Learning to Cope

[HeatherKrajicek]

I suddenly began having seizures April 04, 2012. I had never had a seizure before in my life. Now after 3 times in the epilepsy monitoring unit, trips to two major hospitals we finally have a diagnosis. My neurologist says that I have temporal lobe focal seizures. They can not be seen on the EEG because they are too deep. I also have elevated potassium channel antibodies in my brain. I have been through plasma pherisis and high dose steroids in the hospital. Here is the kicker. I am only 33 years old. I had finally gotten my dream job as a special education behavioral instructor and making real progress with helping kids get on track. I loved the job. My husband and I were getting ready to get pregnant. Then BAM one day seizures. And not just seizures. I have up to five seizures a day. I do have good days, about four a month that I don't have any seizure at all. They are strange in presentation.
They begin I get completely out of focus. Everything starts to get fuzzy and confusing. The left side of my face gets numb and tingly around my mouth and high cheekbone. Then I do a tick like movement with severe neck jerks on the left side and down to the right. I stare and I don't remember. My left arm sometimes comes up. I sleep for up to three hours and then I'm tired but fine. The problem is as most of you know it can happen anywhere and at anytime. Stress, fatigue, loud noises and startle can bring them on. I can't get a job because they are so unpredictable. So right now I am Oxtellar 900 mg a day.

 

[mejohn1]

Hi Heather, welcome to CWE! Sorry you're having such a rough go of things right now. I have been dealing with very similar symptoms for 27 years, and this last May had a "big one" that sent me to the ER. I've lost my drivers license because of it, resulting in losing my outside sales position as well. It's not enjoyable, to say the least. I'm curious about your diagnosis, specifically where you stated "They can not be seen on the EEG". I've never had a positive eeg and have yet to have an actual diagnosis; so would you please tell me how they came up with that? I'm not doubting, but was actually encouraged by what you said and am going to bring it up to my neuro. This site has been a lot of help and has tons of information from people who are living this nightmare everyday. Hang in there.

 

[Princess]

I was diagnosed with temporal lobe epilepsy in October 2012. I am a high school teacher. I am currently taking Topamax 50 in the am and 100 in the pm and Trileptal 600 twice a day. I have what appear to be clusters when I have seizures, but if I don't take any meds I will have them everyday instead of 2 to 3 times a month. I was in a car accident about 6 years ago and these seizures just came out of the blue. Sometimes complex partial and sometimes grand-mal. I love my job and my independence. I don't want to give them up :-(

 

[mejohn1]

Each State has it's own set of laws. In Indiana, I have to be seizure free for 6 months, on meds to be allowed to drive. I hid it for many years, and had learned to live with my "ticks". In May I had a grand mal and wound up in the ER. After that, it was off to the neurologist and loss of driving. Personally, I feel I could jump behind the wheel and be fine, but that grand mal scared the snot out of me and I know if that were to happen while driving, it would be really bad. It's really thrown my life into flux, and I'm not sure what to do about it all. There has always been an aura to save me and give me time to get safe, but not with the big one. I'm currently on 3000mg of Keppra daily, and have had a handful of breakthrough partials. Next step, 3 day video eeg.....ugh

 

[Princess]

John, Alabama has the 6 months seizure free law. It is so new to me. They think it was due to the head injury in the car accident that caused my epilesy. I don't have an aura at all.
I understand Heather. I am trying to make sense of all of this too.

 

[Nakamova]

Hi heather, welcome!

I hope you are able to find the right combination of meds/doses to be able to return to work. has the Oxtellar been helping?

Best,
Nakamova

 

[nightowl47]

Princess:

John, Alabama has the 6 months seizure free law. It is so new to me. They think it was due to the head injury in the car accident that caused my epilesy. I don't have an aura at all.
I understand Heather. I am trying to make sense of all of this too.

I was wondering whether I would run across someone just like me who doesn't have any auras. Most people talk about them, and I just think how lucky they are to know what's coming and get prepared. I never know and have hurt myself so bad, been in auto wrecks, now no license and on disability due to this crazy disease called Epilepsy. I, too, live in southeast Alabama.
Would love to get to know more about you.

Heather:
I recently experienced that left-sided facial numbness you spoke of, but no ticks, I have really shakey hands and I stare a lot, take long naps during the day. But that numbness scared me because the next day I experienced severe chest pain. It was really all strange to me. This site has helped me a lot and given me lots of new people to talk to. You are never alone.

Terri

:hugs: