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Post by ADMIN on Sept 13, 2006 15:11:35 GMT -5
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Post by rocking4epilepsy on Sept 13, 2006 15:43:31 GMT -5
Guess I will be first.... My name is Jennifer and I lost my 3 year old son to Epilepsy 12-26-01 We are now a non profit in Iowa for awareness. I own my own sites and well as mod for another.
Some of you may know me as the mod for HW well....... To make a long story short. I went away last weekend to celebrate a family Birthday to return with no notice of being fired after TWO years. Guess I was not entitled to 4 days off after two years
Then to top it off I was in chat and someone asked me why I was not mod anymore. I sent them a PRIVATE message telling them such as above. and the admin READS PRIVATE messages he sent me a copy of the log. So Seeing I was truthful I was banned entirely can't see chit
So please BEWARE if you are on HW in chat and THINK your PM's are PRIVATE think again they are not....Please share this info with any friends there.
Glad to see some of you from HW
hugs
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Post by fourstar on Sept 13, 2006 17:02:20 GMT -5
HI I am going on 51 yrs old have been diagnosed with epilepsy since I am 11 yrs. Believe I had undiagnosed absence szs befroe the grand mal when I was eleven. Been on regular meds for epielspy till feb 2006 when their was nothing left to control me anymore. Thanks to the Dr 's mistakes . SO I have chosen to be pro active and tried homeopathy treatment, I had nothing to lose,I wasn't controlled anyway. I am now down to 1/2 tab of mysoline and hope to get off that one day too. I also have underactive thyroid ,which I believe is from all the meds I went toxic on. Supposedly the homepathy treatment will fix that too. I have been able to reduce the amount of herbs I take for it. I have given up on traditional treatment for myself. I did have the vns inplant too, but the Dr decided to take me off all my meds and I had a violent grand mal and broke my leads and never fixed it. After that happened I didn't trust the Dr to have the vns fixed thou I was sz free from the time it was inplanted (it was inplanted in me on). Now I take a homepathy med once a week and my 1/2 tab of mysoline once a day. Hopefully the day will come and I can drop the last 1/2 of tab of mysoline and be free of the medical world. fourstar aka Positive Person aka Riva
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Post by Mandi on Sept 13, 2006 17:13:08 GMT -5
I've suffered from seizures since about 11 years old off and on. No one really knew what was going on. I would just pass out cold and shake or get stiff. At 23, I finally was diagnosed with Catamenial Epilepsy in the form of grand mal seizures. I seize due to hormonal imbalances in the body. I am currently not taking any anti-ep drugs, but was on Dilantin for a period of time. Hormonal replacement therapy is an option for me, but have decided not to go that route at the moment. I also suffer from Polycystic Ovarian Syndrome, which commonly goes along with CE. So, that's it.. ;D
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Post by andrew on Sept 14, 2006 11:44:04 GMT -5
OK, so for those who don't know me: I started having seizures about 6 years ago when I was in my mid-twenties. This isn't when they're supposed to start, I know, but some people always have to be different. I currently average 3-4 auras a day and a larger seizure every fortnight or so. If any of them think they can stop me leading a normal, happy life, they've got another thing coming. Right now I'm on Tegretol, which has done some good, and Keppra, which really hasn't. Have also had to submit to a variety of amusing tests, most recently an ambulatory EEG earlier this week. This involved having two dozen wires superglued to my head for 24 hours. Personally I thought they looked rather natty.
Take care all, Andrew
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Post by Mandi on Sept 14, 2006 11:51:20 GMT -5
HMMMMMMMMMM...... I can post a picture in here right??? Drew has a lovely one for us... LMFAO
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Post by andrew on Sept 14, 2006 17:15:42 GMT -5
Copies available at reasonable prices, both in regular and large sizes. Guaranteed to frighten off cats, crows and unwanted household guests
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Post by Mandi on Sept 15, 2006 20:44:46 GMT -5
LMFAO Drewboy... You're hilarious ....
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Post by lizard on Sept 18, 2006 8:01:00 GMT -5
Hey, everybody! I'm brand-new to the forum and glad to be here. I'm a 39 yo mom (practicing saying "40," as I have six more weeks ), dx'ed with hydrocephalus (buildup of fluid inside the brain) at 3 weeks old. I had my first sz (grand mal) at 6 mo, but due to my childhood szs always resulting from some type of illness or shunt issue, I was never actually dx'ed with epilepsy until college, when I started having them from severe stress. Since then, there have been a few more, but I get good control with a small dose of med. The med, unfortunately, has never controlled my simple partials, but stopped them from generalizing. I tend to have them from whacky weather, whacky hormones, disturbed sleep, and illness, and they're always in big clusters of at least 8 to as many as 30 over a couple of days before they stop. They make me sick as a dog, so I'm not in any danger of being a danger to anyone on the road because I won't even leave the house. When I get them, they start by waking me from a sound sleep, usually in the middle of the night. They're about 4-6 times a year. That's about it... Neeeext... LIZARD
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Post by Mandi on Sept 18, 2006 11:23:55 GMT -5
Welcome lizard... Very happy to have you!!
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Post by heidihope on Sept 18, 2006 13:05:32 GMT -5
Hey, it's Rogue, from HW. I decided to switch and be with the rebels. I have dysautonomia, a big fancy word for my autonomic immune system is screwed up. I've had absence seizures since puberty, and probably a few tonic-clonics in there somewhere, but wasn't diagnosed with epilepsy until 2004, at which time I entered the fascinating world of trying innumerous anti-seizures meds that never actually work. Drug of momentary choice is Dilantin. That stuff is horrid. A portion of my brain didn't develop (I have a literal hole in my head, which matches my personality), and I have catamenial and temporal lobe seizures. I also have a heart murmur, arrythmia, asthma, GERD, chronic bronchitis and migraines, borderline diabetes, Reynaud's phenomenon, and - nope- wait- I think that might actually be it. It's much easier just to say dysautonomia. So, right now I'm not working, living off state disability and bored out of my mind, trying to get back into school for psychology. I figure I've been through enough, I should definately be able to help others. I just have to get to where I can crawl out of bed. . . so, yup, that's the short version, and moving on . . .
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Post by Mandi on Sept 18, 2006 13:07:23 GMT -5
ROGUE!!!!! Honey I'm SOOOOO glad you decided to join us. Welcome!!! ;D
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Post by heidihope on Sept 19, 2006 12:16:25 GMT -5
Mandi!!! YOU ARE SOOOOOOO WELCOME. I couldn't resist. I told you guys, you ARE HW!
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Post by Mandi on Sept 19, 2006 16:43:09 GMT -5
Well..... now we are.......*dum dum dum dummmmmmmm* HF!!! ;D
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ranman
Junior Member
Posts: 66
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Post by ranman on Sept 19, 2006 23:27:07 GMT -5
Rogue,
Glad you jumped over here from HW. This is where the best posts are.
Randy
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