Epilepsy Forum - I'm New to Keppra,is It Any Good?


I'm New to Keppra,is It Any Good?

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shelbe

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I'm New to Keppra,is It Any Good? Posted: 09-13-05 15:37pm


I'v been epeleptic for the past 5 years.My seizures first started after I had my first child.I was diagnosed phenytoin&eppilim to start off with.I was suffering bad side effects of the eppilim as I was taking 1600mg per day.My doctor introduced lamictal and I was able to cut down my dose of eppilim.I continued to take this coctail of drugs but over the past year my siezures started getting worse.I wasn't happy with the treatment I was getting so I looked for someone else.Today I had an appointment with my new doctor and he is amazed that I am on so many drugs.He feels I need to have them reduced as the amount I am on is dangerous.So he wants me to start taking keppra and eventually come off my other drugs. :d I am very happy at this but I was wondering what if there was anyone who is taking the keppra and how it is rated.I would really appreciate any replys atall as ,as you all probably know.It is hard to find any sorts of answers when it comes to epilepsy. Thankyou :)

kayakmom

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Posted: 09-24-05 10:05am


Sorry no one has replied yet. I see many using keppra that do ok. For kids using b 6 can help with the mood swings it can cause, not sure if that helps adults. Seems to either be a great one or awful from people I have talked to! Hope it has helped you!

shelbe

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Posted: 09-25-05 15:39pm

kayakmom wrote:

sorry no one has replied yet. I see many using keppra that do ok. For kids using b 6 can help with the mood swings it can cause, not sure if that helps adults. Seems to either be a great one or awful from people I have talked to!

Hope it has helped you!

thankyou for replying.I was hoping on some feed back but as you can see....None as yet.I'v been on the keppra for 1 week today.The one side affect I have noticed is headaches.But I suppose,as with all drugs,there is a period at the start when you will suffer these side affects.With the eppilim I used to hallucinate,have absent seizures and my hair started to fall out.But all this passed so I am hoping these headaches will to. :)
is it your child who has epilepsy?I have seen you on many forums but your always helping other people.Iv yet to find one when your talking about yourself.

Oh,and what is b 6?Iv never heard of it.

Thanks again,hope to hear from you soon.Xx

kayakmom

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Posted: 09-26-05 07:23am


Good to hear it is going ok so far with keppra. B 6 is a vitamin, sorry I was not more specific. Ask your doctor if it is ok to take if you have mood swings with keppra. Really helps kids. Yes, I have 2 teens who have both battled seizures. One seems to have stopped, hopefully for good. My son has fought longest, over half his life and still having seizures. It usually takes 4-6 weeks on the med to adjust to it and side effects can level off around then. I really hope your headaches will ease before that! I have chronic headache problems and it is not easy to deal with them. Hang in there! Yes, I am on a bunch of forums and do want to help. I know at efa there are quite a few adults who have used keppra, you might try there at www.Efa.Org ecommunities living well forum or adults forum. Best wishes! G

AHH

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Keppra Posted: 10-15-05 23:50pm


My son is on keppra and I am pleased with its results. It is new, though. Who knows what 25 years will find.

pianist995

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Keppra Posted: 10-17-05 13:38pm


I just saw this forum today, or I would have replied sooner. I have been on keppra since mar 2005, and I was put on it as my first and only, so far, medication, as I was only diagnosed in mar. My neurologist, I believe, put me on this since it is one of the best ones that works with birth control (i have 3 children, and we have no problem getting pregnant, so birth control is pretty necessary for us). The first 3 or 4 weeks were pretty rough for me. I would get dizzy if I stood for very long, I was much more tired than usual, and I was really more irritable by far than I usually am. But after that it got a little better. I still have a hard time not being more tired than I used to be, but the dizziness is gone, and the moodiness isn't nearly so bad, and I haven't had another seizure yet, so i'm hoping this works for me. Best of luck, medications work differently with different people, it's hard to know for sure.

marla88

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Keppra Posted: 11-27-05 21:24pm


I've been taking keppra for almost 3 yrs now. My neoro stated to me it had almost no side effects. It was practlly a new drug. I had to increase the dosages and I seem to be doing well with it. Good luck.

beingyoume

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Posted: 12-13-05 10:19am


I also am on keppra for over two years now,i am taking 3000 mill aday ,plus 600 mill of dilatin, the only thing about keppra is it is a hard drug to check blood for,i also get headaches but was told its not the keppra, my father takes keppra ans swears buy it, good luck to you

marla88

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Hope You Are Adjusting Well to Keppra Posted: 12-13-05 19:44pm


I responded once but forgot one of the most important things about keppra that i'm aware of. Always try to take it every 12 hours apart. It only lasts for 12 hours. I take 750 mg at 7am and 1000mg at 7pm. On the 14th of nov., I forgot to take my meds that night and at 6:20 the next morning I had the worst seziure I had ever had. I didn't know anyone including myself for approx. An hour. My neuro. Said to be sure to take it every 12 hours. That is my dosage anyway. I also take 800mg at 7am and 800mg at 7pm of neurontin. As long as I take my medicine, I don't have a seziure. Hope all goes well for everyone and good luck.

beingyoume

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Posted: 12-13-05 22:31pm


I appreciate your response as to make sure you take the keppra,i do have a habit of forgetting if I took it ,then I dont. As you do I wind up with bad seizures,i have awaken with my face and head cut,though I try to stay in one place at night since I am alone,but I do agree it is important not to mess up the cycle,thank you

sami_1982

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Keppra Posted: 12-14-05 01:46am


Hello all, i am also taking keppra. I take 1000mg morning and night. I take it at 7am and 7pm. I have now been on keppra for one year. The other week I was in hospital for a video eeg and the doctors there took me off the keppra to see if my other med would hold me. My other med is epilim. It only held me for 4 hrs. Then I would seiz. Ive been back on all my meds now I was only off keppra 2 days in hospital. I take 1200mgs of epilim morning and night. But now since the drs played with my meds I have a strange feeling like aura they call it. My heart will race first then I will go into the fit it is scarey this ever happened to any of you on keppra.? And my seizures have changed. Like weird kind, pupils larger then before. And the seizures are more localised. To one arm or leg. Where as I usually had grand mal before.

beingyoume

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Posted: 12-14-05 07:58am


Hi sammi, the doctors have been playing with my meds for so long,im just wondering what it would feel like to go without a seizure for a couple weeks,some seizures I have my left arm doesshake and my face tightens up,so im told, I do get aura 90 percent of time,it is like a stale coffee,when I dont get aura and have seizure, it is usually a bad one, if you feel good on what they give you ,doesnt it make you wonder why they play with the meds? I hope they get it right for you,i dont think they understand with all the changes in medicine,we are the ones eho feel it . Thank you ,good luck

shelbe

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Posted: 12-14-05 16:41pm


I'v now been taking keppra for 4 months.I am on 500mg in the morning and 500mg at night.I also take 100mg lamictal in the morning and 300mg phenetoin at night.I used to be on 1000mg of epilim a day but since introducing the keppra I have came off it.I feel alot better.When I first started taking the keppra I was having really bad side affects.I was suffering bad headaches(still get slight ones now.)i was deppressed,i was crying all the time,i was scared all the time....I felt like I was going mad and at one stage I even considered stopping the keppra.Thank god I didn't as I feel alot better now.I am now due to up my dosage of keppra to 750 mg at night,so I can start reducing my phenetoin.And eventually come off them aswell. This site is brilliant.By talking to other people and hearing there stories and how the drugs have helped/or not helped them.I'v had alot more information off here than what I have had in the past 5 years of my epilepsy.So thankyou everyone. :d

kayakmom

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Posted: 12-21-05 15:05pm


Hey shelbe, glad to see you are doing better!! May I ask how long the headaches and other things lasted before you felt better? We are looking to add it for my son as his second med and I am kind of scared of side effects for him........... So glad you stuck it out. Really stinks that these meds can have so many side effects, but I know sometimes they level out if we just give them a chance!! Is it controlling your seizures? Best wishes as you wean the phenytoin. Hoping that goes well! G

darbie05

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Posted: 12-21-05 16:37pm


Hi our son is now going on 2 weeks on his keppra. So far he has not had any seizures and there does not seem to by any side effects. The dr told us that people usually do go on it or not good at all. Good luck.

shelbe

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Thanks Posted: 12-21-05 16:51pm


Hey there.Can I ask what g stands for?It feels better to start a msg with a name.Lol. When I first started taking the keppra I had really bad headaches for the first week,it felt like my head was about to explode but after that they eased.I won't lie,i still get headaches now but there not half as bad.A couple of painkillers and there sorted.There are some really caca*y side affects and I suffered most of them,but i'm over them now.At the time it is hell but you just have to concentrate on that light at the end of the tunnel.I never used to believe it was there.I was convinced i'd be taking my coctail of 15 drugs a day,but i'm now down to 6 and hopefully in 4 months time I will be down to just 2. My doctor was really suprised I suffered so many side affects,the headaches are commen but the others are very rare.I was probably just one of the unlucky ones. I'v had a couple of siezures since I have been on the keppra.One was due to illness.Whenever I am unwell I suffer a siezure.The other was brought on by stress,family argument.I just got myself worked up.But iv had no more out of the ordinary ones.I was having a few that I couldn't explain but other than the 2 I can explain,i have been fine. Thanks alot for your reply.I hope things go well with your son.I suppose any medication is worth a try if you think you could get a good outcome.Which I hope you do. Have a lovely christmas and a brilliant new year.Hope to hear from you soon,shell xx :)

sami_1982

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Keppra Posted: 12-21-05 20:38pm


Dear everyone, i didnt have any major side effects when I started taking the keppra, the only thing was that, you have to start it slowly. I was on a cocktail of epilim 1000mgs twice a day and 400mg of tegretol xr twice a day. The drs took me off tegretol over 3 days and introduced me to keppra, I got a cold sore on my lip. But it says you can get a mouth sore from keppra, and it went away, and then I had a stoned feeling for about a week. That was it,

shelbe

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Hi Posted: 02-04-06 07:25am


Hi there.Well i'v been on the keppra a while now and everything was going great.That was untill I started to reduce my phenetoin.I reduced my dosage from 300mg to 200mg.For 3 weeks I was fine then suddenly...Bang.The begining of this week(monday),i suffered 2 siezure's in the night.I felt really drained on tuesday.Wednesday night I suffered another 2 and last night(friday) I suffered another 2.They are different to what im used to.I wake up just as im coming out of it and I also lose control of my bladder.I can't remember the last time I felt this bad. I was wondering has anyone else suffered anything like this? I know I shouldn't be on here as I still feel bad but I need some answers.As its a weekend I can't get hold of any doctors so this is my only hope. Thanks. Xx

kayakmom

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Posted: 02-08-06 08:10am


I am so sorry you have a bunch of seizures. I think it is pretty common to have some when weaning a med. Hoping you are doing better now!! Hang in there!

shelbe

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Thanx Posted: 02-09-06 17:42pm


Thanks alot.I'm really really cr*p at the moment.Fingers crossed,i'll be feeling better soon.I'v managed to get an appointment to see my consultant in a couple of weeks.I wasn't due to see him untill april.I'm gonna nag him for some more tests.Maybe a sleep deprived eeg.I'll let you know how things go. Hows things with your son's?