New - Newly diagnosed JME
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UPDATED: Sat, 09/01/2007 - 4:32pm
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Dar51
From Depakote to Keppra... Right or Wrong Choice?
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Okay, Hi, Currently I'm 19 years old, and I've had JME Juvenile Myoclonic Epilepsy for about 4 to 5 years now. I'm currently on Depakote ER and have been ever since my first seizure. Its worked well for me since I havent had another seizure since Ive been on it. What I dislike about the medication has been the side effects. Mainly the weight gain, in such a short period of time ever since Ive been on the medication. So,recently Ive had to change to a new neurologist and she has informed me about Keppra. Basically all she has said is that the side effects are less, weight gain is not among them, and that if I wished she could change my medication from Depakote to that of Keppra. She said it was my decision and I should look up some information about the medication on my own to help me make the decision. So that's basically what Ive been doing, but Ive decided to ask for the the opinion of anybody who has or is on Keppra or Depakote, since from what Ive seen Keppra seems like a good choice but Ive read about many people who it hasnt worked well for. And well my seizures have stopped with the Depakote, but as I said side effect... So I would appreciate any advice on the matter that any of you could give me, and thanks.
By Dar51 at Sat, 09/01/2007 - 4:32pm | 742 views | 48 comments
Topic: Medication Issues
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Recent Comments on this Discussion
Hi.. my son is 11 and he started taking Keppra after his 2nd sz a few months ago. We chose Keppra because of the little amount of side effects and the fact that there was no blood work needed to check levels (thought he'd be able to deal with it better). He has tonic-clonic seizures. He proceeded to have 1 sz. per week, even though we bumped up his dose after each sz. We are in the process now of weaning him off Keppra, because he started Depakote about 10 days ago, and thankfully he has not had a seizure yet. So for us, it did not stop the seizures, but as far as side effects, we really didn't notice any. Now that he has been on Depakote, I do notice that his appetite is bigger...but he's small for his age anyway so a little extra weight wont be so bad!!
its going good
john
Hi,
My son is 18 and has jme he was on keppra but it didn't help his seizures, but now he is on depakote er and hasn't had a seizure in 7 months. The only problem is the weight gain, but he was too skinny anyway.
Hi my son is Keppra also...he has had 3 tonic clonic seizures and his eeg was abnormal. He has been diagnoised with absent seizures, his doc wants to out him on depakote. I am not sure what to do. Any suggestions? Justin had his first seizures 12/2007. We are still learning about E. Thanks for the information.
Kristy
Hi,
I have the same type of seizures as your son. Just not as often anymore. I am currently on Epitol (Tegretol) and Dilantin. They are a good mix if you have seizures ranging from Absent to Tonic-Clonic. Sometimes is all depends on the age tho. But this mixture works for me. Keppra did not. I had violent mood swings at any little thing. Topamax did not work for me either... however i got the one rare side-effect... Aneroxia, I never wanted to eat while on that pill, but it still helped control my seixures..
Good luck! :D
Lori
KR26
Hi Kristy, responding to your message... My son who is now 5 yrs old, started taking Keppra about 1 1/2 yrs ago. His doctor was constantly increasing the dosage due he was having still having seizures (tonic clonic). Then started having JME. Finally, his doctor decided to change to Depakote and he is doing very well. We have not had to increase the medication. Seizure free. He has been taking Depakote for 10 months. He has had his blood taken twice since beginning the new medication to check the levels of Depakote in his system and to check his liver. My son's doctor advised that at his age there is no big concern with any problems. With all that said, Depakote is really, really working well.
KR26
Well my son first took Depakote it did not stop his seizures but did however give him 60# of unwanted weight in a very short time frame. Then onto Lamicatl still not stopping his seizures, and he was extremely tired all of the time. Then he was placed on Keppra, it magically stopped his seizures but gave him the disposition of a rattle snake and terrible anxiety, however vitamin B6 is seeming to help that. He has now been placed on Topamax, and has not had any seizures, but he is still on Keppra too. But remember what works for one person may not work for another. Good luck on making you decision and with the results.
Kim
Hi Kim, wondered what kind of seizures your son was having?
he has absence seizures and now possibly another type. Plus he has a cyst on his brain. All i do is worry. Thanks for takin the time to write me.
Kim
Hey Dar51,
I too was diagnosed with JME when I was 14 and was pretty well controlled.I was on Depakote ER(800mg).I had even been seizure free for the past 3 years before my new neurologist switched me to Keppra.
While on Keppra I had a number of seizures and was extremely emotional.After each seizure,my dose was increased but it was'nt of much use.After my last seizure,Lamictal got added on.But I had yet another seizure 2 days ago and am currently waiting to meet my doc.
Hope the doc agrees to switch me back to Depakote.The only side effect of Depakote which used to really bug me was the increased hair loss.Thanx to my great metabolic rate,the monstrous appetite does'nt seem to be affecting me too much.
Basically,one thing you've got to keep in mind is that AED work in different ways for different people.So do think it out well before you take any decision.Good Luck!
Hi, I wasonce on Depakote when I was first diagnosed. I also suffered with hair loss and weight gain. Unfortunately, due to these side effectd and ignorance we decided to stop medications and for years i just dealt with the absence seizures. I had a Grand Mal 3 1/2 months ago and am now on Keppra. The side are effects are definately not as severe for me although there are some. Irritability, tiredness but they usually seem to decrease once the dosages level out. I have not been on it long enough to know alot about it but I thought I would share the diff. in side effects. My seizures (absence) are still not totally controlled, just increased Keppra today!!!
everyone reacts to meds differently so there is no right or wrong answer. i have taken depakote and for the 10 months or so that i was on it my hair kept falling out and terrible hand tremors. i am on keppra now it caused some sleepiness in the very beginning and moodiness. some people have no side efects on either med. some have really bad side effects because their bodies cant tolerate a particular med.
so what it comes down to is the side effects you are having now bothering you enough to try a different med? if it does, then give another med a try. a lot of the newer meds are great with less side effects according to my epilepsy specialist. there are some people though who do better on the older meds. every body is different as i said. i pray that you are able to come up with the right decision for you since none of us are qualified to do that. only you and your neuro are able to make together. if by chance you decide to try it, remember you are not making a life long commitment. if it doesnt work, you and your neuro will have to sit down and discuss options. if it does work for you then great for you.
i have had epilepsy all my life, abscence till 25 when i had my first grand mal. i was under control for 20 years. right now i am uncontroled for the last 5 years so my former epi spec and i have gone thru different combos of meds till he gave up. i started seeing a new epi spec in oct, and had my zonegran switched to lamictal which i was able to think clearer on than i have in years. i also am still on keppra but because of my type of epilepsy which is primary generalized, there is research that lamictal and topamax have a chemical reaction that makes it control my type better, so i agreed to try this combo and will be weaned off keppra and put on topamax. i figure if it doesnt work or the side effects are bad than i can go back to keppra with the lamictal. so you see, we all have to make what ever decision we feel is in our own best interest.
God bless you, i wish you all the best,
banffgirl
Amy I am 48 years old and had my very first sz at 46.....out of nowhere diagnosis idiopathic Epilepsy left temporal lobe. I was sz free for a year and a half on only Lamitical and had two more sz . I was then tried on Keppra 1000mg daily.....great drug, safe drug and sz free since 2006. I highly recommend Keppra over all these other old drugs and a leading top NYU Neurologist has prescribed it. Initially I felt tired but your body adjusts...some mood irritabilty but I rather be irritable a little tired then have seizures. It's a very well tolerated drug, but everybody is differentAny questions feel free to email me @ rentingoneny@aol.com
Hi Dar51--
Some brief background: I had my first grand mal (idiopathic) when I was 16, and then 2 more when I was 19. After the third, my neurologist tried several medications (that was an interesting few months) and we settled on Depakote in early 2000. I didn't do so well on the regular tablets (still had frequent auras), but switched to ER in 2004 and have been seizure-free except for some very rare partial complex seizures. I'm 27 now.
I've been able to keep the weight problem in check by eating very often (every 3 hours at least) but in smaller amounts (I'm hungry all the time). Plus, I have to do the low carb, no pop, no junk food, etc. approach. But it has worked, and my family has really low metabolism. Other side effects: hair loss, tire more quickly during physical activity, occasional confusion (rare), occasional dizziness/faintness. I've found as I got older that getting 8 hours of sleep, really watching my diet, and avoiding stress have a BIG impact on Depakote's effectiveness and side effects. I was told this when I was younger but sort of ignored it. Also: I limit computer use--for some weird reason that has helped the hunger/weight issue that seems to come with this drug.
I have a friend on Keppra who has complained of many of the problems others listed here. And less seizure control. So--be careful and good luck. For what it's worth, I'll be getting my PhD (and have a law degree) at a very good school in a couple years--couldn't have done it without seizure control. If you can stay seizure-free on Depakote ER, I'd go that route.
Dar51,
Keppra does have some track record of being effective in treating JME (from what I've read), but of course your results may vary.
I'm on Keppra for tonic-clonic (possible partial complex, they aren't sure) and things have been fine I guess. Its only been 2 months.
I'd work with your neuro on it. Its certainly worth a try, but I'd hesitate to change if the depakote is keeping you seizure free. I'm hopeful keppra will achieve that for me but only time will tell.
Good luck to you.
Lance
In the U.k they have to put a leaflet in every box of meds that you have been prescribed explaining every thing about the drug. So here goes I'll try to keep it as short as possible.
1 whats it used for
Its used alone for partial siezures from age 16
keppra is used sometimes used with other AED'S
In partial seizures from 4 to adult
In treatment of myoclonic and juve myoclonic from 12
In treatment of primary generalised tonic-clonic from 12 to adult.
2.not recommended under age 4 No take if allergic to ingrediants of keppra
If suffer from kidney problems your dose may be adjusted. There is limited experience on long term effects on children. If number of episodes increase or gets worse contact doc. Tell doc if you have been taking other meds.
Do not take with alcohol. Keppra unless really necessary should not be taken while pregnant, breast feeding not avised while taking
Keppra may make sleepy to begin with or after an increase in dosage.
People over age 12 and above who weigh 50 kg or more General dose should be 1000mg to 3000mg i.e 1000mg equal 2 tabs morning 2 tabs at night at 250 mg tabs. children 4 to 11 and those under 50kg 12 to 17 general dose 20mg to 60mg per day
contact doc if take more than recomended or less don't take double dose to catch up if forget to take. If coming of keppra it should be done gradually like all AED'S to avoid increase of episodes.
4. Very common side effects 10% or greater, sleepiness and tiredness.
Common side effects 1% to 10% or greater, Theres lots of these. Nervous system disiorders: dizziness, convulsions, headaches, hyperactivity, ataxia, tremor, amnesia, balance disorders, loss of concentration, forgetfulness. psychiatric disorders: agitation, depression, mood swings, aggression, insomnia, irratibility, behavioral problems, thinking abnormally and unable to concentrate. digestive disorders: abdominal pain, nausea, indigestion, diarrhoea and vomiting. nutrition disorders: anorexia, weight increase. ear disorders: vertigo. eye disorders: double vision, blurred vision. Muscle pain. Accidental injury. Infections: infections, nasopharyingititis. Respiratory disorders, cough. Skin disorders: rash, eczema, pruritus. Blood disorders: decreased nmber of blood platelets.
Other side effects reported: tingling, abnormal behavior, anger, anxiety, confusion, hallucination, thoughts of suicide, pancreatitis, hepatitis, liver function test abmnormal, weight loss,hair loss, decreased number of red and white blood cells.
If any of the side effects get serious inform doc if any other not listed inform doc. Some side effects may decrease over time.
I hope this was helpful I no longer take it I had quite serious side effects with it but you or others may not
plopdan u.k
Hi. I have had JME since I was 10yrs. Started as absence seizures, was put on medication for two years and the seizures stopped. When I was 19 and training as a nurse I developed tonic clonic and myoclonic seizures. I was put on Depakote which controlled my seizures fairly well as long as i had enough sleep and no stress. I did,nt have very many side effects. I came off all medication whilst pregnant with my three children and went straight back on it after they were born. I had developed poly cystic ovary syndrome (PCOS) which meant I had some problems getting pregnant, and also get very painful cysts from time to time. My neurologist told me 5 years ago that PCOS is a hugh side effect of Depakote. Hard to know whether the mood swings are associated with medication or hormone imbalance. He decided to switch me to Lamictal at first which I did not tolerate well. Marked increase in seizures. He then started me on Keppra which I have been on for 5 years now. I am now 47. I have been tolerating it very well. Only downside that I can relate is that it has a very short effect in that it has to be taken regularly. ie every 12 hours or I immediately start getting myoclonic seizures. I found with Lamictal and Depakote that if I forgot to take a dose it did not impact greatly. No so with Keppra. However in the rare time I do forget I immediately take it and also 5mg valium to stop the myolconic jerks, rest for 1/2 hour and I am good to go again. My 14 year old daughter has just been diagnosed with JME also. There is a high heredity factor with JME. I was devastated when I found out but she took the diagnosis quite well. She was happy to know what was wrong and figured that I manage to have a normal life so she will too, I hope that she is right. she has been started on Lamictal and is tolerating it quite well. She gets tired easily and I try to make sure that she gets regular sleep. That is the key to controlling seizures of JME. As previous posts said, try different meds until you get one that suits you. there are none without side effects but the newer med do have less long term effects and it is no harm to try. Hope you are doing well and remember from one who has been there, at nineteen it is hard because you want to be out at night with your friends and you want to be able to drink alcohol and be the same as everyone else but lack of sleep and alcohol will affect you much more than the meds. For me the answere is moderation and that is what I am trying to pass on to my daughter. Best of luck.
I had a very similar experience with Depakote ER-- controlled my seizures well, but the side effects suck. I gained weight and couldn't lose it no matter how much I worked out or how little I ate. I was tired, all the time, which makes it hard to work up the desire to work out especially in college! However, I thought, if it controlled my seizures it was worth it. I was on Depakote for about 7 years seizure free. But, I had my son and then found out how lucky we were that he was healthy. There are huge risks of birth defects with valproic acid. I didn't know how huge the rist was until it was too late, but I switched right after my son was born since I knew we wanted another child. Luckily my kids are healthy, but I would say that if you want to have kids someday, switch to Keppra beforehand. Until then, if you can live with the side effects then its your choice. Having been on only keppra for about 4 months now (I was on Lamictal after the Depakote, but it didn't control my seizures), I think the side effects are minimal. Best of Luck!
I am 20 yrs old and have JME. And currently I am in the same situation as you. I have been on the Depakote ER since about 13 yrs old, and it worked out great. It is a great medication, but like all meds it has it's drawbacks. Are you planning on having chidren? You ahould ask your doctor about future planning. Today I found out about Keppra from my doctor, and she recommended it for me for those reasons. Depakote is great at controlling seizures but it is linked to birth defects in babies born to mothers on that medication; also it affects your liver; and it increases the chance for Ostoeporosis to develop. You should really talk to your doctor about future issues that will come while being on either medication. I do have to say that you have to think about your future first before making this decision. Since I am starting to change over to Keppra, I will keep you posted on anything I learn or experience. I hope this helps!
Good Luck!
Hey, I am having the same problem with Depakote ER. I have JME and I have been on Depakote spinkles since I was 17. My doctor tried to switch me last year to lamictal so it would be safer for me to have kids on since I am now 27. The switch did not work and I had arm jerks everyday so he put me on depakote ER and it works great except I gained 30lbs out of no where! He said we could try keppra later on after I let my body have a break from all the med changes. He told me to research keppra and think about it. i don't know much about it but am curious if any women have tried to have kids on it. I know your probably not thinking kids yet but it's something to consider when your changing medicines so later on you don't have to worry about changing again.
Alicia
hello! i'm 20 and i've had seizures since i was 12-13. i just started taking keppra two weeks ago when i got to my third neuro. i tried depakote before but it didn't work so i switched to valproic acid(epival) but my dosage was very low and there are still seizures. aside from the seizures, the side effects of depakote and epival are almost the same..., the weight gain and i also had hormonal imbalance. so my new neuro prescribed keppra. i just felt sleepy and dizzy the first three days in the morning. now i just feel dizzy at times, just seconds. and i'm still sleepy but my appetite changed and i'm currently monitoring the hormones. i also feel more moody and irritated now but that doesn't bother me since i haven't got seizures despite the stress and lights and lack of sleep these past few days.
Hi!
Ok, I don't know how much weight my answer is going to have- Everyone else seems to be writting huge long posts, and I'm not going to do that....
But I will tell you, my experiance with Keppra was ABSOLUTELY AWFUL. I'm 16, and while I was on keppra, I attempted to kill myself twice, and I fell into a deep depression. Those are big, big side effects of Keppra. I'm on depakote right now, and I'm actually losing weight, lol.
So, just keep that in mind... That doesn't happen to everyone who goes on Keppra, but it does seem to happen to a lot of younger teens and adults who go onto Keppra.
Blessings!
Megan
i am 17 and i was diagnosed with JME about 4 years ago. i was on depakote and gained a TON of weight. then my doctor put me on keppra, and it worked for a little while until i started having partial seizures again. They put me on the highest dosage of depakote, then addes zonagram. A year later, because of the weight gain i'm just taking zonagram and am doing great.
I'm 46 years old, and have had twitching since in high school, but did not have a grand mal seizure until the year 2000. I was put on Depakote, then Depakote ER. Recently, my doctor switched me to Keppra, for some of the same reasons you have all said - less side effects. No weight gain, no blood tests needed, etc. HOWEVER, there is one terrible side effect - the thought of suicide. It took a while for the thoughts to creep into my mind. The nurse had warned me about this, but thought it was only in older (older than me) patients. I have a little dog who is the love of my life, and at times, the only reason I get out of bed. While on the Keppra, I had come up with a plan that would take me and my dog at the same time. That's when I realized that the Keppra might be making me think this way. I called my doctor who immediately took me off the Keppra. Since then, I have not had any thoughts of suicide. Seems the older patient you are, the stronger this side effect may be. Keep this in mind for the parents of young children on Keppra. I had read about Keppra before I started the medicine and did not really want to get on it. I'd rater be fat and alive!!!
I started with pheno when i was 15 because it was affordable. I couldnt stand the side affects after a while. I would fall asleep while playing basetball and was drowsy all day. I was then switched to kepra when i was 18 after i refused to take any medicine that interfered with my life so much. At first the medicine did its job, not perfect but at least no serious side affect that i could see. After 2 months kepra reared its ugly head. The side affect i experienced was emotional, it sucked worse than the drowsiness. I felt like i was outside of my body because that person wasnt me. I remember going into fits and laughing at myself because i thought "who could be this bitchy" but having no control over stopping it. To me it wasnt my fault, it was everyone elses. I took it for a year and a half until my doctor said there might be something else that doesnt have those side affects. From 20 years old and on ive been on dilantin. it has its porblems for me, insomnia mainly but it is a welcomed side affect from sleeping to long or a bed thats too hard becauase it doesnt like me. Dont take kepra. It controls seizures as well as a good nights sleep :/ and has side affects that resemble behaviors of a teenage drama queen.
I think Keppra would be a good choice. I have been on Keppra since 2005 and I have done great on it, until recently a pharmacist changed me to the generic made by Mylan without authorization of my doctor or myself. The generic made me put on some weight in a short length of time but the brand name did not. I hope this helps.
My son was diagnosed 2-1/2 years ago with JME. After testing confirmed it, he was put on Depakote. He was 14 at the time a growing quickly. They had to keep uping his dose has he grew. The problem that arose was that he also gained alot of weight. 80 lbs the 1st year, another 40 the next. He was always tired and practically slept his Freshman year away. It didn't help that he broke his leg once when he had a seizure. When he finally got to the full dose of Depakote, it worked great. No seizures for 2 years. His weight gain became an issue and we found that he had sleep apnea and metabolism problems associated with it. The neurologist advised us to try Keppra. We switched over and he experience atonic seizures for the 1st time while we were switching over. These scared us to death because they were different from the myclonic ones he had had in the past. They have continued to up the dose of Keppra but he is still having seizures about 1 each week to week and 1/2. He loves losing weight since he switched and he said he just feels better and has more energy. He is getting depressed about having seizures again, and the fact that they are much worse and he never knows when they will happen.
One point I wanted to ask, has anyone ever noticed seizures happening more when around wireless electronic equipment. Every seizure he has had since on Keppra happened when he was on our wireless phone at home or in front of the computer. Different times of the day (mostly in the evenings though) but the only common thing we can find that could be a trigger. Please let me know if you've ever seen a corrulation or had your neurologist mention a tie in. Thanks.
I was on tegretol and lamictal and my neurologist took me off the tegretol and left me on lamictal alone but it wasn't enough so he added kepra. I like the kepra but my doc says it is best used in conjunction with another siezure med. I like the kepra. Once you get to the level you need it is great. I have had no side effects.
Like the others have said, everyone is different in the way they react to different meds, but I believe this is worth it. I have the jme and have had for years.
Good luck on your decision.
I have been on depakote before but it has been a long time and it didn't work very well at all. I believe I was told that it is best used for younger people but that was a few years ago too.
Hello,
I have Myoclonic Epilepsy and I'm on Keppra and Lamictal. I was just on Keppra at first and my side effects were depression and bipolar disorder, then my doctor prescribed me Lamictal to take with Keppra (Lamictal is also used for people with bipolar disorder). However, depression runs on my mother's side of the family so that increases my chances of that side effect. Overall even when I was just on the Keppra, it worked great for me and I didn't have any seizures. Everyone's different though.
My new neurologist wanted to get me on just one medication instead of two, but it was up to me. I told him I wanted to be just on Lamictal and I told him the reason why. Also, being that there is a generic brand of Keppra and Lamictal, my insurance only covers the generic brand. He told me the generic brand of the Lamictal would be fine for me to take but he was a little hesitant about the generic brand of Keppra; and I can't afford to buy the name brand every month.
I know how you feel, I'm slowly coming off the Keppra and he increased my dosage of the Lamictal. I still worry a little because I was on Keppra by itself and I know I'd be fine on it (seizure wise) but I was never on Lamictal by itself, so it's a little hard for me to get use to. Good luck!
I was 19 when I had my first seizure. It wasn't until I was almost 20 that I was actually diagnosed with JME and put on Topamax and Keppra both. I started having side effects from the Topamax and had numbness in my legs/arms and really bad headaches. Then my doctor said to try just Keppra but that didn't work either because I started having seizures more often, once was 2 in 2 days, so a new medicine...Depakote ER was prescribed. I have now been on Depakote ER for almost 1 1/2 years and I know what you are talking about the rapid weight gain but I have also been seizure free for nearly 10 months. To offset the weight gain, I have put myself on a healthier diet and my doctor told me to use a minimal dose of Topamax (which helps control appetite) and that has worked for me. I am losing weight and keeping it off. I personally am willing to put on some weight in order to stop having seizures.
I am hoping that you figure something out that works for you with the medicines, the weight control, and your seizures.
Good luck,
Molly
Hi! I, too, have JME and have had it since I was 16. I am now 33 and have been on many different AEDs, Keppra and Depakote included. I tried Keppra 2 years ago but had to come off it after a matter of months b/c of the severe depression it caused. I was also on Topomax at the same time. As far as I have been told, it is not a single drug therapy for our type of epilepsy. I did not have seizures while on the Keppra and Topomax, but the Keppra made me cry at the drop of a hat. Now I am on Zonegran and Depakote. I couldn't take the side effects from the Topomax any longer after many years. I noticed a few pounds with the loss of Topomax and the addition of Depakote, but my threshold for side effects may be different than yours. I also made the decision to eat very good and excercise. Weight gain I can handle, it's every other side effect that our little pills bring that I don't care for. So take care, the grass isn't always greener...
Hi, i felt i had to comment on this post, because i did the same thing. i went off the depakote and switched to keppra because of the side effects. i was diagnosed with jme at the age of 12 and my highest dose of keppra was 4000mg a day.
The keppra wasnt working as good as the depakote and i had been working long hours as a nurse and am a single mom. last month on march 18 i was driving my daughter and nephew to school and had a grandmal seizure while driving. my nephew and i were lifeflighted and my daughter has two broken bones and had a perferated small bowel which required immediate surgery. my daughter and i spent a week in the trauma unit with multiple injuries.
although i was hoping for a decrease in the side effects (i did lose 10 lbs after i went off the depakote) and my hair got thicker, i would have NEVER thought something like this would happen, and my life is turned upside down. i am living with my parents because i have not recovered from my injuries yet and my daughter is living with my husband and his new wife (yuk) because i am not able to care for her yet. no driving (6 months) means no working and no income.
i understand that everyone is different but please take into consideration (esp at your age) how much sleep you will NOT be getting, if you will be consuming alcohol etc. i'm so very greatful that we made it through the accident and wish you gods blessings and good health! Kim.
I had switched from depakote to keppra about a year ago because of the side effects also. i was dx with jme when i was 12. although the depakote was working fine i was hoping to lose the extra weight i had put on and get some of my hair back etc. my neuro cont to increase my keppra up to 4000mg a day because i continued to have absence and myoclonis.
last month on march 18 while i had my 11 year old daughter and 9 year old nephew in the car (i was taking them to school) i had a grand mal seizure while driving and hit a tree. we were all life flighted and my daughter and i spent a week in the trauma unit with multiple injuries.
i understand everyone is different but i would seriously research as much as possible. i was a single mom and a nurse but am now living with my parents because i havent recovered yet from my injuries and my daughter is living with my ex husband and his new wife (yuk) because i am not yet able to care for her. no license means no working/no income. also esp at your age (i don't know if you are in college) but you also have to consider if you will be sleep deprived or consuming any alcohol (those were huge triggers for me). good luck and good health!! kim.
I had my first grand mal seizure at 4 yrs old (so 38 yrs ago) and i was born in Europe. The choice of medicine back then was valium. I don't remember much of my childhood being basically on a valium high until I was 12. Then Depakote cam into my life and halleluja I was part of the living. It was a god sent to me and I was on it since then. As a typical teenager who didn't know anything I stayed up with the best of them, I drank alcohol and was sloppy with my meds and had "good days and bad days" with my seizures but all in all if the did the right thing I was seizure free. So here I was living a normal life, got a drivers license, moved to America, met a guy, got married, had two kids, got divorced, raised my kids, had a job..you know lived a normal life. Yes I was tired alot but who isn't, yes I always wore sunglasses to protect myself from unwanted strobe light effect like blinking sunlight through the trees which triggers me. I sleep with curtains open so my brain becomes accustomed to light while I sleep instead of waking up in a dark room and suddenly get confronted by harsh light in the morning but hey all was well. I was getting heavier with every year but hey I was getting older so who isn't. I got my meds from my regular doctor and didn't see a neurologist for 15 years. All was well and no seizures. Then I hit 40 and suddenly my weight gain increased DRASTICALLY (TO THE TUNE OF 45 lbs in a year) hypothyroidism was suspected, my heart was giving me trouble with irregular heartbeats, my ankles and fingers became swollen and the slightest thing would set me off in a screaming rage. It and I was scary! My regular doctor kept telling me I am getting older and I probably am showing the first signs of "the change" (at 41???). Well I finally went to a neurologist and it turns out my body was becoming toxic and my brain was on overload. So off the depakote right away. Hospital etc. and on I went on Zonegran. Dropped 25 lbs in two months but mostly because my body went nuts on the sulfur. Could only eat green vegetables and nothing after 2pm if I wanted to have the slightest chance of sleep. Had a disassociation episode during the intro phase (meaning I thought there where two people in my body which lasted for three days...not fun) and still tried and tried. Last weekend was the straw that broke the camels back. After beeing unable to sleep for 5 days, afraid to close my eyes due to irratic racing thoughts and visions that wouldn't stop 24/7 I called my doctor and told him "I am out". I tried but it just doesn't work. I had to take medical leave (not the best time for that in this economic environment) and wait three more days for the high dose to leave my system. Am on half the dose right now and will sit down with my doc to discuss other options.
Sadly the whole thing is a trial and error and your sons chemical make up in his brain will be the driving factor of what will work for him and what will not. There is no such thing as a good epilepsy medication but only a "good epilepsy medication for you right now". I was a happy clam for almost 30 years on depakote and I would wish I could go back to that but I can't. Now it's time to find the next solution that works for me. All we can hope for is that we find the best solution for us or our children sooner then later.
Wishing for you and your son that you find what will work for him for a long long time.
I am a 28 year old woman. I had my first sz at 15 i have tonic clonic szs and i was sz free for 7 years on depakote. My neuro swtiched me to lamictal 3 years ago bc being a woman and being 25 at the time i would be getting to the years when i would have children. So far i have had three sz in 3 yrs. now i am in the process of switching to keppra. I am not sure either whether switching to a new medication is the answer or if going off depakote was the right answer. I hope this will be the right choice for me. for now though I am just trying to weigh out the pros and cons of being epileptic and how i feel on medication and having children. it's not an easy balencing game but it is a necessary one.
Hi, I was on Depakote ER for several years up until this last October. I switched to the Keppra and I take that and Lamictal and the combo is great. In the short period I have been on the Keppra I have had no seizures and lost a total of 20 lbs. I totally understand the weight gain problem it bothered me too and when I was on the Depakote I began losing my hair and I was tired all the time. The Keppra helped to get my life back on track. I have way more energy than I have had in years and my hair is finally growing again..Life is Good..Good luck I hope that you make the switch and works as good for you as it did me.
Hi......I am 25 and last October I made that exact switch..I was on the Depakote ER and now I am on the Keppra XR and it has done wonders for me...I have been seizure free and lost 20lbs within a few months. When I was on the depakote my hair had started to fall out and now that is growing back in and I could'nt be happier. I know making the decision to switch meds is scary I had a hard time making it too..but if you think it will help you and make a change in your life it may be worth a try..Good Luck and let me know if I can help at all ~Danielle
I loved depakote people hate it bc they say they gain weight and their hair falls out. I had no negative side effects. I am in the process of the switch to keppra right now bc lamictal didn't work for me. It's making me crazy. The worst part is that I know I am crazy. I noticed some of you mentioned you had emotional side effects. I have been told it will get better once my body gets used to the new meds. I have a friend on Keppra and she seems to be doing much better now then when she first started it a few years ago. I know it comes down to every one is different. but... Also I am going to be on only keppra for a while and i know it is usually used with other things but i don't like being on a lot of medications have any of your doctors pushed you to only take keppra if you were on other meds at the same time? Thanks!
Also I am newish to the site and it is really helpful. I am so glad you all are here!
I have both juvenile myoclonic epilepsy and tonic clonic (grand mal) seizures. I was on Depakote ER for 10 years. I also hated the side effects, but it did control my grand mal and most of the time it controlled my JME. I am 23 years old now and in a serious relationship. I decided to switch to a med that allowed me to have a child... just in case! So, I changed to Keppra. Keppra does wonders controlling my JME, but my triggers for my grand mal seizures have changed. During the first month on Keppra, I was more emotional and irritable. Also, very anxious, but that is all decreasing. My doc told me that this was most likely because Depakote controlled anxiety and I am most likely in wdl. I am much happier on Keppra my JME is totally controlled and I have already lost weight! One thing to note is; when I started Keppra I was on the regular release... and I was very tired. I brought this up to my doc and she changed my prescription to ER(extended release) so it didn't hit me so hard, therefore, potentially decreasing the tiredness. It made a huge difference in a positive way! Good luck on making your decision. My advice is... don't let meds control your life. Just because your seizures are controlled, the side effects can be unbearable! Try to find your perfect mix of both! BE HAPPY!
Jus t wrong
Keppra even has the XR "time release" version now which is what my doctor moved me to a month or so ago. I have been on Keppra for the last 5 years now and look forward to several more controlled by the Keppra XR.
I wus on depakote to at one time and it didn't work. I also gained alot of weight and it made me throw up all the time. Keppra works alot better. No weight gain but u will still feel tired. I still feel werid sometimes but that's life with ep. Hope this helps. I stopped taking my meds a couple of years ago and it wus very very bad. Don't do that. hope life gets better, ducky
hi dar 51,
I use to be on depakote also for several years then I started having all the side effects loss of hair ,sick to my stomache all the time and I shook so bad I could not even hold a cup of coffee i was really a mess then the dr. switchd me to keppra i do o.k. on it but the price is just so high even with our ins, I heard it was coming out in generic this year I hope it is soon.
I just recently was put on lamictal to help me sleep and with depression but it was terrible I could only sleep like 10 min. out of every hour all night so I went back on the elavil I sleep alot better now.
I have had epilepsy since I was 9 it started out as petit mal then went to grand mal so I have had it for 46 years!! I guess we are like and butter we would be lost with out the other.
I have learned to accept the hand of life that God dealt me, but now I have venous angioma which is a cluster of blood vessels in my head so now I wonder if it will cause more seizures?
take care
eppie
Eppie,
My husband has been on dilantin and depakote since he was in his teens (he's now 58). He has been almost seizure free-he had one seizure 13 years (was told his potasssium level was low). In September he began weaning off the old drugs and began taking Keppra. He had one seizure on 12/24, after he weaned off the dilantin completely. The Dr. increased his Keppra dose. He had another seizure tonight (2/5) (he is in the middle of weaning off the depakote). When you made your medication switch, did you experience seizures during your transition time ?
Aftter being seizure free for so long we are beginning to wonder if making the change to Keppra is worth it. (He made the decision to change because of the side effects of the other medication, in particular, the hand tremors)
Any thoughts from any of you out there would be greatly appreciated.
A worried wife
I have had JME since I was 13 and am now 54. I have been on every drug under the sun (I was a guinea pig all through my college years, because I was pretty resistant to control) but the one drug I have been on all those years has been Dilantin.
It and (for the last 15 years or so), Depakote have largely controlled my seizures - I went for an unprecendented 9 years without a grand mal (although the absence spells have nevernot been a regular feature of my life.)
However, recently I was diagnosed with "moderate" (meaning about 20%) atrophy of my cerebellum - and that is caused by Dilantin. I refused to go off of it years ago because it controlled my seizures - now I wish I had. I am switching to Keppra but have no real experience to give to you about that.
However, Keppra is not supposed to be a stand-alone drug for JME and really isn't heartily recommended to be the only drug for any type of epilepsy. I can understand your husband going off of Dilantin for Keppra, but also Depakote? I would get another doctor's opinion on that - I would not do it.
Hi
I am a bit over 60, and have had seizures since my mid-20s. I have taken every one of the meds listed here, plus a couple more. Boy, that phenobarbitol was a downer! My wife, who had not known me at a time when I was not on phenobarbitol said I was like a different person when I changed off of it. (Fortunately, she liked the new person better, or I would have been in deep trouble!)
All of the medications have side-effects, and work differently in each of us. I have been on Keppra, along with Dilantin and Klonopin as a "cocktail" for about three years now. Keppra has never been an issue for me, and I am very happy with it. No side-effects at all. (Maybe the weight gain has something to do with age and hormone levels?) Since about 1997 I have had to change my drug "cocktail" about every two years when one of the meds just stops being effective for me. Keppra has lasted the longest of any of the others mentioned, plus Neurontin.
I reccomend Keppra, but really, whatever works is right and only your own body can tell you what works and what does not. I am very lucky that I am largely controlled. I wish you all luck on your journey, as well as in finding a neurologist who you can talk with and who talks with you. And if you take Dilantin long enough, you will probably need to establish a good relationship with a periodontist.
Hi
I took phenobarb for 28 years before going to topamax. My 14 year old has the same type of seizures (jme and
grand mals) and was put on phenobarb but it did not control hers so the doc added kepra. The results were
not good it made her very depressed to the point of talking suicide. I would rather deal with seizures then see
my child go through the side effects of kepra.
I was on phenobarb years ago, until a really great neurologist told me
a.) it has extremely limited use in seizure control - mostly for emergency situations (it can be used to control status epilepticus, for instance) and
b.) it was entirely wrong for JME in the first place. I was actually on it for 13 years or so and getting off of it was the best thing that had happened in years.
I would guess that the problems your child had were from the phenobarb, although perhaps they were made worse by being combined with Keppra.
Find another neurologist - or even a good psychologist who also likes working with people with neurological problems (they exist and are often much better listeners and explainers than neuros!) and reevaluate the whole drug setup your daughter - and maybe you - have.
I am not promoting Keppra here - I have just started taking it, literally, a week ago - but try something besides what you described!