Hi Scrab, I am glad you are hear. I can only say what I would do.I am on Keppra an keppra alone just for me does not work. For 30 years of my life I felt like you.You need an add on. You can't walk around all day fealing like that. And may I suggest that you start seeing an epileptologist. They are great when you have difficult to control seizures.You have the right to feal better then you do right now.You came here and that was one really great step in the right directection.
My neuro was discussing the diff. meds with me last week. I had a seizure in his office so I really couldn't tell you what he said. Other than when I woke up, that's when he told me he is sending me to a epileptologist. So I think there is hope.
I have been trying to find my way around on this site. It is full of first hand info, which I think is the best kind.
I do have so many questions that I hope to find answers to on here.
I'm sorry every body my computer crashed. Took me a long time to get it back up. I have been on Keppra for years. And it is really good for my GTC's. I can tell if I take my meds late I don't feel as solid. I take 750mlg am and 1500 in the evening.
I personally had a very bad experience with Keppra. I was taking Keppra and Zongram together. I can't say for sure it was one or the other but when I was on it I could have killed someone without giving it a second thought. I could have driven straight off a cliff without thinking twice. When I called my neurologist about it he told me to reduce the dosage to half, which I did, then the day I went into his office I was having blackouts...he got all over me about reducing my meds. Needless to say I went of the Keppra and Zonegram and found another neurologist. So you might want to be careful when taking it in combination with another anti-seizure med
My new Neurologist is very good, I think. He told me to look up some of the anti-seizure drugs so that on my next visit I can have an intelligent conversation about changing some meds. I am trying to read through opinions about them. I need an add on to tegretol and lyrica. I have 2 teens at home so I don't need anything that makes me feel anymore out of control! What to do, what to do?
I am very nervous about this. Right now I am on 600mgs of Tegretol, last week they inicreased my dodage from 200 to 1000 and I had a tonic for the first time. I had to go to the ER. Now I am on 600mgs Teg and 1000 Keppra, and a small dosage of Ativan. I go to the dr on Tuesday, so if anyone has any suggestions Please let me know sooner than later, THANKS.
After my first seizure the doc started me on Keppra only - started at 1000 mg and boosted 500 mg at a time. Checked the EEG to see if electrical activity was reduced, which was his hope. Side effects were horrible for the first month or so, and each time we upped the dosage, but my body eventually adjusted. It was very hard. We started on the generic - awful. Once we switched to XR, things improved a great deal.
EEG continued to be abnormal at 2000 mg - doc suggested we try a different med. I did my research and knew that the theraputic range was up to to 3000 (even higher, as the survey indicates). Since my body was adjusting, and since he was going to go to Depakote next, which I didn't want to do, I suggested we go up to 3000 before we switch. At 3000 my EEG came back almost normal (a little blip when I hyperventilate). Yay Keppra! A year later I had a second seizure, and we added the Topomax (after experimenting with Depakote and I gained about 30 pounds), and so far so good.
The point about Keppra - the generic for some is difficult to handle. The XR seems to be much easier on the body from what I've read in forums. I wanted to quit the drug, but I also wanted to drive again, so I stuck it out, and the switch to XR made all the difference. As I am looking at a lifetime of meds, I consider myself lucky to have found Keppra. Yes, I have mild mood swings, and I still have my zombie moments, and adding the Topomax on top of that hasn't helped, but I'm living a normal life and I am grateful. Doesn't mean it's for everybody - just wanted to share my point of view because other people's stories have helped me get through mine.
On 3000 mg Keppra XR for about 2 years now. 200 mg Topomax for about 6 months.
I had a grand mal seizure two weeks ago. Before that my last one was in 2009. I've been on dilantin for twenty years (300 mg) until 2009 when it was increased to 450 mg. Now I have one neurologist who wants me to go to 500 mg dilantin and another who wants me off dilantin entirely and on Keppra. With dilantin there are at least blood tests to show if you're in the "golden" level but with Keppra my neurologist says there aren't tests. So how does the neurologist know how much to give and why do some sites say that Keppra is to be used in conjunction with another drug?
My Neurologist specializes in Epilepsy (makes him an Epileptologist yeah for him) says the opposite about blood levels and has checked mine. The level has more to do with the person so there is no normal for everyone but it can be checked.
I used to have many zombie moments when I took the drug every 12hrs now I vary the last dose from 13-14hrs after the first and surprisingly it has helped. A former Neuro mentioned the max dose he has ever heard of Keppra was 12000 mgs at once to get a patient out of status.
If I understand it, it takes time and tests to decide if a medication can be used alone, and Keppra is relatively new. I could be wrong though. Some websites also say Lamictal is an adjunct medication, but some say it's used alone, and a lot of people think it works just fine alone.
By the way, I was on Keppra alone until I saw my new neurologist who also wanted me on Lamictal XR. Now I'm on both (2250 mg of Keppra XR, and just moved up to 400 mg of the Lamictal).
My daughter was diagnosed with Benign Rolandic Epilepsy when she was 3 and Epilim (Sodium Valproate) 200mg twice a day was prescribed. She was fine for all this years /now she is 9/ until our neurologist decided to take her off it. We slowly reduced the dosage and on tenth day she was completely off it she experienced a grand-mal. We were admitted and after EEG and MRI showed some abnormalities in the right frontal cortex. Docs thinking that the seizures are originating in the right hemisphere.
The little girl was discharged with KEPPRA 250mg twice a day and after two weeks we increased the dose to 750mg twice daily.
Our concern is that even though she is on it for couple of weeks the tonic-clonic /blinking seizures are still happening at leas once per hour during the day and few at night time.
We are so worried and really would like to switch back to Sodium Valproate, but the neurologist not even suggest that instead he keep saying to give KEPPRA time to work, but how long does it take to start affecting the seizures? He also said that we might combined it with Tegritol.
I don't know what to do, any advice is greatly appreciated.