New to this - and in diagnostic LIMBO

[Sweet Pea]

Hi

I have been a lurker for a while and have decided to join. I have received a lot of information here as a non-member, but I felt like I needed more personal support.

I love to help other people, and love when I get the chance to share what I have learned from my own experiences. Unfortunately I am not sure how much I will be able to do that here, considering my experience with seizures and epilepsy is a lot like a trip down Alice's rabbit hole to Wonderland. I am not quit sure how I got here, or what to make of it.

But I am here, and I want to learn as much as I can.

I have had debilitating and chronic Migraines with Aura for about 5 years now, that would occur more than 1 time a week at one point with a non-migraine headache in between those days. I am however successfully treated, and only have a breakthrough Migraine about once every 2 months

The newer development is Simple and Complex "events". Events meaning they are unsure if they are Epileptic or Non-Epileptic in origin. After a sleep-deprived EEG, an MRI, and a 4 day V-EEG all coming back normal, it's been a difficult diagnosis process.

The types of "events" I experience are Simple and Complex Partial Seizures. The Simple Partials tend to mostly affect my senses, my memory, understanding (cause sudden and brief confusion), sudden mood shifts, and speech. The Complex Partials start off similarly but progress into full automatisms (aimlessly walking around, talking nonsense, rummaging, and fondling with clothing). Both are exhausting even though the episodes are usually brief (10 seconds to around 4 minutes), and after a Complex Partial I usually will need sleep or "alone time" for a couple hours for "recovery".

I am glad I signed up, and hope to find some answers while being a member. I hope to find other people who understand the difficult LIMBO of the diagnosing process when faced with the "failed" tests and the BIG question: Epileptic or Non-Epileptic?

 

[valeriedl]

The types of "events" I experience are Simple and Complex Partial Seizures. The Simple Partials tend to mostly affect my senses, my memory, understanding (cause sudden and brief confusion), sudden mood shifts, and speech. The Complex Partials start off similarly but progress into full automatisms (aimlessly walking around, talking nonsense, rummaging, and fondling with clothing). Both are exhausting even though the episodes are usually brief (10 seconds to around 4 minutes), and after a Complex Partial I usually will need sleep or "alone time" for a couple hours for "recovery".

I am glad I signed up, and hope to find some answers while being a member. I hope to find other people who understand the difficult LIMBO of the diagnosing process when faced with the "failed" tests and the BIG question: Epileptic or Non-Epileptic?

These are the things that happen to me during my partial, simple and complex, seizures.

During my simples I know what's going on and what I'm doing but I have a hard time figuring it out or understanding it.

During partials I blank out and have no idea what's going on. I may just sit in one place and stare until I come out of the seizure. Other times I'll do all the sorts of things that you do. I don't remember anything that I've done during them.

When I come out of a complex I'll usually have a horrible migraine and sleep for a few hours. Depending on how bad the seizure was I may even sleep most of the next day too.

I was diagnosed with epilepsy right after my first seizure but I there are people here who have had test results saying they don't so they may be able to help you more with that question.

Thanks for joining. I know you'll be able to give and get a lot of good advice on here, I have.