Okay, I'm an Epileptic. What image do you have of me? [WRAP]

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 condition.

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 uncontrollably?

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 easy.

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 to 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 groan) and 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.

Mike

First of all S+F, Good post,,Very interesting writing style.

I should probably start by saying "Hey man, Keep you're head up".....and other than that there's not much I can say except, Try keep off the depression meds. I've been bipolar I guess for the past 8/9 years of my life and I'm only starting to overcome the depression. I believe the cure for depression starts with YOU.

edit....What image do you have of me?: I do not care if someone has one eye, No legs, Multiple legs and all sorts of disabilities. In my opinion everyone is equal and no one is more superior than the other. I've had very close friends that were epileptic and were some of the most caring people i ever met.

reply to post by Serizawa

Thank you for your kind and upbeat comments. Actually I'm not bipolar and I'm on quite different meds, though I have some symptoms that are very similar. My own condition is actually rather diffferent but they can be confused, which was partly what I was trying to say. I can't garantee that I said it very well, though.

Overall, I'm a pretty happy or at least pretty positive person. I don't get down often or stay that way for long. But having in the past lived for years under the impression that I was bipolar (as that's what the docs believed was the case), I can relate to how it can make a person feel in some ways.

Best regards,

Mike

Thank you for your story it was interesting and informative..You seem like a positive person..I'm not an epileptic but your story was a very moving and i know sometimes the battle is exhausting you are very brave

reply to post by sugarcookie1

It can be a bit exhausting sometimes, yes. In my case it's not too bad these days as major episodes are pretty rare, but I know there are people who deal with it every day and who have it far worse than I've ever had. The same goes for many other conditions, of course, but this is one know.

While I'm thankful for your words, actually I'm not a very brave person. Not cowardly (I hope) but not too loaded with brave molecules or whatever. It's just something to deal with and I'd rather try to be upbeat about it than the alternative.

There is an upside to this as well, though it's hard to know if it balances the downside. But for what it's worth, at these "odd" times (and while recovering) I do notice some heightened perception. It could be purely a matter of temporarily being more "aware", I suppose, or possibly some kind of light (ie not heavy) hallucinatory effect. I don't know. But it's interesting.

Anyway, I need to get some rest. It's approaching midnight here. I'll check back on the morrow.

Best regards,

MIke

reply to post by JustMike


I have no particular concept of what an epileptic should be as I have never known anyone with epilepsy. Of course I have read the 'classic' symptoms, but I have never seen someone having an attack.

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.

Regrettably - and this is not a snipe at people with depression - it is all too easy for the medical people to just says "depression" without actually checking or even sometimes bothering to understand what is happening. It is the 'the science is settled attitude', but as I understand it epilepsy is an electrical problem. I will come to that in a minute.

... 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).

Believe me you do not have to have an epileptic attack to think that!

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.

Don't like the sound of that! I have a tendency to black out when I encounter flickering - in particular sunlight coming though bare hedges (no leaves) in winter when the sun is low. If I can't block it I have to stop driving.

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 epileptic 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.

Bear in mind we have just had solar flares as well. I think that as we are basically all electrical systems then anything to do with the nervous system could be affected by these. Maybe some are more susceptible than others? I don't know, just my 2c.

reply to post by PuterMan

Hi Puterman and thanks for your comments.

I tend to agree that some cases of "depression" are labelled as such due to either a lack of knowledge or a lack of interest in investigating further. It's the case of something that almost walks like a duck and almost quacks like a duck. That doesn't mean we can say it's a duck, but often that's what happens.

I guess that the medical profession is like any other. There are plenty of dedicated people working within it who do their utmost to stay up to date and always do whatever they can for their patients, but sadly, there are also those who never make such an effort, or who simply believe that there is no need to look further, even when the "standard" treatments don't seem to be working.

About the strobe effect: not all epileptics have the photo-sensitive form, and not all people who are photo-sensitive (as you described in your own case) are epileptic. So, while I wouldn't be overly concerned if I were you, at the same time it would be worth mentioning to your doc at your next visit and seeing if there's any need for follow-up.

My late father had the same condition that I have, but originally (at around the age of 70) he was diagnosed with Parkinson's disease. After being treated with the wrong drugs for all that time, so his condition simply got worse, he was finally found to be epileptic. Apparently they only explored this possibility because Mum once mentioned to the docs that I had atypical epilepsy, so they went "Hmmmm" and decided to test him for it and found that this had been his problem all along. He'd never had Parkinson's and being treated for a non-existent condition was wreaking havoc on him, both mentally and physically.

Dad's drugs were changed to those that treat epilepsy and his improvement was dramatic, to say the least. So at least for the last couple of years of his life, he had a more peaceful, calm and lucid existence and felt mentally and physically better than he had for years.

That's another reason I created this thread. Dad went through hell in those nine years. His life up till then had never been what I'd call perfect, and it's only looking back that I can see the signs of his condition as they mirrored my own. Or should I say, mine mirrored his! But at least he was able to manage day to day. I suspect he had it a bit milder than I did when he was younger, but as he got older the condition apparently worsened to the point where they (incorrectly) diagnosed Parkinson's. My family and I don't "blame" them for this. What would be the point? Those years are gone (and now, so is Dad ), so we just let it go and hope that the medical people who treated him have learned from it.

I'm also hoping that some who read this might take the main point to heart: this is not just about epilepsy. It's about any person who is being treated for a chronic condition but who is just not responding to the treatment in ways that would be expected. In such cases, it's always worth investigating futher and looking for other conditions which can manifest themselves symptomatically in a way that mimics the treated condition. When not the classic type, epilepsy can easily be misdiagnosed and treated as depression and/or a bipolar disorder -- with disastrous results -- or even as Parkinson's disease or other neurological conditions. Because at first look, it really seems to be the same. And therein lies the danger.

Puterman, I'd also like to thank you for including my thread in your signature links. I appreciate it very much. As you know, it's not a matter of stars n' flags for me (we can't eat them or anything! ), it's getting the word out.

Best regards,

Mike

reply to post by JustMike


Firstly, thanks for the thread, it made interesting reading. Secondly, what image do I have? The s ame image of you if you did not suffer from this affliction. My wife is epileptic. She has, on average, one episode per year, and they vary in intensity. Usually brought on by stress of fatigue. She first suspectedthat there was a problem when she experienced a dizzy spell, followed by a complete blackout. On recovering, she found that she had a swollen area on her head, bruising to her right eye and lacerations to her tongue. I witnessed one bad attack about 4 years ago, on the way to Narbonne. She complained that things just did not look right. I took her outside, we had stopped at a service station. Suddenly, she went rigid and started convulsing. All I could do was stay with her and ensure that nothing happened to her, and simply ride the storm with her. Luckily, the only untoward thing that happend was that she urinated.

So, I fully understand your situation and I would like to thank you for bringing this topic to the forum.

Stay safe and peace to you.

Kindest Regards

The Lone Archer

I have controlled epilepsy. I take tegretol, which has controlled the seizures I used to have. Mine were not grand mal seizures, mine resulted in weakness down my left hand side. It was all caused by having a brain tumor, which I still have but again seems to be under control. A close friend of mine had a grand mal seizure and I have to say it is quite a disturbing thing to witness.

Obviously with my history I dont imagine you to be any different than a normal healthy person. If you were to see me, you would never imagine I have a terminal brain tumor, you would see a fit confident and healthy young man.

reply to post by TheLoneArcher

First of all, thank you for sharing this with us. I appreciate exactly what your wife meant when she said that "things just did not look right". Certainly in the case of Grand Mal events, most epileptics know when one is about to occur and often it is the "oddness" of how they feel and what they perceive that is the "red flag" for them. So it was for me yesterday.

Yes, stress and/or fatigue are often precipitating factors. They don't have to be, but most neurologists advise epileptics to make sure they don't get over-tired (especially mentally) and whenever possible, don't allow themselves to become too emotionally stressed. This is the main reason that I only work part-time these days. It's not a matter of being unable to do full-time work, it's the increased risk of having very unpleasant episodes because of it. So, I don't go into work for many hours each week. Fortunately, I also have text translating/correcting work that I can do from home (via internet) and as I can choose my own hours it's possible to get the jobs done without any nasty effects.

I'd be interested to know if your wife is also photo-sensitive, meaning she is affected by flashing lights. Not all people are so if she is I'm curious as to how she deals with it. Also, have you noted any periodicity that could be linked to such things as moon phases or the like?

Best regards and thank you again,

Mike

reply to post by JustMike

I knew a woman with epilepsy that had more courage than everyone on ATS combined.
I also knew a family member with epilepsy that was the biggest waste of flesh ever born.
Our opinion of you should be and mine will be based on your abilities, not you disabilities.
As for you, I’ve enjoyed your threads immensely.
You shine.
peace

reply to post by JustMike


Photo sensitive? I pretty sure that she is not affected in this way. Again, with the moon phases, I have no evidence. It only seems to affect her when she is over tired or under mental stress. Touch wood, she has not had a episode within the last 12 months or so. We had a near miss over Christmas, whilst walking in the woods. Luckily, she recognised the onset in time for me to break out the temp shelter that I always carry and lay her down under the basha, on a tarp, and cover her to keep her warm. Within about 30 to 45 minutes, she was as right as rain again.

reply to post by woodwardjnr

Hi Woody! Great to hear from you. (Wish I could talk to you and the others in Chat but haven't been able to get in there for many days now.)

Thanks for your input, mate. What you've said helps to illustrate the various causes of epilepsy as well as the ways it manifests itself.

Just wondering -- was your tumour discovered and diagnosed as a result of you being medically examined because of the seizures? In any event, I hope it stays quiet.

Best regards,

Mike

reply to post by silo13

Great response! Yep, we're just like anyone else!

I also appreciate your comments and support. Thank you most sincerely!

Mike

reply to post by TheLoneArcher

Thanks for addressing my queries. Sorry for my delayed response; I've had to catch up after going to lunch!

From what I've been reading it seems that most epileptics are not especially more photo-sensitive than the average population; just that those who are can experience seiszures as a result.

Also glad for your reply on the "moon" issue. I suspect that there's nothing to it but all the same I'm curious about it. On the other hand, it could be that photo-sensitive people may be more susceptible on that score as well. Hard to say.

Mike

reply to post by JustMike


That is a possibility, it is so hard to say to be honest. I am beginning to know the tell tale signs with my wife now though. Certainly time enough to get her to sit or lays down and let it pass.

reply to post by TheLoneArcher

Faithful, honest and caring support from a loved one or even an understanding work colleague makes such a huge difference, and I am sure your wife appreciates and is quietly thankful for yours, just as I am for the way my wife supports me when these things happen.

reply to post by JustMike


Good to hear from you too, missed you in the chat room.

I think my tumor had probably been growing for about 4-5 years before it was diagnosed, my seizures came on about 2 years before my final diagnosis. I just tried to hide the symptoms, I was too scared to find out what was really wrong with me. But my seizures were the equivalent to what seemed like a stroke, i basically lost all sensation in my left hand side. After I had a few I went to see the doctors, who finally organised an mri. The rest they say is history. I have been seizure free for over 2 years now and am able to drive again, which has been great.

I hope you manage to get things under control. All the best

see you back in chat soon

reply to post by woodwardjnr

Good to hear that you've been seizure-free for that long, Woody. That's great progress!

From my side of it, things are about as under control as they're likely to get, so I'm pretty happy with my life overall. Compared to how things were, I can't complain!

Best regards,

Mike

reply to post by JustMike


You sound like a methodical, laid back person.

I am photo-sensitive, but epilepsy was ruled out.

I close friend of mine would lose her memory for a few minutes. She was able to have surgery of some kind for it.

I had a neighbor with severe epilepsy. His parents had a hard time paying for care, so I don't know if that was why it permanently affected him. We caught him one time when he was falling off his bike.