms of cancer and neurological disorders.

The other theory is head injury sustained at age 16. Not as exciting.

What about you guys?
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Re: Epilepsy

Postby johnbc » Sat Nov 17, 2012 5:30 pm

yah me too and at same age 17 though i've never been around rome GA. take a MRI to find more answers on the seizures ...or even a sleep eeg.
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Re: Epilepsy

Postby snugglywuggly94 » Mon May 16, 2016 3:52 pm

Hey, epileptic buddy!

I was 6 when I had my first seizure, but the doctors said it was a fluke-thing. When I was 12, I started having myoclonic jerks and passing out now and then, but my parents thought I was just being "spazzy." I was finally diagnosed at 13 with JME. My mom kept slapping me because she thought I was possessed xD (she's Greek).

I've been on Lamictal/Lamotrigine, Keppra/Levetiracetam, Zonegram/Zonisamide, Onfi, Klonopin/Clonazepam, and a lot of others that I can't remember. I'm refractory now, so meds only work on me for a little while and then I have to switch.

I used to get grand mal seizures all the time as a teenager. Then for three years, nothing. Then, last year, I had to drop out of university for a bit because I had 5 or 6 GMs in one day and I had to be monitored in the hospital for quite some time.

I haven't had a GM seizure for about a year. But I still do have auras almost everyday. A couple months ago, I started looking into medical marijuana. Marijuana is still illegal in California. So, I decided to just try a cannabinoid oil (basically marijuana without the THC stuff that gets you high). When I feel auras coming on, I take some of that. It's kind of expensive...about $30 for a small bottle that lasts a month, but I feel like it calms me down.

No one knows for sure why I have epilepsy either, but if anyone in your family has migraines or things like that, those are linked together. My dad and grandma both get migraines and those carry the same genetic traits for epilepsy.

Do you have JME, temporal lobe, catamenial, generalized, etc?

I wish I had temporal lobe because then I could get surgery to get it out. But unfortunately, I have JME, catamenial and generalized.

If you're aware of the ketogenic diet, I tried that for treatment. It didn't work for me, but it does work for a lot of patients.

I have found that relaxation exercises (hatha yoga, deep-breathing, t'ai chi chu'uan) has really helped me, because stress is a huge trigger. Also going to sleep around the same time and getting up around the same time. I also always carry sunglasses on me, and if the lights are too bright inside, I put them on.

Finally driving at age 22 and on track to graduate at the end of this year. Considering vagus nerve stimulation. Anyone have experience with VNS?

- Vanessa
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Re: Epilepsy

Postby thatgothgirluknow » Fri Jul 08, 2016 6:34 am

were looking into it right now my sister has it as well i have been having what appears to be myclonic jerks and partial seizures as long as anyone can remember since i was living with my grandma it didn't get looked into till i was 13 and i was told it was developmental and would go away and for as long as i can remember i have had absence until my latest therapist realized it was to severe and i had many too many gaps in time we thought it was dissociative
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