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    meredithc18 posted:
    He Ep community-
    I know ya'll have all the answers for whose on vimpat? Do you like it? hate it? The reviews I read about it don't sound too promising........
    I had my right temp. lobe removed 6/1/10 and I am on tompamax (50mg 2x day) and I have had at least two sz. and a few auroas since. Ugh!!!! Better than before, but not perfect. My neuro wants to try vimpat.....but I'm scared. I've been on all the others and have been we are running out of choices.
    love everyone's support!
    nanwake23 responded:
    I've been on the Vimpat 150mg twice a day for about 8 months now. I'm also on Keppra(generic) 1000mg twice a day. The Keppra helped with stopping the seizures but I also was still having auras. The Vimpat helped with that, but it makes me extremely tired at times, and makes me a little moody at times too. I dealt with the moodiness by taking B6 vitamins. The one major problem I have with Vimpat is that it is not generic and I have to pay almost $200.00 a month for it. I used to get a 3 month supply for that amount, but now that I moved to a new state I can only get one month at a time by law. It is a controlled substance. I've seen my new doctor and discussed all this and he is slowly weening me off the Vimpat and putting me on Lamotrigine. He says that they have found that it helps more to keep your mood even. I've only been on it for a week so we'll see what happens.

    Like I said Vimpat isn't generic, its a fairly new drug so it probably won't go generic for another 10 years.

    Find out what your insurance will cover and discuss other options with your doctor.

    Hope this helps.
    dancer86442 responded:
    Hello meredithc18,

    Seen ya replying to several posts. Glad you are w/ us.

    I always (or at least try to) have a response for everyone. This is my
    standard answer for questions like this. DRS can not tell us How we will react to any Drug! And we can't either. What works for one may not work for another. The Only way you will know If it will work for you & how it will work for you is to Try It!

    Who knows? It may be the med that eliminates all seizures for You! Go ahead & try it! You will know w/in the first few weeks if it's rite for you! But, try to give it 4-6 weeks. Your system just mite adjust to it.
    Just be sure to keep up w/ your Journal during the 'trial & error' phase.

    If you try it or Not, let us know how you are doing. Lots of Hugs!

    Love Candi
    sbncmo responded:
    Hi Meredithc

    I've been on Vimpat for about 3 months now. Depending on what type of seizures you have, it may work or it may not, just as Candi said. For example, Vimpat does NOT control myoclonic seizures - a real bummer for me as that is my most common. However, I have noticed a considerable decrease in other types of seizures. I still have sensory seizures & as I said, myoclonic. But that is much better than the 8 types I've been having.

    The reason I'm on Vimpat is because, like you, I have been allergic to all the others that have been tried. Topamax, Lamictal/Lamotrigine & Keppra were a some of the worst ones for me. But all of us are different & respond to med differently.

    I think it is good to research AED's because it is good to know what is in them. For instance, one AED that I have not been on has sulfa in it & I'm very allergic to sulfa. So knowing the ingredients is good, but try not to develop a fear of a med based on reviews of others. As Candi & I have both said, how one person responds is different to how another responds.

    Discuss your concerns with your doctor. If your doc still wants to try Vimpat, try it, keep tack of everything in a ep diary & let your doc know how it is working or effecting you. If you develop a reaction to it, just let your doc know immediately. Just don't be afraid of it as it may work without any problems.

    I know some people will read negative reviews for a med & will develop those negative reactions simply from a psychological fear - NOT everyone does that, but I've known a few that have had that problem. If your doc wants to try it, keep an open mind & don't be biased by others' reviews.

    Let us know how things go.

    meredithc18 replied to sbncmo's response:
    hey guys......well it has been 6 days on vimpat and so far so good...i am starting with 50 mg. 2 x daily and then increasing the vimpat and decreasing the topamax.
    thank you for all of the notes-good and bad! you are right, sometimes you read all the info about the drug and think all of that will happen to you. so far my insurance is paying for the drug, at least the first month, so we will see what happens after this.
    i have been allergic to every med i have taken but topamax and sometimes it takes a full dosage for the allergic reaction to happen so only time will tell. but this could be (fingers crossed) the magic drug!
    i will keep everyone posted.......i know all of us working together only helps each other!
    sbncmo replied to meredithc18's response:
    Hi Meridithc

    I'm glad you are looking at this positively. I understand how scarey it is to start a new med when you have reacted badly to everything else before. I hope the Vimpat works for you. Do you know what type(s) of seizure(s) you have? Certain AED's work for specific types of seizures. And like you said, you are running out of options - thus the vimpat - kind of a last resort drug.

    Let us know how it goes. And if you don't mind, let us know what type of seizures you have.

    dancer86442 replied to meredithc18's response:
    Hi Meredith,

    My prayers are w/ you. Stay positive. Eat Well. A Good diet is essential to our meds working & having the fewest side effects.

    Keep in mind your 'trial & error' phase doesn't really start till you are off the Topamax & on full dose of Vimpat.

    Love Candi
    meredithc18 replied to sbncmo's response:
    Hi Sheila,

    No problem! I fell off a horse in March 2003, hit my head and had one grand mal. Since then I've been having simple partial sz. and the dr.'s found a one inch scar on my right temporal lobe. i was in and out of the hospital (houston med center) for testings and we finally decided to have surgery this summer to remove the scar. I have been to the ep. monitoring unit so many times to monitor the sz. they actually would remember me when I showed up again, ha! With the combo of being allergic to every drug out there and being a surgicial candiate I really was an "open book case" and my surgery went perfectly. Since surgery I have had two sz. and a few auras so the Dr. just wants to make sure we get this under control and find a drug that I can stay on forever. Hard to swallow that after all of this, brain surgery included, that I will be on drugs forever, but if that helps me function in life and be able to have babies, then ok.
    Just one more hurdle and after brain surgery.....what's another medicine?
    meredithc18 replied to dancer86442's response:
    Thank you Candi,
    I read a lot of your responses to me and others, you are the "mother of the group" I have decided.
    I do try and eat well and exercise. My dr. said to try and cut down on the stress also, but I am a school teacher so that will be hard. ha!

    Thank you too for the reminder that I won't really know if vimpat works until I am off is just a waiting period and I hate waiting..........

    I will keep all posted though, because it could help someone else oneday.
    dancer86442 replied to meredithc18's response:
    Good Morning Meredith,

    Yes, I have been in Epland sooo Long that I feel like the 'mom'. We had a psych w/ us one YR & she, too, recognized the 'mother hen' in me. Personally, I just couldn't handle the fact that the ppl who visit us wouldn't have answers Rite away, if I didn't stick around. When I first joined I visited a few other sites & noted that the ppl had to wait mths for an answer. I swore I wouldn't let that happen here. So, here I am, everyday, cheking for 'new' questions, meeting Fantastic PPL & Always Learning something 'new'. As a teacher, I am sure you Understand.

    I appreciate you & Shelia keeping me updated. Especially since Vimpat Is one of the 'newer' meds available. Who Knows? I may need that 'input' If/when I need to make a change in my meds. And of course 'newbies' can/will benefit, also.

    As you probably already know: Best way to treat Stress is Proper Sleep & exercise. Or Yoga, music &/or even meditation. I am fortunate that my Life is pretty much Stress free. But, sooo many who have visited seem to have a problem w/ finding ways to beat Stress. I have saved several articles over the YRS on how much Stress (especially stress related to improper sleep) affects seizures. It really shocked me when our Newbie 'Always' claimed his DR said he felt Stress & caffeine wasn't causing his seizures. Then I thought about it. Stress & caffeine aren't a Cause, but, possible Triggers. 2 entirely different things. But, his Doc should have Told him That!

    So, what grade do you teach? Why do you find it 'stressful'? Or What makes your day stressful? I was just thinking, depending on the 'age group', you could actually get the kids involved in ways to help you relieve Stress. 5-10-15 min a day?

    Hate waiting? Well, take a Deep Breath! Cuz, it seems until we find Seizure Control, that's about all we can do. Time & Patience (you teach so that should come naturally ) will get ya there.

    Have A Good Day! HUGS!

    Love Candi
    sbncmo replied to meredithc18's response:
    Hi Meredith,

    Too bad about the horse fall. I fell off a horse once - landed on my butt & not my head thankfully. Head trauma can definately cause seizures, especially grand mal. You must have hit pretty hard for it to leave a scar on your brain! I'm glad the surgery worked & that you have few seizures now. I'm glad your doc is trying to find an AED to stop even those few seizures. Especially since you are a teacher. I don't think simple partial seizures would scare children if they saw it, but that's not really the point. As long as you have seizures, your brain is misfiring & can cause damage and that is what needs to be prevented - any further damage.

    I don't know if you have read my story. I've had seizures since I was a year old - no injuries or illness - just boom! & I started having grand mal & absence/petit mal seizures. Thankfully I don't have those types now, but I have plenty of other types.

    I see an epileptologist tomorrow. I've had 2 neuro's who tried about every AED available - alone & in combo's - but, like you, I've been allergic to most of them & some just didn't work. Trying to find a med you can tolerate is stressful in itself. Since you've been on the Vimpat for a week w/o any problems, it sounds like a positive note with the med.

    Usually I know I'm allergic to a med pretty quick, although I was on Lamictal for a couple of weeks when we went to Oregon & I kept feeling worse & I blamed it on other things - altitude sickness, fibromyalgia, fatigue, food poisoning, etc., until a few days after getting home when my pharmacist told me it was all from being allergic to the med. Before the trip my doc told me if I was going to have a reaction, it would be in the form of a rash in the first 3 days. When that didn't happen, I thought I was "home free". But docs don't want to tell us the possible reactions.

    You seem to have a very positive attitude & I think that is essential in dealing with ep, as well as what Candi pointed out about being healthy & reducing stress. Staying positive can be hard with all the allergies to meds, but you seem to have the right attitude - what's another medicine?

    Well, I hope the vimpat works & I hope you reach your desire to have babies. I have a son, 25 years old now, and he's still my pride & joy. I couldn't ask for a more caring & loving son than he is. He is very in tune to what I deal with. When we are together, he takes good care of me when my husband is out doing other things.

    Take care & keep us posted.

    nanwake23 replied to meredithc18's response:
    Glad things are going good so far. I'm on my last day of the Vimpat then uping on the Lamotrigine. So far so good here too. Like Candi said you have to try things to see if they work. I wasn't trying to scare you. Like I said my problem was cost of the drug. Not everyone responds to drugs the same way. Just keep track of your reactions to the drugs, no matter how small and let your doc know about them. Find out too what your insurance will cover. Sometimes you can get a 3 month supply through the mail for the same price of a 1 month supply. Keep us posted and hope things stay well.
    meredithc18 responded:
    Well, I'm on the full dose of vimpat now and so far so good.......body isn't allergic, insurance company is paying for it and no break through seizures since surgery........all good for now! If anyone else still has comments about it I would love to hear them!

    dancer86442 replied to meredithc18's response:
    Hi Meredith,

    6 Weeks! Then 6 mths, Then a YR & you will be good to go. Sure glad to hear there ain't no problems yet. Hope it stays that way for you. But, don't become a stranger just cuz you are seizure free. I know I appreciate having you w/ us.

    Love Candi
    meredithc18 replied to dancer86442's response:
    Thank you Candi,

    I have realized that all of my "experiences" with tests, multiple stays at the hospital for the video EEG, surgery, etc. can help others. So, I won't be far. I like knowing that everything I went through could help someone else make a decision about their experience, or let them know that they aren't the only one feeling that way or going through this! I guess it is the teacher in me..........


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