Elaine, have you had multi day EEGs, either ambulatory or in hospital? Luckily our child's negative myoclonics* and atypical absences are controlled with lamotrigine. Nothing completely controlled partials but those have tapered off for the most part. Having the generalized seizures show up after partials had our epileptologist surmise it was probably genetic but generally only ~30% of those with epilepsy are given a cause. And seeing how a fair number of those are going to be genetic or from injury or known infections, don't have high expectations there.

if you ask for a dna test, your doc may be confused. Sue is referring to getting your enzymes checked (not epilepsy genetic testing) which affects only some AEDs but is not a factor for all possible epilepsy drugs.

* these were generalized, not all are generalized from what I've read

Hi Pogo,

No, I haven't had multiple day EEGs, only three one hour sleep deprived EEGs, and one over night sleep study which also involved EEG information collected. These tests were all in the past 3 years and all were completely negative.

However, my myoclonic seizures, both positive (the majority) and negative (the minority) which started last April are escalating rapidly. I am 74, and I'm pretty sure what I have is Primary Progressive Myoclonus of Aging.

I will be seeing a specialist in epilepsy on the 30th.

It is so wonderful to have people like you give me support, pogo. I have felt so weird and alone in this, to say the least. And not a little scared! Now I feel I have some measure of what is going on, and while it isn't all sorted out yet (if it ever will be), at least I am not afraid of what is coming next, at least with this condition.

Hugs, ElaineD

Elaine,

You are not alone! While everyone's journeys are somewhat different, there are a lot of common themes. It sounds like you are coping well - well it sounds like you are allowing yourself breathing room which is helpful; everyone deserves a break from fears and worries this diagnosis can bring. I hope your upcoming appt goes well! You sound like you've done a lot of homework so you are able to get more out of your appt.