I take Lamictal & Clobazam already. I saw my Consultant yesterday and he has given me Vimpat Lacosamide to take. All he said was it is a new generation drug and would like me to take it along side my other medication.
What I'm concerned about are the side effects - Very common - Dizziness, Nausea & Double vision. Then the Long list of Common side effects - inc difficulty in articulating words, problems keeping my balance, blurred vision, depression, noise in ears, to name a few.
I am in my 30's and a single mum to a 7yr old (Partner left due to Epilepsy among other things) I am worried this will effect my ability to be a mum.
Also there is a warning as to side effects of Thoughts of self harm, attempt to commit suicide & loss of touch with reality.
Please can I have your experience / thoughts / comments / advise ......
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Diamond36
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Hi, the above medication appears to have many side effects. I would suggest you have another chat with him and advise your unhappiness to take due to the relevant side effects above. Perhaps your Consultant only wants you to take this on a trial basis, but this must be clarified if its for full time. Express your concerns to your Consultant... Maybe he can find another drug which would make you feel so much easier to take.
Hi diamond36
Medications are always are tough one to cover I find. The varied ways 1 single tablet can interact with the person taking it is quite a number. The side affect warnings are of course valid and very important to understand. But it's about preparation rather than expectation. Some of the Anticonvulsants used have side affects that include black outs and fits I always found this quite ironic. The surest advice is always to contact you neurologist or specialist nurse to explain your concerns and to ask them to be clear and manage your expectations with any change of meds. For you and all of use living with this condition it is something that the more we know the better it can be managed. I personally and this is purely my decision do not action med changes without going thru the specialist nurse or consultant first. I prefer the continuity of one set of non conflicting decisions being made.
Side affects are often listed as worse case scenario. My most recent change saw me start using something that could cause major mood swings, aggression and irritability. I think that over the first3 months I was slightly more sarcastic than usual and a bit more tired. But i did consult my neurologist and asked questions.
Speaking directly about the side affects you mentioned, if you are already having times when you find life or certain situations difficult to manage then worrying over these possible affects will make you feel more aware and possibly feel low because of it. The tablets will tend to make more of something that's already there. So if you do feel low then talk to someone.
Always helps me.
Very best of luck, chat to your gp or nurse and maybe post a follow up here after you have so we can see that your feeling more confident about things
I think you need to understand that the Patient Information Leaflet is obliged to include all reported side effects and this is worldwide. Most listed side effects will not be experienced and those that are will normally be mild and short lasting. But, as previous correspondents have said, this does vary from individual to individual..If you have particular concerns over specific side effects the advice should always be to consult your consultant, Epilepsy Nurse or other healthcare professional and seek their re-assurance.
Sorry forgot to say, my consultant only wants me to take these for 3-4 months. I'm not sure about the long term though. I think I maybe over thinking things as I am a single mother and worried about the more extreme side effects, self harm, suicide etc as Im not sure how they can be monitored.
I have a few other conditions so do suffer low times but also suffer some of the more common side effects already, so again worried how to monitor them.
My Specialist Nurse has left so I can't call him. I do have my Consultants secerity's number, do I call him on her number? My friends son, who is around my age, is a pharmacist. I have given her details of all the medication and dosage I take. I tried calling my GP, as there are 10 or so Dr's plus a few nurses I wondered if any of them have knowledge of epilepsy medication as I need to take to someone, they said they didn't unfortunately.
I have not started them yet and I'm out today but will try calling him tomorrow maybe.
I don't think its helping that I've just moved & my dads on holiday till the 4th as its making me fill a little lost & alone. Really appreciate you replying. Never really spoken to anyone else with epilepsy before.
I empathise with how stressful any changes can be and how isolated it is easy to feel. Your not alone though, we are all here to help. If you have a number that allows you to contact your neurologist then it's okay to use it. In regards to the medications and their possible, I do stress possible, side affects making those around you aware when you start taking them and explaining what to look out for is a great way of preparing for any eventuality. You mention monitoring, it's reasonably easy to keep an eye on things. If you have experienced any feeling similar to the listed possible side affects then you kind of know what to look out for. Keep it simple, stay active, talk to friends, involve yourself and keep talking to those around you.
Most GPs and some nurses have some degree of knowledge regarding Epilepsy. All professional advice is worth listening too.
Well I've decided to take the medicine. I've taken 1 a night for 2 nights now.
I spoke to a few people and looked at the leaflets for the other medicines. Thing is they don't have as many or as worrying side effects as this one apart from a sentance on the Clobazam leaflet 'Use of 2 or more antiepileptics may lead to increased side effects without corresponding decrease in convulsions'. But as said after talking to you guys and others everything has side effects and they have to list everything.
I've noticed I'm more tired, hard to get up in the morning & the daily auras have decreased, which is good. But nothing else at the moment. Oh and I'm starving all the time lol but that most likely has nothing to do with all of this lol
Also helps that my dad is now back from his very long holiday. I speak to him nearly every day and he said he will keep a close eye on me. He is a very honest person and if he notices anything I know I can trust him to say to me and can trust what he says.
Anyway I'm going to stop rambling. I'll keep you updated
I usually don't post online about medical decisions, as i am not a doctor. I do however want to put my two cents in on this conversation because my family has personally used Vimpat Lacosamide.
My daughter had her first seizure at 2 1/2 months old. She started having 12-15 seizures a day, everyday. We tried a list of medications, none of which ever stopped her seizures. They all had crazy size effects (Topamax - never wanted to eat, Keppra - slept 22 hours a day, Clonozapan - was a zombie all day). Finally, at 6 months old, her neurologist gave us a list of options to help my poor baby. After discussing surgery to remove half of her brain, the ketogenic diet, and Vimpat Lacosamide, we decided to join this study and start this medication. She was the youngest person in the world to ever take this medication, which was scary, especially after reading the list of possible side effects that have been seen in adults (it isn't FDA approved in children yet which is why she was part of the study). She started this medication in conjunction with her other medications and we noticed as her dose increased, her seizures decreased! We were eventually able to wein her off of all the other medications and she now only takes Lacosamide for her epilepsy. I am blessed to say that once she got to the maximum dose and off all other medications, her seizures completely stopped! We were amazed going from 12-15 seizures daily to nothing! She has now been on Lacosamide for 11 months, and has been seizure free, yes I said seizure FREE for 10 months! As for side effects, it is hard to tell because she is still a baby, but I can say that she is awake when she is supposed to be, sleeps when she should, eats normally, and is totally alert and developing great on this medication! Vimpat Lacosamide has been a blessing to my family and has given my daughter a normal chance at life. I'm glad to see you have decided to take this medication and I hope it helps you as much as it has helped my daughter!
Thank you so much! Each person's brain is different! But this is encouraging! It is a year now that I am on Lacosamide. Since I then reduced my Keppra to 2000mg a day, and on 350mg a day on Lacosamide - I am much better than I- used to be - probably the best yet! I have had epilepsy all my life - now 47 and have been on literally all medications possible. I am having so few seizures now - only when I use my brain muscles when concentrating hard and also when there is a lot of noise. But whether that is due to the epilepsy or not, I don't know. As soon as I stop concentrating or focusing hard, then the seizure stops - but whether it is definitely a seizure or not, I am not sure, because it is like as if I avoid it! I bet you had a tough decision to make - your daughter being the youngest person in the world to take it! Take care and God bless you! Monaco
I have just had my follow up appointment with my consultant. We have agreed to stay on Vimpat but increase slightly. He said this drug needs to be increased slowly & needs to be monitored for longer before making a decision. So he wants to see me in 4 months time.
I have been having a few side effects, but ones i can live / learn to live with as it has made a difference being on the medicine. If that makes sense.
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