Hello...New Here & New to Epilepsy

[Minkels]

Hello Everyone,

I'm Anja, currently living in Kentucky, originally from Upstate NY. I was diagnosed with tonic clonic seizures in June 2010, no known cause. I'm glad that I found this board---my family is supportive of me but any talk of seizures tends to upset them and sometimes I need to talk to someone else who really understands what it's like to have epilepsy.

I currently take Keppra (500 mg 2x day), Topomax (100 mg 2x day) and Lamictal XR (150 mg/day). I had my first seizures at work, and I think it has pretty much killed my career prospects there (yeah, I know all about the ADA, having an extensive HR background) since the meds I am on now have pretty much fried my brain. I am grateful though that I have not had a seizure for 9 weeks now, just a couple of auras (actually simple partials?). At this point, I am looking for another job that doesn't require me to work 14+ hours per day and live on 5 hours of sleep since lack of sleep seems to be a major seizure trigger for me. I have had to learn this the hard way.

I enjoy reading, dancing, drawing, meeting new people, travel, and learning almost anything new. I am in college part-time to finish up my BSN as part of a mid-life career change since I've wanted to work in healthcare since I realized that business wasn't really for me back in my mid-20's--I'm 40 now. I guess better late than never!

I'm happily married to my husband Bob (18 years soon) and have an 11 year old daughter named Aurora. We have 2 cats, numerous freshwater, saltwater, and brackish water fish, and also have rescue birds of various species--finches, cockatiels, and lovebirds.

Epilepsy has slowed me down a bit---or should I say the medications for it have slowed me down a bit---but I am still pushing forward with my plans.

I'm looking forward to meeting others and want to thank everyone who takes the time to read this.

[reuben12]

Hey,

I just wanted to take the time to welcome you to the boards. I'm new to the forum as well. I'm glad you posted, it seems like a nice place.

[Nakamova]

Hi Anja, welcome to CWE!

You sound remarkably upbeat for someone diagnosed in June of this year. I found the early going after my diagnosis kind of rough. Like you, my seizures came out of nowhere (I was 35 at the time). The majority of seizure disorders/diagnoses seem to have no known "cause" which can be maddening. And the meds can be equally frustrating -- It seems unusual to me that you are on three anti-epileptic drugs. I assume your neurologist had you try monotherapy first, and then added meds to the mix to see what would work. After you are stable for a while, you might want to ask about backing off the dosages of one or another, to see if you feel a bit less fried.

I hope you feel free to contribute, ask questions, vent, etc. CWE is a great forum, a terrific source of support, empathy, feedback, advice...

Best,
Nakamova

[daisy.girl]

Hi Anja.....and welcome! I too was dx in June of this year, but was having testing since Feb.

[Endless]

Welcome, Anja!

I agree with Nakamova. There may be room for some adjustment of your meds so your brain isn't so burned out. Are you seeing a neurologist. Is he an epileptologist (seizure specialist)? If you aren't able to get seizures under control with no unacceptable side effects, it might be worth getting a second opinion from an epileptologist.

I'm glad you are here and you've found us. This is the one place I can come where I get the info and support I really need.

[reuben12]

Hmm, Again I'm new at this, just a few weeks into the process, but in the ER they had me on 3 drugs as well, as I was having 20+ seizures a day and they wanted it under control. I ended up having to be dropped to 1 though as the 3 was causing more harm than good. Also a late in life, 33, no known cause person. Definitely can send you for a loop that's for sure. Although admittedly at this point I feel the drugs are worse than the E, but hopefully you guys are right and it's possible to get it under control without any side effects.

[thoughtiwascured]

Hey Anja. Fellow Kentuckian here. Have you applied for Disability for your Epilepsy? I'm with Reuben and have gotten down to 1 med and feel it is better for me. One med is bad enough on the liver and thought processes, much less 3 or 4.

[Minkels]

Thanks for the welcome everyone.

Nakamova: I started out on monotherapy (Keppra) but continued to have seizures, so the second drug (Topomax) was added. Several more seizures later, Lamictal XR was added. It's been several weeks since the last round of seizures so I am hoping these 3 drugs keep the seizures under control. I am definitely going to see about backing off a bit if I stabilize on the meds, I hate feeling fried like this.

Endless...I am seeing a neurologist. I am thinking about seeing a specialist in epilepsy in Nashville TN soon if the side effects do not subside pretty soon...not sure how long they are supposed to last, but it seems like they should be better by now?

reuben12: Sorry to hear that you had such a hard time recently...several a day was bad enough...can't even imagine having 20 of them in one day. There are some days I definitely think that seizures once in while are probably preferable to the side effects of the drugs but then again, I work around machinery and also don't want to end up with my freedom further restricted by additional seizures. I also hope everyone's right about the side effects eventually going away...we're both pretty new to this and the drugs.

thoughtiwascured: Nice to meet you. I don't really plan on applying for disability unless I absolutely have to since I am the sole breadwinner for my family and there is absolutely no way that disability income would pay me near what I can bring home working. I am hoping that I can keep my job (though my employer is pretty unhappy with my epilepsy and the effects the drugs have on my performance). That being said, I wish I could take off at least enough time so that I feel enough like myself again to feel confident enough in my abilities to do a decent job again.

[huskymom]

Hi Anja!!

Welcome to the show! This is a great place to be. Like you, my family and friends are very supportive, but you feel better talking to someone who has the same feelings. It is impossible to explain how you feel after a seizure! We are here for you!

[reuben12]

I definitely couldn't have said it better myself. So many days I feel I'm better off just coming off the drugs and dealing with the seizures, or just show up in the ER seizing and have them try to put me on a different drug there. Oh well, guess we just have to be patient and try to keep a good attitude about it. Sucks about your work, as well as the safety issues if this is happening there.

[Endless]

Hi, Minkels,

About side effects subsiding... sometimes they do, and sometimes they don't. Sometimes they go away over weeks or months, or at least become less intense. Sometimes a small decrease in dose gives some relief from side effects. That's what the doctor did for me on Lamictal. Of course, it's not an all or nothing thing - some side effects could go away and others could remain.

Sometimes the side effects never go away and never get any better. That's when you need to ask yourself if you can live with them, and if not, try another med.

[StaceyCeCe]

Hi Anja!

I love your name

This website has been such a blessing. Welcome!

Stacey : )

[RobinN]

Welcome Anja!
I hope you find support and info here at CWE like I have.
It is my daughter who has had seizures, but we seem to be moving into a good period with her health.