my story

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morgan381

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:hello: I've got to say, I am very glad I foud this website. I've been looking around for a few days and have found this to be a very supportive place. It's been really nice to be able to speak openly to people who are in a similar situation.

I was 20 years old and 9 months pregnant (literally 2 weeks from my due date) when I had my first (documented) siezures. I also happened to be over 800 miles from "home". It started while I was at work. I was training the temp who would be filling in for me while I was out on maternity leave. I was reviewing how to cut payroll checks and do the general accounting stuff, but I was having a lot of trouble staying focused. I would be explaining something and lose track of what I was saying. At first I was able to recover and continue. As the day progressed, I reached the point I could not effective carry on the conversation. I was very embarrassed and frustrated.

When it was time to leave, I drove across town to pick up my step-son from day care as usual. Then I went home. I remember putting my blinker on to turn into the driveway but driving past it. I turned around and went home. When I got in the house, I told my husband about it. He wanted me to call my OB, but being the stubborn person I am, I refused. That's the last thing I remember, until I woke up in an ambulance.

Ryan (my husband) later told me that I sat down in my chair, looked at him, yelled out and had a t/c. I was in and out of consciousness in the ambulance and in the ER. I remember waking up in the ER and hearing the doc say "See how her eyes keep rolling up into her head, those are petit-mal seizures."

While I was in the hospital, I had the gammet of tests: X-rays, MRI, CT, EEG. No abnormalities were found, with the exception of the MRI. The doc said my left temporal lobe was slightly larger than my right and that it had likely been that way since birth. My son went into fetal distress due to all the dilantin they pumped into me to stop the seizures. He was blue and unresponsive when he was born, luckily the neonatal team was there and he is now a very healthy and active 7 year old.

The docs told me that it was likely the stress of pregnancy that caused the seizures and that I wouldn't need meds unless I became pregnant again. I went almost 2 years seizure free without meds. Then, without warning, I began to have the absence/partial seizures. It turned into nonconvulsive status epillepticus and I had a secondary t/c. Since then I've been on AEDs and have only had 5 seizures in 5 years. :p Looking back, though I think I may have had more absence seizures, starting in high school. In my junior year, a friend (who ironically has gone on to become a doctor) asked me if I had ever been diagnosed with E because she noticed that I sometimes seemed to stare off into space. Then there was the time I answered the phone at work "Good morning, company name, this..." and lost track of what I had said. I was so embarrassed that I just hung up on the caller.

My seizure pattern is always the same: an aura of impending doom (I know it's coming and I pray that it'll stop), then complex partials which progressively become more frequent and more severe until I am nonconvulsive status, followed by a secondary t/c. If untreated there is a cycle of complex partials and t/c's. The partials are the most frightening, because I know what is happening, but can't stop it and can't communicate.

I think the most frightening episode was about 2 years ago. My youngest son was only a few months old. I was home alone with him when it began. I was able to put him in his crib, where I knew he'd be safe (even though he screamed and cried), then called my mom. She could tell by my voice what was going on (apparently my speach is slurred and I sound like I just woke up from a deep sleep) and said she was on her way. I layed down in the floor. It took her about 15-20 minutes to get there. I remember her walking in the door. The next thing I knew it was several hours later. I was still in the floor. My husband was home and both my parents were there, so were the paramedics. I was signing the form to refuse transport to the hospital because my parents were going to take me while my husband stayed with the kids.

I've gone back to college and am persuing a career as a RN (thanks to those of you who posted supportive messages about this). I have completed my pre-req courses and begin the official RN program this August. I look forward to this. I try to live my life to the fullest despite E. I hope to work in a neuro setting. I'm very interested in neurofeedback and other alternative methods of seizure control. But, I'm sort of afraid to persue that avenue at the moment because I am well controlled--usually about 2 years between seizures, but will have several in a row when I do have them. Recently, my doc gave me a 'scrip for ativan to be taken when the partials begin to prevent them from progressing and that seems to work really well.

I don't want E to hold me up. I have 3 children (all boys) including my step-son, who I adopted 3 years ago. I have been bunjee jumping, and recently started running again. I'm training for a 5k. I also want to sky dive. I try to have a positive attitude, but do suffer from bouts of doubt and depression; I'm working to overcome this. I tell myself I am not an epilleptic, but a person living with E and that I can't let E define who I am.

Only 3 people outside my family know I have E. I know I shouldn't be ashamed of it, I just hate the way people treat me after they find out. I prefer to let the people get to know me for who I am, then tell them only if I feel like it. I've made the 'mistake' of being too open before, only to experience the prejudice attached to the stigma of E.

About 2 years ago I found a neuro I really liked. Unfortunately, the last time I called to make an appointment (last month), I was told that 2 weeks prior, she had been in a motorcycle accident and did not survive. I have started the search for a new neuro and hope to find another good one.

Anyway, I know that was long-winded...sorry. Thanks for listening.
Morgan
 
Hi Morgan,

Welcome to the group!! Thanks for sharing your story. Everyone is very supportive and really great here!! I am so glad to be here also. I am 41, married and we have 2 teenage children. I have mostly nocturnal, complex seizures. Mine are temp.lobe, and I also have mini-partial seziures where I stare or blank out for a few seconds. I am sure we'll chat soon!

Take care!
Michelle
 
Hiya Morgan

I am new to this site myself and have found everyone to be very welcoming and friendly. I am 30 years old and live in the UK, I have had absence seizures since I was 10and have tried a number of medications but they remain uncontrolled and can total over 50 seizures a day when I am tired or been near a lot of bright lights. I am very similar to you in that I prefer to keep my condition private, I just find it works better that way, I have never been very good at talking to people face to face about my E, so I leave the subject alone. I don't let E stop me from doing anything unless it is legally impossible, I decided to dedicate my life to visiting obscure corners of the globe with photography in mind, rather then starting a family, I think that if anything having Epilepsy makes me more determined to achieve my goals.
Talk to you soon

Kim
 
MICHELLE--nice to meet you. Are you aware of your nocturnal seizures when they occur? My aunt has been having seizures (do to a head injury) for several years. She has recently begun having nocturnal t/c's that are so violent she has broken several teeth during them. Afterward, she is so exhausted she can barely get up in the mornings. She's started getting treatment for a sleeping disorder, which her doc thinks aggrivates her seizures.

KIM--I'm enveous of your travels. I hope to be able to travel someday...it sounds wonderful. So far I've not left North America, but have been all over the US, and to Mexico. I'd love to hear about some of your destinations. I agree with you about E making a person more determined. It's like I feel I have to prove something...hard to explain... You're lucky in the sense that you know the things that trigger your seizures. I've yet to figure that out for myself. I wish you well in gaining control.

Morgan
 
Hi Morgan, welcome to the forum. :hello:

Your story has many similarities to my wife's - with the pregnancies exacerbating the seizures.

It does sound like you were having absences from your description.

You can try neurofeedback without altering your current treatment regimen. It should help you get even better control over all the seizures.

Determination and a can-do spirit will take you far. :mrt:
 
Hi Morgan, welcome to the forum. :hello:

Your story has many similarities to my wife's - with the pregnancies exacerbating the seizures.

It does sound like you were having absences from your description.

You can try neurofeedback without altering your current treatment regimen. It should help you get even better control over all the seizures.

Determination and a can-do spirit will take you far. :mrt:

I see you're also in TX (but I'm not sure exactly where). Do you know of any neuros in the Ft Worth area that are open to neurofeedback?
Strange thing is, that I went my entire second pregnancy without any med changes and without any seizures...I just don't get it. This can be so frustrating.
 
I'm in Friendswood (half-way between Houston and Galveston).

I don't know any neuros in the Dallas/Ft. Worth area. You don't have to get their permission/blessing to try it though. I did run across a news story about a neurofeedback clinic in Dallas a couple years ago. I'm sure there are others in the Dallas/Ft. Worth area.
 
Just to say HELLO!

and to let you know that it does get easier to cope with as your children get older.I was diagnosed when my youngest child was 2 weeks old,my middle child was 19 months old and my eldest was 5 1/2 yrs old. A few years down the line,we have (sort of lol) accepted Epilepsy as a part of our lives,as my daughter has since been diagnosed,and there is now the possibility that my youngest son may also have epilepsy as well. My children are now 10, 6 and 4 1/2, and the youngest starts full time school in september. Its been difficult at times, but we made it through the hard times, with a little ingenuity and invention at times, and now we do our best to face the seizures with a smile and a silly or sarcastic comment (british humour). We have decided that epilepsy is just a part of who we are. So what if I can't drive....look at all the money I'm saving in Petrol! Look how much I've reduced my carbon footprint by!! On a more serious note,if you would like to chat about the practical side of being a parent of young children while coping with epilepsy,feel free to message me,you never know,i might have a very unusual helpful hint...:banana:
 
Welcome! I am both new to the seizures and this site. This site has proven to me to be my most valuable site for info.
I am in Dallas. My doc is ok, but I don't know that I would refer him at this time.
I also keep my seizure disorder a secret. There are too many negative aspects to having uneducated people knowing. With the exception of this site, the one ones that I have told are one of my adult sons (that lives with me) and two best friends. I have been debating about telling my parents, but they are elderly and not in best of health. With my own health issues (other issues prior to seizures), I have been struggling to literally live and not sure emotionally if my parents are in the position to deal with the seizure disorder on top of everything else.
 
I Tell Everyone!!!

:e:The more people you tell and explain epilepsy to, the less prejudice and ignorance there is left in the world. If other people are prejudiced/ignorant/downright rude, then THEY are the one's with the problem, not us. I HAVE been stood next to and ignored while i am seizing on the floor, on my own with a 4 yr old with me. when i was recovered enough, I handed the ignorant moo an epilepsy leaflet!!!!!SHOUT IT FROM THE ROOFTOPS!! no-one would hide the fact that they had a heart problem or diabetes or cancer, would they??!!:e:
 
Loudmouth,
I know you're probably right, especially about people with "more acceptable" problems, but in my experience, I get either pitty or prejudice from people...neither of which I want. I just want to live as normal a life as possible. I have told people I feel won't judge me as a "freak"...it just takes a lot for me to feel secure enough in a relationship/friendship to be so open and vulnerable.
 
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I think it's up to each person who they tell,

I'm just a firm believer in that the more people you tell, the more acceptable something becomes. Two or three generations ago, no-one would have told ANYONE that they had breast cancer, but a few out-spoken people changed that...and surely your brain is a more socially acceptable part of your body to have a problem with than your breasts...It's what YOU feel comfortable with at this point in time, maybe 5 years down the line, you may feel differently. When I was first diagnosed I didn't want to tell anyone in case I had the children taken away from me or something, Now I'M LOUD AND PROUD. An old friend and I were talking on a bus this morning (I hadn't seen him for 10 years) and I discovered that in the intervening years we had BOTH been diagnosed with Epilepsy. for a laugh, we looked at each other, stood up one at a time,and in all seriousness, (haha) announced..."my name is xxxx, and i have Epilepsy",then the other of us did it. YOU SHOULD HAVE SEEN THE PASSENGERS FACES.... BUT,we then educated a whole bus-load of people about epilepsy.we answered their questions,and everyone was quite supportive once the mysteriousness was taken away from it. A lot of people complained that they knew nothing of Epilepsy and that was why they had been nervous or scared before.THIS IS WHY I AM LOUD THOUGH, educate everyone=much less prejudice.
 
When I think about sharing my seizure condition with people, I am always reminded of something I read a long time ago. You give the person a little information about yourself and you see how trustworthy they are with it. Then you give them a little more and again, you see how they handle it. If they remain trustworthy in the small things, then you know you can trust them with the big stuff, in this case knowing you have epilepsy.

According to this book, you should never share everything about yourself right out of the gate, but slowly as a relationship builds momentum. The people closest to me know about my seizures; some know all the "gory" details, and others not so much. There are many people who don't know at all. And some family members give me and my husband that look of disdain when I excuse myself at a family gathering to go have a seizure in peace.
 
:e:The more people you tell and explain epilepsy to, the less prejudice and ignorance there is left in the world. If other people are prejudiced/ignorant/downright rude, then THEY are the one's with the problem, not us. I HAVE been stood next to and ignored while i am seizing on the floor, on my own with a 4 yr old with me. when i was recovered enough, I handed the ignorant moo an epilepsy leaflet!!!!!SHOUT IT FROM THE ROOFTOPS!! no-one would hide the fact that they had a heart problem or diabetes or cancer, would they??!!:e:


I couldn't agree with you more! AMEN!!!! This is exaclty why I fight so hard to educate people.
 
ten years ago, how many men would have told anyone about prostate cancer?it's only through campaigns and a few outspoken, LOUD individuals keeping the spotlight on it. The same goes for Bowel cancer, and a million other things that a generation or two ago we wouldn't have spoken about. It's only through being outspoken, keeping Epilepsy in the public's mind, educating everyone and breaking down thiose barriers just like has happened with these other diseases that we will no longer suffer from the prejudices we sometimes still encounter. One of the first things I tell people when I think we may become friends is that I have epilepsy and what i may look like when I have a seizure, and what to do and what not to do, so that they dont get scared/panic/not know what the heck is going on!it's no different from letting someone know that you are diabetic and may have problems associated with that.I may not be 'Epileptic' but epilepsy is a part of what makes me who I am, and anybody who is going to be a part of my life for any reason has no choice but to accept that,just as I don't.It's not the sum total of who I am, it is just one facet of me, but it is there nonetheless, and cannot be ignored.I wouldn't hide the fact that I have children,and my epilepsy is just as much a part of what makes me who I am as my children,so therefore,why should I hide the fact that I have epilepsy?
 
Hi Morgan! Welcome to CWE. :) I hope you really enjoy it here.:) I think your attitude about E is fantastic. Welcome!
 
Hi Morgan

Welcome to this wonderful website, I hope you get as much from it as I have since I joined earlier this year.

I just had my second brain surgery in London three weeks ago, and the guys and gals on this website have been so incredibly supportive, we all have this one Godawful thing in common, and it's just great to know that people understand each other.

Sounds as though you have experienced the same ignorance and stigma as I have over the last 22 years, I have lost count of the number of jobs I've lost, I know what you mean about people treating you differently after they hear about the epilepsy, and I have never ever called myself an "Epileptic" it is a horrible word, and a label, I've corrected many people over the years who have asked me if I'm "Epileptic" I usually say actually no, I'm a Taurus, or a member of the human race! People who turn their back on you like that weren't worth knowing anyway!

You sound like a positive person which is admirable! I'm studying for a University Certificate in Epilepsy Care & Management with Leeds University, I would so love to give something back and work with people who are maybe facing surgery, or struggling with their condition, I'm also writing a book about my experiences with Epilepsy, I just so want to help raise awareness, there are some really stupid ignorant people out there!

I hope you are ok at the moment, and I'd love to hear back from you. Keep your chin up as they say here in the UK, and you will make a lot of good mates here!

Best Wishes

Elaine x
 
Thank you, Elaine, for the warm welcome. I read that your brain surgery has been a success (so far)...one I hope goes on indefinately. :) Best of luck in school and with your book.
Morgan
 
Hi Morgan

Thanks for getting back to me, keep in touch and let me know how you are going, and I'll continue to wrap various hairbands round my head, and over my scar, as I said earlier I think, I'm having a zip put in if this needs doing again! God forbid! I hope you are having a better Summer over there in Texas than we are here in the rainy old UK? We hope to be going to Egypt for Xmas, been there four times already, and that is one place inthe world I would so love to live, very sexy men!! Sorry to my lovely firefighter fiance if he reads this, he's gorgeous too, but these Arab guts have the most amazing dark eyes!!

Hope you are ok, and I'll let you know how things are going.

Cheers

Elaine x
 
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