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Keppra Rage

Mon, 09/20/2010 - 20:31
I am desperately seeking advice. I am engaged and my fiance has epilepsy. We have been together 5 years, and in the past couple of years since he started taking keppra, he has drastically changed. Most of the time, he is his normal self, the person I love, but he often gets extremely irritated and freaks out, yelling and cursing, not just at me, but at other people as well. He seems to have no ability to cope with the slightest issues that would roll of most people's back without so much as a second thought. Even worse is that every so often (once a month or so) he flies into these uncontrollable rages that absolutely terrify me. We will be having a normal conversation, both in great moods, and suddenly he is kicking walls and throwing things with a blank stare like he isn't even really there. It really scares me and this never happened before the keppra. He isn't honest with his doctor about the side effects because he is too afraid to get off keppra and try something else because he thinks it will trigger seizures during the transition. Does anybody else have experience with this? If so, has anything worked? I got him to try adding B6 vitamins but it made no change. I want to get him help because I know it isn't really "him" when he goes into these fits, but I am at my wits end...Please help!

Comments

Re: Keppra Rage

Submitted by thebettles on Tue, 2010-09-21 - 02:45

Hi there,

I cannot imagine what it must be like to watch someone you love go through such a dramatic change in personality. Keppra (kepprage as it is known) is like many AED's in that in can turn our patience/anger threshold paper-thin.  I think it is reprehensible that these pills make it to the market when the manufacturers know these side effects exist. 

I have just started experiencing similar things to your fiance, having been an incredibly mellow,  peaceful and loving guy my entire life. Within a couple months I went from where almost nothing could bother me to having gotten so angry recently I have felt "possessed".

I started to ween myself off slowly (with talking to my Dr) when I started to notice my personality change- as anger seemed to take hold so much easier than ever before. It was then I DECIDED-There is no way I will ever hurt anyone around me! Nor will I hurt myself!

I am going to be very blunt right now----

If your fiance will not be honest with his doctor, you may have to be. Every time I pick up my pills I am warned to contact my doctor immediately if I experience specific side effects like he is experiencing, which I did.

I think a good analogy is SJS- a deadly side effect, it is a skin reaction/rash that can appear after taking almost any AED, like Keppra.  It is an incredibly important thing to see though because it is a clear sign that internally, organs are failing and it must be dealt with. The rash exists because we cannot see the internal failings....It is a clear indication that some type of adjustment is necessary. To pretend this side effect does not exist in order to stay on the medication is tantamount to suicide.

Anger and rage is similar- unfortunately, possible deadly as well. (sorry I am not able to sugar coat anything tonight)

SO-

His issue-   a fear of possibly having seizures during a possible transition to a new med.

Things to consider-

  • he may just need a tweek in dosage
  • if a change is needed, slowly weening off one med onto another does not necessarily lead to seizures, although it can
  • TO KNOWINGLY possibly put others and oneself in harm; to knowingly live this way without even attempting to seek other possible obvious alternatives is sign he may really benefit from therapy- I know I think talking to a unbiased pro every week is tremendously helping me, how could it not?
  • this might be important for him to research before he clings to tightly to any AED-  what if the anger and rage actually is a seizure INDUCED by the keppra---- check out this thread for many many peoples "fun" experience with keppra

http://my.epilepsy.com/node/624592

Here is my 1 cent opinion- any way you slice it, something has to change- quickly. If he is unwilling/unable to call his Dr or unwilling to look into many different types of , decide if you need to. I think he needs to understand that it could actually get much worse--is he prepared to put you through that? Are you prepared to stick around if he refuses to speak the truth to his Doctor and things get worse? I will tell you this- knowing I have a capacity for rage, i was forced to drastically find my boundaries of what I will and will not stand for. You, on the outside, will soon also be forced to find that boundary as well. There is much to be learned from all this I feel. I think you two will become more solid with much cleaner and more honest lines of communication because it is necessary to understand how and when to help .....   The mood swing may seem to come from absolutely no where, but I think what happens is that the slip through the threshold is so unbelievably subtle that it is just very very difficult to see. I think he can help you tremendously there though, to find those mini-triggers... to talk to each other about code words to remind him to cool down in the moment---couples therapy might be a smart way to go....fear is also like a side effect- it is just a sign that something needs to be dealt with. fear though, is the most debilitating emotion that can exist, it does not even matter what the fear is about,  because fear is simply a complete lack of acceptance. The inability to accept is the source of all that is out of balance. Can he accept that he may have a seizure in transition? (can he accept he may be having a seizure anyway when his mood swings into rage?)

Patience will be crucial, give him a huge huge surplus, a tremendous reservoir, so that he can fill his own reservoir back up and get back to balance. If you think about it, that is all anything is trying to do.

I wish you both the best, feel free to email.

much love,

marty

 

Hi there,

I cannot imagine what it must be like to watch someone you love go through such a dramatic change in personality. Keppra (kepprage as it is known) is like many AED's in that in can turn our patience/anger threshold paper-thin.  I think it is reprehensible that these pills make it to the market when the manufacturers know these side effects exist. 

I have just started experiencing similar things to your fiance, having been an incredibly mellow,  peaceful and loving guy my entire life. Within a couple months I went from where almost nothing could bother me to having gotten so angry recently I have felt "possessed".

I started to ween myself off slowly (with talking to my Dr) when I started to notice my personality change- as anger seemed to take hold so much easier than ever before. It was then I DECIDED-There is no way I will ever hurt anyone around me! Nor will I hurt myself!

I am going to be very blunt right now----

If your fiance will not be honest with his doctor, you may have to be. Every time I pick up my pills I am warned to contact my doctor immediately if I experience specific side effects like he is experiencing, which I did.

I think a good analogy is SJS- a deadly side effect, it is a skin reaction/rash that can appear after taking almost any AED, like Keppra.  It is an incredibly important thing to see though because it is a clear sign that internally, organs are failing and it must be dealt with. The rash exists because we cannot see the internal failings....It is a clear indication that some type of adjustment is necessary. To pretend this side effect does not exist in order to stay on the medication is tantamount to suicide.

Anger and rage is similar- unfortunately, possible deadly as well. (sorry I am not able to sugar coat anything tonight)

SO-

His issue-   a fear of possibly having seizures during a possible transition to a new med.

Things to consider-

  • he may just need a tweek in dosage
  • if a change is needed, slowly weening off one med onto another does not necessarily lead to seizures, although it can
  • TO KNOWINGLY possibly put others and oneself in harm; to knowingly live this way without even attempting to seek other possible obvious alternatives is sign he may really benefit from therapy- I know I think talking to a unbiased pro every week is tremendously helping me, how could it not?
  • this might be important for him to research before he clings to tightly to any AED-  what if the anger and rage actually is a seizure INDUCED by the keppra---- check out this thread for many many peoples "fun" experience with keppra

http://my.epilepsy.com/node/624592

Here is my 1 cent opinion- any way you slice it, something has to change- quickly. If he is unwilling/unable to call his Dr or unwilling to look into many different types of , decide if you need to. I think he needs to understand that it could actually get much worse--is he prepared to put you through that? Are you prepared to stick around if he refuses to speak the truth to his Doctor and things get worse? I will tell you this- knowing I have a capacity for rage, i was forced to drastically find my boundaries of what I will and will not stand for. You, on the outside, will soon also be forced to find that boundary as well. There is much to be learned from all this I feel. I think you two will become more solid with much cleaner and more honest lines of communication because it is necessary to understand how and when to help .....   The mood swing may seem to come from absolutely no where, but I think what happens is that the slip through the threshold is so unbelievably subtle that it is just very very difficult to see. I think he can help you tremendously there though, to find those mini-triggers... to talk to each other about code words to remind him to cool down in the moment---couples therapy might be a smart way to go....fear is also like a side effect- it is just a sign that something needs to be dealt with. fear though, is the most debilitating emotion that can exist, it does not even matter what the fear is about,  because fear is simply a complete lack of acceptance. The inability to accept is the source of all that is out of balance. Can he accept that he may have a seizure in transition? (can he accept he may be having a seizure anyway when his mood swings into rage?)

Patience will be crucial, give him a huge huge surplus, a tremendous reservoir, so that he can fill his own reservoir back up and get back to balance. If you think about it, that is all anything is trying to do.

I wish you both the best, feel free to email.

much love,

marty

 

Re: Keppra Rage

Submitted by sgh0402 on Tue, 2010-09-21 - 13:02

Marty-

Thank you so much for your response, it really helped. You mentioned what I am willing to stick around and deal with and what he is willing to put himself (and me) through...that is why I am here, trying to find some answers! As I think about my future, our future, with a wedding coming in less than a year, I am finally at the point where I know I can't live with this forever, esp. if there are children involved in the future, I don't want them to see their father like that. That being said, I'm not willing to just give up and say oh well, it is what it is and throw away everything....I have an abundance of patience (I teach inner city high school kids, it's my nature!) so that is not a problem. We talked a long time last night about making the changes and being honest with the doctor and also about other things that might help support him as he makes the changes in medicine and also to help him learn to deal with his emotions in a more effective way. He is willing to take me with him to his next doctor appt. so that I can tell the doc. exactly what effect it has on him, he is just afraid of the timing. He is in his last semester of law school and also interning for the public defender in our city and is worried about withdrawal seizures and memory loss (he tried changing to a new med earlier this year and he could barely remember to change his clothes every day). Are those really significant possibilities? If so, what helped with the memory loss? This was something that really bothered him and you mentioned it as well. He is finally realizing how horrible he behaves (he usually doesn't remember what happens or what he says) and he wants to make the change, but the right way. I'm just hoping we can get the right information and support that is needed to make this work.

Marty-

Thank you so much for your response, it really helped. You mentioned what I am willing to stick around and deal with and what he is willing to put himself (and me) through...that is why I am here, trying to find some answers! As I think about my future, our future, with a wedding coming in less than a year, I am finally at the point where I know I can't live with this forever, esp. if there are children involved in the future, I don't want them to see their father like that. That being said, I'm not willing to just give up and say oh well, it is what it is and throw away everything....I have an abundance of patience (I teach inner city high school kids, it's my nature!) so that is not a problem. We talked a long time last night about making the changes and being honest with the doctor and also about other things that might help support him as he makes the changes in medicine and also to help him learn to deal with his emotions in a more effective way. He is willing to take me with him to his next doctor appt. so that I can tell the doc. exactly what effect it has on him, he is just afraid of the timing. He is in his last semester of law school and also interning for the public defender in our city and is worried about withdrawal seizures and memory loss (he tried changing to a new med earlier this year and he could barely remember to change his clothes every day). Are those really significant possibilities? If so, what helped with the memory loss? This was something that really bothered him and you mentioned it as well. He is finally realizing how horrible he behaves (he usually doesn't remember what happens or what he says) and he wants to make the change, but the right way. I'm just hoping we can get the right information and support that is needed to make this work.

Re: Keppra Rage

Submitted by thebettles on Tue, 2010-09-21 - 18:29

I spent the most wonderful morning. I went out and collected things off the ground to create a structure- leaves and twigs and thin reeds and grasses, even a bit of "trash".

I started to tie and clasp and attach many colorful leaves to twigs, using soft reeds to spin and hold them together.  I ended up with this ridiculous "thing", this delicate and super fragile, wonderful, colorful, chaotic, "thing". About 10 small leaves on one side and one larger leaf on the other.

I decided to try to balance this nutty creation, upon the top of a curving stick that had snapped off a tree limb, so it was like trying to balance this structure on a curving tip toe of a stick. Obviously it was not going to stand on it's own without me holding on to the stick, no matter how much I tried to find the balance point. And man did I try to just let go, and have that thing just "stand"! It might stay up for a half of one second, but balance and gravity are real forces to contend with...What to do.

Without just digging a hole to "create roots", I decided to just push a bit of dirt up around all the edges of the stick, and then I could hold the structure up by holding the dirt around the base. I could feel the stick start to fall a certain direction through the base, and could just add a bit of dirt right to that specific part. Without needing to pour concrete in order to find stability, I found balance for this incredibly crazy fragile structure with feeling the base and just adding a bit here and there as needed.

It is nice to be able to have a solid foundation so that every gust of wind does not blow over our stick, precariously balancing the structure we have built.

 

analogies aside- I have found the role of a neurologist is simply to deal with side effects and to know the patient and their history as closely as possible in order to find the best med and dosages based upon side effects. Therefore if the patient is not able to communicate properly, the likelyhood of finding a correct med and dosage is decreased. you bring up incredibly important points about memory and cognitive "impairments", especially while he is, essentially, creating the roots of a career. This is exactly why he needs to be very CONFIDENT with his himself that all of this is exactly as it needs to be, and therefore will feel secure in expressing the truth so you two can go forward and find stability and balance, like I am sure you once had. Not only are there specific meds that will be less detrimental to memory, but there is much you can do to increase memory and work with a faulty memory, their are many many tricks and tips... but memory issues can also be seizure related though, too. 

(just my opinion) - My advice is, for obvious reasons, now that epilepsy has given you both such a wonderful wake up call that life is not about future plans, life is about this moment right now, I would say do not ever pour concrete around your base, or encourage another to do so (future plans are great, but is the back up plan just as good, and if not, are you holding on too tight to "plans"). Keep your hands at your base, and each others, so you can quickly and easily feel any sway before it happens, and gently correct it with a little extra support here or there.

email anytime.

Much love to you both,

marty

 

I spent the most wonderful morning. I went out and collected things off the ground to create a structure- leaves and twigs and thin reeds and grasses, even a bit of "trash".

I started to tie and clasp and attach many colorful leaves to twigs, using soft reeds to spin and hold them together.  I ended up with this ridiculous "thing", this delicate and super fragile, wonderful, colorful, chaotic, "thing". About 10 small leaves on one side and one larger leaf on the other.

I decided to try to balance this nutty creation, upon the top of a curving stick that had snapped off a tree limb, so it was like trying to balance this structure on a curving tip toe of a stick. Obviously it was not going to stand on it's own without me holding on to the stick, no matter how much I tried to find the balance point. And man did I try to just let go, and have that thing just "stand"! It might stay up for a half of one second, but balance and gravity are real forces to contend with...What to do.

Without just digging a hole to "create roots", I decided to just push a bit of dirt up around all the edges of the stick, and then I could hold the structure up by holding the dirt around the base. I could feel the stick start to fall a certain direction through the base, and could just add a bit of dirt right to that specific part. Without needing to pour concrete in order to find stability, I found balance for this incredibly crazy fragile structure with feeling the base and just adding a bit here and there as needed.

It is nice to be able to have a solid foundation so that every gust of wind does not blow over our stick, precariously balancing the structure we have built.

 

analogies aside- I have found the role of a neurologist is simply to deal with side effects and to know the patient and their history as closely as possible in order to find the best med and dosages based upon side effects. Therefore if the patient is not able to communicate properly, the likelyhood of finding a correct med and dosage is decreased. you bring up incredibly important points about memory and cognitive "impairments", especially while he is, essentially, creating the roots of a career. This is exactly why he needs to be very CONFIDENT with his himself that all of this is exactly as it needs to be, and therefore will feel secure in expressing the truth so you two can go forward and find stability and balance, like I am sure you once had. Not only are there specific meds that will be less detrimental to memory, but there is much you can do to increase memory and work with a faulty memory, their are many many tricks and tips... but memory issues can also be seizure related though, too. 

(just my opinion) - My advice is, for obvious reasons, now that epilepsy has given you both such a wonderful wake up call that life is not about future plans, life is about this moment right now, I would say do not ever pour concrete around your base, or encourage another to do so (future plans are great, but is the back up plan just as good, and if not, are you holding on too tight to "plans"). Keep your hands at your base, and each others, so you can quickly and easily feel any sway before it happens, and gently correct it with a little extra support here or there.

email anytime.

Much love to you both,

marty

 

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