Hello!

[summerf]

Hello, everyone - I'm so happy to have found this forum! This is my first post, and I'm new here. I'm not new to seizures, though. I had absence seizures as a child, although I didn't know that's what they were until I was an adult. It used to piss off my mom because she'd be talking to me and my face would go blank and I wouldn't respond to her for a bit. It wasn't a horribly long time, just long enough to be noticeable. She thought I was tuning her out and not paying attention, and I was embarrassed and never told her that I couldn't hear her or respond. I had my first tonic-clonic at age 16, and I've had them a bunch more times since then. I'm married and my husband has witnessed my last few seizures. I generally just wake up with people standing over me looking concerned, and then when someone says I had a seizure I completely freak out. The post-ictal period has never gotten any easier for me, and I usually sleep the better part of a day before I feel like myself again. Now that I recognize how the post-ictal period feels, I think I've had quite a few seizures that were never documented because I lived by myself and nobody saw them. Once, I woke up with a disclocated shoulder and had absolutely no idea what happened to me. My doctor and my parents thought that someone had beaten me and I just wasn't admitting it, but I honestly had NO clue and it didn't occur to me that I might have had a seizure.

I'm 34 years old, and I didn't visit a neurologist until 2 years ago after my husband witnessed me have a seizure. I've had 3 EEGs and an MRI, and all of them were normal. However, it's suspected given my history that I have Juvenile Myoclonic Epilepsy.

I have an appointment with a new neurologist at a research hospital here in Dallas in 2 weeks, and I'm really excited about it. I'm not presently taking any meds, and I really want to get a treatment plan worked out. I had a tonic-clonic a week ago that scared the aboslute shit out of me (basically, I have a complete panic reaction to being told what just happened - is this normal???). I don't want to have any more seizures.

I'm glad to be here and looking forward to making some friends.


Summer

 

[Fedup]

summerf

Welcome aboard. C.W.E. is a good place to be. Its really not that surprising what can happen when you have a seizure, the amount of hurt caused can be big and its not meant. So try moving furniture out of the way or when you feel you are going to get one move where there is nothing you can hit yourself off. As for the EEG and MRI coming back normal I would not be worried, this happens. Often where the seizure starts can be deep in our brain and hard to detect. No one wants seizures, so welcome and ask any question, everybody here will try to help.

 

[Nakamova]

Hi summerf, welcome to CWE!

I've had a few tonic-clonics, including ones where I've dislocated my shoulder, so I know how unpleasant and weired that can be. I hope your new neurologist will help you work out a plan for seizure control. There are a lot of different meds out there to consider. They hit everyone differently, so you can't really know until you try if they will be the best med for your particular case. There are some alternative treatments out there as well -- More info plus helpful tips for getting started can be found here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

Best,
Nakamova

 

[MuayThaiFighter]

Welcome to CWE! I hope they can find a good way to keep the seizures at bay. Best of luck and hopefully you get answers very soon.

 

[summerf]

Thank you guys for the welcome!