Wow. It's not just me.

[draggrif]

Oh god, I can't tell you how much of a relief finding this forum has been. I've been having problems since I was 12 or 13, and before meds my seizures kept me in a near constant state of hallucenation and terror (weirdly no one thought to send me to the doctor when I'd run screaming from class or was found on the floor of the girls room unable to move or speak) I was too scared to go to a doctor until an old boss of mine forced me to go or be fired, and when I did I was given a schizophrenia diagnosis. I was put on antipsychotics which only helped a little, a thing which confirmed my family's opinion that I was faking it. It took years before the doctor revised her diagnosis to possible epilepsy and changed my meds, but she didn't tell me I had a new diagnosis. I found out when I needed her to write a letter to the unemployment office about my work problems. It said 'seizure disorder' and 'partial complex seizures.' I was eventually sent to a neurologist, who ran several expensive tests and didn't tell me anything about what was going on or what to expect.

I've been so ashamed of my problem and half convinced I'm somehow subconciously faking it like my family says, because my seizures were so strange. I finally got online and looked up what exactly seizure disorder was when I began having problems at my new job. None of it made me feel any better, until I found this forum and read what people were posting and realized I understood what they were talking about. It's not just me being crazy or unconciously faking it to get out of work. It's actually something and it has a name and other people have it to. Whew. That is such a load off my mind.

*rambling* Anyway! So glad to find this place. Hello everyone ^_^

[Nakamova]

Hi draggrif, so glad you found us!

Unfortunately a lot of folks take a painful, circuitous route to an epilepsy diagnosis. It sound like your path was especially frustrating. I hope you can find a doctor or neurologist who will actually communicates properly with you. Information can be a powerful coping tool, so don't be afraid to pester your neurologist for more details about your diagnosis.

And I hope you feel free to post questions here. CWE members represent a vast storehouse of advice, feedback, and support. We're not doctors, but we can offer understanding and empathy, and there are forums here for venting, chatting, and laughing too.

Best,
Nakamova

[occb]

It's such a relief to find out you're not alone, isn't it draggrif?

My partner is still in the undiagnosed stage, but a lot of your story sounds familiar: family not thinking to send him to doctors, him being to afraid to go because of what it could be, later misdiagnosis as a psych disorder...

Well, now you're in good company with a whole whack of people who understand. That helps a lot.

[Bernard]

Hi draggrif, welcome to the forum.

Make yourself at home here.

[Endless]

Hi, Draggrif,

Oh, yeah. There's lots of us in here just like you. And lots of us had a muddled road to diagnosis. I've had seizures since my teens, too, and just got diagnosed in my adulthood. I was very relieved when I found this forum. It wasn't on my doctor's list of recommended reading, and it should be!

[occb]

Can you believe that the E Association where I am didn't even know about this place before I told them? And they have a support group, and none of the people there had ever considered going online, and didn't know about CWE.

Online is the first place I went -- especially since partner is undiagnosed, and we didn't know if we'd be turned away from the E society because of that (nope. They were very welcoming).

Anyhoo. I guess my default is set to virtual.

[Rhea]

welcome Draggrif! One of the many things I found out when I joined here, is the many varied aspects of a seizure. I don't have what most people have "typical" seizures, and even my family has a hard time accepting the diagnosis. (Even I did) You will learn more here than anywhere else on the net. After all, most of the people who write those articles and stuff don't have E. They are going by what other people tell them or what they get out of a textbook or some such place. THIS is real life here. Our own experiences. Makes it personal then.

[RobinN]

Welcome draggrif - wonderful to have you join us.

[Meetz1064]

I'm sure you're going to find all sorts of new friends, and things to learn here. And people with experiences similar to yours as well. You're so totally NOT alone.

Welcome to CWE. Mr B has built us an AWESOME home here, so feel free to kick back, relax, and enjoy the dinner party! Hopefully one of the guys will bring around some decent drinks, I keep screwing them up......I burnt the coffee again. Eric, Buckeye, where are you?

Take care....and enjoy your stay here!

Meetz

[dejavudu]

I'm new here, too. Believe me, I share your relief in finding a place that's full of people who "get it." For the longest time, people kept telling me my problem was all in my head. At least now...well, I can't really argue with them, but I think you know what I mean.

Hello!

[occb]

I'm new here, too. Believe me, I share your relief in finding a place that's full of people who "get it." For the longest time, people kept telling me my problem was all in my head. At least now...well, I can't really argue with them, but I think you know what I mean.

Hello!

lol As my partner likes to say, "Of COURSE it's in my head, that's where my brain is dummy!"

[dejavudu]

Hahaha, too cute!