Trying to make sense of it

[girlwithadog]

I'm just trying to understand everything, I really am trying to make sense of this. I know I may not ever but...

How is it that people who have epilepsy and have more seizures more frequently than I do can have nothing show up on an EEG, yet I had seizure activity on mine when I only have a major episode every 1-3 years (shortest duration in between is 9 months).

I get that the neuro thinks I may be having simple partials but I don't get how my EEG could come back abnormal when so many others who have grand mals and such, and much more frequently can show up negative.

Is there some reasoning behind this? Why it would show up on mine when I dont have very much seizure activity (that I know of) but doesn't show up on many people who have frequent seizures?

 

[AndrewIrish]

I'm similar - I go about a year between grand mals(that might be hogwash, think I had one two days ago), but I have CONSTANT myoclonic seizures - maybe you're having small seizures which aren't noticable but are constantly 'alighting' your brain? If a myoclonic jerk can be picked up on an EEG, well then shoot - hand me a puzzle game or something and within 20 minutes, I'd light up an EEG like a christmas tree.

 

[masterjen]

Hi girlwithadog
Many people have a seizure focus that is too deep in the brain to be picked up by EEG. And for many people there are no abnormal brainwaves unless they are having a seizure. It doesn't mean their seizures are milder, or that their overall seizure condition is less severe, than, say, yours is. Many people can have epilepsy diagnosed based on an abnormal brain scan and seemingly normal EEG or even if both are normal.

 

[Nakamova]

Some kinds of epilepsy produce a distinctive pattern that shows up not when you're having a seizure, but in between seizures. This pattern indicates a susceptibility to seizures. This is the case for me. I only have grand mals (tonic clonics). I've never had a seizure during an EEG, but my brain shows the distinctive between-seizure pattern. It doesn't show if I'm on a high enough dose of meds to suppress it.

 

[girlwithadog]

Thank you all for your responses.

I'm sorry if it seemed like I was insinuating that any other epilepsy is easier, I am thankful that mine is as managable. I haven't tried medication but I imagine it's more difficult for most with epilepsy because they have them more frequently than I.

I just wonder why it came up positive for epilepsy on my EEG but those who experience more symptoms and seizure than I do shows nothing on the EEG but y'all did a great job explaining it. Thank you.

I have been all month since getting the diagnosis tried to find reasons the EEG had shown some seizure activity. My way of denial I guess. It doesn't make things worse when you get the diagnosis but to me it's pretty hard to accept. For the last 12 years the doctors have given me other reasons for my blackouts and spells and all of which the doctors have said were curable and I would eventually (with therapy) be able to live without it. Now knowing it's not something that can be cured by talking and it likely wont ever go away, it's hard for me to accept.

So I'm trying to make sense of it and stretching for reasons that it's not. I know I'm a downer and I hate it but I've been wallowing in self pity all month. I could handle, and handle well, the multiple diagnosis' they gave me in therapy for these episodes, I can handle all the rough things I went through as a child well, but this I can't handle so well