On keppra but just getting worse.. help

CDC funded page

Not a CDC funded Page

My partner is 41, he started getting intense feelings of dejavu late last year which worsened into goosebumps and shivers for a few seconds several times a day. After Christmas this continued and his memory started to be affected. This got gradually worse and his memory became so bad work insisted he get signed off sick, he's a teacher. He started to go back to work on light duties but his symptoms did not really improve. In June he had a generalised seizure at night and another a week later, attended hospital and saw a neurologist. They diagnosed him epileptic and starred on the lowest dose of keppra. Since starting the keppra his situation has just worsened and worsened. He has had one further generalised seizure again during sleep but now having up to 30-40 partial seizures a day, these partial seizures were not noticeable at first but now he gets a rigid arm and jerks for a few seconds.. He's had the keppra increased twice in the past month with no improvement. I'm writing this sat in the emergency department again with him after multiple partial seizures.. I'm praying the keppra will finally work with these increased doses.. does anyone else have any experience of keppra making their seizures worse? Please help

Comments

Hi ColumbiaI know tis may

Submitted by just_joe on Fri, 2018-08-24 - 17:25

Hi ColumbiaI know tis may sound strange but here goes.A person can have seizures and not know it because they last seconds. Believe me Keppra is the best medications I have used in the 50+ years I have been living and dealing with epilepsy. Seizure medications are not like aspirin where once taken it goes away after a few hours. The medication build up in your body yo the therapeutic levels the neurologists want. Those side effects listed are the ones that people might get an most go away after the body gets used to the medication and the therapeutic levels are reached. They start with low doses so they can build it to the level needed to control the seizures rather then going with a high dose and lowering it. Start low and you can gradually up. starting high is harder because you may have more medication then he needs and to much medication is just as bad as to little. In order to find out if the medication is working he needed to be on Keppra for 3 weeks so it would reach the therapeutic levels. Then at least a month to see the number of seizures he is having. If the dose is raised it would take about a week to reach the new therapeutic levels, Then counting the number of seizures again for at least a couple of weeks. By knowing that the neurologists then could adjust it up or down.That is how the neurologists can get the right doses with the right medications to control someone's seizures. Now I know you are wanting assistance and his seizures to stop. Unless it was an emergency he didn't need to the ER. The ER runs tests on all the people that come in even if those tests have nothing to do with his seizures. So to me they are a waste of time and money and cause stress that is not needed. Stress is one of the triggers for seizures. Seizures can cluster which is having them one after another in a short period of time. After a period of time they can cause the person to go into status epilepticus. If he has seizures one after another with a few minutes between them that is when you need to discuss a rescue medication which can be taken after a seizure that stops the clustering. I know this because all seizures can cluster and I was having 4-6 in 20-45 minute period of time. When I have one today I take a rescue med and the clustering stops. It took years to find medications that would control my seizures. It took more years to gain better control of my seizures. Years ago my seizures lasted about 3-5 minutes and the post ictal state (the time for the brain and body to get back to normal) lasted 15-45 minutes and at times longer. When put on Keppra the number of seizures was reduced. After being in a program to find out about a new medication I started having a couple more seizures and I went to see Doc. I thought it might have been the generic Keppra because it was a maker I did not know. I do research and Doc knows I do so we discussed the issue and he left the room for a few minutes. When he came back he said it wasn't the keppra. I had to have had a puzzled face on because he followed it with the medication you were on in the drug trial was the real med and not a placebo. So we added vimpat to the Keppra and now I have a seizure every 1-48 days that last a few seconds and even my PCP didn't know I have one in a doctors visit with him.So when you can discuss the rescue medication with his neurologist. Like I said it will take time to find the gold point. (the right medication and doses that will control his seizures) Understand that control does not necessarily mean complete seizure free. I know I will never be completely seizure free. You cant make scar tissue disappear but you can always ask questions. I always questioned Doc and he did have to find answers. I truly hope this helps and he gets seizure free or a lot better control if his seizures.Joe

Hi ColumbiaI know tis may sound strange but here goes.A person can have seizures and not know it because they last seconds. Believe me Keppra is the best medications I have used in the 50+ years I have been living and dealing with epilepsy. Seizure medications are not like aspirin where once taken it goes away after a few hours. The medication build up in your body yo the therapeutic levels the neurologists want. Those side effects listed are the ones that people might get an most go away after the body gets used to the medication and the therapeutic levels are reached. They start with low doses so they can build it to the level needed to control the seizures rather then going with a high dose and lowering it. Start low and you can gradually up.  starting high is harder because you may have more medication then he needs and to much medication is just as bad as to little. In order to find out if the medication is working he needed to be on Keppra for 3 weeks so it would reach the therapeutic levels. Then at least a month to see the number of seizures he is having. If the dose is raised it would take about a week to reach the new therapeutic levels, Then counting the number of seizures again for at least a couple of weeks. By knowing that the neurologists then could adjust it up or down.That is how the neurologists can get the right doses with the right medications to control someone's seizures. Now I know you are wanting assistance and his seizures to stop. Unless it was an emergency he didn't need to  the ER. The ER runs tests on all the people that come in even if those tests have nothing to do with his seizures. So to me they are a waste of time and money and cause stress that is not needed. Stress is one of the triggers for seizures. Seizures can cluster which is having them one after another in a short period of time. After a period of time they can cause the person to go into status epilepticus. If he has seizures one after another with a few minutes between them that is when you need to discuss a rescue medication which can be taken after a seizure that stops the clustering. I know this because all seizures can cluster and I was having 4-6 in  20-45 minute period of time. When I have one today I take a rescue med and the clustering stops. It took years to find medications that would control my seizures. It took more years to gain better control of my seizures. Years ago my seizures lasted about 3-5 minutes and the post ictal state (the time for the brain and body to get back to normal) lasted 15-45 minutes and at times longer. When put on Keppra the number of seizures was reduced. After being in a program to find out about a new medication I started having a couple more seizures and I went to see Doc. I thought it might have been the generic Keppra because it was a maker I did not know. I do research and Doc knows I do so we discussed the issue and he left the room for a few minutes. When he came back he said it wasn't the keppra. I had to have had a puzzled face on because he followed it with the medication you were on in the drug trial was the real med and not a placebo. So we added vimpat to the Keppra and now I have a seizure every 1-48 days that last a few seconds and even my PCP didn't know I have one in a doctors visit with him.So when you can discuss the rescue medication with his neurologist. Like I said it will take time to find the gold point. (the right medication and doses that will control his seizures) Understand that control does not necessarily mean complete seizure free. I know I will never be completely seizure free. You cant make scar tissue disappear but you can always ask questions. I always questioned Doc and he did have to find answers. I truly hope this helps and he gets seizure free or a lot better control if his seizures.Joe

Hi ColumbiaI know tis may sound strange but here goes.A person can have seizures and not know it because they last seconds. Believe me Keppra is the best medications I have used in the 50+ years I have been living and dealing with epilepsy. Seizure medications are not like aspirin where once taken it goes away after a few hours. The medication build up in your body yo the therapeutic levels the neurologists want. Those side effects listed are the ones that people might get an most go away after the body gets used to the medication and the therapeutic levels are reached. They start with low doses so they can build it to the level needed to control the seizures rather then going with a high dose and lowering it. Start low and you can gradually up. starting high is harder because you may have more medication then he needs and to much medication is just as bad as to little. In order to find out if the medication is working he needed to be on Keppra for 3 weeks so it would reach the therapeutic levels. Then at least a month to see the number of seizures he is having. If the dose is raised it would take about a week to reach the new therapeutic levels, Then counting the number of seizures again for at least a couple of weeks. By knowing that the neurologists then could adjust it up or down.That is how the neurologists can get the right doses with the right medications to control someone's seizures. Now I know you are wanting assistance and his seizures to stop. Unless it was an emergency he didn't need to the ER. The ER runs tests on all the people that come in even if those tests have nothing to do with his seizures. So to me they are a waste of time and money and cause stress that is not needed. Stress is one of the triggers for seizures. Seizures can cluster which is having them one after another in a short period of time. After a period of time they can cause the person to go into status epilepticus. If he has seizures one after another with a few minutes between them that is when you need to discuss a rescue medication which can be taken after a seizure that stops the clustering. I know this because all seizures can cluster and I was having 4-6 in 20-45 minute period of time. When I have one today I take a rescue med and the clustering stops. It took years to find medications that would control my seizures. It took more years to gain better control of my seizures. Years ago my seizures lasted about 3-5 minutes and the post ictal state (the time for the brain and body to get back to normal) lasted 15-45 minutes and at times longer. When put on Keppra the number of seizures was reduced. After being in a program to find out about a new medication I started having a couple more seizures and I went to see Doc. I thought it might have been the generic Keppra because it was a maker I did not know. I do research and Doc knows I do so we discussed the issue and he left the room for a few minutes. When he came back he said it wasn't the keppra. I had to have had a puzzled face on because he followed it with the medication you were on in the drug trial was the real med and not a placebo. So we added vimpat to the Keppra and now I have a seizure every 1-48 days that last a few seconds and even my PCP didn't know I have one in a doctors visit with him.So when you can discuss the rescue medication with his neurologist. Like I said it will take time to find the gold point. (the right medication and doses that will control his seizures) Understand that control does not necessarily mean complete seizure free. I know I will never be completely seizure free. You cant make scar tissue disappear but you can always ask questions. I always questioned Doc and he did have to find answers. I truly hope this helps and he gets seizure free or a lot better control if his seizures.Joe

When I tried Keppra my

Submitted by birdman on Fri, 2018-08-24 - 21:13

When I tried Keppra my seizure pattern didn't change; I only suffered increased anxiety. One medication, Gabitril, did increase the number of complex partial seizures that I had and left me very confused and suffering memory loss. Anti-seizure medicines do sometimes have the effect of increasing seizure rates. This is why I always encourage others to keep good record of medications and seizure activity; your doctor depends upon your information to make better decisions on treatment.

I hope you are fine

Submitted by jackmo120 on Wed, 2018-08-29 - 12:08

I hope you are fine

On keppra but just getting worse.. help

Comments

Hi ColumbiaI know tis may

Submitted by just_joe on Fri, 2018-08-24 - 17:25

When I tried Keppra my

Submitted by birdman on Fri, 2018-08-24 - 21:13

I hope you are fine

Submitted by jackmo120 on Wed, 2018-08-29 - 12:08

Sign Up for Emails