Hi, I'm bethany, or -b-

[littlemrsmitch]

Hello, my name is bethany, but I'll sign my messages with -b-. I've had epilepsy since I was 15 (now I'm 31), when I had my first grand mal after a head injury. Docs argue still as to whether or not the head injury was a factor or a coincidence. Anyway, it has been a mild condition, kept on light medical dosing. I had 2 seizures in a year, and even went as long as 6 years without any seizures. Docs thought I was cured, and tried to take me off my drugs, thus ruining my awesome seizure-free streak. I have been married for 10 years, and I have two great girls, 5 and 3.
But lately I've been having seizures in my sleep. I've never had aura, but seem to now. I've had "zings" and little "explosions" in my head (one so strong I actually checked my ears for blood!). Within the last month, I've also experienced noises, like a child screaming or a growling, so close it echos, but I'm all alone. Freaky, and I shake and sweat and get nauseous during these episodes, and often feel panicky.
I've had a terrible time with docs, mostly bad luck with moving and retiring, but the rest seem to have washed their hands of me. I had to go to a GP to refill my Keppra last month. I have an appointment with a neuro on Monday, and I keep feeling like this is my last chance. I've been through so many drugs, it's easier to name the ones I haven't taken yet. My GP wants to send me to Mayo or Ann Arbor if nothing changes in a few months. But I have two little girls. It's a jumble. I really want to find a solution so that I can be there for my girls, but I don't want to have to leave them to do it. It's enough that I'm not really "here", "Mommy has a lot of bum-bum days" says my 5 year-old, but to actually leave?
I've never felt like such a failure before. A 3-year-old should not have to dig through laundry baskets for pants, nor a 5-year-old make breakfast and lunch for herself and her sister, or have their mother suddenly lose her temper because they can't find their shoes.
I'm so confused, and exhausted, and frightened. What on earth is going on? Your website has been very helpful, and it's nice to know others deal with these problems, as I really thought I was losing my mind for awhile. But here's the big question:
"HOW DOES EVERYONE DEAL WITH THIS DAILY? HOW DO YOU DEAL WITH THE AFTER-EFFECTS? HOW DO YOU PARENT AND WORK AND CARRY ON IN THE FACE IT?
I really want to know your answers and strategies. Please don't try to placate me; I'm beyond the need for a pat on the back. I need help, and will take anything from advice to criticism.
Thank you,
-b-

 

[Nakamova]

Hi littlemrsmitch, welcome to CWE!

The Keppra may be affecting your mood (it's known for that) so you might want to discuss trying a different med when you see the neurologist. There may be one out there still to try.

I'm not a parent, so I can't offer you advice in that arena. Even though you don't want it, I'm offering a pat on the back and a hug. Hang in there.

Best,
Nakamova

 

[nana1]

Welcome to CWE!

Taking Keppra does have me in bad mood swings at times, and i have headaches 24/7 from Keppra also, but both my other meds give me 24/7 headach.

I am a mother of one child who is now in her older 30s. She grew up seeing me have seizures. She would run away from me for it scared her, but when i explained to her what they were and she would see photos on the computer she seemed to accept them. When we were together and i would have one she would stop people to get help for me, or if she had cell call an ambulance. Her dad was in the Navy and we be out to sea for 3 months at a time, so we were alone alot, i had to help her understand what they were and what to do if they happened ( and she was four at the time). I have no idea they are coming on so i am no help in that matter. All you can do is get a book for their age ( so they can understand) and read to them about it, and hope that helps them some, have some photos handy that would not scare them, to show how they could help out mommy.

 

[littlemrsmitch]

wow, Nana1, that must have been awful! I am grateful that my husband has flexible bosses who will let him come home and help when I need it. You amaze me.
The headaches are excruciating, and I can't seem to get rid of them. I can calm them sometimes, but I work in a bright loud area, so not always.
What do you do to help get yourself back on your feet? Do you have any tricks for soothing sore muscles, calming headaches, or getting your poop in a group again? I'd love to hear anything you've got. All I've found is Epsom salts for the bath, but I'm apparently not supposed to take baths...

 

[nana1]

My name is Nan. I got use to the idea my ex not being around. I just have to grin and bear what comes with the seizures, course i never now what to expect till after i come to.
I can not take anything for the headaches. I do get bad migraines that end me up in the er, i have gotten meds from gp for migrains. Course being very very sensitive to light does not help me with the headachs.
I found taking a nice warm or hot bath with lavendar oil ( in bottles) around the edge of tub, with soothing tones ( waterfall sounds, water hitting beach, etc, ) seem to relax me some. i know they do not want use to take baths without people in area, but hey ya got to do things for ya selve. I do have less light on in my house, but you may not be able to do that to the children are in bed. I love vanilla candals and use them when ever and were ever i can, the smell calms me down. rest and some naps the day of seizure will get me moving a while later.

 

[littlemrsmitch]

Were you able to do that when your kid was at home? Do you think she would have some ideas of how to help get my girls through this with me?
Yeah...my doc told me 'sternly' not to take baths. I told him that until he walks a block in my shoes, he can stick it. He's good like that, taking it all in stride.
Do you have sudden temper explosions that you can't stop or explain? Is it from the Keppra or the E, do yo think?

 

[nana1]

WHEN my child was around., i was able to do these things when she was napping, playing, at preschool, when she was down for the night. You need to be able to relax and calm yourself down, we need to keep our tension down.

I am on my 11 doctor starting two months ago. I have to have a doctor who talks plus listen to you also. If i am not comfortable i will not see him/her again especally if the appointment was only 5minutes and i was waiting 20 minutes. I want to be able to talk with doctor about my result of my test, it is my body we are talking about.

I have had this since i have been born, so i have lived with it all my life, so it second nature to me. I will not drive with this, even if my doctor said i could drive, i would not risk killing myself and killing or hurting other people if i had a seizure, as i have no idea they coming on.

My temper is from both. The headachs do not help with the tempers either.