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

reply to post by JustMike


On the moon issue-I seem to dream so much during the summer and winter solstice that I take an herb for it. It is drug free. I was able to start doing this a couple of years ago. Up until then, it would exhaust me. Come to think of it, that's when my vertigo would act up.

wonderful thread. It's different for everyone. I've been suffering from multiple daily seizures for over 2 months now. They have definitely found them, but they can't really tell if they're epileptic or non-epileptic at this point. My brainwave changed drastically during a 6 day period while they did the constant ambulatory EEG. The first day of the week they looked normal, except during seizure activity of course. By the 5th day, they saw definite epileptiform and signs of major scarring. On the 6th day, they were normal again. It's very puzzling to the doctor I am seeing. He says the 'spells' I am having definitely sound like seizures, and look like it on the EEG, but I am very difficult to diagnose. I would like to share a bit of my story with you, and my experience in working with people who have seizures as well. I hope that I can shed some light for you, as you have done for me

My seizures vary greatly. The started out as dizzy spells with slurred speech, poor coordination, disorientation and extreme weakness. They immediately looked for signs of strokes, tumors and other major, life-threatening problems. Luckily the CT scans and MRIs came back good. From there I became a pin cushion. They did nerve conduction tests and blood work and so forth, along with the EEG with pulsing strobe. Nerve conduction test showed neuropathy, but not enough to explain why the entire left side of my body had gone numb (2 weeks after the first dizzy spell.) The EEG they did that day came back clear. More tests led my doctor back to seizures. He explained to me then that not all seizures can be detected by an EEG. He suspected that mine were in the brainstem, a place that can only be proven in 2 ways. EEG during the event, or autopsy. Well, I don't think I need to tell you which test I chose! (hehe) He was confident enough to start treatment that day, but since my spells were getting worse, he really felt like I needed to see an epileptologist. I was at the point where I could no longer respond during a spell, and had just started having episodes where my eyes would roll into the back of my head. I wasn't losing complete conciousness, but seemed to be losing time. A spell that felt like 15-20 seconds for me, my husband would time at 60-90 seconds. When it was over, I can always remember bits and pieces of what happened during the spell, but not everything. I might remember hearing something disrespectful, not not even remember that it was part of a full conversation. This being said, I would sometimes (okay, I do sometimes, haha) come out of it angry, because someone said something 'totally out of line,' even though it isn't always the case. It's a very funny feeling when you KNOW what you heard, but you are told it was only the middle of a sentence in the middle of a long conversation. Sometimes I remember nothing but some sort of movement, like the cat attacking her toy in the floor, or the dog licking my hand. So not much anymore, but sometimes I remember what seems like everything. Sometimes I find myself talking to someone, then suddenly it looks like they 'magically' moved 12" or more in a split second, like something you would see in a movie. Boy, does that ever make my head spin!

Truthfully, this may have been going on since high school. I started, for the first time in my life, 'losing time' in the 9th grade. Even the most interesting classes would have me suddenly saying "wait? what are we talking about? where did all of those words on the board come from? Our is assignment is...... okay, open the book and... WHOA!!! I've never seen this before! *whisper question to neighbor about it and* oh, we were just taught that? I swear I've never seen this before?" It was a very confusing time for me. I had always been a straight 'A' student, and now I couldn't seem to pay enough attention to follow a lesson. I tried everything I could think of to break it too, nothing worked. Quite often I would find myself (usually during the first or last class) 'losing time.' I was afraid to tell my parents, as I had a semi-abusive step mother. She didn't knock me around a lot, no she was to smart for that. Her favorite thing to do was to grab my arms and shake the living heck out of me, thus making my entire body sore, but only leaving tiny bruises on my arms that weren't that noticeable (from her fingers griping me.) The point in describing that, is so that u don't think that this is the result of some head injury. If I came home with a grade below an A, I was grounded for 3 weeks, from everything, including the phone, and that included phone calls with my mother. During my weeks of grounding, I would often be blamed for things that didn't occur at all, and then I would have the life shaken out of me while she would yell about what an awful person I was. I was tremendously scared to tell them that I 'couldn't remember what the teacher was teaching' because I was afraid of being punished for it, so I kept quiet about it. Eventually, I moved in with my mother, but ended up dropping out of school during the first couple of weeks of 11th grade, because I just couldn't see to remember what I was being taught. I could sometimes remember seeing the teacher writing stuff on the board, but even trying to remember words to go along with the pictures in my mind would draw a blank. I don't know why I never told my mother, I guess I had just kept quiet long enough that it was habit. After I got my GED, I was no longer needing to remember things like that from school again, not for a few years anyways, and I pretty much forgot about the problems I had. When I was 19 I got a job as a cashier in an elementary school cafeteria. It required a lot of legal paper work to be filled out everyday. I never could remember all of the instructions my boss gave me, and ended up losing that job. I could remember that she gave me instructions, and remember her standing in front of me and pointing at different spots on the paper, but drew a blank when I tried to remember her words. There wasn't really much else to catch my attention for a few years after that, and once again I just kinda forgot about it. I would frequently find myself driving and suddenly wonder how I got to the point I was at. I didn't remember the last 5 miles. I heard of that happening to other people before though, so I figured it was just normal and let it go. Looking back, I realize that 3-4 times a week is probably a little more often than the average person experiences that feeling though.

Last year my life changed, majorly. My hours at work were cut tremendously so I ended up moving in with my boyfriend (now husband) who lived over an hour away. I changed jobs (when I finally found a new one.) Got engaged. My favorite uncle, who I spent many of weekends with growing up, as his daughter and I are the same age, committed suicide just 1 week after I had to turn down a dinner invitation at his home due to work. I got engaged. I had an abcessed tooth and the infection spread to my lymph nodes. I got married. My job got really stressful after I whitnessed abuse and my guilty coworkers friends started retaliating against me. I got married. 2 friends got diagnosed with stage 3 cancer. I got the flu. I started having the really bad spells. I just described 6 months of my life there, give or take a few important events that I know are there but I can't remember right now.

As for my line of work, I have worked with people with developmental disabilities for the last 6 years. I have worked with dozens of people with seizures. I know from my work, and my extensive training from work on seizures, that everyone has different symptoms. There are many different types of seizures, and even then 2 people with the same type may still have totally different symptoms. Everyone also has different triggers. Stress is pretty much universal. It is the only one that I know of that will trigger a seizure in just about anyone. The strobe light trick doesn't work on everyone (myself included, as well as many of the people I have cared for.) Hormonal fluctuations get most people. Exhaustion gets most people as well. After that it can be dim lighting (I've heard of dusk being a trigger for someone before,) fast moving objects (seen ceiling fans do it,) weather (storms, temperature, humidity, etc) overexcitement, staring at something for too long, sneezing, and the list goes on and on. So to answer your moon question, I would say yes, the phases of the moon could most certainly be triggers for some people. Maybe not all, but I don't see why it couldn't affect some. I have seen stranger things do it. Sorry about the 'novel,' but I really felt compelled to share my story with you. I really appreciate you sharing yours, it's nice to know that there are others who understand me, thought it sucks that you go through what you do. Also, I apologize for any words that don't make sense or are misspelled. The last couple of months have been terrible and my brain feels 'fried.' I often find myself using the wrong words (more often my husband finds it though, haha.) I get confused easily now, my typing sucks, and as for spelling.. well I used to be the go to person for spelling assistance.. now I need a dictionary to spell things for myself. Hope I didn't bore you to much!

I enjoyed reading your post Mike. I am someone who has worked with groups suffering from epilepsy for over 20 years and, in one way or another, have had experience of the many many types of epileptic seizures that people have endured. At the last count, I believe that over 200 types of seizure have been identified. Hard to imagine really isn't it! In answer to one of your questions: 'How do I see you?' my answer would have to be based on 'How do you see yourself?' It to me is a positive sign that you question, analyze and therefore try to understand your condition and place it into some kind of perspective. This has to be commended. I have worked with people who exploit it to the full on a 'feel sorry for me' basis and those types of people very rarely make the same kind of progress that you yourself appear to have made because they don't want to. These people treat it as an illness, have a huge chip on their shoulder and a 'why me?' attitude. In many cases treating it as an excuse to be able to reside within their own particularly preferred niche. These people use it for financial gain in declaring that they are disabled and therefore unable to hold down any meaningful employment which is of course nonsense. I have also witnessed on many occasions sufferers faking seizures in order to either gain attention or sympathy or just simply to avoid being challenged in any way. After a while tho' it is easy to spot the fakers! I have also worked with many disturbing cases such as status epilepticus - entering one seizure after another, sometimes for long periods of time. These situations have to be arrested quickly once diagnosed as they are highly dangerous and rectal Valium has to be administered. Many Grand Mal, Petit Mal sufferers, (the latter we prefer to address as absences,) are usually much more inquisitive and are anxious to have their conditions treated and controlled successfully as they regard it as embarrassing, inconvenient and in many cases leading to being 'labelled' by certain prospective employers or organisations. With regard to your question about the moon having any effect on sufferers. It may shock you to hear me say YES, most definitely. Always around full moon time we would expect to have a more active work shift. We know that the moon affects the tides/water. The brain is covered with a thin layer of fluid to protect/cushion it. It has been suggested that this fluid reacts to the moon's gravitational pull which in turn contributes to higher brain cell activity resuting in a greater number of nerve endings becoming blocked which can then lead to a seizure . I am sure that you are aware that in earlier times, long before epilepsy was ever a diagnosis, people were regarded as being 'possessed' or ' bewitched' or just simply insane and were deemed lunatics (derived from the word LUNAR) and committed to mental institutions/asylums.
I suppose as in any and every medical condition, be they physical, neurological or chemical malfunctions, progress is being made all the time. I myself suffer from a thyroid condition, blood pressure, kidney and cholesterol conditions but a small amount of daily medication allows me to lead a pretty much unaffected, and therefore enjoyable normal life.
Sooooo, hang in there. Enjoy your life and enjoy what you do because you do it so well.

Regards.

reply to post by HadEnough

Hello, HadEnough,

far from boring me, your personal account has actually helped me far more than you may realize...

You told me of your experiences when you were young and in school, and suddenly, for me -- a penny dropped. A whole sack of pennies dropped! Without going into details, what you described led me down a path in my mind to memories that have been filed away in dusty cabinets somewhere for a good forty years or more; there is no question that I experienced similar things. I had simply never analysed them. This is valuable knowledge as it helps me to place so many facets of my youth/teenage life in perspective.

Thank you for that. I am deeply grateful.

Also, I'd like to comment on what you said about your abusive stepmother and how she used to violently shake you. Are your consulting doctors aware of this? Because I recall reading some years ago that such a form of abuse -- basically the same as shaken baby sydrome (SBS) -- can be extremely dangerous to the young person and lead to serious neurological problems.

I do hope that what you suffered has not had such a result, but it is certainly worth discussing it with the specialist doctors.

Best regards and thank you again for sharing with us,

Mike

reply to post by scotland48

Hello Scotland,

thank you also for writing. I had no idea that there are estimated to be 200 different types of seizures. Hopefully what I've got is already on that list... I expect it is: I once met someone in hospital who had the same thing and we were both strangely delighted to know that we weren't unique. (We were both in hospital for operations; nothing connected to our epileptic conditions.)

Yes, I have known people who have "used" their disability to its fullest and I have to admit that I've never been able to understand that mentality. It's also very hard to convince them that there are far better ways of living and dealing with whatever condition/s they have. On the other hand, I take my hat off to people who frankly have things far worse than I've ever had but simply refuse to let any disability deter them. I have learned a lot from them and been grateful for their positive attitude and determination.

Thank you also for adding some weight to my own feeling that there is a link between lunar cycles and such conditions. I knew of the origins of "lunatic" but it's good to have some professional support for this concept.

Full moon tomorrow night. I won't be sleeping much...

Interesting thing: my mother is the same as me regarding the moon. No, she's not epileptic, but like me, she can never sleep well as the full approaches full. And it makes no difference to either of us if the moon is visible or not. In fact, there have been many times very, very late on cloudy, rain-filled nights where I've had to go and check a calendar to confirm that the moon is full or near to it.

Just to finish this reply, I've also noticed that I not infrequently have "down" times just before a major earthquake. (Only rarely do they precipitate an actual attack like I had on the day I wrote the OP.) I've actually made use of this for trying to predict when they might occur. Quakes, I mean. Not bad attacks.

By "down" I don't mean depressed in the normal sense. It's not a "poor me, my life's a mess, all is hopeless" kind of feeling. Not at all. It's very different and not based on any form of introspection. Far from it: I'm very happy with my life and feel deeply blessed! No, I just feel dread. That is what I was also feeling when I wrote my original post at about 9:30 pm on February 20th (my time). That sense of something very bad coming.

The quake in Christchurch, New Zealand, struck about 28 hours later: their worst disaster in many years. Oddly, just 28 hours after my "most vicious and devastating" epileptic episode in years.

Coincidence? Well, that could be offered, but I prefer to think further than just throwing the "coincidence" label on something that is not well understoold. I have been looking into for some time now.

I also had a deep feeling of dread in the few days before the recent quake in Japan, but thankfully I did not suffer an actual episode. As I've said, they are rare. But there might be a mechanism at work there, possibly related to geomagnetic changes in the earth. (Yes, even at such distances. The distance from me seems to make little difference.)

Best regards,

MIke

reply to post by PuterMan


you may possibly have a benign brain tumor which I would diagnose as a left occipitaloligolodendruglioma which may trigger an episode petite or grand... just saying that its a possibility based on your flicker statements... If ever this effect is accompanied by strange tastes smells or sounds for no apparent reason. Or if the flickering begins to move about in your field of vision of its own accord.(without moving your head or eyes). Or grow from a small light to larger in size. I would seek out a neurologist... please note... Im not saying this is the case, only a possibility. I found it odd to read your post in this thread and seen the connection..

reply to post by JustMike

I empathize with you. Somehow or another it seems seizures are in my entire family. My sister is full blown epileptic. Almost died during one of her GrandMals. My 4 year old still has 'febrile seizures' and it scares me to death as this is how my sister started. She has grand mals and complex partials. My husband has had three during his time being with me (7 years) and he has no insurance. Luckily there are not many of them. & I have them in my sleep although I have never mentioned it to my doctor as it doesn't happen that much. It's a scary thing, in every way. Although who knows what mine are as all of the sudden my right pupil got enormous and has been that way ever since. Ehh I think Im just weird !

By "down" I don't mean depressed in the normal sense. It's not a "poor me, my life's a mess, all is hopeless" kind of feeling. Not at all. It's very different and not based on any form of introspection. Far from it: I'm very happy with my life and feel deeply blessed! No, I just feel dread. That is what I was also feeling when I wrote my original post at about 9:30 pm on February 20th (my time). That sense of something very bad coming.

reply to post by JustMike

My whole family is like this as well. We are all Christians and dont really delve into the psychic stuff but before my grandmas brother died her sister had a dream that a grim reaper came and called my grandmother and my grandmother answered the phone in tears because she herself had just woke up from a horrible dream (I don't remember what it was; something to do with death). Their brother was having a heart attack at this exact time. & when I was younger something really bad happened to my mom. I was staying the night at her friends at the time and I remember BEGGING her friend to let me call my mom. She kept saying "No, no, your mom needs a break, leave her alone." I was crying and freaking out. The next day my mom never showed to get us. She was in the hospital and had been beaten half to death.
I think things like this are engrained in us. With you it is on a larger scale but with my family we can sence things that directly effect us.

My first image of "Epileptic":

I once encountered a girl at a festival in the midst of a grand mal seizure. I ran back to my campsite and grabbed my homegrown habenero sauce bottle. I returned to her... thrashing, eyes rolled back, foaming at the mouth, beating the back of her head against the earth. I put a drop of habenero on the tip of my finger and touched it to her lips. She sat up, looked me in the eye, shook her head, regained instant focus, and asked, "What the hell is so hot in my mouth?"

I wonder if you have researched "epilepsy capsicum" and if you take a daily dose?

Sri Oracle

Amazing thread Mike; also the commenters on it...
I must readily admit my thoughts lead me to think you were going to prescibe a cure. I have two distant friends who suffer from it diagnosed.
Has anyone ever suggested the possibility of using ancient healing tones as a possible way to perhaps not a cure; but a balancing of both brain hemispheres which might actually turn out to be a curative method?

Probably anything that might initially be a little too high a frequency for what a friend who is a sufferer calls "brain quakes" should be avoided, at least initially.

Perhaps one described as a Love signal; music & frequency 528 Hz could be used initially. Even though I do not suffer from any of the symptoms you describe, this may help in some unknown ways. It certainly created a higher awareness in my own level of frequency leading to an awareness of how I might help others. Link below.
www.youtube.com...
528hz should be able to help reconstruct damaged dna allowing an awareness of more.

Just be aware some of the higher range healing frequencies above 528hz might be causitive of some harm depending on each person's signature frequency, and how it is currently distorted. Remember also, as you raise frequency awareness it contains both dark and light encoding. (to explain dark-light dark being the negative destructive force (male) in nature-light being the positive creative force (female), both forces necessary for movement/progression as the electrons, positrons, neutrons, including sub-atomic particles of all matter do).

This could for a time could create a condition of confusion. To wit: not being able to quite tell what reality/truth is-I have personally experienced this. Everything in existence has its own signature frequency throughout the cosmos. I would suggest if it feels uncomfortable stop.

reply to post by JustMike


I was surprised to see the link in your sig mike. I guess surprised is a good word I really don't think much about my epilepsy anymore. But its nice to read about people who have had to deal with the crap I have had to in life lol. Hope that doesnt sound bad.

I'm 39yrs old and I had my first seizure when I was 15. No idea why and was never figured out why. I have grand mal, petite mal, and juvenile myoclonic seizures. Sucks something fierce. But the only plus side is I have currently been seizure free for 2 years. But I am still scared to drive since I totaled out a couple cars when I was young having seizures and I don't want to risk hurting others.

The grand mal just kill me for close to 48hrs afterward. I can usually tell when they are going to happen but not always. The petite mal arent as bad but they do put me down a while as well. As far as the myoclonic tics I have broken so many dishes over the years I could fill up walmart.

But like I said its been 2 years now and still going. I have never let them stop me from doing anything I wanted, well other than restrictions placed on me that kept me from many jobs, took my license, and kept me from getting my pilots license. It's good to hear of others that have done well with living there lives.

My image of an "epileptic" is simply a person who isn't any different from anybody else. Although the first image I had when I had after my first attack brought me back to a movie. Oddly enough the man in this particular movie collapsed with a groan before he began to thrash about. I was only nine years old at the time. I've read though this entire thread, and I have to say it's nice to see different views.

I'm turning twenty later this month. I'm considered both epileptic and not. It's more that the doctor says that it's in my head which makes it physically manifest. Pretty much I have been called crazy, and that I need to see a psychologist (because everything always comes out normal.) Which is all fine and dandy if that's what it takes to get better. My triggers are excitement or flickering lights plus stress plays a role.

My attacks were and are extremely atypical. I say this because for some reason there was a pause between ages fourteenth and nineteenth. Not only that but they seem to constantly change according to my neurologist.

Everything was a distorted mess for me that first time. I had been working on my math homework at the time when the world seemed as if it was constantly moving. My body was weak and relaxed but unresponsive. I couldn't think strait.

After that they slowly began to get worse and worse. I could always tell when I was about to have one because I felt that I was drooling. I began to have missing time, and began doing worse in school. Eventually I gave up altogether.

When I was about ten the paralysis set in. I couldn't tell what was going on around me after that. I just knew that I couldn't move. My mom who saw me one time said my eyes would go unfocused and I would stare at a spot until I came out of it. They were short spells. Those days didn't last long as they slowly got longer, and I began having them while I slept. Which was alright at first since I got used to it. Wasn't fun to wake up to, but I stopped waking up after a while. My parents knew about it, and would check on me all the time.

They were worried I would suffocate or have a rather long spell. Which finally did happen. I do remember bits and pieces. My parents bedroom, faces, the hallway, the stairwell, and then I was suddenly laying in my mothers lap. I remember she was trying to get me to talk, and I couldn't say a single thing properly. My mind was a mess.

After that I was taken to the ER, then to see doctors, neurologists. The CAT scan, and MRI were perfectly normal, but my EEG had some strange brainwaves. But nothing out of the ordinary. They put onto Tegretol until I was fourteen.

Anyways the most recent and violent episode was when I turned nineteen. I ended up in the hospital because I wouldn't stop twitching? Okay, it was more that my body was violently folding into itself, and I was very aware of it. This went on for about two hours nonstop even after they knocked me out supposedly. Just as before everything came out perfectly normal. They kept me sedated for four days because they didn't know what else to do with me, but I was there for about a week. I have no memory of what happened while I was awake until the end. Recovery took at least four to five months at the most.

Funny fact is before it happened for nearly half a year I had been telling my neurologist that my headaches had been getting steadily worse. I was getting ice pick, migraines, and regular headaches, feeling as if my head was bubbling over, missing time, and worse of all the feeling that I was drooling. Then there was this incident where everything seemed to become distorted, (sight and sound) and I became extremely confused at school. Then the day before it happened I began to twitch during a concert. And hours before it happened I had this annoying feeling of dread that wouldn't go away. After that life goes on. With the true story of the ever changing fake "epileptic" symtoms out of the way.

The idea of there being a link between the moon phases. There are huge possibilites because people do act differently during them. I haven't noticed a link between the lunar phases for my auntie (she's epileptic) or myself (although I don't count.) I could look into it if you would like, and could also check onto some of my friends (who are also epileptic.) I would also check online because someone may have wondered about the same thing, having a similar trigger.

Good luck to everyone on figuring everything out.