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  #1  
Old 01-18-2010, 10:54 AM
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Diary of an Epileptic


Hi everyone.
I decided to take a cue from Vapour and Molly97 as well as RobiN with her telling Rebecca's Story. I decided that documenting the daily life and trials of myself and my seizure disorder. I thought that maybe someone who reads this, and is new to the E-World will have a little help and encouragement to keep trudging forward and take things as they come. i'll try and give you all an update everyday. tell you all how i'm doing and basically show a seizure diary. and see if you guys can spot patterns I dont.

So I guess I will start from the beginning...
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FALL SEVEN TIMES, STAND UP EIGHT- JAPANESE PROVERB
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Last edited by Rae1889; 01-18-2010 at 08:11 PM.
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Old 01-18-2010, 11:11 AM
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The beginning


I don't actually remember my first Tonic Clonic (aka Grand mal) and neither does Chad (my fiance). But what we do remember is that ot took us both a long time to accept it and therefore a long time to take this as a serious matter.

I remember when I was 9 years old I had a pretty bad bike accident. I don't remember too much but I do remember going down a step incline hill. Normally kids would just hold onto the handle bars and let the hill's natural slope take them down without pedaling. But I was always scared to do this. So I always pedalled and ALWAYS used my brakes.

So one day I was going down this hill to meet my mum at her work which was at the bottom and then around a corner. I started to go pretty fast, thinking that I would try not pedaling like the other kids. but I panicked and tried to brake. the problem was that I hit my front brake instead of the back and went bike over head over heels over and over. I remember actually bouncing off my chin and slamming my head on the pavement. I don't remember much after this point, but it comes in random chunks of memory.

I remeber standit up, and could stand all the way. I was still attached to my bike via the brake sticks on the top. it was through my arm rght near my elbow. So I sorta pullled myself of and stood up. brushed myself off and looked around. I remember thinkin I was fine and would walk the rest of the way down. I took one step and blacked out. According to the lady who stopped I only was out for about a minute. She and her 13yr old twin girls had to force me to stay on the ground. I was covered head to toe in blood and gravel. They got my mum from work. (it was a very small town so everyone knew everyone) and they took me to the hospital. I dont remember anything at all after this point

But when I got home from teh hospital I started having alot of trouble seeing. random moments of tunnel vison and twitching. I would suddenly see flashing miving lights and would get an electric shock up and down my back and tingles in my hands and legs. Then I began "day dreaming" in class and walking around aimlessly. Little did anyone know that these were infact seizures.
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THEY SAY YOU CAN'T DIVIDE ANYTHING BY ZERO. IF YOU DIVIDE SOMETHING BY ZERO, YOU GET INFINITY. AND THE ONLY THING THAT IS INFINITE IS LOVE.
NEVER LOOK DOWN ON SOMEONE UNLESS YOU ARE HELPING THEM UP.
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  #3  
Old 01-18-2010, 11:20 AM
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Nobody ever noticed but me


So this went on for a few years and "went away" by the time I was 14 and entering grade 10. I was always an over acheiving person when it came to school. I knew I never paid attention and I rarely did any of the projects unless it was a group one. Mostly because I forgot that it was sitting on my bedroom desk begging to be completed.

So grade 10 came and went, and I kept having these spells. But because I didnt tell anybody I figured this was completely normal. everyone had them and it was part of life. So then the "bad influence' phase started. I got into drugs and started drinking at 15. Most of my friends were older, as I was a grade ahead and a late birthday. (July and you graduated grades in June) so Iu already had 17 and 18 year old friends. So it started with smoking pot. and oddly the spells stopped. But at this point I figured it was because I was high all the time. and hoped that the just stopped on their own. as if this was the normal time for them to end.

Then I switched to heavier drugs. Cocaine and Ecstasy. These didnt last long as I was about to graduate from Grade 12, and realized that I just wanted my "fun" in highschool and that I had to grow up and take control of my life and be a mature young adult. So i quit it all. I was never ever addicted. because I only ever did it occasionally and only in small amounts.

But when I stopped, the spells came back. I was hanging out with friends, traveling all at teh age of 17. Then I met Chad
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NEVER LOOK DOWN ON SOMEONE UNLESS YOU ARE HELPING THEM UP.
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  #4  
Old 01-18-2010, 11:27 AM
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He stuck by me


I met hime in February and started officially dating on April 14th. This year will be our 3 year mark on dating. and on November 14th 2009 was our 2 year mark of being engaged. So as you can tell, we knew from the start we were meant to be.

So we started with just hanging out until 3-4-5 in the morning. He had a truck, so it was no problem to get there and to get home. Then I started staying at his place when he moved out of his Aunt and Uncles place. every few nights, he'd wake me up at 6am and drive me home, then pick me up after I was done work at 9 and we'd continue the cycle.

Then one night I got a call from my mum telling me that my grandma had passed away. I was shocked. I started crying instantly and Chad had to pick up the phone and ask what was wrong. I cried so hard that I hyperventilated and couldnt breathe. He sat there with me rubbing my back and trying to get me to calm down. He says that I started into a grand mal. But this wasnt the first one he witnessed. He says there were time that I would cry out at night and thrash around and then go back to sleep. He thought they were night terrors. So he just let me thrash and I fell asleep as per usual.

These started happening more and more. In day times when I was stressed out and crying, or at night when I was fast asleep. He was there with me every step of the way.
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FALL SEVEN TIMES, STAND UP EIGHT- JAPANESE PROVERB
THEY SAY YOU CAN'T DIVIDE ANYTHING BY ZERO. IF YOU DIVIDE SOMETHING BY ZERO, YOU GET INFINITY. AND THE ONLY THING THAT IS INFINITE IS LOVE.
NEVER LOOK DOWN ON SOMEONE UNLESS YOU ARE HELPING THEM UP.
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Old 01-18-2010, 11:38 AM
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Finally realized this wasnt right


It happened for about a year and a half more. Then in April, at our 2yr anniversary, I had passed out in the shower. I had texted Chad I was gonna take one at about 1 or two. neither one of us can remember. But when He got home at 3:30 I was still in the shower. He came in and found me lying on the floor of the tub, blood everywhere, and I was so cold from the hot water running out that i was blue. I couldnt move my left wrist and I had a huge brusise on my left thigh.

That was the last straw. He took me to the hospital, and I found out I had broken my wrist and arms and fingers. a total of 5 places. I thought I just passed out in the shower, but he thinks it was a seizure. We'll never know for sure. So I was in a cast for 18 weeks. and got it off the first week of july. I had a few more episodes and Chad urged me to go get checked out. But I was afraid. I was worried that it was a tumor, or cancer, and that the doctors would tell me I only had so long to live. I figured that If I was gonna die, I wanted to die without knowing when.

He doesnt know why he never called an ambulance. he thinks it was because he had seen them so many times, and knew that I was always okay afterwards. But in september I made my first appointment to see a doctor
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FALL SEVEN TIMES, STAND UP EIGHT- JAPANESE PROVERB
THEY SAY YOU CAN'T DIVIDE ANYTHING BY ZERO. IF YOU DIVIDE SOMETHING BY ZERO, YOU GET INFINITY. AND THE ONLY THING THAT IS INFINITE IS LOVE.
NEVER LOOK DOWN ON SOMEONE UNLESS YOU ARE HELPING THEM UP.
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Old 01-18-2010, 11:44 AM
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The first appointment.


I had made the appintment for September 14th 2009. I was so nervous the day before that I didnt eat a thing. I couldnt even stomach the smell of food. I went in the next morning at 9am. Sat in his office and told him. I didnt know that my space cases and other spells were seizures, but I was just telling him about the grand mals. Then I spaced out in front of him. He left the room for a bit, apparently schedualing a whole battery of tests and scans.

He came back in the room and then did a few test of his own. Move your neck up and down, press on my hands with your feet. Does it hurt here? what about here? can you do this? follow my finger. look at the light. Yada Yada Yada.

My first test was my CT scan. and he got me in really fast. By september 28th I was in and out with the scan. Before all this I began research on what a CT scan was. how it worked and waht it checked for and why they were checking for it with seizures. Then I found this site *WOOT* and realized that I have been experiancing this for so long. and didnt even clue in.

I started posting. I was scared now, and confused and had ALOT of questions. I think I pestered everyone on this site. And then October came...
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FALL SEVEN TIMES, STAND UP EIGHT- JAPANESE PROVERB
THEY SAY YOU CAN'T DIVIDE ANYTHING BY ZERO. IF YOU DIVIDE SOMETHING BY ZERO, YOU GET INFINITY. AND THE ONLY THING THAT IS INFINITE IS LOVE.
NEVER LOOK DOWN ON SOMEONE UNLESS YOU ARE HELPING THEM UP.
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Old 01-18-2010, 11:51 AM
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The hospital.


Since the 1st of October, I was feeling off. Tired and light headed. hard to concentrate and just over all sluggish.

October 6th early morning at about 3:15ish I got up out of bed to use the washroom. I came back to bed, and Chad said I got up about 5 minutes later, telling him I needed to pee. Then I came back to bed and slept for 15 minutes and woke up and said I needed to pee. he got a little wary as each time I got up I made it to the hall door and came back. Ten minutes later I got up again and this time made to the bathroom. I remember getting an over whelming smell of burning rubber. and then nothing.

From what I was told, I just hit the floor and seized. Chad came in and found I had smashed my head on the baseboard heater and was seizing so hard, I was banging it on the floor too. he waited for it to slow down and then I had another one. and then another one.

He got me coherent enough to get me downstairs. He told me he wanted to take me to the hospital. I got cranky and scared and started to cry and beg him not to take me. He then told me that if I wasnt feeling good, did I want to go get some ice cream. I said yes. In the car I had another one. but was able to get out of the car and walk inside before I realized that i was not at dairy queen.
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THEY SAY YOU CAN'T DIVIDE ANYTHING BY ZERO. IF YOU DIVIDE SOMETHING BY ZERO, YOU GET INFINITY. AND THE ONLY THING THAT IS INFINITE IS LOVE.
NEVER LOOK DOWN ON SOMEONE UNLESS YOU ARE HELPING THEM UP.
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Old 01-18-2010, 11:58 AM
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Checking In


So we sat at the check in chairs, waiting for the triage nurse to cal us over. We sat there and she apparently tried to ask me questions that I couldnt answer or couldnt speak right. The nurse excused herself, and when she came back she had a wheel chair and a doctor in tow. They took me in so fast the girl couldnt even get my name bracelet or my allergies bracelet on before I was lying on a bed with and IV lead in my arm and hooked to so many wires.

So I was having complex partials, and chad would ring the bell each time, but they didnt understand that this was a seizure and was only waiting for the grand mals. Which happened shortly after, again with a few more after. They shot me up with something and then afterwards had me rest and waited for me to want to eat something. In total I was there for 18 and a half hours. Then went home to sleep.
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FALL SEVEN TIMES, STAND UP EIGHT- JAPANESE PROVERB
THEY SAY YOU CAN'T DIVIDE ANYTHING BY ZERO. IF YOU DIVIDE SOMETHING BY ZERO, YOU GET INFINITY. AND THE ONLY THING THAT IS INFINITE IS LOVE.
NEVER LOOK DOWN ON SOMEONE UNLESS YOU ARE HELPING THEM UP.
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Old 01-18-2010, 12:01 PM
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So I've been placed on Lamictal. started at a small dose and worked my way up to 150mg twice a day. Had seizure contol that comes and goes. sometimes it works for a while with great control, then the Tonic Clonics come back with venance.

I had a few hospital visits between the first one until now. I have an MRI coming up on the 20th of January 2010 at 9pm. Im super extremely clautophobic so this should be fun...not. The nurses are going to have a heck of a time to get me to calm down enough to go in.

I;m probably missing stuff, but for now, I'll leave it at this. and add tricks and tips as I learn them and what triggers I have found.

Thanks for tuning in

<Rae Out>
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FALL SEVEN TIMES, STAND UP EIGHT- JAPANESE PROVERB
THEY SAY YOU CAN'T DIVIDE ANYTHING BY ZERO. IF YOU DIVIDE SOMETHING BY ZERO, YOU GET INFINITY. AND THE ONLY THING THAT IS INFINITE IS LOVE.
NEVER LOOK DOWN ON SOMEONE UNLESS YOU ARE HELPING THEM UP.
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Old 01-18-2010, 02:17 PM
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Alright, so I wasnt quite done :)


Okay so to clarify things a bit more. Somewhere along the line I was diagnosed with juvenile myoclonic epilepsy. Juvenile Myoclonic epilepsy. I think this is totally wrong, but my neurologist knows best right? (HA!) I think I have temporal lobe epilepsy. I have scarring on my brain along my right temple slightly arounf my eyebrow area and near my ear. So I think they are wrong.

I had 2 blips register on my EEG. one about 3 or 4 seconds long during the hyperventilation end where you just lye there and relax. I also had a minute long one during the strobe light. It made me tingly and like if i touched someone I would give them a shock.

Recently I asked about how to stop a seizure once it starts See Any way to make it stop?

I found out that you can do this neat thumb accupressure point that totally kicks me out of a complex partial. havent been able to try it with a tonic clonic yet, (thankfully havent had one to try it) but it worked great for the complex partial.

My fiance tried the nose thing 2 nights ago too. he thought he'd try it again, thinking he didnt do it right. Well I came out of it alright. Crying and it a tonne of pain. he pressed way way to hard. he felt so bad. I cried for like an hour. and it swelled a little and now I have a tiny little brusie there. So I recommed trying this witha lot of care and dont press too hard. you can see the full explaination in the thread linked above.
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THEY SAY YOU CAN'T DIVIDE ANYTHING BY ZERO. IF YOU DIVIDE SOMETHING BY ZERO, YOU GET INFINITY. AND THE ONLY THING THAT IS INFINITE IS LOVE.
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Old 01-19-2010, 01:44 PM
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Day One


Alright, So i really don't have an exact plan of action yet. But I'll post what today has been like up until noon, and then will edit this tomorrow morning to add to it fully.
7:10am- wake up and drag my lazy butt out from under the covers. I hate leaving my warm bed when I know its cold outside. I woke up about 45 minutes prior to this and fell asleep and woke up again about every 5-10 minutes or so. trying to get those last minutes in yet I kept waking up. I went to bed at about 1am. tried to sleep at midnight but my brain was wired. the melatonin didnt kick in for a while

7:30am- I catch my buses. I don't usually eat anything until I get to work. Yes that literally means I give myself 15min in the morning to get ready. A quick get dressed, brush my hair and my teeth and throw my hair up, put glasses/contacts on and get out the door. I dont like waking up any earlier than I have too. I have this down to an art now.

8:15am- Walk into work, drop my stuff and eat something. If I eat at all this usually just consists of a power bar (now they are gluten free ones) and a tea/coffee/soda. I know I shouldnt be drinking caffine, let along a Coke before 8:30. I decided I didnt feel like eating. mostly because I had worked dumped on me the second I got in. So i usually forget that I neede to eat.

9:00am- take my meds. I currently take Vitamin B, C,E and my 150mg of Lamictal (generic brand for now but I hope to change to brand name) My last refill is alot different feeling than before. It used to say Mylan-Lamotrigine, and now it says ratio-lamotrigine. Anyone know the diffence? I accidently took them at 10:00am today as I was again overthrown with work.

12:00pm- if I decide to eat lunch then I do. usually homemade salads and fruit. thats about it. I'm not a big fan of eating if I'm not hungry. I only eat when I feel hungry so I prevent over eating and too much snakcing. Today I didnt bother eating.

1pm- the flourscent light above my desk just decided it wanted to start dying. This is already giving me a headache, and the guys in the back are all one the roof of a trailer so they can't come fix it for a while. I'll let you know how that goes.
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FALL SEVEN TIMES, STAND UP EIGHT- JAPANESE PROVERB
THEY SAY YOU CAN'T DIVIDE ANYTHING BY ZERO. IF YOU DIVIDE SOMETHING BY ZERO, YOU GET INFINITY. AND THE ONLY THING THAT IS INFINITE IS LOVE.
NEVER LOOK DOWN ON SOMEONE UNLESS YOU ARE HELPING THEM UP.

Last edited by Rae1889; 01-19-2010 at 01:47 PM.
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Old 01-19-2010, 02:00 PM
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Mylan-Lamotrigine is made by one Canadian company and Ratio-Lamotrigine is made by another.

Rae -- even if you're not hungry, you might want to get a little something into your stomach -- even if it's just a handful of nuts. Seems to me that a Power Bar isn't quite enough to cover the first 6 or seven hours of your day. I say this because it took me a while to figure out that low blood sugar was one of my triggers. Like you, I would skip breakfast, and often the first thing I would put in my stomach was a Tab soda (a no-no because of the aspartame). I would eat minimal lunch, if at all, and then wonder why I had a headache in the afternoon...
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Old 01-19-2010, 02:07 PM
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Yeah, I usually end up with a headache or a tired crash feeling. I thought it was from working to much...
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FALL SEVEN TIMES, STAND UP EIGHT- JAPANESE PROVERB
THEY SAY YOU CAN'T DIVIDE ANYTHING BY ZERO. IF YOU DIVIDE SOMETHING BY ZERO, YOU GET INFINITY. AND THE ONLY THING THAT IS INFINITE IS LOVE.
NEVER LOOK DOWN ON SOMEONE UNLESS YOU ARE HELPING THEM UP.
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Old 01-20-2010, 12:25 PM
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How about calling it "The Diary of A Person With Epilepsy"? The word EPILEPTIC always makes me think of another totally abhorrent word DALEK or CYBERMAN, and I always imagine the word epileptic to be said in the same voice as dalek.
I hope you will agree with me, you hear people with epilepsy called a f----ng Eppy, but when did you last hear someone with asthma called a f-----g Asthmy or someone with diabetes called a f-----g Diaby!!! Unfortunately, that disgusting word conjures up horrific archaic images, of people possessed by devils and demons, thrashing around, eyes rolling, foaming at the mouth!!! Please please lets stick together on this one guys?! We are people with epilepsy, that's all, and we want, simply to be accepted by society as such.

Lotsalove

Lainey xx
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  #15  
Old 01-20-2010, 12:38 PM
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I dunno. I kind of like say that I'm an Epileptic more so than Saying I have Epilepsy. Like how most people say that I am a diabetic as opposed to saying that they have diabetes. Because the questions start. What kind? Type 1 or 2. I think that saying it as Epileptic halts some of the questions. at least where I am. But I also prefer Seizure Disorder as opposed to Epilepsy. I don't like the E word too much. but saying it differently it sounds a little more comforting to me.
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FALL SEVEN TIMES, STAND UP EIGHT- JAPANESE PROVERB
THEY SAY YOU CAN'T DIVIDE ANYTHING BY ZERO. IF YOU DIVIDE SOMETHING BY ZERO, YOU GET INFINITY. AND THE ONLY THING THAT IS INFINITE IS LOVE.
NEVER LOOK DOWN ON SOMEONE UNLESS YOU ARE HELPING THEM UP.

Last edited by Rae1889; 01-20-2010 at 12:46 PM.
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Old 01-20-2010, 12:45 PM
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Day One Continued


Alright , so i promised I would update you all with the outcome of the rest of yesterday.

Well from 1pm until 5 that stupid light flicked. The guys were apparently too busy to go change it. This morning I told them that it gave me a super headache and it was to either be changed or i'm shutting off the lights. It was changed within 10 minutes after that.

at about 2pm I got the headache that Nakamova totally called. I think that she may be right.

Nothing eventful last night, although Chad said he woke up a few times to me jerking and tossing and turning. I totally did not sleep well. I was dreading today, and now I'm dreading tonight. Got the MRI tonight and I am scared witless. I won't update on how today goes until after the MRI. so i'll update on Thursday.

I also think that I will update only on the following days after its all over. this way I dont need to do this split day thing.
Peace Out!
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FALL SEVEN TIMES, STAND UP EIGHT- JAPANESE PROVERB
THEY SAY YOU CAN'T DIVIDE ANYTHING BY ZERO. IF YOU DIVIDE SOMETHING BY ZERO, YOU GET INFINITY. AND THE ONLY THING THAT IS INFINITE IS LOVE.
NEVER LOOK DOWN ON SOMEONE UNLESS YOU ARE HELPING THEM UP.
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Old 01-20-2010, 12:51 PM
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Good luck with the MRI! Just close your eyes and listen to the music in the headphones... And don't wear anything metal.
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Old 01-21-2010, 01:48 PM
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Lainey and Rae, you are both great advocates and educators for people with epilepsy, and both sweeties in my opinion, so it's interesting to hear your differing approaches, and experiences with stigma. Maybe a discussion for a different thread at some point? Or as you say, agree to disagree. Peace.


On another note -- Rae, how was your MRI?

Last edited by Nakamova; 01-21-2010 at 01:52 PM.
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Old 01-21-2010, 02:22 PM
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MRI was one of the worst experiences ever!

They put me on the bed without the machine on, and just slid me in so I can get a sense of the size. So I already started to bawl heavily and started to hyperventalate. So the have me a little sedative and that did nothing. Just freaked me out more. So they have me another shot which just stopped the heavy crying and then put me in. I had to press the button because I needed to barf and then they gave me another shot.

Then they told me they were gonna inject me with this dye that was gonna make me cold. The second I felt it I was ramming that button so hard already trying to leave the machine.
They ended up having to gas me out and the rest I don't remember. Chad said I was out for 2 hours then woke up and he took me home. Said I cried the whole way home and was scared of the car being too small. I complained that I was hungry and thirsty so he drove into McDonald's and got me a cheese burger and a coke. I ate it, got upstairs and slept like a baby.

Today I'm jerking a bit but I think that's because I went off the gluten free last night so I sorta wrecked my cycle.
No tonic clonics though, so that's a plus. Officially 2 weeks and a day today.

I'm sorry if people reading this are now scared about getting one, but I'll remind them that I am terrified of small spaces to the Nth degree. So if your okay with that, then you should be fine.

And I'm sorry that those reading this had to read the above tiff, but it at least gives you an idea about 2 very different views on E.
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Old 01-21-2010, 02:25 PM
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I'm glad you didn't have a bad reaction to the gas -- it's a good sign that you were able to eat later, even if it was MickeyD's! I hope today can be a restful one for you.
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