Status Epilepticus, You Are Just a Big Bully!

I love it when readers come to me with strange signs and symptoms (or they’re just my own strange ones) and ask me what might be going on.  If it’s a reader, as always, I state that Dr. PA is not a real M.D.! Nonetheless, whichever the situation, I get a chance to do some fun research.  And sometimes, doing that research makes me feel really stupid.  But hey, Dr. PA can’t know everything, right?

When most people think of Status Epilepticus (or just “Status” as we epilepsy folks tend call it) everyone sees an extended tonic-clonic, that if not treated immediately, will result in death.  This can actually happen.  I’ll explain what does happen, but after that, we need clear up some things.

Now, the pathophysiology of possible death in brief: high levels of neuronal death, marked lowering of blood pressures resulting in heart failure, impairment of breathing plus pulmonary edema, hyperthermia.

Please note that this list may not be exhaustive.  The information has been obtained from the Neurology section of Medscape.  Also, please note that Status Epilepticus occurs in a large proportion of the population who do not already have epilepsy.  Further, to actually die or have brain damage happen, you would have to remain in Status for a very long time.

On a personal note, I experienced a form of Status several years ago, that did not involve a tonic-clinic seizure.  It would be called Simple Partial Status Epilepticus.  More specifically, epilepsia partialis continua. I cannot describe how painful it was.  My eyes started blinking (no problem, had that before) then my jaw began twitching uncontrollably, my tongue fell out of my mouth and went completely numb so I couldn’t speak.  Then, the spasms that were so massive (and SO painful) traveled down my neck and finally through my right arm.  This lasted for several hours but eventually went away.

Moving on to what I discovered and knew nothing about.  The above are all considered forms of Convulsive Status Epilepticus.  There’s something called Non-convulsive Status Epilepticus.  How on earth did I miss that over all the years? Well, for one, it is incredibly underdiagnosed, misunderstood, and not even understood at all!

I’ll give you a minute to think.  Okay.  Guess who might have it? *laughing*

I really do owe it all to said person who got the ball rolling with some questions–just like other readers who have tipped me off to things that may be relevant to me.

It took me a while to go back and read the really, interesting paper I found.  I was too focused with a notion that my brain was being typically bizarre, and had simply jumped another hurdle.  That notion being, whenever I would have a migraine or become overstimulated due to the Asperger’s, my brain would “think” it had a seizure and then “tell” my body just that.

No.  I may very well be a prime candidate for NCSE (Non-convulsive Status Epilepticus.)  It can last days.  Or more? That fits with how prolonged the problems experienced with the “theory” indicated above.  I would feel post-“ick”tal© days later!

Here is where I fit in quite nicely in terms of presentation and misdiagnosis.  Even Non-Arsey Neuro was impressed and in agreement!

There are also two types but I will not go that far into detail.  However, despite already being the messy business it is, the paper does mention that there can be an overlap between both.  Now, PA and NCSE:

Presentation: altered neurologic function, diminished cognitive function, aphasia (loss of speech) without altered consciousness or dysarthria (motor problems with speech) atonia (I lose ability to walk and need my cane) visceral sensory disturbance (my heart rate fluctuates in Simple Partial fashion, my stomach can feel like Simple Partial epigastric rising) occasional myoclonus (my legs continue to jerk slightly all the time) migraine with visual aura (rare presentation and I don’t get visual aura much) pre-existing epilepsy.

Misdiagnoses: post-“ick”tal© states, psychiatric disorders.

How is it treated? Anticonvulsants.

So, Status Epilepticus, you are just a big bully! Running around making everyone think you’re going to kill us all who have seizures! Well? Phooey, phooey, phooey on you!

Here’s the paper if you would like to read it.


  1. God bless you sweet friend..

    See, there are so many misdiagnosis that roam the clinics, doctors, and hospitals-that over long periods of time-we have to keep our own eyes open, cause the docs don’t live with us 24/7 to see this action. Even when in the hospital-it could be a lighter time than when you hit home. So it is wonderful you kept focus for better diagnosis. However-keeping to focused on it-after diagnosis is what leads to seizures increasing, not getting better–the focus on the illness. I learned my lesson there. So once you have knowledge of what it is–let that focus go-so the stress is released, and less seizures attack. Stress is a huge fact for them. You seem so happy-that is awesome!!! My friend you have the first huge mountain climbed-and I am so blessed to read and talk to you about this!!!
    You are such a dear one…. blessed to know you!

    In His Love,

    Heather (Heather Jeanette Jensen-Siebens)


  2. Hi Heather Siebens. Thanks for coming by and reading this post. It’s good to see you.

    I agree. There is so much confusion out there and we do need to be aware of our own health, our own bodies and hopefully that will lead to some form of education with the medical profession. If we can communicate to them just exactly what is going on, that can only make things better. Well, let’s cross our fingers!

    I find I need to keep records that are very specific just because a lot of times I forget, and my seizures have become so much more “colourful” over time. Different types, different things happen, longer duration, more frequent. I’ve always stated how important observer accounts are, as well.

    Stress is definitely a factor. That was the whole idea behind everything changing with me. Losing my job etc… The hope was by getting back to a “regular” life, things would improve. Everything was under control back then. We’ll just have to see.

    I try not to “worry” about it too much. I mean, when I’m not having seizures and feeling sick and such, I actually forget I have epilepsy! It’s really only when the bad times hit that I tend to get affected, I suppose. It’s hard to say, but in looking at some posts I have written here, some of them haven’t been so great. I definitely have been upset.

    Regardless, there is nothing I can do about it. Ultimately, like all of my other diagnoses, it is a fact of my life. I can only manage it, just like the others.

    Thank you and you are such a dear, too.


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