New member, from Texas (Longg intro-sorry)

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Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

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Ruth said:
Hi moonchild

This is a great place. Bernard made it out of love for his wife Stacy. It is a forum made out of love.
I love it here. I think you will too. Welcome!! Check out the Social Groups.

Ruth
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You will love it here, along with Cathy and the rest of us!! Ruth
 
Hi Moonchild, I am lovin it here already...just like Ruth says. :)

Thanks everyone.

I am sitting here waiting for the lady to get here and hook me up for the 48 hr ambulatory EEG. Fun times. If I don't have a seizure with the thing on, will it atleast pick up on any odd waves or something?
 
I spent three days in the epilepsy monitoring unit and they sent me home with saying I do not have epilepsy because nothing showed up. There were recorded events, so it can be frustrating as if we don't feel others doubt our condition to begin with. They sent me home with psuedo seizure diagnosis, which is actually non epileptic activity disorder. even more rare than epilepsy and not much about it in the United States. Please let me know how everything goes and shout if you need to talk.
 
Ruth said:
Hi matchu,

What non alcoholic drinks are you talking about? I cannot drink at all, it is a trigger for me to have seizures. Ruth
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becks beer makes them and quite a few others. I go with imports for the flavor, most of what is offered as far as American beer might as well be water. So you can have a few cold ones with friends and not be left out. I always insist my friends taste it so they wipe that look off there faces. I am going to have start drinking the non alcohol again because seizures are coming back. small sacrifice if you ask me. Now if marijuana was legal life would be grand!
 
Good luck Cathyanne! I hope that you get some answers. I've had problems since 1997. And been told it is Fibromyalgia and migraines, possible MS. It is good now to finally have answers with the proof to back it up. It has been a looong trying road.
 
CathyAnn, they might do telemetry on you for a while - monitoring your barin wave activity from your bed while your head is connected to the electrodes.

What the others have said is true - you might not show any seizure activity during this process, but later on something might provoke a seizure. Regardless, we're all rooting for you!! Remeber - break every rule in the book that you can think of! It will bring some humor to the patients as well as the over-worked staff. Humor in a hospital is a necessity, especially when people are feeling miserable. You can be a ray of light & humor for them!! :clap:

{{{HUGS}}}

Here's what I said via e-mail:

"Cathy, they might not have felt that it was necessary for you to have the strobe light test done. Things have changed drastically since I had mine done, but in 1991, they used the strobe lights @ Montreal Neurological Institute - world famous for its research on epilepsy & neurosurgery.
 
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Oh, I am not in the hospital, I am at home. Its called an ambulatory EEG. I just have to keep a jurnal of major activity changes and if I feel odd or strange...
 
Cathy, that explains why there's no strobe light! If you were in the hospital, you'd have been given the strobe portion of the EEG.
 
Hi McGill,

Love your photo!! When I was in the hospital, I have never been given the strobe light. Every hospital is different.

Hi Cathy, I had the ambulatory EEG done sometime around the end of the 1960's or very early 1970's. No strobe light was involved in mine.

Matchu, I will check out Beck's beer.
 
Ahhhhhh

the lovely ambulatory EEGs. I do have them done on a regular basis...I've had six in the last year. That's how they found my focal seizures and my electrographic seizures....but mine usually last 72 to 96 hours.
 
Meetz are you referring to the EEG or to the seizures? There's a bit of doubt & confusion here, if you're referring to seizures!! I'd be extremely concerned if a seizure lasted that long!
 
I have had the ambulatory EEG done. Meetz is talking about the EEG, not the seizures. The EEG shows up if there is any seizure activity in the brain. Only the brain, not that she is having any seizures that she is actually having.
 
Eeg

Hey Kathy Anne,
So glad to here from you, we are neighbors, I used to live in Garland but moved over to Dallas. I just finished a 72 hour video EEG. It wasn't so bad, I took a little sit bath each day, just be EXTRA careful to secure the receiver box as not to get wet. I am on Topamax and Lamictal but have developed a rash and fat tongue so doc said stop taking Lamictal now. Hope to here more about you and that all is well. Cake
 
:eek:)

Thank you, Ruth!!!!

Ruth is right. The ambulatory EEG is what I'm talking about that lasts for 72 to 96 hours, not a seizure. Heaven help me if one did.

I do have plenty of after effects that last for over a week after one of my t/c's, that much is true......

The ambulatory EEGs will do a good job of capturing events on the "recorder". They're not perfect, nothing is, but, when you are around your natural environment, and your natural triggers, it makes more sense that you would be able to trigger more of your seizures.

My neuro has had me do, oh---5 of them in the past year. Due to 2 more types of E showing up. Annoying, but worth it.

Good luck, and take care.

Meetz
:rock:

PS. Thanks again, Ruth!!:bigsmile:
 
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