27 and just Diagnosed

[Katie at UMB]

Hello!
I am a 27 year old research scientist and mom to a beautiful 9 month old daughter with an amazing husband. I live in Baltimore, MD.

I was also just diagnosed with Epilepsy about 2 months ago after 2 tonic-clonic seizures within 1 week. I have had a total of 8 seizures since the first onset, though since beginning AEDs the frequency has decreased somewhat. I am currently taking Keppra (1125mg twice a day) and Ativan 1 mg as needed.

My husband has been a rock through all of this, and has shouldered much of the burden of caring for our little girl.

I find coping with the medication side effects and the seizures to be very difficult. I have tremendous post-ictal confusion that can last and last, and the Keppra makes me feel like my thoughts are wading through mud, which is tough because my career is so dependent on my ability to be sharp. Its also been difficult because the my personality has changed. I used to be laid back, go with the flow. Now I scream at my husband because he cut the chicken wrong. I hate it and I hate what I've become. I am exhausted, and I am hoping that someone will tell me it gets better. I am hoping there are stories like mine that can show me that I will become myself again, that I will be as sharp as I once was, and I won't feel like I am as much of a burden on my loved ones as I do now.

Most of all, I just need to know that there are people that know what I am going through, which is why I've reached out to this forum.

Thank you, everyone, in advance for your time. This has been very unexpected and very difficult to cope with - I don't think I'm coping very well!

<3 Katie

 

[N Sperlo]

Hey Katie,
I'm pretty new here, but not new to epilepsy. You'll find everyone is a little different, but very similar. I'm 27 as well, I think. (cant remember) I was diagnosed 11 years ago and in the last couple years have gone from 1000 mg of Keppra to 2000 mg.

It sounds like you're struggling with the side effects of the medicine right now. I've just recently learned of the rage Keppra has caused for so many. I think I read about it earlier today. There are plenty of others that have dealt with it. I work around people and would loose my job if I lost my cool, so my ability to do so is that much more important. I often times help out friends with temper problems, but when its your medicine causing it, I don't think I'd be much help there.

Any time I would have a T/C seizure, I would wake up confused. I have only had three, I think.

You'll find you are not alone. I'm tired a lot from the medicine, but I deal. You'll eventually get over that. If you have any questions about it, feel free to ask me anything.

Welcome. Everyone is really friendly and we're all here to help even if you just want to talk or laugh.

 

[Nakamova]

Hi Katie, welcome to CWE!

As NSperlo says, Keppra is known to cause moodiness and anger ("Kepprage") as a side effect. If the Keppra isn't fully controlling your seizures, and it's making you feel lousy, you should ask your neuro about trying something else. There are many different AEDs out there. In the meantime, try taking a B6 supplement -- it's known to help with Keppra's mood-related side effects.

And yes, it does get better. A good chunk of the battle with epilepsy is getting a handle on things -- what's happening to your brain, what to expect from the meds, what to ask the docs, what other things you can do to help... Information is your friend, so definitely keep asking questions. CWE members can offer a lot of anecdotal info and support, so don't hesitate to take advantage.

You may find this link particularly helpful:
http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

Best,
Nakamova

 

[Free Bird]

Hello...welcome! I know how you feel with the whole "Kepprage" thing. I had the same results with Dilantin and Phenobarbital, and it was NOT fun. I have finally found a med combo that works for me. I still have seizures, but they are nowhere NEAR as intense as they used to be! I also have a VNS, which has made a big difference too.

I've been dealing with my epilepsy since I was 18 (I'm 36 now.) It's still tough, but I know a lot more now than I did, and I keep learning new stuff as time goes on. Knowledge is power.

One thing I learned early on is to make SURE you have a good relationship with your neurologist. If you don't, try to get a new referral (if you can.) I made the mistake of accepting an idiot doctor when I was first diagnosed, and ended up wrecking my car...he misdiagnosed my partial seizures as an eye problem. If you want to change your meds, talk to him/her and see what you can do.

All the best to you and your family!