NeuroTalk Support Groups - View Single Post

southie · 02-15-2017, 03:50 AM

Quote:

Originally Posted by ElaineD

Hi Southie, (this is Boston's Southie?)

Hugs, Elaine

No - Southie is my nickname, because I'm a south-paw aka lefty (but I'm a true ambidextrous individual) and plus being a Southern Native American of Florida... hence, too many girls with same name in class; it was easier to call me Southie and it got stuck.

Ok, now I see what you're in reference to; so you would have Atonic as well as Myoclonic. It is not, I repeat, IS NOT - unusual to have two or more various seizures...

Having a variant of seizures back to back is common; (it includes back-to-back-to-back seizures) however, having multiple variants (types) of seizures together is very rare!

Atonic Seizures are what you just described - almost like a water on a duck's back... while the awareness does surround... it is very, very dangerous! While this event is extremely rare to me (it does occur once in a blue moon);

I had a dear precious friend (she passed away after a massive clonic-tonic-clonic with a cardiac arrest) - she suffered from Atonic sporadically; however, all was well until that one morning, boiling a dozen of eggs moving the pot to the sink to transfer eggs to a icy cold water... went half way across before the Atonic seizure floored her, sustained 2nd and 3rd degree burns... while a skin graft wasn't necessary (surface burns, not very deep). What the Dr's did was allow it to heal by itself, then surgically cut her so they could stitch over the bad area. She did have a small scar that wasn't really that noticeable as it was inside of her upper right arm location (as she held the pot AWAY from her). Her oldest sister was there when it happened, so that helped a lot.

The sad part here was my old neighbor's friend, who's son has Epilepsy. He wasn't supposed to be living anywhere higher than the 1st floor (meaning he had to remain on ground floor due to his seizures, even though while his was controlled (finally) but still at a very high risk of anything that could happen) after 21 years of being "seizure-free" (still on meds, but the Epileptologist reduced the dosage so he was taking half of what he had been taking much of his life). His wife-to-be, insisted on they living on the 5th floor of an apartment (somewhere in Boston). From what my old neighbor's next door neighbor (their friend) had told me. The balcony wasn't very stable; according to the fiancee who was in the living room painting the wall, he went over to tighten the nuts that were holding the balcony rails to the concrete; and was having trouble. Somehow, when he rose up, his body suddenly shook violently, and the rail didn't contain him in the balcony and it came completely off and he fell, head first to the pavement below. The parents of the deceased file suit against the Apartments (they won, even though they appealed to the fact - "he had epilepsy", the trial jury found health issue wasn't a factor - the fact the Apartment Management KNEW about the rail on the balcony, it was damaged and reported by 7 previous occupants. The award was given to that family for the sum of 1.4 million, a a portion went to the Epilepsy Research; and the remaining...which they divided it in half with his fiancee - I believe this was posted years ago in the EFA about this - having epilepsy and living in "high rise" buildings? I cannot remember - there might be some folks here who recollects it. That is the article when it talks about - is the matter I just posted.

As for Myoclonic... I do not sustain a true "Myoclonic" - I get them, but they're usually associated with the trigger seizure. I do not get Myoclonic "by itself"... Even though it is recorded on EEG and VEEG - Dr's and Surgeons wouldn't declare having Myoclonic; as one summed it up best ... "you just have an after shock from the original offender..." (In other words, if I had sustained a TLE (Temporal Lobe Epilepsy) episode then a Myoclonic followed after it... they will not combine the two and two, it was plain old TLE. Same goes with Absence, Tonic-Clonic, etc ... I like what one Neurosurgeon said it best.... "a true Myoclonic is by itself. Does not precede after another major seizure." [NOTE: to avoid any confusions - this just pertains to me, myself; this is not to say it applies to others. As others can have multiple seizures of the same or other variants which may occur.]

My primary issue is rather the Nocturnal - I get a lot of flat-liner; and it happens every time I lapse into Stage 3 and 4 sleep.. so it seems I bounce right back from those Sleep Stages. Hence, the waking hours is not a true issue with me ... it's the sleeping hours that is very dangerous! Even though I have multiple variants of Epileptic Seizures... bottom line here is; they do not "explode" unless I had sustained a massive Nocturnal seizures from the night/morning before...

I know this might sound "odd" or "strange" that's the way the ball rolls with me... I'm stuck with it; not a candidate for anything...

NO WAIT! I can be a candidate for President!