AJR
08-25-2003, 03:03 PM
I took Carbatrol for a few years and no seizures, then I had a few breakthrough partials. My neuro upped my dosage and switched me to Trileptal. The partials still came, and then this past weekend I had a Grand Mal. Those suck. I haven't had one in a while, and I didn't like it one bit. I feel for anyone for whom this is a regular thing because I was useless the entire next day.
Anyway, he is keeping me on Trileptal and adding Keppra. I read the info on Keppra, but it didn't tell me much. From what I can tell it does its work in the brain, and it does not seem to have drastic side-effects. The Carbatrol/Trileptal weren't much of a problem. I was a bit tired at first, but then I got used to it. Does anyone have some opinions? Any help would be appreciated...
Also, he mentioned that surgery was becoming more common. Now, I thought that was a last resort option, and saved only for folks who had no other options. He, however, said that it is now very routine even for folks such as myself. Of course, if he suggests it I would get a second opinion from another neuro, but I wanted to see what the general opinion was here...
Thanks
Anyway, he is keeping me on Trileptal and adding Keppra. I read the info on Keppra, but it didn't tell me much. From what I can tell it does its work in the brain, and it does not seem to have drastic side-effects. The Carbatrol/Trileptal weren't much of a problem. I was a bit tired at first, but then I got used to it. Does anyone have some opinions? Any help would be appreciated...
Also, he mentioned that surgery was becoming more common. Now, I thought that was a last resort option, and saved only for folks who had no other options. He, however, said that it is now very routine even for folks such as myself. Of course, if he suggests it I would get a second opinion from another neuro, but I wanted to see what the general opinion was here...
Thanks
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jsal
08-25-2003, 03:15 PM
AJR,
My6 year old daughter has been on trileptal for a year now. She continued to have seizures so they added keppra. She still had them. We were told that keppra works best in smaller doses. She started to have more seizures the more we gave her. Also her behaviors were totally out of control. They said that behaviors were the most common side effect of keppra. Trileptal we had no problems.Now we added lamictal and are slowly getting her off the keppra. Hope I helped a little. Who knows it may work differently for you.
jsal :)
My6 year old daughter has been on trileptal for a year now. She continued to have seizures so they added keppra. She still had them. We were told that keppra works best in smaller doses. She started to have more seizures the more we gave her. Also her behaviors were totally out of control. They said that behaviors were the most common side effect of keppra. Trileptal we had no problems.Now we added lamictal and are slowly getting her off the keppra. Hope I helped a little. Who knows it may work differently for you.
jsal :)
Tigre
08-25-2003, 05:12 PM
Im on 2000mg a day of keppra for partial complex seizures do to head trauma. I feel that it has worked better than the other drug they had me on first (topamax) but as for the behavioral side effects that ive heard about...well i dont know. I have PTSD from the accident and i dont know if my depression/anxiety/panic attacks are from the PTSD or the keppra now that ive reaed some posts or maybe both combined. Good luck to you and hope that you find the right combo. I also have a question that ive been hesitant to ask. Can partial complex seizures spread and become worse...for instance if not controlled totally by the keppra can they lead to grand mal or something else? Thanks and hope you feel better.
Grumps
08-25-2003, 05:16 PM
I am also on 2000mg of Keppra a day and have been taking them since June this year - has turned my life around, szr free for the first time in 15 years.
Apart from needing a bit more sleep and yes I have had a few mood swings but nothing drastic. Keppra has given me back my life and independance.
A wonder drug as far as I am concerned
Hope it works well for you too.......
Apart from needing a bit more sleep and yes I have had a few mood swings but nothing drastic. Keppra has given me back my life and independance.
A wonder drug as far as I am concerned
Hope it works well for you too.......
kaymad41
08-26-2003, 09:43 AM
Tigre, to answer your question, yes complex partials if not controlled can lead to grand mals. I'm the poster child for this. When I first started having complex-partials I chose not to go on meds because I knew, I just KNEW they'd go away. It's called kindling..seizures open new pathways in the brain leading to more and different types of seizures if not controlled. The seizures did stop for a while and than I had a status grand mal...something that would never have happened if I'd just taken my medication!
I was on dilantin for two years, the side-effects were awful. I'm on Keppra now and it works pretty well, but I do have more of a temper.
I was on dilantin for two years, the side-effects were awful. I'm on Keppra now and it works pretty well, but I do have more of a temper.
KittyMom
08-26-2003, 12:42 PM
Kaymad41,
That is funny!! I finally get to meet the person who was on that "poster" with me. I too am the poster child for the spreading of seizures. I didn't ever go to my doc to find out what this all was that was happening to me. I thought that what I was going thru was so bizzar that I would get laughed out of the doctors office or they would lock me up in the padded room. I thought seizures and epilepsy was only gran mals. I was dumb and wrong. I should have known because I had an Aunt with epilepsy but I only knew of her gran mals and not the others. Hmmmmm.
Anyway, I am on 2400mg of Neurontin and it is doing nothing for my CPS or my SPS but I had 2 gran mals in one day while off my meds and in the hospital for a VEEG. The Neurontin is controling my gran mals that I didn't know I had but nothing else. Keppra made me EVIL and Tegretal made me very very moody. Keep in mind that I have a very low tollerence for meds and nothing works like it should with me. I am slightly off. I am now being told that I should consider the VNS...NO WAY!! Too scarry for me but that may be my only option due to my low tollerence for meds.
I hope you have a better time with these meds. I am considering trying the Tegretal (generic)because I see that more people are having a better time with it and no one told me to take vitamins with it. I am going to discuss this with my doc.
Anyway, prayers are going your way that this all works for the best for you.
God Bless and Welcome to this fabulace board! Great People Here!!
KittyMom
------------------
Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!
That is funny!! I finally get to meet the person who was on that "poster" with me. I too am the poster child for the spreading of seizures. I didn't ever go to my doc to find out what this all was that was happening to me. I thought that what I was going thru was so bizzar that I would get laughed out of the doctors office or they would lock me up in the padded room. I thought seizures and epilepsy was only gran mals. I was dumb and wrong. I should have known because I had an Aunt with epilepsy but I only knew of her gran mals and not the others. Hmmmmm.
Anyway, I am on 2400mg of Neurontin and it is doing nothing for my CPS or my SPS but I had 2 gran mals in one day while off my meds and in the hospital for a VEEG. The Neurontin is controling my gran mals that I didn't know I had but nothing else. Keppra made me EVIL and Tegretal made me very very moody. Keep in mind that I have a very low tollerence for meds and nothing works like it should with me. I am slightly off. I am now being told that I should consider the VNS...NO WAY!! Too scarry for me but that may be my only option due to my low tollerence for meds.
I hope you have a better time with these meds. I am considering trying the Tegretal (generic)because I see that more people are having a better time with it and no one told me to take vitamins with it. I am going to discuss this with my doc.
Anyway, prayers are going your way that this all works for the best for you.
God Bless and Welcome to this fabulace board! Great People Here!!
KittyMom
------------------
Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!
Tigre
08-27-2003, 11:18 AM
Thanks for your reply,
It kinda scares me a touch to learn that though. I tend to forget my morning meds most days....by the time i remember its almost time to take them again so technically most days i only get half dose. I also am under the "impression" that they will go away. I guess a form of denial that i even have them. I continuously think that the eeg was wrong and what im experiencing is from the ptsd or depression...i "space" out and kinda become immobalized and as im staring the light goes like...bright to dark and then darker like your eyes adjust and then it gets darker then they adjust and it gets darker...i hope that made sense. I used to have tremors with them and shakes and that skin crawling feeling...like there were bugs all over me. Now its more of that spacy thing and the "crawling" is mainly limited to my scalp and finger tips. But then i find excuses for that too...like well ive been sweating(the scalp crawls) or its my carpral tunnel syndrome (fingertip numbing) I also have the worst memory and temper flares as well but docs dont think its my meds (keppra) its the PTSD. I am so confused. Thanks though for tellng me that they can spread, maybe that will also in a round about way help me to remember to take my meds as i should because i dont want another diagnosis...it seems everytime i go to a doc i get another diagnosis of something else wrong. Head injuries can cause more than i ever imagined. I got knocked on the head and needed 4 staples to close the wound and silly me, i thought that once that healed id be ok....was i ever wrong.
Take care and thanks!
It kinda scares me a touch to learn that though. I tend to forget my morning meds most days....by the time i remember its almost time to take them again so technically most days i only get half dose. I also am under the "impression" that they will go away. I guess a form of denial that i even have them. I continuously think that the eeg was wrong and what im experiencing is from the ptsd or depression...i "space" out and kinda become immobalized and as im staring the light goes like...bright to dark and then darker like your eyes adjust and then it gets darker then they adjust and it gets darker...i hope that made sense. I used to have tremors with them and shakes and that skin crawling feeling...like there were bugs all over me. Now its more of that spacy thing and the "crawling" is mainly limited to my scalp and finger tips. But then i find excuses for that too...like well ive been sweating(the scalp crawls) or its my carpral tunnel syndrome (fingertip numbing) I also have the worst memory and temper flares as well but docs dont think its my meds (keppra) its the PTSD. I am so confused. Thanks though for tellng me that they can spread, maybe that will also in a round about way help me to remember to take my meds as i should because i dont want another diagnosis...it seems everytime i go to a doc i get another diagnosis of something else wrong. Head injuries can cause more than i ever imagined. I got knocked on the head and needed 4 staples to close the wound and silly me, i thought that once that healed id be ok....was i ever wrong.
Take care and thanks!