Newly diagnosed & prescribed Keppra, need advice

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khansen

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Hello all,
I am a 39 year old man that was diagnosed with simple partial seizures about 3 weeks ago. I was started on Keppra (well, actually the generic version) about 4 days later. My first seizure that I can remember was about 7 years back. Since was just in one limb and didnt last but a few seconds I didnt think much of it. Then as years went by they got a little more frequent and would get more severe. Since I am in the military and a stubborn male I was in denial for about a year. After having a full body seizure while operating a power saw 3 weeks ago (and almost cutting off my hand) I listened to my Doc and saw a neurologist.

I have tried to read up a little on epilepsy and Keppra. ALthough Keppra seems relatively safe, the side effects I have are more than frustrating. I am tired all the time, some days can barely stay awake. I find myself intensly irritable, short tempered, moody and my memory now sucks...to say the least. I have mood swings, watching my toddler boy jump around the garage pretending to be a frog brought me to tears. Then 2 hours later my wife states that the house is cold and I almost bite her head off. Please tell me that this will go away. The side effects have seemed to get worse with each day.

I have only been married now for 5 years, I have a 2 year old and a 3 month old baby. I dont know how I can find patience for my kids when I can barely stand being around myself. Is this typical? Dont get me wrong, I am not complaigning. I know I have a milder form of epilepsy. I have read what some of you live with and you have my complete admiration for handling what you do. Any advice, suggestions and words of wisdom would be greatly appreciated.
 
Khansen,

Welcome to CWE. I'm sorry that you are going through all this. The time after I was first diagnosed was a really hard and confusing time for me. The people in this forum supported and educated me, and carried me through it all. So this is a great place to be.

You had a whole body seizure? Were you conscious? I'm thinking you must have been if you were diagnosed with simple partials. It must have been so scary for you seeing your body do that with a saw blade inches away.

I was on Keppra for a few months, but then taken off due to side effects. I'm trying to remember why I was taken off Keppra, and I think it was because of an allergic reaction. But I also had mood swings of being really pissed off alternating with crying. I also had my "off" button turned permanently "on." I ate too much, spent too much, talked too much, had extreme emotions too much, slept too much, and pretty much did everything ay wtoo much. I just couldn't stop. Life was one big sleepy pissed off spree. All of that is definitely not like the normal me.

Most people try more than one drug before they find one that has that magic mix of seizure control and tolerable side effects. I've tried about 4 (Keppra, Topamax, Trileptal, neurontin). Now I HOPE I'm finally settled down on Lamictal. That would make Lamictal my 5th. And I hope the one I stick with.

Sometimes side effects even out over a few months as your body gets used to them, sometimes they don't. And everybody has a different reaction to each drug. Everybody is different.

If your side effects are so bad you don't think you can function with them, or if you aren't willing to live with them, call your neurologist. He'll switch you to a different medication. (Welcome to the medication-merry-go-round)

Epilepsy.com is a great resource. Here's a link to a list of anti-seizure meds. Just click on the one you want to know more about: http://www.epilepsy.com/EPILEPSY/SEIZURE_MEDICINES

I know all this is hard, but take heart. Things get better eventually. The majority of people find a drug that is right for them and they are seizure free for life.
 
Oh! I forgot! There are lots of people here in the forum that are in the military. Use the search function at the top right hand side of the page. Click on the "search" and you can type in one or more keywords. Search for "military". You'll find lots of strings you may find interesting, and meet lots of fellow soldiers.
 
Hi Khansen
My name is Alan i too am on Keppra/Levitiracetam and I experience the tiredness and mood swings, I went to my Dr and he perscribed me a small dosage of antidepressants which to be honest do appear to help but the only downside is I become even more tired so it's a bit of a win/lose situation. I used to be so laid back but they really do alter my moods but they also cut my seizures so i take the positives that way from it
 
Hi Khansen --

Some of the folks experiencing mood swings and "kepprage" on keppra have found that taking B6 as part of a BComplex vitamin has helped. You might want to ask your doctor about adding that supplement.
 
Get off Keppra ASAP

IMO
I would strongly suggest getting of Keppra ASAP. Those mood swings will strongly affect your marriage and from my experience all your relationships.
I was snapping at almost everyone over the simplest things and sometimes screaming at people. Also I found it not to work for my seizures but everyone is different. The doc told me its the number one drug for seizures in the world but who cares if no one wants to be around you and eveyrone is walking on eggshells when they talk to you. I was about your age when I got off of it and I switched over to Lamictal and I was a different man. I was in the Navy way back what branch are you in?

Good Luck
 
To Endless: Yes, it was quit scary. I was seeing it happen and couldnt do much about it except lean my body weight into the saw to push it away. I do believe I am very fortunate to only have simpple partials, cant imagine what it must feel like to wake up in a hospital not knowing what happened like some folks describe. Thanks for the advice, I think I will give it a little more time to see if the side effects wear off some. It sounds like this may be my first ride on the medication merry go round. And thanks for the search tip.
 
To Nakamova,
Thanks for the suggestions on the B6, I will definately look into that.
 
To Faith in Christ,
I am currently in the Air Force. Well the Air National Guard to be more precise. I was once aircraft maintenance and operations and after the last BRAC took away our planes I learned how to maintain computer networks. Had to work today and of course just found out this morning that I have 4 months left. It appears that seizures are not waiverable (big shocker there), even for the guard. :-)
 
Hi, sorry to hear about your seizures but the I think the good news is that you will find this board to be an incredible resource. I am 41 and have had epilepsy since I was about 9 or 10. I've been on a lot of different meds over the years and the latest is Keppra (generic). I've been on that med for nearly 2 years now and I am very pleased. Getting over the side effects is a chore, but that seems to be the case for every med i've been on. The good news is that I've found keppra to control my seizures effectively and once I was able to find the right dose and get into a routine I was able to minimize the side effects and I've had most that are listed on the manufacturers website. Keppra rage is common and it took my about 8 months to find the right dosage and routine. I went from 500mg to 3000mg then found the right balance was 2000mg. I also found that the rage seems to happen when the dosage amt in your blood stream fluctuates so I take it at the same time every day, 9am and 9pm (1000mg each time). I also make sure to have a small piece of food when I do that and it seems to help immensely.

My wife learned that when I did get short tempered she would give me a calming hg that seemed to help a ton or I would learn to go to a quiet corner of the house for about 20 minutes. Either way I would suggest building a routine you can get comfortable with.

I hope this helps, as I have found the struggle to get over the side effects well worth it and that they diminish over time and I've been able to resume a normal life.

Good luck and dont hesitate to ask questions and get advice on this board.
 
khansen said:
Hello all,
I am a 39 year old man that was diagnosed with simple partial seizures about 3 weeks ago. I was started on Keppra (well, actually the generic version) about 4 days later. My first seizure that I can remember was about 7 years back. Since was just in one limb and didnt last but a few seconds I didnt think much of it. Then as years went by they got a little more frequent and would get more severe. Since I am in the military and a stubborn male I was in denial for about a year. After having a full body seizure while operating a power saw 3 weeks ago (and almost cutting off my hand) I listened to my Doc and saw a neurologist.

I have tried to read up a little on epilepsy and Keppra. ALthough Keppra seems relatively safe, the side effects I have are more than frustrating. I am tired all the time, some days can barely stay awake. I find myself intensly irritable, short tempered, moody and my memory now sucks...to say the least. I have mood swings, watching my toddler boy jump around the garage pretending to be a frog brought me to tears. Then 2 hours later my wife states that the house is cold and I almost bite her head off. Please tell me that this will go away. The side effects have seemed to get worse with each day.

I have only been married now for 5 years, I have a 2 year old and a 3 month old baby. I dont know how I can find patience for my kids when I can barely stand being around myself. Is this typical? Dont get me wrong, I am not complaigning. I know I have a milder form of epilepsy. I have read what some of you live with and you have my complete admiration for handling what you do. Any advice, suggestions and words of wisdom would be greatly appreciated.
Click to expand...
The tears are rolling down my face as I read the experiences of others on this forum. Still getting used to the epilepsy...getting over the aneurysm coiling and dealing with Keppra and all that brings. I am ashamed to say that I thought I was the only one who felt like this. I am not doing well right now emotionally. I seem to have lost my mojo a bit!!
 
Stevoxray, hang in there my friend, I too have recently been diagnosed and it is tough. I was recently put on Keppra and have the bad mood all the time. I am going tonight to get vitamin B6 based on other postings I have seen on here. It is tough when you are our age and get diagnosed; most drs act like you have had this your entire life and forget to explain things to you or you are so shocked and don't know what to ask for Dr's. The latter is my issue. I had the tears Thursday rolling down the face when I came upon this site and it settled me down quite a bit.

I will be thinking of you.
 
Thanks for the kind words Bergoomay. i too will speak to my Doc about B6. He has been brilliant i have to say though. A very supportive guy who suggested that this might happen to me with this Keppra drug. I thought I was gonna be one of the lucky ones who didn't get any side effects but no such luck. Thanks again my friend.
 
Hi khansen. I too have partial seizures, and have been taking keppra for 3 years now. When I first began taking keppra, I suffered the same side effects--specifically, exhaustion and irritability. My neurologist switched me from keppra to keppra xr, and this seemed to change things. In general though, medications take up to a few weeks to get up to a comfortable level in your system, so you tend to feel the side effects for weeks or even months (as terrible as that sounds) before they start to go away. If the side effects you're experiencing continue for the next week or two, I'd suggest talking to your doctor about switching medicines.
 
hi,

i also started keppra about 2 months ago now. i dont get mood swings but i am more tired than normal. i heard, though, that your body needs time to adjust to it.. so perhaps give it some time. i have a friend who is also on keppra and really likes the rx. and trying b vitamins is always a possibility.
 
Keppra Rage

I just went through this same exact thing with my boyfriend! I really hope you follow my advice and try something new...just so you can know for sure whether it's the keppra or not. He is also a former military man, in his 30's, and recently diagnosed. The first medication they tried him on was Keppra because they said it was a "nice" drug with lesser side affects and works well for people in his age range. He was on Keppra for 3 months before he switched to Tegratol and that 3 months was absolute hell for both him and I.

He was completely miserable, irritable, and would fly off the handle for no reason and would have outlandish mood swings that weren't fitting for the situation. We weren't sure if it was the keppra or just coping with the difficulty of being diagnosed and knowing that he would have to be medicated forever and deal with the epilepsy, so we gave it time on the keppra to see if the symptoms would pass but they seemed to just get worse and worse. He was so hesitant to come off of it because like most people he didn't want to start all over and the keppra was working to stop the seizures, and he just thought he was crazy.

Things were getting so out of control that when we discussed with his neurologist all of the things he was going through, his doc was like okay the keppra is not for you, everything your saying sounds like a side effect let's just try tegratol and see if coming off the keppra makes a difference.

And what a difference it made!!! I feel like I have my boyfriend back! He still gets down or irritable sometimes but that's just normal stuff that we all deal with from day to day. All of the extreme moodiness, irritability, throwing things, flying off the handle stopped when he came off the keppra. I strongly encourage you to just give something else a try to see if it changes. He has been on tegratol for a few months and is doing very well on it.
 
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