It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Epilepsy Message Board
Post New Thread   Reply Reply
LinkBack Thread Tools
Old 11-16-2011, 12:47 PM   #1
Veteran
(female)
 
030free's Avatar
 
Join Date: Nov 2006
Location: NJ, US
Posts: 380
030free HB User030free HB User030free HB User030free HB User030free HB User030free HB User
Smile Weaning off Keppra to become Meds Free. Fingers crossed!

As most have read on my keppra and pregnancy thread, Im 30 years old. I underwent brain surgery in April 2007. Now 4 years and 7 months later I been seizure free and even gave birth to a beautiful baby girl 5 months ago. This week I spoke to my neuro and asked her to start weaning me off the keppra so I can finally be off meds. I was high risk while pregnant just because of the meds not because I had spells, and gave birth naturally without complications. Since I would like to have another child, I dont want to attend a high risk clinic again and will like to live a life without meds.
I got off the trileptal with no complications last year. The keppra is my only med left. I was at 3000mg/ day, and currently going down to 2000mg/day, and in January down some more and hoping to be off meds by next summer.
Has anyone gone meds free after their surgery? What feelings you experinced being off all meds? This is my final steps to becoming free after being on meds for 20 years of my life. Although Im excited I been seizure free almost 5 years, Its still a little scary gettingn of meds. I pray to God all goes well. Any posotive stories would be apreciated.

Thank You all,

Laura

 
Reply With Quote
Old 11-18-2011, 07:58 AM   #2
Senior Veteran
(male)
 
Positive Cynic's Avatar
 
Join Date: Apr 2010
Location: Palm Harbor, FL
Posts: 760
Positive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB User
Re: Weaning off Keppra to become Meds Free. Fingers crossed!

Hi Laura,
I am new on this board. I am a veteran on the stroke board. I had a stroke in Jan. 2010. Now it seems I have epilepsy as a symptom from my stroke. My first seizure happened in June of this year. They started me on Zonegran. It seemed fine during the summer, but I had 3 more seizures starting in Sept. I just got out of the hospital from the last seizure I had. I am now on Keppra along with Zonegran. I am sorry that I can't give you any advice off weaning it off, but I sure wish you well. I have only been on it about a week now and this drug is kicking my butt for sure. Can I ask you some side effects? First I felt like I had a stroke again because a can't make a sentence clearly, just like right after my stroke happened. But they did check for that since I already had one and I was clear from that thank God. (I also may not be typing the best so please bear with me) I'm also dizzy. When I get up from the couch I have to turn around and brace myself with my hands on the couch because I don't feel safe. This morning when I got out of bed I almost threw up, and I have a very strong stomach so that is unusual for me. Sorry to talk about bowel movements, but mine are all messed up now. I Just have to go anytime I can't tell when during the day always loose now and never were before.

I also see something in the corner of my eye once in awhile. Like our dog or our daughter walking by quickly and I turn around and there is nothing there. And yesterday when I was at the doctor's waiting room, I had to go outside because the people in there were bothering me and that is not like me. I have done a really good job will my life the last 2 years since my stroke. I don't won't this keppra to make me be a butt hole or mean or something that I am not. I sure don't won't seizures either, but I guess I'm just asking your opinion if it gets any better? When I got the prescribe I couldn't believe the list of side effects from this drug. And all this stuff I'm writing here has happened since I started taking it. Doctors aren't much help with these kind of questions, that is why I love this place. It really was God send for my stroke recovery and I met some really wonderful friends, so I am sure this board will help me with my new battle and I look forward to meeting some new friends here. Since I am new to epilepsy and keppra Laura, anything you can tell me will be greatly appreciated.
God Bless you lots,
Tim

Last edited by Positive Cynic; 11-18-2011 at 12:57 PM.

 
Reply With Quote
Sponsors Lightbulb
   
Old 11-20-2011, 10:47 AM   #3
Veteran
(female)
 
030free's Avatar
 
Join Date: Nov 2006
Location: NJ, US
Posts: 380
030free HB User030free HB User030free HB User030free HB User030free HB User030free HB User
Re: Weaning off Keppra to become Meds Free. Fingers crossed!

Well Tim first of sorry I took so long to get back to the boards, but since I have a 5 month old I stay pretty busy. Im also sorry your going through so much right now. I been on keppra since 2006, a year before my brain surgery. Although it couldn't stop my seizures completly it did help post surgery to stay seizure free. Well when I first started it in 2006, I was already on trileptal and they added the keppra. The only side effects I felt from it was feeling more tired, and blurrier vision. With time it all went away, and I must say it is a great medicine. I know other people on the medication that have difficulties starting it, but as months go by, their bodies adjust and they live better lives. Now I been weaning off a week now and so far so good, but you wean down slowly the same way you start them, because it is a very strong drug although not adictive, Neuro told me can cause many bad side effects when rushed on or off.

Well in your case, Im not sure how many MGs they started you on and how many they plan to keep you on. I was on the highest amount of 3000mg daily. And as I told you befero I didnt experience any bad eefects aside from the blurry vision for a few weeks. They also started me off slow 250 twice a day until going up to 3000. MAke sure your starting slow too. Im not familiar with your other medication, and you should ask how these two taken togther can have effects on you. Every individual is different, and their bodies adjust at their own pace. What took me weeks cam take someone else months or days. Still you should keep an eye on your symptoms, write then down so you can discuss each one with your neuro when you go back in, and drink plenty plenty of water daily, that will help keep you hydraded if your having such bad bowel symptoms. I do belive if Neuro feels this med its going to help you, then you must give it time to work. I know its easier said then done, but most that have been pn keppra have suffered similar symptoms but with time they will be subside. I do wish you all the best and also hope that with time your seizures will desapear. welcome to our boards and here you will find all the help and friends to help you cope they same way they helped me since 2006. Any other questions we are here. Take care Tim

Laura

Last edited by 030free; 11-20-2011 at 10:49 AM.

 
Reply With Quote
Old 11-20-2011, 03:53 PM   #4
Senior Veteran
(male)
 
Positive Cynic's Avatar
 
Join Date: Apr 2010
Location: Palm Harbor, FL
Posts: 760
Positive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB User
Re: Weaning off Keppra to become Meds Free. Fingers crossed!

Hi Laura,
Thanks for your response. What you wrote was a big help. Right now I am taking 1000 mg keppra a day, 500 one in the morning and one at night along with 100 mg Zonegran one in the morning and one at night with it. I don't like how the drugs make me feel, but I don't won't to have seizures anymore either. As you probably know, I hate feeling of waking up in the hospital and strapped down. And you always hurt a part of your body. This last time was my left shoulder, and every time I bite my tongue on the left side and it takes about 2 weeks to heal. One time I bit it so hard I actually had a bruise on my tongue

I guess my seizures freak out and worry my wife more than me because as you know, when it happens, I am clueless. She has to see me thrashing around and call 911 and watch them put me in the ambulance and sit in ER. I don't know. To me it just doesn't seem fair for her. It effects her as much as it does to me and right now I can't speak really well. It was hard already from the stroke and now this keppra feels like it has set me back. She is frustrated with me because i can't understand our conversations, and I don't blame her. but it is not really anybody's fault. It just is. I will say that I am a positive man. I have been through a lot and it still keeps coming, but all it does it make me stronger. What does bother me though is that my latest trials have been hard on my wife. I have been so strong and decisive in our marriage and now I am not able to and she has to do basically everything. I am on disability now. So this is not a complaining session. To me, by getting my feelings out is how to stay sane.

Laura, I applaud you. You had brain surgery, are seizure-free and now a beautiful new baby. That just makes me smile

Anyway I hope to talk to you again soon. I have to go take my pills for the evening
God Bless,
Tim

 
Reply With Quote
The following user gives a hug of support to Positive Cynic:
030free (11-20-2011)
Old 11-20-2011, 06:54 PM   #5
Veteran
(female)
 
030free's Avatar
 
Join Date: Nov 2006
Location: NJ, US
Posts: 380
030free HB User030free HB User030free HB User030free HB User030free HB User030free HB User
Re: Weaning off Keppra to become Meds Free. Fingers crossed!

Tim, I sure can understand you, and know where your coming from. I also hated having the seizures and feeling like I had to bother my husband for everything and going to the ER so often. Trust me I been there. The good thing is that we were both blessed with awesome partners that loves caring for us. I know it frustrates you but like i told you above hopefully once the keppra kicks in, I hope this will stop your seizures or atleast decrease the amount of time you get them. This issues your having like being unable to concentrate, type or remember things will also subside with time. If it doesn;t like I said write it down and mention it to your neurologist. I was only lucky because I asked about the surgery option, it wasnt offered to me. I was only 26 when I did it. Still I have a feeling they can find you the right meds to help you control your seizures. I wish you all the best. Just remember your already blessed with such a wonderful wife and stay positive all will turn out okay.

Godbless

Laura

 
Reply With Quote
The Following User Says Thank You to 030free For This Useful Post:
Positive Cynic (11-21-2011)
Old 11-21-2011, 10:23 AM   #6
Junior Member
(male)
 
Join Date: Nov 2011
Location: Northern California
Posts: 13
silverstone HB User
Re: Weaning off Keppra to become Meds Free. Fingers crossed!

I had a similar experience and I'm on a similar dosage of Keppra 2000 mg/day. The first drug I was on for the surgery was Dilantin. My neuro didn't like me being on it so weaned my off of it but I think too quickly. I had a serious seizure about 2 wks after taking my last dilantin. So then the neuro put me on 1000 mg/day Keppra. Worked for about a year but I had a spell after perfoming at a night club (singer) and he doubled my Keppra dosage to the current 2000 mg. That was over 1 year ago and have not had a spell or seizure of any kind since. I'm now hoping to wean myself off of it eventually. I just think the first seizure occurred because it was to soon after the surgery to go med free. The second less serious partial seizure was after a performance and no food for hours, while sitting in front of a very large hot wood stove in the bar. Reports had me sweating profusely and even removing my shirt (I do not remember this). So I think there were triggers I could have avoided.

 
Reply With Quote
Old 11-21-2011, 03:19 PM   #7
Senior Veteran
(male)
 
Positive Cynic's Avatar
 
Join Date: Apr 2010
Location: Palm Harbor, FL
Posts: 760
Positive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB User
Re: Weaning off Keppra to become Meds Free. Fingers crossed!

Hi silverstone,
Thanks for your post. That is awesome that you are a musician and still play. I am also a musician, though my last gig was probably 20 years ago, but I still miss it and most of the time, when I dream, my dreams are about me playing my guitar in crowd. I think that you have some balls to still play at a gig knowing you have seizures. But we still have to live our life. What are we supposed to do? Do you have any songs recorded? There is a way to email here. I am sorry. I had a stroke and now epelipsy but I love to meet new creative people because that is what is was and it will never kill me
Tim

 
Reply With Quote
Old 11-21-2011, 04:53 PM   #8
Junior Member
(male)
 
Join Date: Nov 2011
Location: Northern California
Posts: 13
silverstone HB User
Re: Weaning off Keppra to become Meds Free. Fingers crossed!

Thanks, it's great to meet another musician who knows what it's like. But you know I just feel completely comfortable up there now performing. All of the venues where my 2 seizures took place, have still had me back many times. I'm really confident I won't have another episode unless I do try to adjust my meds. If and when I do, it will be after being at least 2 yrs seizure free. My medical insurance is very expensive and for now the medicine is cheap for me $10 for a month's supply. As long as I'm not having any bad side effects to my health, I guess I could just keep taking it forever. Keppra is supposed to be one of the drugs with the least side effects to your organs and blood. One of the side effects is increased depression. But hey, duh if you're just told you have epilepsy, who's not going to be a little depressed? Gosh, I've read about some horrible side effects of people taking Keppra. For now I guess I'm one of the lucky ones who has not had too many problems. The thing about going off my meds is that I would risk hurting myself or someone else in a car and could also lose my driver's license. None of that is any good.

 
Reply With Quote
Old 11-21-2011, 05:59 PM   #9
Senior Veteran
(male)
 
Positive Cynic's Avatar
 
Join Date: Apr 2010
Location: Palm Harbor, FL
Posts: 760
Positive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB User
Re: Weaning off Keppra to become Meds Free. Fingers crossed!

Dear Silverstone,
I am very happy for you. I would like to know some things about your music. What genre do you do? Do you do an original music? I would love to hear it. You know you can email me here and give me forr links and stuff for your music. I don't know how old you are, but when I saw you name silverstone - there was a glam band in the 70's called that. They had a few records in the same time when we are talking about the New York Dolls, Mott the Hoople... etc. Anyway I was never into them, but your name just made me think of that. I would love to jam again. I know I can still play and I am a good guitar player. I just get nervous infront of people and now that I know that I get seizures, I am afraid of doing anything. Even going to the grocery is a major deal. So I want to hear your music. I am just blabbing.
God Bless,
Tim

 
Reply With Quote
The Following User Says Thank You to Positive Cynic For This Useful Post:
silverstone (11-22-2011)
Old 11-21-2011, 07:44 PM   #10
Veteran
(female)
 
030free's Avatar
 
Join Date: Nov 2006
Location: NJ, US
Posts: 380
030free HB User030free HB User030free HB User030free HB User030free HB User030free HB User
Re: Weaning off Keppra to become Meds Free. Fingers crossed!

Silverstone, Glad you decided to slow down on weaning off this time, seizures meds are no joke when it comes to getting on or weaning off, we alll know that by now. I still wish you all the best, and Im glad to see Tim has something in common with you there for you guys can encourage eachother. Also read again the rules, since your not allowed to post complete websites or personal information, I was kick off the boards twice before wouldnt want it to happen to you. Let me know how weaning off goes for you. Tim hope your feeling better as the days go by. Keep in mind what we spoke.

Good Night to both

Laura

 
Reply With Quote
The Following 2 Users Say Thank You to 030free For This Useful Post:
Positive Cynic (11-22-2011), silverstone (11-22-2011)
Old 11-22-2011, 08:12 AM   #11
Junior Member
(male)
 
Join Date: Nov 2011
Location: Northern California
Posts: 13
silverstone HB User
Re: Weaning off Keppra to become Meds Free. Fingers crossed!

It always gives me a lot of pleasure to play my music for people. I used to be a not-so-famous recording artist and was uncomfortable playing live music. Now it is just the opposite. Live performing is my first choice. Tried getting into recording again but the whole industry has changed so much. I'm 54 btw. I want to do a live recording at one of my gigs and then I'll put it up on my website. So far I only have my original stuff recorded about 20 - 25 yrs ago using old tech. The background hiss is terrible and my equipment was amateurish. My style has evolved greatly since. I have a high voice so I find myself doing female cover songs half the time. Of course I put my own spin on it. But the website contains only originals and of a lighter nature. I do more uptempo stuff now.

Last edited by silverstone; 11-22-2011 at 10:20 AM.

 
Reply With Quote
Old 11-22-2011, 09:05 AM   #12
Junior Member
(male)
 
Join Date: Nov 2011
Location: Northern California
Posts: 13
silverstone HB User
Re: Weaning off Keppra to become Meds Free. Fingers crossed!

Thanks for the advice Laura, My name is Bruce btw.

Last edited by moderator2; 11-22-2011 at 02:43 PM. Reason: please read and follow the posting rules - they are strictly enforced on these message boards

 
Reply With Quote
Old 11-22-2011, 10:06 AM   #13
Senior Veteran
(male)
 
Positive Cynic's Avatar
 
Join Date: Apr 2010
Location: Palm Harbor, FL
Posts: 760
Positive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB UserPositive Cynic HB User
Re: Weaning off Keppra to become Meds Free. Fingers crossed!

Hey Bruce,
This forum is really a God send - at least it was for me. It really helped my to recovery after my stroke and I also believe it will help me with my newest challenge with epilepsy. And howdy there Laura I'm doing o.k. today. Thanks for asking.
God Bless ya all,
Tim

Last edited by moderator2; 11-22-2011 at 02:44 PM.

 
Reply With Quote
Old 05-13-2012, 07:24 PM   #14
Junior Member
(female)
 
Join Date: May 2012
Location: Los Angeles, CA
Posts: 10
tinygirl1976 HB User
Re: Weaning off Keppra to become Meds Free. Fingers crossed!

Laura,

Hi there! I really hope that I can talk with you about a few things that you have posted. One is weaning off keppra - can you tell me if you were successful? Can you tell me about your experience? Are you taking other supplements to help?
My reason for weaning is because I #1 want to get pregnant #2 feel like I'm walking around with my head in the clouds.

I'd love to hear your story!
Thanks!
K

 
Reply With Quote
Old 05-13-2012, 08:14 PM   #15
Junior Member
(male)
 
Join Date: Nov 2011
Location: Northern California
Posts: 13
silverstone HB User
Talking Re: Weaning off Keppra to become Meds Free. Fingers crossed!

Still taking my 2000 mg / day dosage. I decided to take my neuro's advice about waiting 2 years without incident before deciding to decrease the dosage. I'm about 1 year and a half into it now and so far so good. I have kept up my performing and even did a couple of nursing homes in the area as pro-bono work. The biggest side effect I have with the Keppra that I did not notice as much on the lower dosage, is the mood swings. But you know I'm in my 50s now how much of that is just normal or what? The other thing is being very tired wanting to take a nap in mid-day. But again? I find drinking some coffee 3 or 4 cups a day keeps me moving but then I had stomach problems for awhile due to all the caffeine. Had to give up my 2 beer a day and 4 cups of coffee habit while taking prilosec for 2 months under doctor's orders. Seemed to help a lot when I could stick to it but I'm getting back on the coffee again recently and it may have irritated my stomach. Coffee also helps with the mood swings and generally has me feeling more upbeat. When I was having all these stomach problems I had a bunch of tests including the endoscopy (down the throat into the stomach) Gastritis and Hietal Hernia was the diagnosis.

 
Reply With Quote
Reply Reply

Similar Threads
Thread Thread Starter Board Replies Last Post
New information on keppra and pregnancy!! 030free Epilepsy 35 01-27-2013 08:51 PM
Keppra Switch mott07 Epilepsy 21 11-25-2009 03:16 AM
Keppra side effects Ceres07 Epilepsy 24 03-18-2009 07:09 AM
Doing research on pregnancy risks while on Keppra and Trileptal but results vary... 030free Epilepsy 0 07-29-2008 11:30 AM
Becoming pregnant while on keppra and trileptal... 030free Epilepsy 0 11-01-2007 10:00 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



030free (19), 92261 (11), Positive Cynic (9), Travis from MN (7), Nicole K (6), heyloe (5), cardshark (4), neurowreck (3), webartethan (2), Looking4aAnswer (2)

Site Wide Totals

teteri66 (1180), MSJayhawk (1013), Apollo123 (909), Titchou (856), janewhite1 (823), Gabriel (763), ladybud (755), midwest1 (670), sammy64 (668), BlueSkies14 (607)



All times are GMT -7. The time now is 01:05 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!