New to this site (and to epilepsy)

[cmtassone]

Hi, my name is Mary. My son has been diagnosed with temporal lobe epilepsy one year ago. So far we have tried Trileptal (severe allergic reaction), Depakode and Keppra. We had to stop Keppra due to side effects and he is stil on Depakode but it is not working anymore. In the mean time his epilepsy has become worst,he can barely function, is not able to attend school and he is always very tired. A short EEG showed continous epileptic activity while he was asleep, which could be why he is always tired. He also has 4-5 seizures a day, he will stare in the empty space, freeze and not understand where he is when he gets out, very confused and scared. He is going to start on Vimpat now, has anyone experience with that? Also, has anyone any experience on testing on a possible autoimmune disorder as the cause of epilepsy? It seems that this a new research field (10 yrs or so) but quite promising for those forms that seem to come from no where (clean MRI).
I am looking forward to any of your comments, it can be quite lonely to care for somebody with epilepsy and not completely easy to find the needed support.

 

[jyearta]

Hi, and welcome to CWE.

I too have temporal Lobe E.

I'm 60 years Female, I have seen many Neur. and had many EEG, MRi over the years. It was not until I went to see a Epileptologist at Emory that the cause was found. It was something (I don't remember) on the right side of my brain.

I was 1st. put on dilantin and phoenb. back in 1971, and since been on about all the medications thats out there. Keppra was the worse meds. for me, that was giving to me by the epileptologist at Emory and she would NOT take me off, when I complained of the side effects. I found another Neur.

I'm now back on dilantin and my neur. added 1/2 of clonazepam 0.5 mg that I take every 4 hours (around the clock) except at 10:00PM I take a whole tablet. This meds is habit forming, which I did not know when I was put on it. Having said that this combo has my seizures under control more than many meds I tried in years past.

I would encourage to go into all the differ. forums.

I didn't join the forum until July of last year, and I can tell you I have learned more here that at any Dr. visit. The people here are great in that they share what they have gone through, They will listen when you feel you are all alone in this battle, but here at CWE you are never alone.

I pray that you will get some answers for yourself and for your son.

 

[DadofTwins]

Welcome to CWE

Hi,

Has your neuro given you any advice? If not, you may want to look for another doctor. I know how you feel, as my child has recently started with seizures and has been diagnosed with idiopathic epilepsy. I am always looking for descriptions of experiences and knowledge of meds. You are in a safe place with many smart and experienced members. Feel free to ask questions and yell when necessary.

Good luck as you seek to help your child,

Tom

 

[Nakamova]

Hi Mary, welcome to CWE!

I hope Vimpat does the trick for your son. You can read member comments about it here:
http://www.coping-with-epilepsy.com/forums/f23/vimpat-fyi-13093/
http://www.coping-with-epilepsy.com/forums/f36/vimpat-new-aed-has-anybody-else-tried-6894/
http://www.coping-with-epilepsy.com/forums/f20/looking-info-vimpat-12613/
http://www.coping-with-epilepsy.com/forums/f23/has-anyone-else-taken-vimpat-urgh-9720/

If it doesn't help, you might want to consider a dietary approach such as the Modified Atkins Diet. It has shown success in treating seizures, particularly absence seizures. More info here: http://www.atkinsforseizures.com/

I hope you feel free to post questions and ask for help -- CWE is a great resource for answers, empathy, and support.

Best,
Nakamova