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pinkangel_82

keppra withdrawal

Hi

I am in the process of withdrawing keppra and nothing to introduce. I am just curious if there is anyone on this site who has already done been through it and what sort of side effects did they have during the process?

All advice welcomed and thanks in advance.

Teri

Comments

Re: keppra withdrawal

Hello i Have been on Keppra 3000mg (3g) per day for a while now and althouth my seisures are less frequent i am getting myolonic jerks and aches/cramps in muscles in random parts of my body. i also am having nerve problems eg: very hot and very cold feeling the same.
my mind is all over the place and i feel trapped in my own body i dont go out alone anymore and i am not sleeping either.

i think i want to just stop taking he Keppra but i have been told its dangerous to stop suddenly. apart from the fits, what are the other risks if any please advise.......

marc

Re: keppra withdrawal

Keppra was not kind to me at all. Almost unhinged me. I went off it cold turkey and onto my previous meds with lots of tut, tutting from everyone. I feel better.

Re: keppra withdrawal

Yes man, I was on Keppra for more than 1 and a half year and it was weened off gradually. I took nothing else after that. I've been seizure free since 8 months now, without any AED. Initially I'd feel sort of mild but sharp headache and a feeling of imbalance. Sometimes palpitations too. But nothing too serious. I kept myself busy all the time so that I wouldn't feel much of the side effects (I always wanted to get rid of Keppra). Stay positive and the whole process becomes easy. But lemme offer you a piece of advice- take sufficient sleep (as much as your body asks for) and stay calm. That will make the process of withdrawl a lot more easier.

Re: keppra withdrawal

Yes man, I was on Keppra for more than 1 and a half year and it was weened off gradually. I took nothing else after that. I've been seizure free since 8 months now, without any AED. Initially I'd feel sort of mild but sharp headache and a feeling of imbalance. Sometimes palpitations too. But nothing too serious. I kept myself busy all the time so that I wouldn't feel much of the side effects (I always wanted to get rid of Keppra). Stay positive and the whole process becomes easy. But lemme offer you a piece of advice- take sufficient sleep (as much as your body asks for) and stay calm. That will make the process of withdrawl a lot more easier.

Re: keppra withdrawal

Hi all-

I visited this site to see if anyone has suffered the withdrawals that I seem to be having. I was shocked to see all the posts and thought I would add my experience to all that you guys are sharing. In July I suffered a stroke and at the age of 43 they were a little baffled as to why. I had never suffered from seizures (that we knew of) and I have Lupus. After the stroke I was having some strange symptoms and a neurology interventionist came up with the conclusion that it is seizures also. An EEG in the hospital confirmed seizures, and they immediately put me on 1000 mg of Keppra 2x a day. In the meantime, they tested me for MS with numerous blood tests and a Lumbar Puncture. They recently had me in the hosptial for a mutli-day EEG during which they took me off the Keppra, cold turkey. Apparently I suffered no seizures during my hospital stay and the doctor supervising the EEG went back and looked at my first EEG. He discovered that the EEG Tech had set the machine too sensitive and even if I blinked, it showed as a seizure. Apparently, I had not been having seizures and yet was on such high doses of Keppra. That was a week ago and I was never put back on Keppra and weened. I have been cold turkey for the past week and have suffered quite a bit. I have had migraines, dizziness, nausea, and vomiting. I can't even sit in a car or drive it without getting really sick.

I wanted to confirm the side effects that many on here have commented on and I want to know what others would do about this?

Thanks,

Taylormade

Re: keppra withdrawal

Hello

I'm currently withdrawing Keppra in order to start a family. I was taking 1000mg of Keppra and 500mg of Lamictal for about 3 years. I thought ut would be a good idea to only be on one medication and as Keppra had treated my seizures so well, I decided to drop the Lamictal.

When I was only on Keppra I expeienced grand mal seizures and because very tearful and exhausted. I gradually introduced the Lamicatal again and am now coming off the Keppra instead.

 Now I take 200mg of Lamicatal and 400mg of Keppra (oral solution) per day. I only experience 1 absence seizure a month and find I'm feeling less tired - I don't need to sleep for 2 hours during the day anymore. I've very slowly withdrawn the Keppra by 250 mg every 8 weeks and feel better for it.

Hopefully, I'll be off the Keppra altogether and be able to start a family!

If anyone else has experience of Keppra and pregnancy, I'd be grateful to know.

Re: keppra withdrawal

Hi folks,

I've just joined the site and had a read through some of this post as I'm getting taken off Keppra next week.

I take Epilim Chrono 600mg twice a day and currently Keppra 500mg twice a day.

The reason I'm coming off the Keppra is because after changing neurologists they have figured out that i've been taking a bad reaction to it since i started taking it (roughly 2 years ago).

I'm so excited but scared at the same time because I don't want to have any more seizures. I now have an 8 week old daughter and I want to feel capable of looking after her on my own. I also don't want to lose my driving licence again after just getting it back, having gone 15 months without a seizure.

I'll let u guys know how I get on.

Cheers,
Ally

Re: keppra withdrawal

AUTUMNS MOMMA CHERI

Hi,

My daughter is being weaned off the Keppra because they introduced Banzel to her.  Currently for seizure meds she is taking, Keppra, lamictal, Felbatol, Klonipan, Banzel.  Ever since we started reducing her Keppra we have had some nasty effects.  I dont know if its from reducing the Keppra or something different all together.  She has been very dizzy.  To the point she cant walk .  She has been so tired she sleeps half the day away.  Nasty migraine headaches, and an attitude like you cant believe.  Im not sure if this is from the Keppra or what.  We havent adjusted any of her other meds in like a month, Her Keppra was recently reduced by 500mgs.

Currently we are worried about her starting school, if I cant keep her awake at home how is she going to function in school? 

I should mention she has been on the keppra since 2005.  She was taking 2000mgs 2X day.

Re: keppra withdrawal

 hello,

I was taking 1000mg keppra 1250mg during my ms cycle... keppra made me sick and tired all the time i also went into a deep depression while on it....  my neuro has me taking Carbamazepine im up to 200mg am & pm of that the keppra withdrawals are not so bad so far i have anxiety sometimes and am still a little tired some sweating but not bad....

the neuro had me lower like this

500mg keppra am 250pm for 2 days

100mg am & 100mg pm Carbamazepine 2days

today 200mg Carbamazepine  am & pm then 1 1/2am &pm he says we will go from there...

keppra 250mg am & pm  for 4 days then off the keppra

I take  1 mg klonopin everyday also which for some reason i dont think is helping anymore......

I have more energy now which is nice:) keppra i really dont like at all it wasnt the drug for me it helped my seizures but put me in bed for about 6 months and uti also were bad for me.....  

angel 

 

Don't look back you have already been there.

Re: keppra withdrawal

My daughter is also going off Keppra at this time,  She has been seizure free for 18 months, and since her EEG and MRi were all normal, her doctor is trying to wean her off.  He said to do lower doses from 6 ml 2x a day to 4 ml 2x a day for 2 weeks and then 2 ml 2 x a day for two weeks then stop completely.  She was scared to go that drastic, so she is lowering a ml per dose per week.  I would love to know what to expect.  I am noticing alot of mood changes, and I mean mood changes, she will go from a rage, to crying to happy within 5 minutes.  Would love to know what others have experienced while withdrawing from Keppra.  Thank you

 

Mom to Lauren age 10

Re: keppra withdrawal

My daughter is 9 years old and she has been seizure free for almost four years now.  We had a EEG on May 29, and the doctor said that everything looked normal.  He said that now was a good time to wean her off of the Keppra.  We were all so excited.  It has now been a little over three weeks since her last dose, and a few weeks ago her anxiety stated to increase. She was so scared that she would have another seizure.  A few days ago her mind was just racing. She was having so many emoitions coming out.  My breaking point was when my sweet little 9 year old girl was having feelings of hurting herself.  We contacted her doctor which is an hour away from our home, and they could not see her.  They suggested that we come to the hospital's ER. Her doctor is in the same building.  They said that they were going to get to the bottom of what was going on with her.  Instead the ER doctor's blew us off.  They made us feel like we were criminals. That someone or something had caused her to have an emotional break.  By this day she seemed much better than the previous day, when she had made the harmfull comments.  The doctors could see that she was a happy child.  She was just on an emotional rollercoaster.  They did not do any bloodwork, or CAT scan to rule out anything else that could be causing this to happen. If there is anyone out there that can help me understand  what is going on with her please email me @ smith.elisha@insightbb.com

Re: Keppra Withdrawal in Mans Best Friend?

I have been on line trying to find a board dealing with seizure activity in dogs but to know avail.  So I am calling out to you folks that experience idiopathic or any form of epilepsy to give me a hand with my faithful companion and friend; Sporty.  My heart goes out to all of you folks suffering with seizure activity.  As the owner of one of mans best friend also suffering from Idiopathic Epilepsy; named Sporty (so the name) I can totally relate with you and your care givers.  

As an animal lover and humanitarian I feel like I am fighting a losing battle. 

My dog has had epilepsy and suffers from grand mal seizures since he was 1.5 years old.  He is now going on 6 years old.  I have tried Sporty on everything and the so-called "new wonder drug" Keppra @ $4.50 per pill for over two years now yet he continues to seize.  By the way, no insurance will cover the drug costs for an animal. One week alone last month he has had over 20 seizures while at 30lbs is on 500mg Keppra per day.  If you have never seen a helpless animal with seizure disorder, it will break your heart.  During the post ictal period of the seizure he is like a racing car without a driver at the wheel, he runs and slams himself into anything and everything.  It is almost like he is blind.  He almost went through our sliding glass door last week. I have taken him to over 10 Doctors and Vet universities in the past couple of years.  They cannot offer anything new...and I don't think it is fair to put him to sleep.

Like a child or their baby human counterparts an animal cannot tell you what is happening and how they feel, so you as the owner or deliverer of care feel helpless.  Sporty is a Cocker Spaniel-Poodle i..e..Cocker-Poo.  He lives his life on a complex combination of Valium-Keppra-Phenobarbitol-and now we have added (Kbr) Potassium Bromide into the mix a specialty compound medicine.  We have also just started him on custom made suppositories of diazapam.  The only thing that seems to stop the seizure in its tracks are rectally induced injections of valium. The theory being there are so many nerve endings in the lower bowel that it is basically like getting an injection. It takes about 4-5 minutes to stop the seizure with this method.  I have taken him to Emergency Rooms in the middle of the night because he wasn't coming out of his seizure, the vet says if they last over 20 mins, run him to the ER with him at a cost of almost $1200. combined.  

Due to the economy, I am not working and no longer able to afford the Keppra so he has come off it. I am not certain if this is going to send him into seizures again this month, but after two years, it doesn't seem to be working anymore anyway. I also just found out today, there is quite a huge list of interactions including with Keppra and Valium.   I am wondering if this is causing his repeat cluster seizures?  Has anyone had any experience with this combination? 

This is day two off the Keppra and he seems tired, very tired...exhausted, sleeping all day long.  It's hard to say for sure but I seems the Phenobarbitol (the least expensive drug) to be the most effective.  If anyone has been on this Journey with their little-buddy please let me know, how you where able to deal with it and if you found anything that can help me out with the little guy please write and let me know. hydrof2001@aol.com.

My Prayer: God help us find a cure for all who experience this deadful disease.  My heart goes out to you all!

Sports Dad!

Re: keppra withdrawal

I am currently stopping Keppra cold turkey. I was only on 250 once a day. I have taken Keppra for year and just can't handle it anymore. I am currently getting back on Depakote. I am on day 2 and am starting to feel a little sick. How ling did it take before you felt normal after stopping Keppra cold Turkey

Re: keppra withdrawal

How much Keppra were you on?
were you taking any thing else besides the keppra?
How long have you been on it?
What did you take before the keppra?
I am startting to cut back on the keppra?

Re: Re: keppra withdrawal

Hi

Thanks for your reply. I haven't answered your question previously because this is my first time on here again since putting this post in the forums. So I apologise for the delay.

I was on 3000 mg keppra along with 1000 mg Tegretol, 10 mg Clobazam or 20 mg for monthly period. I would say I have been on keppra now for nearly 3 years and previously to keppra I was on topiramate which was around 250 mg.

At present I have reduced keppra down to 1500 mg a day along with 150 mg of topiramate. I have now reached my maximum dose of topiramate and will only keep on reducing the other 1500 mg of keppra. My GP says I have reached a pleatau now and must stay on clobazam full-time until he says to stop along with my other AED's.

I have noticed that I am alot calmer on 1500 mg of keppra than I was on 3000 mg of keppra, but I will just be so glad when I finish withdrawing it as I think it is one of the worst AED's for me!!

Over the past 3-4 weeks it was a nightmare trying to change over the drugs I was so stressed out, depressed, crying, hardly eating and just looking at food would turn my stomach - mind you it didn't help for my mum to nag me every 30 minutes to eat something. I know she meant well!! but I also had terrible moods, shouting, my nerves in my stomach were playing up which hasn't happened for many years and also it played havoc with my memory. So I thought it would only be best if I was on my own and couldn't argue with anyone. I was determined to preservere.

This past 12 days I reached my maximum dose of topiramate everything seems to have settled down. My GP agreed with me that all these symptoms I experienced were due to the two different AED's i.e withdrawing keppra and introducing topiramate clashing against one another and re-settling the brain.

I will be withdrawing my first 250 mg keppra in 2 days time without introducing anything so I will just have to wait and see how it goes. This is the bit I am dreading.

The good point so far is that I have had no Complex Partial Seizures since the start of topiramate, but I am not sure what a Simple partial seizure is? What about if your just deep in thought about a few things for a while? I have lost weight on topiramate whereas keppra made me put it on and I no longer get the terrible headaches that keppra used to give me.

I hope everything goes well with you withdrawing keppra. It is a long process and must be done slowly. I am reducing 250 mg keppra every 2 weeks if that helps you. You don't say which AED your changing too?

Let me know how you get on and take care.

Teri

Re: keppra withdrawal

I tried to withdraw too fast and ended up with a TC. I was on 1000 a day and was cutting back 1/2 a pill per week as they added Klonopin. I was very emotional on Keppra so I wanted to stop.Now I seem to be doing better withdrawing at the same rate but increasing the Klonopin a little faster. No seizes since and Im down to 1 1/2 pills a day of Keppra in the morning. I guess it depends on if you are replacing meds or eliminating them.

Re: Re: keppra withdrawal

I'm still withdrawing from Keppra and having problems. Down to 1 1/2 pills again after increasing it after the last seizure. Had another seizure last night and was ready to go off it next week. I have increased the Klonopin which I know is addictive, but I can't seem to get totally off the Keppra without seizing. I have also gained paranoid thoughts of people in the house when I am alone. Anyone else have trouble getting off Keppra? Any advice appreciated,

Thanks
Joan

Re: Re: Re: keppra withdrawal

Hi Joan

Thank you for your reply. I apologise for not replying sooner, but this is my first visit back on this site since putting this posting in the forums. It has also been a nightmare for me coming of keppra over the last 3-4 weeks.

I am so sorry to hear that you are having trouble coming off keppra. I am still in the process of withdrawing keppra. At present I am down from 3000 mg a day to 1500 mg a day. In 2 days time I will be withdrawing another 250 mg of keppra which is done every 2 weeks and it must be done slowly.

Can I ask you Joan, while your withdrawing keppra are you introducing anything? How much keppra are you still on? Tell your GP about the paranoid thoughts these meds are causing you. It is definately the AED's that is causing it. Actually, I am quite sure that Klonopin may be causing it if you have taken it for a long time.

I used to also take Klonoplin for many years and I was too young at the time to know what group of drugs it belonged too. When I did eventually gradually withraw klonoplin I did notice a improvement in and how I felt in myself each time I reduced it.

Good Luck and let me know how your getting on with things.

Take Care

Teri

Re: keppra withdrawal

Terri,

8 days ago I finally decided to switch back to Depakote ER from Keppra. Keppra is not the right med for me! But I forgot to get the instructions from my doc and called his office early in the morning. He was on the emergency family leave. I told his secretery that I only have Keppra pills enough for a few days and also a prescription for the Depakote. She told me she need to ask for the instructions the other doctor. I waited 2 more days-no answer from her. I didn't have any more pills and called her again. She told me there is nothing in my chart stating by the doctor that he wants to switch me back to Depakote!!!!!!!!!!!! I was mad but decided to wait when my neuro will be back and refill the Keppra for right now. I called to the pharmacy to do a refill and also brought my new prescription for Depakote for the future. What a surprise I had at the CVS-they couldn't refill my Keppra because doctor didn't approve it. They gave me 30 days supply of Depakote! Office was closed already and emergency line was not answering!!!! Nobody could help me! I just went cold turkey. That morning I took 1000 mg of Keppra and at night instead of 1000 of Keppra again I took 1000 of Depakote. Nothing happened to me(Thank God!!!). I am back to my old medicine:( taking 1000 mg a day. For my mood it works much better. Now I don't have any numbness in the head, anger all the time and dizziness!
What's interesting this secretary called me Monday morning and started to tell me how to switch the medicine, doctor finally came back. I told her that it's too late, I am on it already. I told her that it's unbelievable what they put me through-I don't have a cold, I have an epilepsy and it's not an illness you can play with! That's my experience!

Best Wishes,
Natalya.

Re: keppra withdrawal

 I'm going through a keppra withdrawl now. Geezus, it feels like a street drug

 

 

"Anyone who lives within their means suffers from a lack of imagination." Oscar Wilde

Re: keppra withdrawal

we did the same thing, ran out-doc not calling back, my pharmacist gave my son 6 pills-called it an emergency dose-and didnt carge us.it was memorial day weekend so he gave us enough to get through until the office opened up on that Tuesday--just a thought in case it happened again!

Re: Re: keppra withdrawal

Did you have any problems with your eyes on the depokote?

Re: Re: keppra withdrawal

Natalya, just realized why I have you on my buddy list.
I never see you on? How are you?

Re: Re: Re: keppra withdrawal

Hi Stamp,

I didn't have much problems with my eyes on Depakote except sensitivity to light. My side effects on it: tremor, little nausea, hair loss:(, easily bruising and the biggest of all I know that I can't have kids while staying on it! Next year during the pregnancy which we are planning I need to be free from Depakote for the whole 9 months!

I have you on my buddy list too:)), but I don't know why I don't have the plus sign next to me when I logged in like others?? I usually go on-line at different time and I never know how long I will be able to stay depending on my youngest son's mood:).

Thanks for asking, I am much better now! My mood is much better since I stopped Keppra. Hopefully my memory will improve too-I was very forgetful on Keppra. Dizziness disappeared! Well, overall I am OK. The only problem will come I believe-hair loss.

How are you? What medication are you on?

Natalya.

Re: Re: keppra withdrawal

Hi Natalya.

Thanks for your reply. I know it's been a while but I haven't been on this site for a while giving any replies until yesterday. It has been a total nightmare so far trying to withdraw keppra as you know. Sounds like there was a bit of a mix up with your neurologist secretary somewhere. You were very lucky that a grand mal never happened when you withdraw 1000 mg of keppra all in one night that was very risky!! I am only allowed to withdraw 250 mg of keppra every two weeks. Good for you speaking up to your neurologist secretary. Have you discussed this incident to your neurologist too?
I hope you have/will. I am only half-way through withdrawing keppra now and tonight is my first withdrawal of the AED without introducing anymore topamax so I will just have to wait and see how things go now. I hope Depakote is still working well for you.

Keep in touch and take care.

Teri

Re: Re: Re: keppra withdrawal

Hi Teri,

I am OK, thank you! Since I withdrew Keppra the way I did I feel much better! I just had no other choice!
All these experiments trying to find a better med for me was very hard overall! I am emotionally stable right now and want to live again, my depression was terrible! I have light tremor but this side effect is nothing to compare how many side effects Keppra gave me. Hair is my only concern right now(hoping they want start falling). Maybe in the future I will try Topomax...
I have an appt. to my neuro at the end of this month where I will raise the issue. This is not the first time when these people put me in the position when I have to be without any support and help. When I call this secretary she always sounds nice but nothing gets done.
I hope you doing well! It's a long process to withdraw from medications. How Topamax is working for you? Take a good care of yourself!!!!

Keep in touch,
Natalya.

Re: Re: keppra withdrawal

yes Natali There is no plus sighn next to your name!
I have not seen you on, It was probably the keppra depokote issue.
I went to the Dr.s and she ordered a cbc. All levells are normal,
but my blood platelets are high.
Have no idea what that means.
I feell nausses all the most of the time.
I am on keppra and lamactal.
No more depokote er for me.

Re: Re: Re: keppra withdrawal

Stamp,

Why I don't have plus sign next to my name?? What does it mean?
My doc ordered lots of lab work on me too. CBC is one of them. Will see the results at the end of the month on my next appt.
I am back on Depakote ER. No more Keppra and Lamictal for me! With my next pregnancy I will be med-free and then will be back to Depakote. So far I am tired trying to find the medicine. Other then pregnancy issues Depakote is working fine for me. Last few months I was like in the dark deep hole-I am scared to be in there again. Plus these experiments caused me a grand mal in February(when I switched from Depakote to Keppra)-it took me several weeks to get back on track.

Natalya.

Re: Re: Re: Re: keppra withdrawal

Ok nataly we seam to be missing each other.
My story is too long my keppra and lamactal have changed so many times this month.
Long story short.
I grew up on regular depokote.
Then in the summer I was put on lamactal and keppra and off of the depokote.
At the end of April my medds were changed again and I told my new Dr that I missssed my depokote .
Well after a week I began seeing double. That is the reasson I stopped in the first place. So I stopped taking the depokote.
Well as of last my lamactal was lowered and I am back on the depokote.
We will have to set a time appart to chat. Compare storyies.
I know mine is getting longer and longer.

Re: Re: Re: Re: keppra withdrawal

natalaya, Someone told me yesterday that they are laughing at us,becuse we keep missing each other.
Well tommorow (Wednesday) I am going back to the Dr's
Hopefully another medds change.
Oh it seams when I read the other form's people have one hell of a time getting off keppra,
But I think every boddy is glad they did it?
have you talked to anyone who wishes they left things alone and wants back on the keppra.

Stamp

Re: Re: keppra withdrawal

Ok Natalya,
It's your old friend Stamp.
Whay is the latest on the depokote lamactal situation
Someone in thease forms said they got terible headaches when comming off the Keppra.
Did you?
Could that be why my head is poundding?
I thoughMt depokote and depokote er was supposed to be for migranes.
Just e-mail me

Re: Re: Re: keppra withdrawal

Stamp,

Sorry for taking so long to answer! I was really busy lately. I didn't have major problems with headaches. I rarely had any headaches before too. As far as I know Depakote should help with headaches. Sorry to hear that your have such a problem with it! The only thing I have is dizziness sometimes.
But since I switched back to Depakote ER my neurologist wanted to check my level of the med and it was 101. It's unusually high for me! I always had my level around 60 and stayed on the same dosage 1000 mg per day. Now, it's so high with the same dosage???!! I don't know why. Doctor suggested to do the blood test again and if it will be that high again lower it to 750 mg a day.
I tried to e-mailed you and it said that you are not excepting any e-mails so..if you like to chat on this site and set-up a time I will be more then happy to do so!
I hope it will get bettet with your headaches!

Take care,
Natalya.

Re: keppra withdrawal

Hey there,

Congrats on leaving a med. That's amazing and I hope you're feeling good.

I'm 5 days into tapering off Keppra. Until Saturday, I've taken 500mg Keppra, 500mg Lamictal, 3600mg Neurontin, daily for the past 3.5 years. It's been a month since we stopped the Neurontin completely, which has been a wonderful experience: no bad anything, instead, feel cleaner, clearer and healthier.

But lowering the Keppra has been very different. I'd say that by Monday night, after three days of not taking my evening 250, I'd started feeling really wierd. While I feel like I can think better, and my that my eyes actually function better (like when you get glasses and can see the board or blades of grass, etc.). I guess all my senses are working better and I can think better. Who knew that that med was still slowing my cognitive abilities down? I thought I'd completely adjusted. All these improvements are accompanied by feelings of depression, alienation, loneliness and a general feeling of unease. I feel like I'm on the brink of tears all the time, and find socializing unpleasant, and am disgusted that I'm back in a place where all I can think about is how the chemicals are working in my system.

When I initially started taking Keppra (at the time I was also on Neurontin and Trileptal), I so depressed that I thought I was hurting doors when I opened them. But when we replaced Keppra with Topomax, I had 17 seizures in one day. So we put some Keppra back, and replaced Trileptal with Lamictal. The moods evened out, and the seizures stopped.

I'm hoping that once the Keppra is gone and it's just me and Lamictal, I'll be free of this sadness. Has anyone else gone through this with Keppra?

Katrina

Re: Re: keppra withdrawal

Dear Katrina, I was taking 200mg of keppra and it gave my every side effect it has.I hadn't slept in 5 days,I wasn't eating,dry mouth I cried constantly,and my muscles were sore.I was taking it for 3 weeks and i was so desperate to come off it that stupid me I stopped it abruptly.Now I am paying the price.My eyes are really sensitive to light I have cloudy vision.I am hoping it won't be much longer to wait out the symptoms of withdrawal.It has been 1 week today since my vision has been like this.It didn't develop until I was off keppra for 1 week.Any info you have on your reducing keppra would help.I also went to the eye doc and my eyes are fine.Thanks. Dee.

Re: Re: Re: keppra withdrawal

Dear Dee,
I sincerely hope that your eyes are better.
As I've reduced my Keppra, I haven't had eye trouble like that. If anything, I can see more clearly. It feels like I'm that kid who just got glasses and can see the chalkboard. But, I'm being eased off Keppra gradually, I think it'll be two months before it's out of my life. I've gone from 500mg a day, to 250mg. When I started Keppra three years ago, I became severely depressed and when we realized that the constant tears were due to it, I was taken off it immediately. Two days later, I had 17 seizures. We then, put me back on Keppra, a reduced amount, and then added Topomax, which also was a bust. That messed me up in much the same way Keppra did you: no sleep, appetite problems, tiredness, but I also got blurred vision. Eventually, Lamictal evened out the Keppra's depressive effect. So that's been some of my experience with Keppra.

Do you think that your body may need a little Keppra to straighten itself out, I mean, ask your Dr., but perhaps 50mg morn & night, and from there, easing off it completely. I wish I had the answer. Let me know how you you're doing.
K

Re: Re: Re: Re: keppra withdrawal

Hi Stamp

Thanks for your email.

I am still reducing my keppra and I am down from 3000 mg to 750 mg so far. The withdrawal symptoms have been a nightmare for the last four months. I reduced 250 mg last night but I seem to feel alot better today. Someone in the posts asked if keppra gave headaches and I had very bad headaches every day with keppra and towards the end I was just wanting to sleep all the time so I knew something wasn't right. Keppra also gave me stabbing pains occasionally in my right eye, but got more frequent which now have completely stopped. Luckily, at that time I had my first ever visit with a Epilepsy Nurse and I explained the situation to her and she agreed to switch me off keppra. In six weeks time I should be off keppra completely so I can't wait as it's been such a long process, but had to be done correctly. The testing time for me will really be when I am off keppra completely and if the seizures start up again.

Keep in touch and take care

Teri

Re: Re: Re: Re: Re: keppra withdrawal

Hi Natalya

I haven't heard from you in ages. Just wondering how you are keeping and how things went when you visited your Neurologist? I have an appointment to see mine next week too for my yearly check-up.

I have never taken Depokate so I don't know what that AED is like. Topamax seems to be working well for me at the moment apart from its giving me more hairloss than usual (not big chunks, just more than normal) and weight loss, but I aren't complaining there. I don't know if the depression is from the withdrawal of keppra or the topamax yet.

Look forward to hearing from you.

Take Care

Teri

Re: Re: Re: Re: Re: keppra withdrawal

George - NYC
Teri--How long had you been on Keppra before you got "approval" to start reducing your daily intake? I've been taking it for almost six years, and until two weeks ago, my daily intake was 3000mg (like yours, I believe). While it sure helped the frequency and intensity of my seizures, it does have side effects. Temper outbursts, 'round-the-clock sleepiness, headaches are three of them. So rather than make my own decision about reducing my amount, I wrote to my doctor and suggested we try it with one fewer 750mg tablet per day. I had been taking four. That's a high amount, and pretty near what even the manufacturer recommends as top. So I'm now down to 2250mg per day. Along with Keppra, I take Depakote ER (1000mg per day). So far, only a minor aura. But for me, that's normal. Over how long a period did you get down to the amount you're now on? Did they present to you the dangers of coming off it completely. Do tell us more. Good luck!

Re: Re: Re: Re: Re: Re: keppra withdrawal

Hi George

Thanks for your email.

I was on keppra for just over 4 years. It took a while to get my doctor's approval. You know yourself the side effects of keppra, but the side effects are different to all depending upon each persons own body chemistry. I wasn't told of any dangers which could occur and of course we are not told as everyone reacts differently to any AED whether introducing/withdrawing or just staying on it. but luckily I have a first-class doctor who checks on my health very regularly and I have an Epilepsy Nurse who I can contact anytime. What puzzles me if keppra is helping the frequency and intensity of your seizures then why are you reducing it?

Good Luck with reducing your keppra.

Take Care

Teri

Re: Re: Re: Re: Re: keppra withdrawal

pink how many seizures did you have before getting on keppra? My son has had 1 seizure only a year ago and has been on Keppra 1000mg aday since then. I want to start reducing his amount to perhaps 500mg a day for a few months and if no seizures reduce it even further.
Your thoughts?

Re: keppra withdrawal

tslate,

You might want to look for a new neurologist for your son. My son is nine and had a grand mal and was put on 250 mg twice a day. Then about 5 months later he started having seizures again so the Dr. upped the pm dosage to 500 mg. he believed with him growing and gaining weight that it was not enough in his system. We did a withdrawl in December and 4 days after being totally off the Keppra he had 2 seizures within 24 hours so back on the Keppra. Another weaning is scheduled for this coming December. Good luck and keep me informed. curtis.wybourn@qbeamericas.com

Re: keppra withdrawal

tslate,

 My son (9 years old) had one seizure and the pediatrician put him on dilantin until we were able to see the neurologist. He gained 6 lbs in 3 weeks so the nuerologist we were refered to put him on Keppra. 250 mg in the morning and 250 mg at night. He was seizure free for five months then started having them again. They had him take the 250 in the morning and then 500 at night. That seemed to do the trick for him. They figured with him growing and gaining weight the 500 a day was not enough. He showed no activity in the EEG's they have done while on the medication so they weaned him off this past Christmas. Four days after being totally off the meds he had two seizures within 24 hours so back on the meds. We will try again in Decemebr 2008.

 

Re: Re: Re: Re: Re: Re: keppra withdrawal

Dear tslate

I apologise that I haven't replied to this message that you left me before now but I have been away.

Even though your son has had only one seizure a year. You should still really discuss your son's health with his consultant first before starting to reduce his keppra.

I would be grateful if you would let me know how you got on with this situation and how your son's health is at present.

I look forward to hearing from you.

Pinkangel_82

Re: keppra withdrawal

Hello.  My son is 3 1/2 years old and the docs are considering taking him off keppra.  he takes a total of 120mg daily.  That is such a low dose, any advice would be appreciated.  i hope your son is in good health

 

thevernes@yahoo.com

 

Thanks

Re: Re: Re: Re: Re: keppra withdrawal

Hi everyone, I am the mother of a 12 year old boy that has been through medication hell since 2005 for his epilepsy. Andrew has multiple absence seizures daily. With his he has two kinds though, one where he just freezes from whatever he was doing and his eyes roll up into his head--you cant see anything but the white part and when the eyes roll back down 30 seconds or so later he picks up wtih whatever he was doing and doesnt even know he had a seizure. With the other one the eyes are rolled clear up too but he keeps walking and has almost walked into walls and doors. Andrew also has clonic tonic seizures with no rhyme or reason (at school, in the van, while eating supper--that one was freaky he was choking on fried chicken, sitting on the floor playing with his younger brother, sleeping etc.). Andrew has been through Tegretol, Tegretol and Topamax, Topamax, Depakote, Keppra, Keppra & Lamictal and now Keppra & Zonegran. The current plan by his Pediatric Neurologist is to up the Zonegran to 8 pills a day (25mg each) and lower his Keppra from 6 pills a day (250mg each) down to none. Then they are going to add a new medication to be the primary (replacing the Keppra), Andrew sat on 3 Keppra pills a day for 6 months clonic tonic free and then all of a sudden the absence seizures started getting more frequent and December through April was full of clonic tonic seizures. His last one he was in the back end of the pick up at my moms house getting something and as he was getting out he had a seizure and fell our onto the rock driveway. We are having problems with the numerous changes in his medication. He fell asleep in a class today and the teacher chewed into him in front of his classmates and told him how rude that was of him. Last month Andrew was in the ER 3 times. Twice with severe reaction to the Lamictal (felt like his skin was on fire, was bawling in class, was very hot to the touch, blood pressure was low), the ER docs of course said couldnt be the medication thats not the listed side effect (rash and breathing problems are) and pushed it off on it being flu season. He never did get sick but a week later to the day he was in the ER again this time severly dehydrated and hooked up to an IV for several hours. He came off the Lamictal the next day and started the Zonegran after his next clonic tonic seizure. The last ER visit they believe he had so many of the absence seizures that he wore himself out. I am concerned about such a radical change in his medication one right after another. Has anyone came off of the Keppra over about 4 weeks time and what am I in for? We have been through a roller coaster of side effects with the past meds. If anyone has any heads up from personal experience I would appreciate it. Lisa

Re: keppra withdrawal

My heart really goes out to you in all that you have been through with your son.  And he thanks you.  Trust me he does.  More then words can say, or even describe because i am that child speaking 16 yrs later.  And i look at everything my mom has done for me and just thinking about it is enough to make me want to cry.  I have JME and have gone through the lamictal horribleness with the fever and the sweats and the midnight runs to the ER.  Scared as hell.  And i have also been on keppra, several doses of it.  Both of those drugs did a number on me.  I tried them seperately, i tried them together, and nothing seemed to work.  I have now finally just come off lamictal, completely, then i did keppra completely.  A 12 week transition i couldn't wait to finish because i didn't even recognize myself on either one of these drugs.  Speaking from personal experience, drugs work for different people in different ways.  Keppra worked great for me for about 2 months, then stopped.  I am now on topamax and slowly increasing my dose.  I have been off keppra completely for only 4 days so i am experiencing a few of the withdrawl symptoms.  Much the same ones as being on them.  The depression, anxiety, the moodiness.  The stuff that drives me crazy because i am nromally such a happy go lucky person.  All the same stuff i heard would happen with Topamax but i had to try it anyways.  You can't always go by what others say, or by others stories because there are so many different factors to consider. I was worries with Topamax after all of the stories, and so far we have been friends.  So case in point you never know until you try.

 I wish you the best of luck with you son.  Stay positive, you are such a supportive mom and he is so lucky to have you.  Coming off the Keppra might be a bit rough at times but from experience i am sure you know that coming off is a gradual process, and even when we become a little monster-ish, just know it's a temporary thing, and it's not really us, it's the drug talking.  He loves you though and everything has a way of working itself out in the end.  You will find your solution.  I wish you the best of luck.

your friend Kym

Re: keppra withdrawal

hi pinkangel,

I have beeen going through the same thing I have had hair loss and still feeling tired. Ialso think it causeing me to still have some grand mal seziures as before this I had never taken any. If you want to talk about it u can email me at janicepace@hotmail.com

Re: keppra withdrawal

NK
I am in the process now of withdrawing from Keppra from 500mg to 250mg. 500 one night then 250 and so on and I have been doing this for a week. On the 9th day of withdrawing from the keppra I had such bad anxiety, emotional downers and just generally feeling a little out of control. 3 days later it has started to subside. Everyone reacts differently though!
N

Re: keppra withdrawal

gratefulmouse,

I just posted another comment on this site about getting off keppra. I was actually getting off an antidepressant desepramine which is an old trycylic and was also used for kids wetting the bed. I was put on the desepramine because I was allergic to premarin a estrogen harmone I was forced on after a hysterectomy. Its the usual thing to do when a dr cant figure out what to do with someone when things dont work. I later found another estrogen..ie estrodiol..simple and it worked..I had a hysterectomy when I was 37. I took the combination estrodiol and desepramine from 1989 on until 1997 when I decided to get off the antidepressant and down the road had a seizure. I was tried on dilantin and w/n 7 days broke out into a rash and was taken off. I went through a maze of stuff then which nearly killed me and I just got back on the antidepressant and was fine. I then decided I was going to get off again but be monitered.I wanted to get off all my meds. so I started one by one. while in the process of getting off desepramine the a/d..I had another seizure and thank goodness my husband was home. I was then put on keppra. I didnt know that one only took it for a short while. I told the nuero that I only wanted to take it until I got off the antidepressant. It took forever but I felt safe while on keppra I would get no more seizures and didnt. I was fine. however, Im off the desepramine a/d..and just got off my last keppra pill. I was on 500mg 2x day..morning and night..I went off the morning first and then the night..last night was the last time ..when I dropped the 1stpill I was nervous and anxious and dizzy and had one bad bout of depression. I coudlnt tell if it was from getting off the antidepresant or the keppra. I have had major depression and anxiety disorder in the past but didnt take anything for it..until I was put on stuff like that becuz of the hysterctomy. I want to know how long it takes to get the keppra out of the body..out of ones system..so there is no affect or after affects at all. I rode through the depressive episode which lasted one day...my vision has been impaired since I started the drug..i hope to not have to take this any longer and that my seizures have gone a way and was just the result of getting off desepramine. who knows though..I was told that lots of people get off desepramine and dont have seizures. however, getting on it causes it as well and that didnt happen, just getting off. I would appreciate any help in withdrawal side affects of keppra. my dr told me to just drop it..like 1000mgs..just dont take the two pills..I told him NO...I will drop only one pill at a time so 500mgs for 2-3weeks and then the last one..which I did last night..and I can feel my head feeling funny...after the 1st drop I had facial ticks...whatever that is..and dizzyness..its amazing having this happen at my age..I was 47 for the first and then 55 on the second one..God bless all of you

Re: Re: keppra withdrawal

gratefulmouse,

I am seeing here that people are going off 250mgs at a time...why did my dr want to take me off the entire 1000 at one time..I got off 500mgs in one go..and dont feel that great....and just dropped the other 500mgs...but that was last night..my vision is clearer..but I feel depressed...and dizzy..I called my dr who is on vacation and the nurse is out till tomrow...she will call...I might take half of the 500 tonight...there are score marks on the pill...my ticks stopped though at least for now..strange how getting off the last 500 last night didnt give me more facial ticks...maybe it takes longer to feel the bad side affects..I do feel like I have the flu...yuk...its too bad how drs dont do their job...

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