Story Sharing
 

I always wanted to 'give back' to the many people who have given to me when others weren't around. I don't have much to give, but I can give you my story and a little bit of me. Plus, I figure you'd be more cozy with a moderator you felt like you 'knew' rather than a quiet online persona.

So, here I come. Grab a drink of whatever you like, and sit down for storytime!

I was born in June of 1977, which was an excellent year from what I have heard. Of course it is excellent since that is when I came about. I was born with the name Lori, however, since I was premature they called me "Lilly" (for being little). I couldn't pronounce Lilly, so I told people my name was "Ewwie" - which is how Ellie came about.

Where to start? Well, I didn't get off with the best start. They told my mother I had a reflux which was common, but my problem wasn't common - noone noticed it was the real issue. I was sent home, and on several occasions, I had stopped breathing because I had asphyxiated after a feeding due to an undeveloped esophageal spincter. I received CPR approximately 5 times, going without oxygen for too long at only 2 weeks of age.

Due to this problem, I spent the first 10 months of my life in an elevated position. I would stop breathing if I was not elevated. It resolved itself as I aged.

At three months of age, I developed a fever of around 104. My mother took me to the emergency room where they had told her that I had an ear infection and sent me home. The fever would not go down, so she took me back two days later where they told her I had colic and an ear infection. Another day had passed and anytime they touched me I would scream (my back). Within hours, I had a bulging fontanel (aka conehead) and she took me back to the ER where they realized I did not have an ear infection nor did I have colic, I had meningitis that I had for nearly a week at this point - along with an extremely high fever.

They couldn't pinpoint if it were the meningitis or the apnea that caused me to be delayed, but either way - I had developmental delays for ~2 years. All 'delays' beyond that point once I began school ended up in unnecessary punishment because they assumed I was just a bad kid (although shy, and I did my work, I just took three times as long as your 'average' kid).

In Junior High, they did Sensory Integration testing on me, which showed some problems. My physician and school both did not follow up with this. My mother, being a young parent lacking the internet and it's resources, trusted them - and also did not follow up. I'm almost happy she didn't, or I'd probably have been treated with ADD medication. She still feels guilty though.

I'd guess it all began when I was around 10 or so. I knew I was different, but not in a good way. I thought I was stupid. The pressure I had on me in school made me feel so sad, it's hard to explain emotions as a child, but it resulted in my being very shy and very ashamed of small things. It got to the point where I had my first seizure - I thought I passed out - I hid it, and I continued to hide them. I had an episode at my Grandma's house, but rather than to question me, she called my mother and accused her of starving me. She thought feeding me a banana was a cure-all method.

"You don't eat enough bananas!", she said.

My dates aren't all that accurate since my memory and I have lost touch some time ago. But I will do my best here.

I believe I was 14 when I got my first period (sorry men if I gross you out), this is when the GM's started. Mind you, I only had these once per year - sometimes twice, but they weren't common. I always was able to hide them, or feel them coming.

I was 18 or 19 the first big GM, I was in the process of leaving my boyfriend when I'd found out he was using drugs. The timing was stellar, to the point that I had felt nausea and went to the restroom to throw up, but I didn't throw up. I had a seizure, losing control of my bowels. What did I think? I thought he drugged me! Told him that if he came near me again, I'd have my dad beat him up.

(I'd feel bad for him if he didn't use drugs though - it was just bad timing, hehe)

They seemed to be more and more frequent since that time, I'd hid them well short of my public episodes. Once I was told I had low blood sugar by the paramedics, they gave me juice sending me home. The other time, I was accused of being anorexic. I have been small since birth, I can't help it. I'm used to the anorexic thing now, though..kinda.

Another time, I broke my nose and my tailbone which somehow resulted in them not even checking why I passed out or lost control of my bladder. I did not even know what a seizure was aside from the typical seizure anyone not educated in this field. I only knew of one, and I'm sure you all know what I'm talking about. :)

Well, my 'low blood sugar' caught up with me. I never told my recent boyfriend of 5 years about my episodes, and had one in May he had to witness. I suspected they weren't low blood sugar, but I was too ashamed of being sick I never told anyone. Anyway, I was laying down and felt ill and got up. I guess during my seizure I let out a howl that woke him up. I was on the floor, in a puddle of my own wee and had a lot of explaining to do.

He thought I was dying, he called his mother (whom is a doctor) telling her he thinks I have an aneurysm. The poor guy. So, I was fortunate enough to have an idiot of a doctor who told me that I had food poisoning! This is a new one.

Well, my boyfriend said, "No". He made me follow up. I didn't "Pass" my EEG. My MRI's have been fine, my EEG's are always abnormal and my seizure activity seems to be moving as of recent.

I still have problems being honest about my condition, and I don't fully understand it since it doesn't exactly have a set name. They change my diagnosis like I change my coffee brands (I like what is on sale!).

I've been to 4 Neurologists, 1 Epileptologist, 1 Immunologist, 1 Physical Therapist, and 1 O.P. (My eye doctor, I always forget how to spell her title).

I take 2,000 MGs of Keppra, and 500 MG's of Depakote ER per day.

I am 29 years old, I weigh 95 pounds (my goal was 112, but I keep losing weight :().

I have a 8 year old son (I was told I couldn't have him if I waited, so I didn't wait). I can't have children anymore, though. I also am a proud owner of 2 cute dogs and one very handsome man who is 34 (I think, he understands I forget his age. I forget mine, too!).

Anyway, I have several seizure types. Two I fear, the others I don't notice. I have a hard time noticing the focal/absent seizures since they come in many forms that I find to be 'normal' for me. Since I've always done it, I can't spot one!

I decided long ago to give my seizures Phases. This is my "Typical Drop Seizure". I am more savvy now and know my phases are auras/warnings. :)

Phase 1: This phase always begins with nausea, this increases as time goes by

Phase 2: This phase, the nausea is then accompanied by dizziness

Phase 3: This phase is about 10 minutes past the initial feeling of nausea, and I know I am going to throw up.

Phase 4: This phase, I feel like I am getting ready to throw up and that is when everything goes black. I start to hear the ringing and 'whomp whomp' sounds in my ears. I can't talk, I can't hear and everything is a blur. I sway, fall, etc. Depending on what I was doing.

Phase 5: This phase is what I call "The Aftermath" - I normally awake in extreme pain on the lower portion of my head (the back/base of my skull). The ringing in my ears is so extreme it hurts. My body is ghostly white, and soaking wet with sweat. I am shaking just like someone in shock, my entire body shakes. I am confused, and normally spaced out.

The kicker? I have never thrown up, but now I know my 'aura' is nausea. Nausea is my "You have 10 minutes to find a padded place to lay down" warning.


These are my "PMS Seizures" and they scare me. They are very painful. I know, you read in crazy places seizures don't hurt. People who don't have them always say that!

Phase 1: this typically starts with numbness/tingling in my pinky and ring finger on my right hand. This will gradually move to the area between my wrist and my elbow on my right arm.

Phase 2: it will move to my right leg, the area between my ankle and my kneee. (Weird, I know).

Phase 3: now the numbness turns into 'shocking' and the shocks eventually take over my entire body. From the top of my head to my toes, it's like an electrical storm.

Phase 4: this is when I think I am going to die. I am paralyzed, I cannot speak, see move, etc. I hear the 'seizure' type buzzing, whomp-whomp sound, etc. but nothing else. I go completely blind, and cannot do anything - but I stay awake. I have learned to try to talk to myself, last time I said "I'm awake, I'm alive" and said that over and over.

Phase 5: I normally wake up 2-5 hours later. I don't know if I have a full blown seizure and pass out, pass out from pain or fall asleep from exhaustion. I can't remember.

These entire episodes always happen the day before my period, I've been having them for only a few months. But they are very painful and they scare me very badly. I am not too fond of them. I haven't lost control of any bowel movements or my bladder during these. My doctor tells me they are 'normal' but says nothing else. I beg to differ!

I, like anyone else - have moments where I lose faith. And I cry, I feel like I am being picked on, punished if you will. I am also famous for a stellar sense of humor, I like to make jokes and laugh. I'd be a liar if I said this was easy, because it's not. It is the hardest thing I've had to accept and something I have hid my entire life. I am fortunate enough to have someone in my life who made me do something about this.

Anyway, I also have headaches daily - I have Trigeminal Neuralgia (right side). My previous seizures were in my frontal and right central temporal lobe. They are now in those two spots and my parietal lobe as of September. I don't quite know what that means, to be honest.

I also have a decreased REM, and balance problems (midline shift to the right).

Attached are pictures of me, so you can see the spaz behind these letters.

The first picture is when I was 7 years old, the other picture is from March (prior to losing some hair from Depakote :(). No recent pictures until my hair comes back!

I love chatting, and since I can't work or drive - feel free to chat with me anytime. I use most of the instant messenger's out there except ICQ.

it sounds like you are a very capable person:)

What an AMAZING story! Thank you so much for sharing. I am in awe of your bravery, persistence, and what seems like an amazing attitude. And you're beautiful too. Can I hate you now? ;)

Oh, and 77 was indeed a good year, as I am only 4 months younger than you! :D

Wow, you're very pretty.

Thank you for sharing, would have been proud to have a granddaughter as brave and wise as yoPer, Norway
PS
I dont have E, but want to be informed, Your story should be curriculum at doc and nurse schools

Thanks so much for the kind replies! You all are great!! :D

Ellie,

You hold much in your heart.
Thank you for letting us in.
Beautiful inside too.

It is a pleasure to know you.

Thanks,
kitt00

Just a small update. I'll be going to a new Epileptologist on the 25th of this month for 'poorly controlled seizures' so says the referral. I've heard nothing but good things about her, so as usual I have my hopes up (again, for the 6th time).

Due to my seizures 'spreading' and the major issue being they are coming from my parietal lobe. I am not going to get too excited for a 'fix' because surgery is basically out of the question for seizures of this type. However, if they can at least get the ball rolling on my frontal and R. temporal lobe sz's I'll take that as a good start and learn to try to copy with the pain associated with my parietal lobe.

I've (in all honesty) been in an emotional storm. I'm hoping she doesn't let me down.

Ellie,

You will do just fine at this Dr. She will have a fresh outlook on things. Also, she will be much informed. I finally got to an actual, "Epileptologist" Prior to that is was a nuro. You are on the right track. You don't need luck when you are smart, and that you are.

Stay well my friend.
Kitt00

I have a little bit of time before I clean myself up to get my VEEG results. Yes, I know it's been a month and I didn't get results. I had gotten an Epileptologist, she is the one who ordered the VEEG due to some recent episodes that had finally touched the last nerve with me. She works -a lot- she's in her office around 6 hours, and then spends several more hours in the Epilepsy Center where the VEEGs are done as well as the surgery patients, recovery, etc. She reads and does the VEEG transcripts as well, so I'm ok with waiting a month - she has a lot on her plate.

Anyway, my boost in Keppra (ugh) seems to have lessened the cycle-related seizures some. I still have them, but not as severe. The downside, is I am bordering a GM once a week. I may sound weird, but I personally prefer a GM over my other seizures since my others seem to be coming from my parietal lobe which brings pain. I have a high pain tolerance, but I have my limits - this pain exceeds those limits. At least for my GM I have auras most of the time and can find a safe spot until I finish, then I go to bed. I'm out cold to miss any pain (I don't bite much, normally get the sides but they are so tough they don't bug me much).

I've been given the unfortunate label that we all hate: "Uncontrolled Seizures". We all know what it means, and no-one likes it. Somewhere in those letters it represents a loss of independence, and I hate that feeling.

My Epi offered me anti-depressants when we first met, and I think she kind of looked at me the wrong way. I was in such a panic to talk fast (I'm used to having 10 minutes to say my lines and then my time is up) that I may have came off as a total spaz. Then I was working so hard (mentally) to do the tests well that I started crying because I couldn't remember the three words she told me to. I explained, "I'm not depressed, I am angry". I think being angry or frustrated is easily justified under those circumstances.

Anyway, on to the update of my 'stuff'.

I still have my GMs, sometimes once a month - sometimes 2-4 times. It's random.

My catamenial seizures (of sorts) are associated somehow with my parietal lobe as the seizures are the same. I assume my cycle triggers these now instead of GM's.

The seizures from my parietal lobe give off many various sensations, I have a lot of numbness in random spots (my face, hands, feet, butt, breasts, etc), I also have tingling (random spots, also) and then electrical shocks (damn those).

Amazing as it sounds, I have been shocked before when I was trying to rig a light for a squirrel cage, it came undone and I was holding the two live wires. The actual shocking sensation is very similar to being shocked (I know, weird!), however, the pain is worse. It feels like nerve pain, if anyone has sciatica, they will know that. This is like having the worst sciatica day and the pain is anywhere in your body, your face, feet, etc. Whatever it is, I hate it.

I've been having aching feet, but that could be from various things.

Right now, my most random thing is visible muscle twitches and cramps. I will watch my face, hands, arms, legs, stomach, etc. twitch. Like a moth is fluttering under my skin. The area in question is typically the size of a half dollar up to the size of a playing card. This can last from 5 minutes up to an hour. It doesn't hurt, it's just weird and kind of gross.

The cramps are the same, I can see the muscle bouncing and then BAM it turns into a lump the size of a golfball. Oh boy, does it hurt. This happened just below my rib cage in the center (between my breasts but lower than ribs) and it looked so gross and felt like hell. It's like a charlie horse cramp, but in a weird place. Something similar happened to my hands, they warped into this weird position. I am amazed my fingers didn't break due to the positions they were in.

Hopefully today she has something good to say. I miss working, and I miss staying awake all day. I've been having so many frequent auras for my GMs (but they don't turn into GM's) that I have been much more exhausted than normal.

I had a good couple of weeks, and got into this mindset nothing was wrong with me. Like a moron, I stopped my pills. Don't do that, by the way. It was a stupid decision I made, and I won't do it again.

I'm going to try a bit of a lifestyle change after the new year in regards to a more epilepsy friendly exercise. A lot of activity is a trigger for me, so in a way - I want to test out building up my tolerance in a way. Starting very very small and then working up slowly. I'm hopeful this will help me gain weight, as well.

My doctors wont let me do anything until my blood pressure is under control. They said I ran dangerously low blood pressure for an entire week and looking back at my charts, those seem to be the same. I know mine is low, always have - but I don't know much about it to even start guessing why it's that way.

Anyway, I'll update this again once I hear something.

It seems my VEEG didn't yield much brain information but brought a potential heart problem to their attention. Now I have to go on the 13th for some testing along with a tilt table eeg. She mentioned some possible adrenal gland tumor. She's sending me to this cardiologist for dysautonomic syncope and said something about neuropathy something or another.

I had a "big word overload".

Not much else to say, she's going to change my meds again but is waiting until I have these other tests done first. I'm going to go Google everything else now. :D

Thanks for being a survivor. You are an inspriation. Your story made my day.
Someday, your son will be very proud of his mom.:)

Hi Ellie,

You are a great writer and take my word I can relate to a lot of what you have been through. I started having sz. when I was 10 yrs. old in the beginning it was just migraine headaches and then that led into absence sz. for me when I was in the 6th grade. My neuro at the time had me taking zarontin, tegretol, mysoline, dilantin, and phenobarbital all at the same time because they couldn't control my sz. I was half asleep for most of the day because they had me taking 106 pills a week. By the age of 12 the complex partial sz. began and I would see colors flashing back and forth in my eyes, hear wierd sounds, or sometimes just hear one word repeated over and over again. I was having over 300 sz. a yr. and my neuro found out that I had a scar on the right temporal lobe that was triggering my sz. and when I went through my monthly cycle with the hormones changing that's when the sz. would really fire up one right after another.
Years went by and I finally looked into having brain surgery done. I had to a video e.e.g. done but they had to do surgery and put the electrodes directly on my brain. My neurosurgeon drilled 7 holes in my skull 4 on the right and 3 on the left and they put the electrodes directly on my brain this is when they were able to find the scar tissue that was triggering sz. along with finding out that anything with nutra sweet (aspartame) was causing me to have sz. after sz. Later on on had ultra sound brain surgery and my surgeon removed 75% of the right temporal lobe and all of my right hippocampus this helped reduce my sz. greatly to the point where I went as low as 68 sz. in one yr. compared to 300 before the surgery. I've learned taking vitamin B12 once a day helps reduce my sz. along with putting a cold washcloth on my face and neck 3 times a day or more helps calm the neurons down in the brain and stops or reduces sz. for people I was in a medical study about this last yr. and they found each time I had any sz. my body temp. was higher even before the sz. so they told me to put a cold washcloth on my face and I was amazed to see that it helped reduce my sz. even more. When it comes to having sz. during your monthly cycle start eating peanuts or almonds because they have progesterone in them and progesterone helps calm the nerves down. What's happening is when a woman goes through her cycle the estrogen level increases which causes more excitment in the brain and the progesterone level decreases and there's less calming of the nerves and this is what triggers sz. for some women. They have also found out that keppra can increase sz. for some people I know keppra caused me to have drop attacks and myoclonic sz. which I never had in my life until I went on that. Also neurontin can be dangerous for some people the last I knew the drug co. making neurontin had $240 million in lawsuits because the drug was causing people to start having sz. that never had them before. I know the drug messed me up terribly.
Just keep your chin up and have faith because there's a reason why all of you have gone through the epilepsy and all that goes with it. I know it's made me stronger in life. Here's wishing You Well and May God Bless You!

Sue

Ellie,

Your story is an inspiration. And you are truly a beautiful person inside and out. i hope that now things have gotten better for you since this post by you was in 2006.

i have some things in common, i have trigeminal neuralgia on the right side of my face and have nueropathy so I so know what those electric shocks feel like. I have FMS too and have had electric shocks all over my body for hours where i was curled up in a ball from the pain.

Porkette is right about B12 helping for this type of thing, although I didn't realize it helped with seizures but it makes sense. I take 5000mcg, well; just looked at the spray I use for it and it is 1.2mgs. i don't think that is as much as I was taking. anyway, using a spray from or a sublingual form where it disolves under your tongue is the best way to take this vitamin for most of it to actually get into you. If you take a pill that you swallow not as much is being used by the body and gets peed out if you will. this has helped my restless legs syndrom and my trigeminal neuralgia as well as the neuropathy. I am also on neurontin which helps with all of the nerve pain too.

Porkette you mentioned a big lawsuit by neurontin users could you tell me a little more about that?

thanks and stay strong Ellie!:hug:

Sara