Attrition and the Process of Elimination

Two or three weeks ago, I was really wanting to share a big and encouraging update full of information about my new, official epilepsy update!

Yeah, that’s not going to happen. Still no diagnosis for this shaky lady.

It’s not all bad news, and there is progress, but …sigh… I felt pretty low after my follow-up appointment.

So, what do I know? Basically, not much.

No relevance to the post, but my brother is bafflingly gifted at growing African violets. It's amazing! He doesn't understand it, and he's smart enough not to mess with whatever mysterious thing he is doing right.

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​The ambulatory EEG didn’t pick up any epileptic activity while I was experiencing symptoms. This is very common during focal aware seizures, which is what I am most likely having. They can affect only a tiny part of the brain and that can be hard to catch. Additionally, my symptoms experienced during the study were fairly mild; I’ve had much stronger.

The next step is additional medication. It’s being added incrementally and should reduce seizure symptoms. So, if it does – yay! – focal aware seizures it is!!! If not, it looks like I may have developed some kind of headache disorder. Evidently there is a significant overlap on the Venn diagram comparing the two.  Migraines, or the like, are not a desired diagnosis as that just would be another thing to have to deal with. No thank you.
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Looking into a comparison of both, I am confident enough I’m experiencing focal aware seizures to tell people who ask that is what’s going on. It not being official is frustrating, but I understand why the neurologist can’t give me an official diagnosis yet. The data is too qualitative. They need to make sure they’ve verified everything. And I respect that.

Now that I’ve reached the end, what are focal aware seizures exactly? They are a form of partial seizure that affects, as the name implies, only part of the brain. The person also maintains a certain amount of awareness. The auras many people experience before a large seizure are a focal aware seizure that eventually expand to affect the whole brain. However, they don’t always do this.

The symptoms of a focal aware seizure vary with the person and with it’s focal point within the brain. Very often, it’s a strong feeling of déjà vu or jamais vu. I have this. It’s weird, disorienting and scary. If, as a child, you ever had a really high fever, and, that night, you had a hallucinating nightnmare about Mary Poppins , that's the kind of disorienting and scary I'm talking about.

Sometimes words get really hard. I can’t form them or find them. Picture a brain fart with constipation. Words can also suddenly change their meaning and spelling, so my sentences no longer make sense. Other symptoms include strange acts of clumsiness, absentmindedness, or feelings of numb tingles. 

In summary, brains are weird. It’s no wonder that it takes time to figure out what’s going on.

via GIPHY