Forgive me for placing "epileptic" in the title with a capital "E". It's just that for me, being "epileptic" is almost like a name rather than a
But never mind that for now. To get back to the title, when I say "I'm an Epileptic," what image comes into your mind, if any does? I mean, when you
think "epileptic", do you see the fairly typical image of someone who collapses to the floor (maybe with a groan) and who then thrashes about
Something like that?
It wouldn't surprise me if you do, but I'd be pleased to know if you don't. Of course, if your image is nothing at all -- just a mental blank wall in
your preferred blank color -- then that doesn't count. It could just be that certain things or concepts don't image for you, while you may image other
things more strongly than other people.
If you're wondering why this post is rambling I'd just like you to bear with me and also let you know two things:
first of all, JustMike is known to ramble a bit anyway, even when he's only making a minor point, and
secondly, right now I'm still recovering from one of the most vicious and devastating attacks I've had in years, so thinking succinctly is not
That's why I'm writing this. To tell you something about what it's like while it's all still very...very fresh. To give you impression. Not
make anyone say, "OMG poor Mike! Oh I'm so sorry for you!"
No, you don't need to feel that way.
This is not about making you feel sorry for me or anyone else. Honestly. It's about giving you a bit more
information on a first-hand basis. It's about being utterly honest with you about what goes on and what it feels like, so that you may be able to
better recognize this condition and possible identify someone who may be suffering from it but is an undiagnosed, "atypical" epileptic like me.
I was undiagnosed until I was 38 years old. I have probably had this condition either since childhood or since a car accident I had when I was 20 and
I was knocked unconscious for four hours. Heavy hits to the head can cause some damage to the brain (okay you all know that) and this can lead to
epilepsy in some cases (but I'm not sure if you all knew that but if you did, hope you don't mind me mentioning it). In either case, born with it or
acquired literally by accident, I'd lived with this condition for at least 18 years before being diagnosed with it, and at the time I was finally
found to be epileptic by one of the top neurosurgeons we have here, I was actually being treated within lithium as a chronic depressive.
I wasn't depressed, my mind was getting screwed up but I couldn't figure out what was wrong and that upset me. It would upset anyone. And that led to
symptoms of depression (but not the actual condition), and I was on lithium.
Lithium is very bad for some epileptics. It makes them feel worse.
I'd been on lithium since January of that year and now, at the time my wife took me in to see this neurosurgeon/professor of neurology, summer had
baked and was done, fall had fallen, and snow lay thick on the ground once more.
Ten months of being on a drug that was simply making me worse.
What I went through while on the lithium is fortunately dim in my memory. Actually filing things away and remembering them takes some work on the
brain's part, and a brain on the wrong drugs doesn't work that well and in such cases, good memory is one of the first things to go out the window.
But I digress. Okay, I'm aware of these digressions but I allow them to stand because they illustrate two things: during recovery from an epileptic
episode, the person may make quite coherent statements but shortly after be unable to recall having said them; time has broken into odd chunks and the
older ones melt and sink away like ice in warmer waters. So, this creates the second identifier: we make sense, but only in short bursts. The
individual statements usually make sense but they often don't connect to anything.
Over a period of time -- and it varies from person to person and event to event -- a feeling of "normality" returns and the person seems little
affected by what happened. I'm about at that point now, so most of what I say should connect and make sense.
(I still am able to feel humor!)
Now I'll take you back to what happened about three hours ago. I was here on ATS, reading a thread about the quakes in Arkansas -- trying to get
caught up with it because I'd missed a couple of days and it's a thread that needs to be read all through -- when I simply began to feel a bit odd...
My concentration was going. I couldn't stay focused on anything I was reading and whatever I read simply made no sense. It might as well have been in
Swahili or Tagalog (neither of which I know even one word).
Within moments, the realization dawned: "Uh-ohh... I'm going to have one of those
..." with those
being the type of epileptic episode
that I dread the most.
You've probably heard of Grand Mal and Petit Mal epileptic seizures. I get both, but thankfully the Grands are rare and the Petits are more common,
though I still don't get them very often.
Interesting terms, those. Petit versus Grand. Beauty and the Beast. David and Goliath. But then again -- no. Because neither of those images fit.
There's nothing really grand about a seizure. Nothing to take your breath away in a good way, only in a bad way. And the Petit is not petite in than
charmingly, almost uniquely feminine way. It's not like a petite woman who happens to be witty and kind and intelligent. Petit Mal is to Grand Mal
what a gecko is to Godzilla. There's nothing witty, kind or intelligent about having seconds or even minutes of your life simply erased
because when I get a Petit Mal that's what happens and it's not a nice feeling at all. A chunk of time is simply gone, and I never can be fully sure
what I said or did in those moments (if anything) and always wonder about them.
The odd thing is that I remember having these Petit Mal events but I don't recall what happens in
them. It would be like going to in to see a
movie and coming out later with the sense of having just watched a movie, but you cannot recall a thin g about the movie itself.
That's Petit Mal for me. If you have them different then -- well I know there are other kinds. But that's mine.
Grand Mals are devastating. You are wrecked by them. You feel utterly drained. I've talked to people who've had the "typical ones" and they say the
same things I do. And even though my Grand Mal attacks are not like the "typical" ones as I don't fall on the floor (groan or sans
thrash about, they are still just as awful to go through and I wouldn't wish them on anyone.
Mine take several forms. Most often they come out as extreme expressions of emotion, human sensitivity and feeling pushed to one of its respective
edges. I can become deeply, darkly saddened and it's so overwhelming I cannot stand up. Or else I feel stupidly happy.
"Oh," some of you might be saying around now, "He's talking about a bipolar disorder."
While that's a fair enough thing to think and many doctors thought along those lines for years (and some still do), it's not in that range of
disorders and even the treatment is quite different. Epilepsy can cause these kinds of outbursts or eruptions of emotional energy, but there are also
the others: confusion, panic, fear, even anger.
I used to get this kind of thing pretty well all the time. That is, I lived in a state where I was having these episodes very frequently, even several
times a week. So I got treated, but for a depressive and/or possibly bipolar disorder.
These bipolar disorders don't normally give a person the kind of attack I had today. (Yes, long-suffering readers, I have finally got to the point.)
But after that short period of perhaps a few minutes when I had realized what was coming, and when I just felt more and more odd and then physically
nauseaus, it was off to "talk on the Big White Telephone" for me because I knew what was coming up very shortly and very literally.
I just made it by crawling on hands and knees. It was bad. It was the kind of episode that makes you ache and your tears stream and your eyes sting
from the acidic fumes and your legs are shaking even as you kneel, and even the cold tiled floor suddenly looks like a very comfortable place to lie
down, and so you do, you do...you lie down and wait for things to start to come back to normal.
After that wait and getting back to the sofa, where my wife (having seen this before) already has pillows stacked up and a cloth ready to mop my face,
I rest longer and time slides by in chunks, but now the timeline is not so choppy and I appreciate recovering until the second wave hits, just as I
expected it to hit.
There's almost always a second wave, usually after half an hour to one hour (at the max), and there's almost never a third. I get violently ill, have
a break, then have the second event (of what is one
attack, not two separate ones), and then I begin the real recovery. I'll be weak for two or
three days but otherwise I should be fine.
But at least these days I only get "one of those" episodes around twice to three times a year. It varies
but that's the average.
I take 500 mg of a carbamazepine drug twice a day, every day. This medication basically gives me the chance to have a fairly normal life, without the
"bipolar" and other episodes that I had for years. I take no other "mental health" medication at all, just stuff for cholesterol and hyper-acidity due
to a weak esophagal valve. (Please forgive any mis-spellings. I'm still having to focus hard just to hit keys.)
It would not be unreasonable to say that without finally getting the correct diagnosis (though years late) I probably would not be alive today, or if
I were, then I would not have the stable existence I have. I can thank my wife for recognizing that what was wrong was possibly neurological but not
depression/bipolar. I guess her decades in the health industry helped with that intuitive perception. In any case, she was the one who got me a
consult with a senior neurologist.
Now, here's the rub: there are bound to be other people like me, who are possibly epileptic but who have never been medically examined and given the
special ("pulsed strobe") EEG test, which gives results than can either definitively rule out epilepsy or confirm it as the the likely diagnosis.
All I ask is that you think about what I've said, which is purely based on my own experience as an "atypical" epileptic. While thinking, consider
people that you know, who just might have some or several of the symptoms that I have -- or had previously but rarely do now. If you know anyone who
might "fit" then if they've not already had a neuro consultation and an "epilepsy" EEG, it might be worth suggesting it to them.
Yes, I understand that in some cases there are money issues but I also know that for undiagnosed people, live is a misery. Getting the right treatment
can change the person so much that you'd never believe they were the way they used to be.
And just a final point to add in: while the actual root cause of these extreme episodes (like today's) is unknown, I'm beginning to wonder if there is
any link between moon phases and closest lunar approach and this sort of thing. Could be coincidental, but I'd be very interested to hear from anyone
who's either epilpetic or who has a close friend or family member who is -- someone you know well -- to see if you've noticed any such possible link.
This "amps" me because it's something that's not just personal, it's a condition that can be very debilitating and even harmful to the person who has
it, but can easily be misdiagnosed. If this post helps someone then it's been worth talking about it.
That's my WRAP. Thank you for reading.
edit on 20/2/11 by JustMike because: Needed to say with it "amps" me.