Seizuring while coming off Keppra

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My partner was diagnosed with epilepsy 8 months ago after taking his first ever seizure while asleep at the age of 27. He was put on Keppra 750mg twice daily and although he went 2 months seizure free, the seizures started up again. They tried upping his dosage of keppra but to no avail, so they reduced the keppra to 500mg twice daily and added Zonisamiede as well, 150mg twice daily. He was having several side effects with Keppra so the neurologist agreed to weaning off it and recommended he do so by 250mg every 4 weeks. He is down to his last stage of 250mg once a day, but since dropping to this dosage he had 2 seizures within 3 days. Has anyone else experienced seizures while weaning off Keppra? This is all very new to us and highly frustrating as the neurologist we seen didnt seem to know a lot about it, he just keeps saying he is a challenge. We are waiting to get a second opinion but any advice/tips would be greatly appreciated.

Comments

Hi AineI've been on Keppra

Submitted by penpal59 on Sun, 2019-04-28 - 20:42

Hi AineI've been on Keppra for several years and began when I was diagnosed with depression. Until that time it was not a necessary part of my anti-convulsant medication. But when I was prescribed an additional drug to cope with my depression I became very tired and had to go on Keppra to keep me alert. Its a very powerful drug, from my experience and the side effects include a condition known as "keppra rage". Despite my best attempts to counter this with vitamin B supplements etc I still tend to have outbursts about every 4 months but now I'm more aware of the problem I'm taking additional vitamins to deal with it.I'm not surprised your husband has had a seizure on a significantly reduced dose of keppra and I'd say from my experience he still requires a small dose to eliminate his seizures.I also take Lamictal and Pheytoin for my epilepsy and those three drugs (without the former anti-depressant) control my seizures. I haven't heard many people mention Phenytoin but I've been on it for decades and its stood me in good stead all that time with minimal side effects. Lamictal seems to be quite common these days and might help your husband too. Lamictal is moderately suitable in the treatment of both epilepsy and depression which can be closely related to epilepsy.You mentioned that your husband is 27 and had his first seizure during his sleep. It sounds like he had a major seizure (tonic clonic or grand mal) and that woke you up. Do you know what type of epilepsy he has been diagnosed with?I don't know a lot about Zonisamiede but I've read that its prescribed to control "partial seizures". I take Keppra to control my "grand mal" seizures and they are generally the most difficult to treat. Its a good idea to get a second opinion at this early stage. Your partner may need to consult with his Neurologist for many years to come and its very important to find someone he is happy to visit.All the best

Thanks for your reply Jane.

Submitted by Aine413 on Mon, 2019-04-29 - 04:14

Thanks for your reply Jane. Its comforting to hear other peoples stories and know were not the only ones dealing with this. Yes your are right, his first was a tonic clonic seizure in his sleep, which the doctors initially thought was caused by a viral infection as he had flu like sympthons the week it happened. He had 2 more seizures within the following 2 weeks which is why he was diagnosed with epilepsy, but its never been defined what type. He had lumbar puncture and then an MRI, EEG and CT scans on two separate occasions, all of which came back completely clear. When I asked the neurologist why he was diagnosed with epilepsy his answer was: when you take more than one seizure its epilepsy. His initial 3 seizures where all while sleeping, then he went 2 months seizure free and when they started back up they always happen now while hes awake. Is that strange? Has anyone ever had any experience of medication being the cause of seizures? Thats our theory at the minute as were finding it difficult to understand how he got to 27 years old with no history of any health issues and out of the blue just develops epilepsy? I know were probably clutching at straws though...

Hi Aine:I can understand the

Submitted by Jazz101 on Mon, 2019-04-29 - 18:09

Hi Aine:I can understand the frustration given he was able to get to the final 250MG of Keppra and then the activity showed up. I am in the process of letting to of Keppra 1500MG daily and I was able to get as far as 250MG when I sensed an aura. As a result I took it back to 500MG the next day and I did get that ease. Sometimes depending on the medication, the level, the length of time you were on it, and sometimes just he fact that medication differs from patient to patient, at times it can be difficult to totally get rid of the medication on your first try. I knew that prior to trying so I wasn't overwhelmed when I got an aura as I got down to 250MG. A little frustrated but not surprised or annoyed.I now have two options. My neurologist, who specializes in Epilepsy, told me we can increase the Onfi, which is the medication I am using to replace the Keppra, from 10MG BID (20MG daily) to 15MG BID (30MG daily). I know that will probably do the job in allowing me to let go of the 500MG Keppra I am on but I suggested that we try to stretch out the time as we once again try to lower the 500MG. If on my second try, which I will probably start in about a month, I am able to get rid of it that would be good. But, once again, I am remaining practical that I might not be successful and if so then I will be happy to go ahead with the plan my neurologist suggested--a 10MG daily increase in the Onfi (5MG BID).Medication is always a game of trial and error because we all are different. Sometimes what works really well on one patient might not on another. Also, in terms of changing meds, well, some can be a bit more of a challenge given the level you were on. Ironically both of us were on 1500MG. As a result everyone who sets out to either trying a new medication or maybe just lowering another should remain practical that it's a "wait and see" something. In my case I have more patience because I underwent neurosurgery, a task that requires a lot of patience. After all, sometimes we can be successful in one area but see a set back, as I did prior to surgery. We were successful in locating the focal areas associated with the seizures but then realized that three had failed the surgery approval test because the results weren't clear given they were so close to language and speech. But our pick up from there was to repeat the language mapping test, except during surgery, where the neurosurgeon could see and touch those three areas as I was answering questions. From there we were able to approve 2.5 of those three areas that failed the initial test and we went ahead and removed the 2.5 and the other areas that had passed the initial test.The point is this. Sure it has to be annoying as you get close to actually accomplishing something you had hoped you could given how far you got. But when that happens the best move is to look into your remaining options. In my case, in terms of letting to of the 500MG of Keppra, I might have to increase the Onfi from 20MG daily to 30MG daily. But the reason I chose not to do so immediately goes back to how my neurosurgeon approached surgery, and that is, don't make decisions in a hurry. My neurosurgeon didn't when those 3 areas looked uncertain relative to surgery. We simply sifted through the remaining options and then picked up from there.Speak with the neurologist about where to go from here. My guess is he or she will suggest an increase in the Zonisamiede to further lower the Keppra. If so, take a note of the level of Zonisamiede your partner is currently on and when you speak with your neurologist (hopefully he or she knows a lot about meds) find out what level of that medication is considered high. Then compare that to what your partner is currently one. That was approach when my neurologist suggested raising the Onfi to try to let go of the remaining 500MG Keppra. I was told 60MG in Onfi is high. That said, some patients do go that far. In my case I am trying to make sure I am not going too high if/when we increase the Onfi. As a result going from my current 20MG to 30MG daily is something I will be open to doing if the second try to lowering the 500MG while on my current 20MG daily doesn't work out. After all, 30MG is half of what is considered high. If you aren't comfortable with your neurologist because he or she might not know much about medication, then feel free to find another who does. Choosing a neurologist for Epilepsy involves finding one who specializes in Epilepsy. And a great source for that is US News and World Report. Here is the link to hospitals with good ratings in neurology and neurosurgery. And upon sifting through the names at a particular hospital, make sure he or she specializes in Epilepsy.https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgery

Hi Aine:I can understand the frustration given he was able to get to the final 250MG of Keppra and then the activity showed up. I am in the process of letting to of Keppra 1500MG daily and I was able to get as far as 250MG when I sensed an aura. As a result I took it back to 500MG the next day and I did get that ease. Sometimes depending on the medication, the level, the length of time you were on it, and sometimes just he fact that medication differs from patient to patient, at times it can be difficult to totally get rid of the medication on your first try. I knew that prior to trying so I wasn't overwhelmed when I got an aura as I got down to 250MG. A little frustrated but not surprised or annoyed.I now have two options. My neurologist, who specializes in Epilepsy, told me we can increase the Onfi, which is the medication I am using to replace the Keppra, from 10MG BID (20MG daily) to 15MG BID (30MG daily). I know that will probably do the job in allowing me to let go of the 500MG Keppra I am on but I suggested that we try to stretch out the time as we once again try to lower the 500MG. If on my second try, which I will probably start in about a month, I am able to get rid of it that would be good. But, once again, I am remaining practical that I might not be successful and if so then I will be happy to go ahead with the plan my neurologist suggested--a 10MG daily increase in the Onfi (5MG BID).Medication is always a game of trial and error because we all are different. Sometimes what works really well on one patient might not on another. Also, in terms of changing meds, well, some can be a bit more of a challenge given the level you were on. Ironically both of us were on 1500MG. As a result everyone who sets out to either trying a new medication or maybe just lowering another should remain practical that it's a "wait and see" something. In my case I have more patience because I underwent neurosurgery, a task that requires a lot of patience. After all, sometimes we can be successful in one area but see a set back, as I did prior to surgery. We were successful in locating the focal areas associated with the seizures but then realized that three had failed the surgery approval test because the results weren't clear given they were so close to language and speech. But our pick up from there was to repeat the language mapping test, except during surgery, where the neurosurgeon could see and touch those three areas as I was answering questions. From there we were able to approve 2.5 of those three areas that failed the initial test and we went ahead and removed the 2.5 and the other areas that had passed the initial test.The point is this. Sure it has to be annoying as you get close to actually accomplishing something you had hoped you could given how far you got. But when that happens the best move is to look into your remaining options. In my case, in terms of letting to of the 500MG of Keppra, I might have to increase the Onfi from 20MG daily to 30MG daily. But the reason I chose not to do so immediately goes back to how my neurosurgeon approached surgery, and that is, don't make decisions in a hurry. My neurosurgeon didn't when those 3 areas looked uncertain relative to surgery. We simply sifted through the remaining options and then picked up from there.Speak with the neurologist about where to go from here. My guess is he or she will suggest an increase in the  Zonisamiede to further lower the Keppra. If so, take a note of the level of  Zonisamiede your partner is currently on and when you speak with your neurologist (hopefully he or she knows a lot about meds) find out what level of that medication is considered high. Then compare that to what your partner is currently one. That was approach when my neurologist suggested raising the Onfi to try to let go of the remaining 500MG Keppra. I was told 60MG in Onfi is high. That said, some patients do go that far. In my case I am trying to make sure I am not going too high if/when we increase the Onfi. As a result going from my current 20MG to 30MG daily is something I will be open to doing if the second try to lowering the 500MG while on my current 20MG daily doesn't work out. After all, 30MG is half of what is considered high. If you aren't comfortable with your neurologist because he or she might not know much about medication, then feel free to find another who does. Choosing a neurologist for Epilepsy involves finding one who specializes in Epilepsy. And a great source for that is US News and World Report. Here is the link to hospitals with good ratings in neurology and neurosurgery. And upon sifting through the names at a particular hospital, make sure he or she specializes in Epilepsy.https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgery

Hi Aine:I can understand the frustration given he was able to get to the final 250MG of Keppra and then the activity showed up. I am in the process of letting to of Keppra 1500MG daily and I was able to get as far as 250MG when I sensed an aura. As a result I took it back to 500MG the next day and I did get that ease. Sometimes depending on the medication, the level, the length of time you were on it, and sometimes just he fact that medication differs from patient to patient, at times it can be difficult to totally get rid of the medication on your first try. I knew that prior to trying so I wasn't overwhelmed when I got an aura as I got down to 250MG. A little frustrated but not surprised or annoyed.I now have two options. My neurologist, who specializes in Epilepsy, told me we can increase the Onfi, which is the medication I am using to replace the Keppra, from 10MG BID (20MG daily) to 15MG BID (30MG daily). I know that will probably do the job in allowing me to let go of the 500MG Keppra I am on but I suggested that we try to stretch out the time as we once again try to lower the 500MG. If on my second try, which I will probably start in about a month, I am able to get rid of it that would be good. But, once again, I am remaining practical that I might not be successful and if so then I will be happy to go ahead with the plan my neurologist suggested--a 10MG daily increase in the Onfi (5MG BID).Medication is always a game of trial and error because we all are different. Sometimes what works really well on one patient might not on another. Also, in terms of changing meds, well, some can be a bit more of a challenge given the level you were on. Ironically both of us were on 1500MG. As a result everyone who sets out to either trying a new medication or maybe just lowering another should remain practical that it's a "wait and see" something. In my case I have more patience because I underwent neurosurgery, a task that requires a lot of patience. After all, sometimes we can be successful in one area but see a set back, as I did prior to surgery. We were successful in locating the focal areas associated with the seizures but then realized that three had failed the surgery approval test because the results weren't clear given they were so close to language and speech. But our pick up from there was to repeat the language mapping test, except during surgery, where the neurosurgeon could see and touch those three areas as I was answering questions. From there we were able to approve 2.5 of those three areas that failed the initial test and we went ahead and removed the 2.5 and the other areas that had passed the initial test.The point is this. Sure it has to be annoying as you get close to actually accomplishing something you had hoped you could given how far you got. But when that happens the best move is to look into your remaining options. In my case, in terms of letting to of the 500MG of Keppra, I might have to increase the Onfi from 20MG daily to 30MG daily. But the reason I chose not to do so immediately goes back to how my neurosurgeon approached surgery, and that is, don't make decisions in a hurry. My neurosurgeon didn't when those 3 areas looked uncertain relative to surgery. We simply sifted through the remaining options and then picked up from there.Speak with the neurologist about where to go from here. My guess is he or she will suggest an increase in the Zonisamiede to further lower the Keppra. If so, take a note of the level of Zonisamiede your partner is currently on and when you speak with your neurologist (hopefully he or she knows a lot about meds) find out what level of that medication is considered high. Then compare that to what your partner is currently one. That was approach when my neurologist suggested raising the Onfi to try to let go of the remaining 500MG Keppra. I was told 60MG in Onfi is high. That said, some patients do go that far. In my case I am trying to make sure I am not going too high if/when we increase the Onfi. As a result going from my current 20MG to 30MG daily is something I will be open to doing if the second try to lowering the 500MG while on my current 20MG daily doesn't work out. After all, 30MG is half of what is considered high. If you aren't comfortable with your neurologist because he or she might not know much about medication, then feel free to find another who does. Choosing a neurologist for Epilepsy involves finding one who specializes in Epilepsy. And a great source for that is US News and World Report. Here is the link to hospitals with good ratings in neurology and neurosurgery. And upon sifting through the names at a particular hospital, make sure he or she specializes in Epilepsy.https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgery