New to forum. Here's my story.

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jma5679

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I'm a 28 year old female who has dealt with what I believe are atypical absence seizures for as long as I can remember. I didn't learn that this is what I actually had until 4 or so years ago when I was semi-diagnosed by a neurologist. I've been in my childbearing years since my early diagnosis, so I haven't been able to finalize the diagnosis as of yet. I've spent a lot of time reading about them and it sounds like a fairly good description of what occurs, but I can't find any material from people who actually suffer from them and their description of what transpires.

I can go months without having an episode. I usually know they are about to occur the day before because I start feeling a little funny. I begin to lose my appetite and become somewhat listless. I get a metallic taste in my mouth. The following day, I usually have anywhere from 4-8 episodes. The best I can describe an episode is a very familiar day dream. When they occur, I can hear people talking around me, but I can't respond intelligibly. I then have this day dream that at the time seems super familiar, like one I've had a million times. But, as soon as it's over, I can't remember what the dream was about. I've tried to write it down during the episode, but I can't read my handwriting afterwards. Once it's over, I usually feel a little nauseus for 30 seconds or so. The whole episode probably lasts 60-120 seconds. Within 24 hours, the episodes generally disappear and my life returns to normal until the next cycle. I've tried to relate it to foods I eat, lack of sleep, hormones, etc. But, I always come up empty handed.

It's not a huge impact to my life, so I doubt I'll ever want to consider taking regular medication. But, I would love to know if this is the same experience of other people with this disorder, how you deal with it, a if I should be concerned that this might worsen with age, or if I should be concerned that my children could inherit it. Any input would be appreciated.
 

RobinN

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JMA - I want to welcome you to the forum.
I can't speak to the type of seizures that you are having. My 16 yr old daughter has been having tonic clonic seizures for 1.5 yrs. So for us it is a huge impact. So far meds haven't begun to be any help. We are using a combination of a healthy nutritional plan and hormones.

I was just reading a good book called- Epilepsy: a new approach. You speak of smells and so do they. They say if one of your auras is a smell, then perhaps using a different smell to counteract it. I am going to read again to see the other suggestions for auras. My daughter usually loses her memory of the hours that lead up to the seizure, so it makes it difficult to change the course of the seizure. There is good research to show that it is possible for some.

I am glad that you joined us.
 

Bernard

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Hi jma, welcome to the forum. :hello:

My wife had absence seizures, but I don't think they were similar to what you are describing. She used to have multiple absence seizures every day. She hasn't had one in over 10 years now since she first tried EEG neurofeedback.
 

brain

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:hello: JM!

Welcome to CWE! I have Absence seizures, but
none as you describe, I just get a lot of blinking
and blank expressions and staring before loosing
consciousness if it generalizes, otherwise, I merely
just loose my train of thought or where I was and
get confused easily. People first took it all as me
"daydreaming" or "drifting off to space".

With the current meds I'm on, I don't get them very
much, and when they do strike, it's very brief and
sporadic. Odd part is, I don't get any warnings or
auras - they just hit me.

Sorry I couldn't be of help there. Maybe someone
else can.
 

Birdbomb

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Welcome jma

I think you'll like it here. We are a very friendly bunch!
 

Meetz1064

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Welcome to CWE!

You'll learn an awful lot here. And we're really friendly here, too. Hopefully we'll be able to help you find what you need......
 
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Hi JMA - welcome!
I have had similar seizures to what you are describing. I understand the metallic taste and the warning signs. I had been getting these "absence seizures" for years without knowing what they were. I belive that we are lucky to have the warning signs so we can somewhat prepare for the bomb to drop. I have never had a warning sign for the grand mal seizures.
 

jma5679

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To Angysgirl1978...

It's a relief to hear I'm not the only one who has these sorts. How long have you experienced these? Have you been to a doctor about it? How often do they occur?

Thanks!
 
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The absence seizures have been going on for years, and I always thought it was a learning disorder because I would blank out and for a minute or two be in another world. Now I know thats not the case. The metallic taste began 2 years ago, after I had my daughter. My doctor at the time told me to take vitamins. Yeah, ok. The 1st neurologist I saw didn't think there was a link, but now I am seeing a neurologist who specializes in epilepsy, and I really trust him. Since I have been on Keppra I haven't had any symptoms, with the exception of some muscle spasms.
 
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