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Old 05-11-2006, 03:11 AM
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Greetings


Hello Everyone,

My name's Shane.

This is odd for me, I don't usually talk openly about my epilepsy other than to close friends and relatives.

Im 19, a high school graduate and a store clerk. I live in Raleigh, NC.

I had my first grand mal in the orthodontists chair when I was 12. During the episode, I thought the nurse accidently dropped something in my mouth and I was choking on whatever it was. I tried screaming, I tried moving. All I remember is my eyes wondered and fluttered across this strange womans face and I passed out. The paramedics told me I had a seizure. I never felt those horrible feelings before. I thought I died.

I remember that day so vividly. I have break through seizures about every 2-3 months. I've been on 8 different medications at various doses and combinations. I've seen 4 different doctors.

I mark my calender, from the day I have one, I jump 2 months ahead and write, "maybe not this time." I'm waiting.

The waiting is what really gets me. I'm sure all of you know what it's like to have the feelings of anxiety and fear.

I keep active, doctors orders. Yet, I can't keep the thoughts from rushing me. Bombarding every sense - sometimes I'll smell something that'll remind me of an episode and immediatly panic.

I'm scared of stairs, heights, everywhere but my room. I stay active though. Probably not as active as I should. I started smoking when I was 15. Not the healthiest of choices. I do get out, with friends mostly. I live in a town that has luxuries that aren't accessible unless I drive. There aren't cheap taxi services or buses. I rely on friends and family to tote me around town. I almost put pressure on myself, I hate myself a little for not being about to have the freedom of driving, not having the freedom my peers have.

The thing I hate most is the look. My last episode was at school. A few weeks ago, I was walking to a class. The class I had next was TA, I'm a teachers assistant and usually sit in a quiet room and grade papers. Today I was in the room with my teacher and a few of my friends - they skip class sometimes to hang out with me and Ms. Lameck. Ms. Lameck is fun and energetic, a really great person. I had that feeling. That "aura." I still don't fully understand what doctors say about having that aura. It was described to me as maybe a weird taste or smell or feeling. All pretty vague. I can't describe my warning, I just know it. So I start panicing, then I start thinking "no I'm just panicing, breathe - good I'm breathing, now tell everyone why you jumped out of your chair and ran around the room." But I could speak. Then came "The look." My mind races now, I'm staring at a young girl, Kat, she is the most chipper person I know. There's always a smile on her face, and when she's not smiling she's probably asleep. I'm staring at her, and she's staring at me. In my mind I'm saying things like "I'm trying to tell you I'm having a damned seizure" "can you hear me?" and it all repeats, I don't know why it repeats, I've asked, no one has answered. Then I remember I thought about breakfast when I finally passed out. I awoke, Kat was gone, my teacher and the school secretary had me in there arms in the hallway floor. I remember how I got there. BUT THE LOOK came again. Before and during the seizure it's the LOOK of WHAT THE HELL...After the seizure it's the LOOK of WHAT THE HELL, THAT POOR THING - with some tears. I HATE THAT.

I get those looks everytime.

I wonder, does anyone else think of odd things during episodes? Do your thoughts repeat over and over during episodes? Does anyone else not understand what doctors say when they talk about "auras" and "warning signs?"

I don't really have warning signs, every knew doctor I see asks me that, and I say "if they were really warnings, don't you think I'd steer clear of the whole thing altogether."

Does anyone else feel trapped, disabled, but feel bad about calling it a disability because there are far worse things like aids or paralyses?

Thanks for reading. I feel a little better.

Love Tomorrow,
Shane from NC
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Old 05-11-2006, 08:01 AM
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Hi Shane, welcome to the forums!

You can have a huge impact on how other people react to your seizures with your own demeanor when discussing them. If you treat it as a dark secret, people tend to follow your lead. If you treat it as just a fact that you have to deal with and let people know that it's not a big deal (to you), people will be much more comfortable around you.

Most people don't know anything about seizure disorders unless they personally know someone who has one. You are likely the first exposure your classmates have to seizures/epilepsy. Knowledge is the key to trumping fear (and 'the look'). Perhaps you could get someone from the EFA to come to your school and put on a presentation?

It sounds like you are having simple partial seizures since you are somewhat conscious of them during them. Stacy (my wife) does not have auras (warnings) and is never conscious (or aware) during her seizures.

BTW, auras are seizures in and of themselves. It's not that they are 'warnings' which allow you to prevent the bigger seizure which follows them (for the most part). I've read where some folks claim that they can prevent the larger seizures that usually follow auras via different methods (meditation, breathing exercises, etc.), but most folks just take it as a sign to find a safe place to lay down to prevent injury should they have a bigger seizure.
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Old 05-11-2006, 12:52 PM
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Hello Shane

You are an incredible articulate young man! Your ability to describe what you are going through leaves few questions.

People will always give you the LOOK until they are educated in epilepsy. And as Bernard stated, most people resond to it in the same way you do.

May I make a few suggestions that may help you? I would first see your doctor and have him prescribe something for your anxiety, Buspar works great for me, but it takes a few weeks to start working in your system.

I developed a seizure disorder suddenly 5 years ago (this month) out of the blue. And like you, was aware and remember most of my grand mal. I was in college and had taken the summer of for a knee replacement. My life was in shambles after that day. I was not left alone, I lost the ability to read for about 3 months, (goodbye degree) the medication made me a Zombie, I had to rely on others to take me everywhere, ( I had been an excellent driver for over 31 years)

Now came a flurry of all kinds of seizures, and switching of meds. I tried to go back to college with the help of tutors and special aide but the brain damage took my math skills and some comprehention. Reading directions are a nightmare and I can no longer balance the checkbook.

BUT.... I learned to get around on my own and I learned all I could about epilepsy. Joined a support group. Surfed the web for information. In spite of my limitations, I managed to get a job on the Air Force Base and became a valuable asset to my employer to the poiunt where business dropped $100 a day in my absence. (it's was customer service I gave)

However because I was in such a public job, and my seizures were not under control, I felt my employer and co-workers needed to be educated in epilepsy, and the type of seizures I had AND the first aid in dealing with them. I was always afraind of having another grand mal and ending up back at the hospital.

I printed up information sheets on seizure awarness, first aid and what NOT do to, and had a very frank and open discussion with all the supervisors (about 12) only one was put off and it was because she believed I was posessed. Ignorance is bliss (she must be very happy)

Then I spoke with each person I work with one-on one. It was amasing! The dialog and questions and then the confessions of others telling me of one of their family members had epilepsy too, they were always curious but were afraid to talk about it.

Knowlege is power, and you have the key to imparting knowlege to others. You will also be able to deal with the "LOOK" better if those who know you, learn what to expect and how to deal.

Good luck, it was a pleasure to meet you!
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Old 05-11-2006, 02:27 PM
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Thanks.


Bernard and BirdBomb,

Thank you both for your kind words. Knowledge is key. We can all take a lesson from GI JOE and know that "Knowing is Half the battle."

I have spoken to my peers, teachers and personal friends about what epilepsy and seizures are. Most of whom I accompany myself with all understand to a degree. "The Look," I'm talking about is that look of pity.

I have spoken to therapists, psychiatrists and psychologists about my anxiety. I'm on Calazapan (simple partial) for the anxiety.

I like to think that I can talk and even have thoughts of episodes without panicing. I usually don't panic. But, 3-5 times a week I have a major panic attack that I can't control unless I have outside help.

Auras, I have heard about being able to control the convulsions and such during an aura. I'm still trying to posess that power, but usually I fall victim to the same routine - the feeling, the panic, the speechlessness, the loss of control, falling unconcious(convulsions usually start then), and the post ictal.

I do have partial complex seizures, I am aware during some. Sometimes, however, I'm never aware. I've had a few in my sleep as well - I can't prove that I have, but in my gut I know.

My question remains, does anyone have episodes where your thoughts repeat and before unconciousness you have thoughts that are completely random (i.e. turtles, spiderman) ??


Live Today

Shane
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Old 05-16-2006, 05:48 PM
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Shane's problems


Hi Shane, and welcome.

I've been through much of that, and I know what it feels like not to drive... or should I say, I know what it feels like to be chaufered around everywhere. I have advice in small pieces, so take it as it comes.

QUIT SMOKING! Dude, you have big enough problems. I can only picture you having a seizure and not being able to breathe due to bad lung function. My mother died at age 46 (heavy smoker, epileptic). Diagnosed as a heart attack, and I have my own opinions. That's another story.

Bern says I have a distinct smell about me before a seizure. I have logged all my food, medicine and liquid intake for about 6 months now and found that there is a conclusive pattern. I believe it's hormone related, but that's just from my perspective. I also think everyone is different... (you being a male and all)... different people have different problems.

With the fear, I think you should work on being calm in the face of fear. The only thing that helps me when I'm scared, is looking at my problem (like being at the top of a staircase), then gritting my teeth, clenching my fist, and saying to myself something like: "GET YOUR ASS DOWN THOSE STAIRS LIKE EVERYONE ELSE IN THE FAMILY DOES! THERE IS NOTHING TO BE AFRAID OF, SO DO NOT BE AFRAID!"

Sometimes I roll my eyes and think, "Oh good grief! You've done this a million times." Don't feel sorry for yourself and DO NOT let others feel sorry for you. It rubs off and then spreads like a fungus. I hate it when people feel sorry for me, because sometimes I get treated like a handicapped person, in need of a wheelchair....versus a friend, or a cool person to be around.

Start taking Yoga or something to calm you down. For me, it's watching M*A*S*H* re-runs and stretching in front of the TV before bed. I also take Pregnenolone (a hormone) AS SOON as I wake up the first time in the morning. It works.

I think these seizures follow a pattern. Log what you eat, where you go, activities, ect. and look at the pattern. My seizures come once a month, two days before my period starts, and one day after eating a lot of acidic fruit. After some research, I figured out my estrogen was low at this time and that's when I started telling the Dr.'s. They FINALLY listened. I was able to see the problem. I hope this fixes it.

I've been working on this post for 1/2 the day off and on... I've got to run... my two year old is a busy guy.... and so are the other three that are here.
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Old 05-17-2006, 02:18 AM
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Thanks Stacey


Stacey,

Yeah, smoking is a burden more than a pleasure. Quitting something I must do.

I'll try to start logging my day's activities. I can't say that I'll keep up. Thank you, I haven't thought about doing that. No one has suggested it to me. I am actually kind of surprised my doctors haven't suggested it.

Thanks everybody, stacey, bernard, birdman.

Live Today

Shane
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Old 05-17-2006, 07:55 AM
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I'm surprised no one ever suggested that! A seizure log can be instrumental in identifying potential seizure triggers.
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Old 05-17-2006, 09:38 AM
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Hello!

I think that the seizure log has really made a difference for me.

It's a lot easier than it sounds. Just keep a calendar on the refrigerator to mark your seizures. I put a big red "S" when I've had one, and a big red "J" if I had a jerk. Make your own symbols, and keep up with it for a while. The food and medicine log will help you go back and notice if you had a seizure the night you ate 4 servings of that delicious birthday cake at your friend's birthday party. Log also the alcohol, and other intake that could potentially be dangerous. No one is there to judge you but you.

I'm thinking if I can get it organized, I may conduct a study and ask people to keep a log. I want to find out if patterns in time have a relationship to brain function, and whether or not the brain can cure itself of any problems.... I think it can.
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Old 05-17-2006, 12:29 PM
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Shane keep in mind, seizures are a SYMPTOM of some underlying problem, simular to fever as a sympton of an infection. Provided there is no known basis of the seizure, like a tumor, scar tissue, etc..

The logging of seizure patterns will help you find the triggers. Maybe something in your metibolic systems is low, or you have a food type allergy, gluten can be very bad for some.

The hardest thing is finding the cause of your seizures. But the diary will be your weapon. Get yourself a small pocketsized notebook to also help log your eating habits.

I wish I had know this information 5 years ago. It would have changed my life completely. However, the path I chose led me to meet many 100's of terriffic people, (and a few stinkers)



BTW I am female. hee-hee
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Old 05-17-2006, 05:53 PM
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Shane,

THink of a "spreadsheet" type picture in your mind. Think about the information you want to remember. For me... It's :

Date: Time: Activity (be as detailed as possible): Extras like:

4/4/02 * 3:00AM: * Up, took Pregnenolone, restroom (RR) * tired

* Jerked

* 7:30AM: * cooked 2 eggs, * energetic

* 8:00 * workout

* 10:00 * lethargic
* 4:30PM * Mother in Law expressing displeasure * Jerked

the list goes on, but you get the idea. I use a black laboratory notebook, so that whatever I write cannot be altered (without my knowledge). Good Luck.
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Old 05-18-2006, 03:29 PM
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I split off the side discussion on mother in laws to keep this thread on point for Shane.
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Old 05-19-2006, 01:55 PM
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SHANE'S PROBLEMS


Shane:
I've had epilepsy for 28 years, consisting of grand mal seizures, which occur only during waking periods.

Some advice:
SUGGESTION 1. STOP SMOKING
SUGGESTION 2. RE-READ SUGGESTION 1.
Why? I am a former smoker, strongly addicted to it. I once left the living room where I had left a cigarette burnimg, walked into the bathroom and had a grand mal seizure. I fell sideways onto the bath tub and broke some ribs. The pain of that awoke me almost immediately and I went back to the living room. Once there. I discovered the cigarette and found that as the cigarette burned, its center of gravity changed. As that happened, it fell from the ash tray, on the the arm of the couch and began to burn a hole in the upholstery. I took care of that with some water and stumbled to bed. That was the end of cigarettes in my life, though not immediately. I didn't stop stoy immediately, but haven't smoked in 15 years.

SUGGESTION 3. KEEP A LOG:
I am a compulsive person: the most important words in my life are "I WILL NEVER QUIT" and "WHY". At first the log was simply a WHEN log.
Once I did this, I reviewed it to try to disvover some pattern. Then
I went to a number of epilepsy clinics in NYC. No answers to WHY.
It was comforting to know that I didn't have an organic problem, but if I didin't find out why I was having them, I felt that I couldn't stop them.
(I still haven't stopped them - even with ingestion of 3 different meds per day and visits to a Neurologist and an Internist every 3 months.)

But I learned that: The most frequent cause for me is STRESS. It makes no difference whether it's emotional, psychological or physical. If I get overly stressed, I have a seizure. WHEN I READ THAT YOUR FIST SEIZURE OCCURED IN A DENTIST'S OFFICE, I THOUGHT: Stress? Going to dentists often involves fear of pain. It's not my favorite task, but I've really never experienced pain at a dentist's office (3 root canals, but also lots of crowns to repair cavities as well as teeth broken during seizures.) Never paiin, so why I getting worried about? (I still get up tight about it, but my attitude about dentists has changed.)

Perhaps stress is unrelated: maybe you skip meds, don't sleep enough, drink alcohol, push yourself too hard, etc.

It took me a long time to determine the stress factor, but the docs still have no other ideas as to the cause), but I try not to over stressmyself anymore. It seems to work.

My log is simple: it consists of the dates of the seizure and what I had been doing the week before. You may need to keep a more detailed log. (For example, during one period, I wondered if variations in my blood sugar level was a possible cause: I tested it 3 times a day and kept a record of that. This was time consuming and after 4 months: I found no relation whatsoever. But I had learned something.

SUGGESTION 4: DON'T WORRY ABOUT THE FEELINGS OF OTHERS. They have no idea of what you're going through emotionally, and - fortunately or not, aren't able (or don't want) to try to understand it. Your friends and those who love you will help with this.

Over time, my seizures grew more frequent, sometimes occuring at work (in a large corpoaration, where I supervised 8 people directly and interfaced regularly with a significant number of other employees, and made recommendations about spending large sums of the company's monies. I attended industry meetings worldwide - I didn't do well with travelling due to changes in altitude, stress, interfacing with many strangersn at meetingis, etc. I also had to interface intermittently with corporate officers. Fortunately, I loved my job and my company treated my issues with understanding, particularly when they knew I'd get back to work ASAP following a seizure and get the job done.

SUGGESTION 5. Keep in touch with people who are involved with this malady: forums and the internet are very useful tools to learn all you can.
Seizures aren't symtons: they're a neurological disfunction. The more info you have, the more you can be prepared to stop them.

SUGGESTON 6. GO TO AN EPILEPSY CENTER AT A MAJOR TEACHING HOSPITAL IN THE VICINITY OF YOUR HOME AND HAVE A COMPLETE WORK UP. This may or may not show anything, but it may be worth a try.

Hope some of this is a help to you.
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Old 05-19-2006, 06:15 PM
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I will debate with you here


Quote :
Seizures aren't symtons: they're a neurological disfunction
Neurological dysfunction is a collective term used in a broad spectrum of symptoms which includes such things as
  • Hyperactive Behavior
    Gluten sensitive diseases
    Learning disorder or a learning disability
    Gulf War Syndrome
    Neuropathic pain
    Others

Seizures may be part of that collective defination, however without a known focus such as leisions, scar tissue, malformation, etc., they are a symptom of some other underlying problem, yet to be defined.

I don't want to sound like I am splitting hairs. There is a purpose for the seizures, it is an alarm the body is sending telling you something is not quite right. Tha'ts why it's so hard to find what works the best for yourself.
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Old 05-19-2006, 08:25 PM
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I'm not interested in "debating" with you.
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Old 05-19-2006, 09:22 PM
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Actually, I don't want to Debate either, just wanted to correct you in a civilized manner.
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Old 05-23-2006, 05:39 PM
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Does it really matter? Either way we're having seizures right? And we don't want to be.
Which comes first, the chicken or the egg? Really it's a mute point here. That's my two cents in this discussion.
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