My neurologist didn't start me on a med after the 1st one, but now that I had a 2nd seizure 5 months later, he started me on Keppra. Has anyone else experienced this?
I am trying to understand why I had my first grand mal seizure at age 35 and the 2nd one 5mo later?
Added 7 Apr 2010:
After 5 months now of being on Keppra XR 3000mg I thought I'd be in the clear since i'm almost to that elusive 6 months seizure-free. Well, the 3rd seizure struck last week...another grand mal. No new CT, MRI, MRA, EEG, EKG tests were done. Just the labs which came out normal. I don't have my f/u neuro appt for another 10 days. But he added a 2nd drug, Trileptal. Anyone know anything about this drug and another reason for another seizure?? thanks :)
17 Nov 2009
Siezure disorders are so complicated that sometimes doctors can only guess at the cause, I did not have my first grand mal until I was 45, but thank god I did have one. They put me in the CT scan and then an MRI and found my malignant primary brain tumor. I thought the seizure would be the only one once they removed the mass, size of a golfball, but I was very wrong! I have had many more and started a siezure diary that has narrowed the triggers for me down to 3! A good place to visit is the epilepsy website, I got a lot of answers there! Good luck ans figure out your triggers and if you have a "warning" aura before they happen! Here is the link to the site
9 Dec 2009
My husband was also on Dilantin and switched. Most Doctors prefer it because it does not require bloodwork as dilantin does and it is felt that it is much better at controling seizures by most healthcare providers. It is also supposed to be a more stable course of treatment as it is generally tolerated well. Unfortunately for someone like my husband, the side effects are very pronounced. He has a lot of agitation, anxiety and personality change going on. I guess if you can tolerate it it is a good drug. I myself wish his Doctor would put him back on Dilantin. He has had as many seizures on it as he did with dilantin. Wwith the Dilantin he knew when he was going to have on, with Keppra he just hits the floor. He has seizures for a brain tumor though not grand mal seizures. Good luck.
6 Apr 2010
I think it depends on the reason you had the seizure in the first place. If you had a neuro workup and nothing was found to cause the seizure then it may have been thought to be a one time deal, stress, dehydration, anxiety, fever and some other seemingly random illnesses can cause someone to have a seizure and then that is all they ever have. Some people have one and then like you have an additional one. After that it is pretty much a routine protocal, as I understand it for you to be put on a seizure med. It is not a bad thing it is more like preventive maintenance.
With my husband, he has a brain tumor so he has had several seizures and has a physical reason to have them, then we have a friend who's daughter started having them when she was a teen. They did every kind of test possible to find the cause but they could not. Since she had more than one seizure she has been on a maintanence dose of Keppra for several years and has done very well on it. On the other hand, my husband had to be switched to Dilantin due to the side effects that he got with the Keppra. I hope this helps.
How long have you been on the Keppra and have you noticed any side effect?
1 Aug 2010
Kaihonu, I had my first seizure (a "grand mal" seizure, with an aura) when I was 17. The neurologists did a full workup, with an EEG and a CAT scan (this was almost 20 years ago) and found no abnormalities. Since they didn't find anything, they took a "wait and see" attitude; I joined the Navy with no problem and had no symptoms during my 4 years in service. When I was 24, I started having auras again (but it had been so long since my first seizure I didn't connect the auras with the possibility of having a seizure), and ended up having 2 more seizures. The first was unwitnessed and I went on as normal (I guess I was in denial)... the second, almost 6 months later, was witnessed and 911 was called and this got me under the treatment of a Neurologist, who did another full workup (finding no physical cause), and prescribed Dilantin (phenytoin). I did just fine on Dilantin for almost 8 years...
then I stopped taking it and was fine for almost another 4 years, and then I had another seizure. My neurologist did another workup and still found no physical reasons for the seizures and started me on Keppra. I had no seizures, but could only stand Keppra for about a month due to anxiety so I ended up going back on Dilantin, and I have been seizure free ever since (about 2&1/2 years). I guess my short answer is that with some seizure disorders, nobody knows what causes them. As far as I know, my Neurologists have no idea what caused my seizure disorder. Some interesting ideas I have found or heard while researching the problems include a history of head injuries/traumas when a child (which I had several of) and dietary issues; low blood sugar can cause seizures. Also, withdrawal from alcohol can cause seizures in people who have become acclimated to high alcohol doses. My feeling is that just about any neurophysiological (translated: head or brain) trauma can cause seizures when severe enough: think about your medical history and try to remember if you've had any or if anything unusual happened around the time of your seizure(s). Keep in very close contact with your neurologists about your medications; you should not have to endure horrible side effects in order to control your seizures. A good neurologist will listen to your ideas and find better medications (along with good ways to alter your dietary/life habits) for you if you are having problems with a particular meicine. Above all, best of luck.
6 Oct 2011
I had my first grand mal at the age of 38 (2008) and now I am 40 turning 41 in a couple weeks. My first seizure came out of nowhere and I said to myself, why me-why now. All the tests that were required were (eeg, mri, pet scan) came out normal. In the hospital, I was put on Keppra. I was on that for awhile, had another seizure and was put on Trileptal. Again, it was working for awhile and then another seizure and this time my neurologist upped the Trileptal too much and one night after my increased dosage I got extremely loopy, tired and fell onto a sofa table cutting my nose open. So, again she lowered the Trileptal and i was tolerating it. I recently had another grand mal (they all were) at work on September 2, this time I suffered a concussion. I met with the the neuro again and she put me on Lamictal, well that did not work because I had a reaction to the medicine-rash. So, as I stand I am now trying Depakote ER and have been on it for 8 days now.
You might never know why you are having seizures. I am puzzled, but I just live life to the fullest. You will get through it... ;)
21 Dec 2011
I truely understand what you are going threw,i was 29years old brfor I had my 1st one. And as luck would have it I had 4 befor anyone was with me id just wake normaly in floor not being able to talk or movr from pain I couldnt understand it took 11 seizures befor they decided to put me on meds for it and now Im very unsure about it it seems to make me feel different smell and taste arent the same and I would like to find out more about it I wish you luck
22 Aug 2012
Thank you everyone for sharing your experiences. I have been weaned off the Keppra completely now for the last 8 months. Still am taking the Trileptal twice a day. I have been seizure free for 28 months. The mystery and the uncertainty of if/when another seizure may/may not come still haunt me. But like all of you, try to live my life as fully as possible.
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