is anyone here epileptic?

i have been having seizures for the past couple of weeks and they're really freaking me out. they seem to be 'tonic-clonic' seizures.

i have had a few scans and am awaiting the results.

can anyone share their experiences with me?

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Swirling black lilys, totally ripe...

Odessa. Oh hon I am so sorry to hear that. <hugz>

I too am epileptic, but the kind of sz's I have are called "complex partial", and mine originate from the R. Temporal Lobe.

It took years to find out what was causing them, bc I initially had a doc ( a neurologist who wasn't worth the gunpowder it'd take to blow him to hell in JB's opinion, and he's mostly right ).

This cat initially told me I had "anxiety" and "idiopathic cluster/tension headaches", and gave me Librium capsules, a whacking dose of them which rendered me so goofy that I couldn't supervise my staff -- or even my own shoes for that matter. lol (but kinda not ) Also some major codeine tablets.
Needless to say the seizures didn't stop -- only at that point I wasn't even absolutely sure what they were: I had had them sporadically, and I mean v rarely, since late childhood/early tweens. My mamma called them "sick headaches" . :/
Even tho I had worked Inpatient Pharmacy in a huge hospital and went on rounds w/the docs and everything, I still had this image of seizures automatically = "Grand Mal/frothing at the mouth/flailing about with the strength of 20 men life-threating crises," no exceptions.

Of course come to find out there are aeveral different classes & even sub-categories of seizures, depending on etiology as well as symptoms & frequency.

SInce yours are tonic/clonic, that means you have at least a bit of twitching of you limbs or feet or hands or neck? Or no?

Take heart, really really. There are sooo many more,( and more effective! ) meds on the market today, and with fewer of the scarey side effects (which varies from person to person o'course). And said meds or combos thereof may have to be diddled with or switched round completely as time wears on.

the IMPRTANT THING of course is, to get the seizures well controlled, learn what might be triggers for your particular brain/body, and (imo) keep track of the ones you get: Where you were, what you were doing; when was the last time you had eaten/drank; whether you were overheated or overstressed or overexerted, and suchlike. As well as how long it has been since you had your last dose of meds, AND HOW MUCH SLEEP/REST YOU GOT! (Caps intentional, soz.) Believe you me these, some or all, can be triggers for some people in a major way.


Does anyone else in your bio-line carry a history of sz disorders or other neuro issues/ j/w. Medical History can be a huge help.

Lots of fairly decent epilepsy sites on teh Web, too.Pick and choose tho. And also pick & choose a GREAT neurologist!

Try to be calm, sweetie.

PM if you want -- I'll be happy to hold your e-hand .

Best,

Chyia, sending calm vibes

thanks so much chyia! i'm still waiting for the results of the scans (public health sucks), but i'm starting to get used to the idea of having seizures every few days
it's nice to hear from other people how they have experienced epilepsy, because i've never known anyone with this condition. i don't have any family history of epilepsy, imo i'm getting these seizures as a result of stress ( i had my first one last year, 2 days after my dad tried to kill himself).
thanks for your encouraging words!
xxx

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Swirling black lilys, totally ripe...

One of my friends fathers was epileptic - his was the photo sensitive kind -
but he still lead a pretty good life
As long as everyone around you understand and loves / helps you, you should be fine!!

epilepsy is freaky. mostly because i don't understand it. i like in the royal tenenbaums when royal says 'what like flopping around on the floor', or whatever he says. my cousin who was run over when he was a small child has epilepsy. he has an acquired brain injury from the same event. i think its all quite good as long as he takes the medication. sometimes people take epilepsy medication to treat psychiatric issues too. im not trying to be disparaging or say unhelpful things. i wouldn't cope too well with having seizures and things. i hope the test/scan results are helpful and they can give you the right treatment, and all that.