hi there

[arose]

Hi there. I'm new to the site and I just wanted to introduce myself. My name is Amanda and I'm a 24 year old student in sioux city, iowa. I have a two year old son and have been with my husband for almost four years. Right now I'm going to st. luke's college for respiratory therapy and should be graduating may of 2009.

In 2002 (i was 19), I suddenly awoke one very late night to the paramedics and family surrounding me. Everyone thought i was on drugs because I'd had a grande mal seizure. Within a few weeks I was diagnosed with JME and placed on depakote ER. It has controlled my seizures for the most part but hasn't been overall affective.

It worked fine until I got pregnant two years later at 21. My levels were whacked all over the place and I had a seizure on my way to work (long story on that one). I was then told to increase the depakote (about 2000 gms a day). Things went fine until my son was born, at which point the depo was lowered back down.

About a year later, in 2006, I was at work when i suddenly had some petite mal's, about twenty of them i think. The reason for those sudden seizures was because I had requested to switch meds due to frequent migraines. Needless to say I was put back on the depakote. I haven't had a seizure in almost two years now (two years in october).

The biggest reason I'm here is because I'm just so darn frustrated!! I use to be an A student, i won writing and editor awards all the time. I had a popular personality, I got along great with life. But since the last set of seizures two years ago things have gotten really bad. My speech is slurred, i find it difficult to write, i am moody, i have frequent headaches. And the worst part is my memory. As a college student I need it so badly but I have no long term or short term. My neuro says it'll get better but it's been two years. If anyone has any ideas or therapies they know of please let me know. I'm looking for a speech rehab and study therapist right now but it's so freaking hard to find in my area. Depression has been an issue for years with me, but the epilepsy just makes it so worse.
So anyway, enough of my griping. Hi to everyone, and if anyone has any tips on speech or memory, please let me know.

Thanks and have a good day!

-Amanda Rose

 

[Georgiagirl88]

Hi Amanda,
Just wanted to say Hi and welcome to the group!! Everyone is really wonderful and has been so helpful to me. I was only diagnosed last Fall..even though I had 'spells" for years. So I am still learning. I am from Atlanta, 41 and I am married with 2 teenage children. My memory has been affected as well and it is frustrating. That is wonderful that you are getting your degree! Congrats for all of your hard work!! Especially with a little one!I do understand how it really does affect so many different parts of our lives. I guess that is where we need to find a balance and try to do our best to handle it. I am sure some folks here will have some input. I do know some meds can enhance this. (From what I understand). Mine has definitely gotten $ wrorse over the last couple yrs. Again..welcome to the group!!

Michelle

 

[morgan381]

Hi, Amanda and welcome. Your situation sounds sooo similar to mine...problems in pregnancy, going to school, etc(check out my introduction post). I'm 27 and was diagnosed about 7 years ago, and have 3 kids. I'm still trying to adjust. I know how frustrating it is, and so does everyone else here. This has been a wonderful resource for me. Everyone here is very helpful and very knowledgable. If I were in your shoes as far as problems with the side effects of my meds, I would talk to my doc again about changing up meds. I wish you well.
Morgan

 

[Crazy Monkey]

Hiya Amanda

I have only recently joined the forum myself, the people have been great, really friendly and welcoming, it is nice to finally be talking to people who are in similar situations and are not judging you. I have complex partial (absence) seizures which are uncontrolled even though I am taking 2 lots of medication, the seizures happen very frequently (several a day), I try to ignore them the best I can and live my life positively, but I struggle to talk to people about my condition, so I am hoping that joining this forum will help me to be more open.
I hope you get the answers you are searching for

Kim

 

[RobinN]

HI Amanda - Welcome to CWE

My daughter has had memory issues for most of her life. I really have no idea what it would have done had she remained on meds longer. We had other side effects to deal with, and they simply were not okay with us. So we stopped.

She deals with tonic clonic seizures, and has controlled them much better with nutritional changes, vitamins and mineral supplements that support brain health, and neurofeedback.

Her memory is much improved since starting neurofeedback. Grades are better than ever which of course improves her self esteem. Her note taking is clear, her recall is better, her thought processing. It is fascinating to watch. Plus her seizures were at around 5-6 a month, now we are at one or less. Hers are hormonally triggered, as yours appear to be as well.

I do hope that you find some answers that work for you here.

 

[speber]

Welcome Amanda!.....

Glad you found our happy bunch here!:banana:

If you drop down the 'Quick Links' section (near the right end of the menu bar above)...you'll find a link to 'Best Forum Threads'.....

Click that.....it has good threads with info you might find useful!

I know you're not EXTREMLY new to epilepsy....but checking out the threads Epilepsy 101.... and the threads on AED's and their side effects might do you some good!

You can also do a search in this forum on particular words or click a word in the 'Tag Cloud' you see at the top!

Good luck hunting!....we're here to help each other out!

Oh yeah, for my part.....try some nice music to de-stress!

Peace
Speber
:rock:

 

[homemom360]

amanda, if you pull up my intro post you will see that alot of what has happened to you has happened to me. the first few seizures i had wiped out everything. my short term memory and along with it, the career i was working on and the life i had. i won't lie to you i have gotten my short term memory back some what, but it took me nearly six years. it basically was repeating everything all the time, and retraining my brain. i used the same theropy that is used on stroke survivors to help them regain the use of the different missing functions in the brain. i went no where with a note pad and pen. i still have problems with concentration and keeping my thoughts straight under pressure and when i am tired or stressed but it has gotten better over the years, so i can say there is the possibility for you that there is light at the end of the tunnel. i wish you luck with all you do and hope you get nothing but better.

 

[kris1230]

Hi Amanda,

My name is Krista and I've got some things in common with you. I was also that "A" student up until I started struggling with my seizures. I'm 21, just graduated from college. I still made honors, but I didn't get all "A's", and it was hard as ever. My memory is so bad, I can ask a question and ask it again seconds later. I used to be a very organized person and I can never remember where I put things anymore and I leave things in the strangest places...that was hard going to school...I had a lot break downs. I'm also now a moody person..EXTREMELY...which I wasn't before, I get migranes, and I have the difficulty with handwriting too but until now I never attributed that to my seizures which would make since. I also take depoke, which my doctor told me is supposed to help with the migranes, but I'm kinda thinking it worsens them. I guess I don't really have much for advice right now, I'm going to get some advice from another doctor later this month. I'm told memory usually comes back, but it takes time. Hang in there!

Krista

 

[Bernard]

Hi Amanda, welcome to the forum. :hello:

Depakote affected my wife similarly. She was like a zombie on it - in constant brain fog.

Perhaps there are some ideas here that can help: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

 

[Meetz1064]

Ewww, Depakote.

it kicked my ARSE.

brain fog, memory problems....THEN let's add the weight issues and the edema........UGHHHHHH

I HATE that drug

Welcome to CWE, by the way. You've found a wonderful place to be, and great bunch of people to be friends with!

 

[hawke86]

Welcome to CWE. Make yourself at home.

 

[byhisgrace]

hi amanda- i am pretty new to the site too and live across the border from you-sioux falls sd. mother of 2 and feel all your fustration with you. search the site and well as some search engines for a few things. magnesium and or potassium deficiency. might look into the benifits of a progesterone cream. especially if you find yourself with pms and all the like female stuff. most of all, know that you are not alone-were all in this together.

 

[montse]

Hi Amanda, my epilepsy came back when I was 20, I was in the university, doctors said that perhaps I should change my studies (I wanted to be a lawyer), I tried another thing "easier" but my seizures were still there, so I stopped it, think on you and what is the best for you, if you feel tired you need to rest, you are very young and when you get better you can try it again.Take care.

 

[Wally]

Hey Amanda

There is no worse feeling than waking up to a bunch of guys in blue suits staring at you. Then the worried expression on my wifes face just makes it even worse! My memory was trashed for quite a while. I have always been a list person. I have a smart phone (Treo) and I keep every thing on it. On really bad days I would just stare at it in bewilderment trying to figure out how to find what I was looking for. But I found that the more I used my brain, the better my recall became.

Wally

 

[maureen]

memory issues

Hi Amanda,

Welcome to the group. It is a fantastic group!!!!! If nothing else you'll find that you're not alone, that it's not all in your head. I feel so much better knowing that other people have the same issues and side effects as I do. I wouldn't wish them on anyone, but knowing that I'm not the only one helps.

Does that make sense?

Ways that I cope: I write everything down - what needs to be done, what I've done etc. I lean on my husband a lot to remind me of things - this usually helps to trigger the memory and then I can carry on. I also make jokes and try and laugh off my lousy memory.

Once again, welcome. We all can learn a lot from each other

Maureen

 

[skillefer]

Hi Amanda! I used to live in Sioux City. Welcome to CWE. My first suggestion, as far as school is concerned is to go see the Disabled Student Services office at your college. Most colleges have one, and they can provide you with some ways to help. Like you, I have grand mals, and have taked Depakote. For me, Depakote worked fine...but that's me, and everybody is different. Some basic coping techniques that might help would be :

1. make lists
2. write down anything that is important
3. ask people to remind you of things if you need to
4. have your spouse, or a loved one go with you to doctor's appt's. That way, they can get their questions answered, and you can get your questions answered.
5. When studying at home, take notes. I used to jot down a one paragraph summary of every chapter I had to read when I was in grad school. Trust me, it helps.
6. Go over your notes daily.
7. Make 3 copies of important papers. (I usually keep one copy in the house, and for an odd reason, one copy in my desk at work. )

Hope this helps.