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Help, advice, encouragement...I will take any or all.
Fri, 12/04/2009 - 13:25
Hey everyone...
This is my first post. I'm engaged to a wonderful man who also happens to have epilepsy. He was diagnosed at age 2 and is now 36. Never outgrew his seizures. He typically calls his seizures "blackouts".
I can't remember the type of seizures/blackouts he has but he will just kind of blank out...sometimes make a smacking sound..and say things like "yeah...ok...uh huh...over and over." They typically last about 30 seconds or so and they seem to come from nowhere.
So he has been on lamictal for years...and says his seizures were controlled for a very long time. I have no reason not to believe him.....I have only known him for about a year now though. This statement might make more sense in a bit.
Anyway...ever since I've known him he has been having seizures. Usually happens about once a month..and he has one or two a day for a few days. Then he is fine.
So he had been reading about Keppra..and recently started the switch to Keppra. The doctor had him do a slow progression...i.e. switching one pill for one...then two for two...on a 5 day progression. Hope this makes sense.
So...he seems to be having more seizures and I am extremely concerned. The other issue is NOW when he has them, he doesn't know. Before when he would have one...I would ask if he was ok and did he know what happened after it was over. ( this is what the doctor told me to do as he might not be aware that he had one and he needs to know...I am not trying to upset him.).
So now....he has NO CLUE that he is having them...and when I tell him that he has...he seems to think I am insane. I KNOW how he acts...it's the same every time..so I know I"m not crazy...he IS having them.
Anyway...I love this man. I am just so terrified every day that he is going to have one while driving. His job isn't close enough to our house to make it feasible to walk or ride a bike. When I am in town, I try to get him to let me drive him to work but with my job I travel a LOT....I am gone during the week most weeks. He has a retail job and works weird schedules.
I'm terrified....I'm stressed...I've started having anxiety attacks. I don't want anything to happen to him...I don't want him to be in a wreck and hurt someone else. We could survive financially on my salary...it would be tight...but it could be done. But at the same time...I know that as a man he would have a hard time with that.
Does anyone have experience with Keppra? Is this typical ( increase in seizures) until he gets on the full dose of Keppra? Or does the doseage need to be increased?
He goes to see the doctor monday...I am hoping that he will be honest with her so she can help him but I honestly don't know if he believes that he is still having seizures. I don't want him to drive there...and I HAVE to leave monday early for work.
I don't know what to do...I am at my wits end.
Comments
Re: Help, advice, encouragement...I will take any or all.
Submitted by seakats on Fri, 2009-12-04 - 19:11
Driving is a big no-no if he's not in control (sounds like complex partials) or "there". I can't tell you how many people I've heard from that crashed into a tree, car, pole etc. It not only can increase the problem (head injury), harm other people, or cause his death. Ask him if he wants to kill someone. The answer is "no". In some states, if you have epilepsy and aren't seizure free, they automatically take your licence. In other states, you are on an honor system (self regulated). This is for a REASON. I have partials and haven't been able to drive for 8 months. I get rides from people (ask, don't expect them to offer), and keep a regular schedule. He might consider asking for different hours so he has rides to work. I'm not trying to scare you, but I don't want you or him or others to get hurt.
If a medication isn't working for him he needs to speak up. Advocacy for yourself is very important. List everything you want to talk about before the appt. If you have questions/issues about anything, his neuro should be a resource but not the whole source of information. Make sure he's educated about his epilepsy/treatments/side effects/etc. I do so that when I see my neuro, I can help make decisions about what's right fo me.
You are doing a fabulous job of supporting him. Even asking on this forum shows that you care. Educate yourself on epilepsy. I don't mean by just asking him. That'll help but you need to go online on this site or www.epilepsyfoundation.org for starters. Google "epilepsy" and you'll find multiple sites that can give you answers. Be cautious of opinion boards that you make sure the person knows what he/she is talking about and run things past his neuro. Why don't you go with him to his appt? It'll help you get some answers and feel somewhat reassured. My husband ALWAYS comes to mine and occasionally he'll ask questions. I also have him there because there is so much information that I don't catch it all.
I hope these tips/cautions help you understand why many make these choices. Continue your love for him and take things day by day. I don't know if you believe, but it helps me to know that God's there and will help me through anything. <hugs>
Driving is a big no-no if he's not in control (sounds like complex partials) or "there". I can't tell you how many people I've heard from that crashed into a tree, car, pole etc. It not only can increase the problem (head injury), harm other people, or cause his death. Ask him if he wants to kill someone. The answer is "no". In some states, if you have epilepsy and aren't seizure free, they automatically take your licence. In other states, you are on an honor system (self regulated). This is for a REASON. I have partials and haven't been able to drive for 8 months. I get rides from people (ask, don't expect them to offer), and keep a regular schedule. He might consider asking for different hours so he has rides to work. I'm not trying to scare you, but I don't want you or him or others to get hurt.
If a medication isn't working for him he needs to speak up. Advocacy for yourself is very important. List everything you want to talk about before the appt. If you have questions/issues about anything, his neuro should be a resource but not the whole source of information. Make sure he's educated about his epilepsy/treatments/side effects/etc. I do so that when I see my neuro, I can help make decisions about what's right fo me.
You are doing a fabulous job of supporting him. Even asking on this forum shows that you care. Educate yourself on epilepsy. I don't mean by just asking him. That'll help but you need to go online on this site or www.epilepsyfoundation.org for starters. Google "epilepsy" and you'll find multiple sites that can give you answers. Be cautious of opinion boards that you make sure the person knows what he/she is talking about and run things past his neuro. Why don't you go with him to his appt? It'll help you get some answers and feel somewhat reassured. My husband ALWAYS comes to mine and occasionally he'll ask questions. I also have him there because there is so much information that I don't catch it all.
I hope these tips/cautions help you understand why many make these choices. Continue your love for him and take things day by day. I don't know if you believe, but it helps me to know that God's there and will help me through anything. <hugs>
Re: Help, advice, encouragement...I will take any or all.
Submitted by mattnsrq on Fri, 2009-12-04 - 22:09
The lady who wrote this is my fiance, so i figured id give you a little more insight on my seizure activity..This could help both her and i...
In the past year, my seizure activity has increased.. It initally started not long after they took me from 2 meds to one..I was taking Phenobarbital 150 milligrams and Lamictal 400 milligrams at the time and changed to Lamictal 500 milligrams a day and during that time also, they gave me the generic form...Im not sure if it was the generic form or the canceling of the Phenobarbital that started these issues...Since then i would have a blackout or seizure activity that would last a day or two once a month..
I went to the doctors about 4 months ago and they put me on Clonazepam with the generic version of lamictal and figured that would help. But , it didnt solve the problem...
About a month ago after doing alot of research, i requested to switch from the generic lamictal to Keppra. Every ten days i would replace a 250mg form of lamictal and replace it with a 500mg Keppra...During that month i was feeling better then i have in the past..But the day before Thanksgiving it started happening again, but now it happens frequently...But, the weird thing is i dont realize that ive had any..She just got home last night and on 3-4 different occassions she said i had another blackout...Right now im just so lost for words, ideas, thoughts etc...I have another doctors appointment on Monday, im not sure what she's going to suggest or what i want to do...Is it the Keppra, the wrong combination of medications, the dosages etc... The only thing i can think of is, i was diagnosed and treated for anti complex seizures. What if the seizure activity im having is a different form of seizure now that require a different med or meds ??
I know the changes in my income has increased my stress level, which can cause blackouts, but can it really affect my health this much ???
Another stress of mine is, im recently engaged to a women that loves and cares for me alot. Her job has her on the road 3-4 times a month. I know she is stressed alot more then she needs to be, because of my seizure activity..Just how much can any person take ?? I dont ever see her giving up, but just how much can any person take.....The thoughts or ideas of losing her bother me...
Anyways, i was wondering if anyone can relate or have any thoughts or ideas for me ??
The lady who wrote this is my fiance, so i figured id give you a little more insight on my seizure activity..This could help both her and i...
In the past year, my seizure activity has increased.. It initally started not long after they took me from 2 meds to one..I was taking Phenobarbital 150 milligrams and Lamictal 400 milligrams at the time and changed to Lamictal 500 milligrams a day and during that time also, they gave me the generic form...Im not sure if it was the generic form or the canceling of the Phenobarbital that started these issues...Since then i would have a blackout or seizure activity that would last a day or two once a month..
I went to the doctors about 4 months ago and they put me on Clonazepam with the generic version of lamictal and figured that would help. But , it didnt solve the problem...
About a month ago after doing alot of research, i requested to switch from the generic lamictal to Keppra. Every ten days i would replace a 250mg form of lamictal and replace it with a 500mg Keppra...During that month i was feeling better then i have in the past..But the day before Thanksgiving it started happening again, but now it happens frequently...But, the weird thing is i dont realize that ive had any..She just got home last night and on 3-4 different occassions she said i had another blackout...Right now im just so lost for words, ideas, thoughts etc...I have another doctors appointment on Monday, im not sure what she's going to suggest or what i want to do...Is it the Keppra, the wrong combination of medications, the dosages etc... The only thing i can think of is, i was diagnosed and treated for anti complex seizures. What if the seizure activity im having is a different form of seizure now that require a different med or meds ??
I know the changes in my income has increased my stress level, which can cause blackouts, but can it really affect my health this much ???
Another stress of mine is, im recently engaged to a women that loves and cares for me alot. Her job has her on the road 3-4 times a month. I know she is stressed alot more then she needs to be, because of my seizure activity..Just how much can any person take ?? I dont ever see her giving up, but just how much can any person take.....The thoughts or ideas of losing her bother me...
Anyways, i was wondering if anyone can relate or have any thoughts or ideas for me ??
Re: Help, advice, encouragement...I will take any or all.
Submitted by ktbgood on Fri, 2009-12-04 - 18:45
Experience with Keppra? Well, it did not work for me. But I didn't so much as experience more seizures, I just entered into a mental fog, and was extremely depressed, anxious, agoraphobic...and utterly miserable. Driving is complicated; any options of bus, taxi, or a pay-as-you-ride type van service. At least until he settles, seizure-wise, it would be useful for him to consider alternate means of transportation. I'm not so clear about complex (absence) seizures. I've had a few, some in which I am aware (in my head), and others where I am not. I think best practices on this would be to discuss openly with him, while not in a post-ictal state, your concerns...and that you are not going to lie to him about his overt presentation. Your wits end means your back is against a wall, but there will be a door right next to you; just make sure you bring your fiance with you through that door ;) Good luck to you!