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Side effects from Epilim

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Hi, My son he'll be 5 in July, He was diagnosed with epilepsy when he 2 weeks old, he was put on phenobarbitone, he was on it for 3 and a half years, was great for him he was sz free for nearly 2 years, but the month before the 2 year mark he started having sz again, eventually they took him off that and put him on Epilim and my god have things changed since on it, it started off with little things like fallin asleep in pre-school which he only goes to for 2 and a half hours. Then the behaviour problems. He has other problems other then epilepsy, but what they told me at the beginning hes after proving the doctors wrong he was doing so well in his development but since starting on the Epilim its gone down hill,he cant get through 2 and a half hours of school, i had to start giving 2 lots of sndwiches cause he was asking for his lunch come 10am and then when it came to everyone elses lunch he didnt have any sandwiches left, so i was a bit worried i took him to the doctors and got him tested it came back that he has a underactive thyroid so i was thrilled i had an answer to it all but they wouldnt put him on medication for it cause it wasnt that low, but i wasnt happy with that cause the symtoms were still there so i got his neurologist to retest him and it came back normal, so i was back to square one again guessing what it could be, then behaviour problems started, he start hittin kids in school which i was very embarassed by, and very shocked cause its not in his character, hes such a soft nature loves cuddles and kisses, which alot of boys wouldnt like to show,lol but he does. Then the sickness came hes still now getting sick most days, if he doesnt get sick hes has nausea, he also gets shakey even his eyeballs shake, he gets very very unsteady on his legs. I personally think it the Epilim but his neurologist doesnt think it is, see i had enough with it after one of these episodes i took him down to the hospital and demanded to see someone and get some answers they kept him in for a week ran loads of tests, EEG, MRI, blood tests the lot and everything came back normal, i had recording on my camera, see the little beggar made a liar out of me and didnt do anything like at home or in school, but anyone that know him, knows that hes not right, so i think they think im making it look bigger in my eyes then it actually is, but our lives have been put on hold, we plan our days to how he is, and after he takes him medicine in the morning, he sleeps 12 hours at night and then at least between half an hour to 3 hours in the day, i think thats way to long for a child to sleep, i know we all need our beauty sleep but no way should he be sleeping all that time, i think his neurologist doesnt want to take him off it because its keeping the sz at bay, he hasnt had one since last July ( touch wood) but surely this isnt right what he is going through, my heart breaks in 2 when i see him like this and see im a single mother so im constantly with him 24/7, not that ill ever change it but i cant go on like this for his sake alone.. Please can anyone help, im lost of ideas im constantly question myself... Sorry for the long message but once i get into it i cant stop, its all the frustration coming out of me lol...
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First Helper User Profile LisaJane28
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replied June 3rd, 2009
I would pursue the treatment for low thyroid. New levels released in 2004 change "normal" to low. You'll have to do your own research on the actual values, but if the TSH levels are about 3, I think, the brain is working too hard to stimulate the thyroid. Get him natural thyroid, it is way better than the synthetic. My aunt, and best friend have forgone many years of emotional turmiol (like your son) by switching to a NATURAL thyroxin. My dad was switched to epilim and we don't like it either. Have you heard of neuro-feedback? HAppy researching Wink
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replied June 3rd, 2009
My bf has a problem with his thyroid and he gets really sick, really easily. A slight cold can really make it hard for him to function and makes him angry. He missed about 40 percent of his college classes due to illness before he got on thyroid meds. Also the accepted "healthy range" of thyroid functioning in the US is much wider than what is really considered to be healthy - they were going to change it to a narrower range, but decided not to - I believe because that would cause most americans to fall into a category of a thyroid problem but its been awhile since I did the research so check me on that.

Its also important to keep in mind that your thyroid function can change dramatically. You can have him tested on monday and have normal results, and have him tested on tuesday and have really low results. Have you been checking his temperature first thing in the morning to make sure its normal?

And a thyroid problem can cause seizures, which is where this situation gets tricky. Food allergies can also be a trigger but its very difficult to find a doctor who is willing to do real allergy testing - when my bf was looking into his probelms he found one doctor in all of the new york city area willing to do it, and it turned out that he had a ton of food allergies that manifested themselves in mood changes, irritibility and drowsiness (dairy, most grains, some others). Once he stopped eating those foods he was fine but there were so many he could have never identified them all without the tests


Also a normal EEG in no way means that he isn't having seizures, or even that he hasn't had a seizure during the EEG. Some people with severe epilepsy don't even have their seizures show up on EEGs unless the electrodes are placed directly on the brain. I had a normal EEG last year when my seizures were so severe I was being ordered home from work (and driven home by the school nurse), couldn't eat because i didn't have the energy to chew food etc. My current neurologist indicated that she thinks the last neurologists tech often administers the EEGs inappropriately and that was the problem. When I had my repeat EEG with the new doctor, it showed constant seizure activity, and 6 seizures - the seizures were so severe they were actually off the recorded value for the printed charts. She was amazed that I had been able to carry on a conversation with her when my seizures were that bad - and I was having a good day during that EEG. Unlike the day I had my normal EEG where I could barely move

Plus even if the tech does it right, the person reading the EEG can mess it up. I know I've been told by a few doctors to not lot certain places in this area perform/read my EEGs because they are well known for saying their are no seizures when there is severe seizure activity and vice versa.
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replied June 23rd, 2009
I was put on epilim when I was about 8yrs old. I started falling asleep on the bus home from school and wetting the bed cos i'd sleep so solidly. It turned out that the dose of epilim I was on was too much. I think I was on about 2000mg per day. As a child I didn't attribute my behaviour to the epilim, but my mum did. the epilim levels were reduced by my pediatrician bit by bit because I wasn't having seizures until they found a happy medium. I've been on it ever since and I'm 28 now. I don't know if I get side effects because i've never known any different. But I live a completely normal, happy life, and am about to have my second child.

Good luck. He's lucky he's got a mum that's so observant and caring like I did.
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replied August 14th, 2011
Help me :)
Hi there, my daughter 6 has started Epilim 2days ago, she slept most the day yesterday but is pretty much back to her normal today, although she is looking really tired and alittle pale. I have heard so much negative about Epilim, you have assured me that this does work for others..I am concerned about the amount of time you have been on the medication as i didnt expect someone to be on it for so long. (eg my daughter) Can you also tell me if you have had sz during your time of having epilim..Thanks this would be much appreciated..Concerned mum..
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replied September 12th, 2012
hi there .. I have a son David who is almost 21 years old ..he has been prescibed epilum also known as depakote in the US since the age of 24months old .. obviously he has had it at numerous dosages over the years ..least bein 400mg twice daily most being 1200mgs twice daily ..all I can say is it has been the only drug to actually irradicate seizures activity for a couple of years ..he has had many other drugs along side epilum but each have proved to have their own side effects ..he has always loved his sleep so some may say it is the epilum tht causes them to sleep longer ..however unseen epileptic activity in the brain can also cause them to sleep longer so ad not really put tht down to the epilum .. as for do they still have seizures whilst takin epilum . in davids case tht very much depends on different situations such as temp or ilness .. also he has several types of seizures so its proved difficult to control all types .. epilum is also used as a mood stabilizer for people with mood disorders .. my sister suffered bi polar and was prscribed epilum ..
the advice ad give is try not to look too much into the future with regards meds as the child can grow out of the epilepsy or thewy may not .. every child is different an d it really is early days ..hope this helps
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replied December 5th, 2010
EPILEPSY SIDE EFFECTS OF EPILIM
Hi,

My name is St.John and I have been taking epilim for 32 years. I am now 46. I take 1000mg per day. I am 6'6" and 18.5 stone so relatively the dose is not high for may size. I lead a happy and normal life but the drugs definitely effect my mental energy and I can get a certain tiredness - an aggressive negative tiredness that I hate. I sometimes have to go for a sleep in the afternoons which I can do since I work for myself but I hate doing it - I feel guilty about it. I only have to do this -usually - if I have slept badly ie less than 7 hours. I find negative events in my life makes much more tired. These events may be make related or other. It is important to be balanced and happy.

I went to the neurologist this week and he has recommended a lower dose of epilim in the form of a different drug which releases in a special way - so the drug is maximised. The smaller the dose the better

I can't think of any other side effects - it may increase my appetite but then that might be because I am a greedy fat slob!. I exercise alot - rowing machine and cross trainer for 50 mins 2 times a week. I may bruise my easily but I dont know if it is epilim or not.

Any comments by anyone on side effects I would be very interested to hear.
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replied July 13th, 2011
side effects of epilim . my husband as just started them and is on 1oomg morning and night and second week up tp 2 at night but he is so week on his legs and walked into the wall a few times and now seeing double dont no if this gets any easier oh not and so tired but cant leave him at all now to do anything .so no better of at the moment so dont no if anyone else had any problems intreasted to no ,
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replied July 13th, 2011
side effects of epilim . my husband as just started them and is on 1oomg morning and night and second week up tp 2 at night but he is so week on his legs and walked into the wall a few times and now seeing double dont no if this gets any easier oh not and so tired but cant leave him at all now to do anything .so no better of at the moment so dont no if anyone else had any problems intreasted to no ,
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replied November 28th, 2011
There are many, many side effects from epilim, but one common one is weight gain. When I briefly went off it from 2000mg daily I went down from 78 kgs to 69 in the space of two weeks. I was 16 at this stage (I am 25 and had seizures since 10)
Sometimes side effects like depression-- which can be heightened by other side effects like memory loss, weight gain, fatigue etc-- can lead to even further weight gain as for some of us eating is a source of comfort.
I would not have naturally thought epilim would give you too much damage if you are the size you say and are taking such a small dosage. Maybe keep your "eyes on the prize" and make a strong mental effort to succeed. Epilim is a common drug that is good at sucking your energy and demolishing your dreams; BE STRONG!
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replied October 3rd, 2011
Hello .. I was put on Epilim age 8 , I am now 38 sooo I feel Epilim and I have a love hate relationship ! As a child I was on a low dose 600mg p/d as I suffered regular absences .. This controlled it well , as a teen I was a wee reckless so I skipped doses and drank ect,, but when I suffered my first grandmal in 1991 I made sure I didn't skip .. My dose was incressed to 1500 mg .. Here I noticed .. Tiredness , lethargy, forgetfulness, pmt was more .. Ummm ..let's say I was viscous .. My poor bfs ! But I knew I had to live with this .. As years went on .. I would get a little slack and miss a dose .. But never went a day under 1000mg .. As each time I missed I felt an absence .. This pulled me back into line ... I suffered another grandmal in 1998.. ..but neuro kept me on 1500 mg .. Anyways cut a long story short .. After 13 years .. 3 kids normal life .. Travel, drive, work .. I'm pissed off bec 6 weeks ago I suffered a huge grand mal Sad my dose is up to 2000mg I'm a wee little lady .. I believe this is too high for me as I'm exaughsted .. Headaches .. Grumpy ! Neuro revisit on Saturday .. Fingers crossed !
Btw.. Good luck to all x
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replied November 21st, 2011
Epilim side effects
the side effects I had were very bad, skin peeling off, drowsiness, weight gain, skin turning yellow - jaundice like, lack of energy, feeling generally unwell, swelling of ankles, I stopped menstruating, shaky movements and unsteady walk, dry mouth,hearing voices.
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replied December 7th, 2011
Epillim Experience...
Our 4 going on 5 y/o son was put on Epillim and told to take it for 2 years as he was having seizures either side of a particularly bad virus. Because the seizures were not attributed to a high fever the prognosis was Epilepsy - At least I think it was. I was handed a fact sheet on Epilepsy while waiting in the ER. Nobody has yet said "Your son has epilepsy". His EEG showed nothing. When it was suggested he take Epillim, I was surprised that he would be medicated so quickly without first watching for emerging patterns. I agreed we would take it on the advent of another seizure. As it happened he had another one that evening so I started him on it. Our son is a high energy kid and I was concerned about the side effects. Over the course of a month he became unmanageable. He cried so much, had terrible nightmares and ate like a teenager! We couldn't get through to him it was as though he was locked in his own world. He was constantly moving, gesturing, pulling faces, making strange sounds, screaming, yelling and blowing raspberries. We couldn't guide or discipline him. Parenting went out the window and we were pretty much on damage control! The worst point was when he wanted to "cut his bones out and blow himself up". We were heartbroken and in tears by this stage and despite ALL advice not to from medical professionals we decided to stop drugging our son. Surely the odd seizure is better to manage than every day like this? I couldn't even get advice on how to take him off it as we were away from home and told our GP was the only one who could advise on that. I did it anyway by slowly reducing the amount, in effect the reverse of going into it.
That was 3 months ago and our son has not had another seizure and is thriving at school. I think Epilm is a very dangerous substance to be giving so freely to children. Its primary use is for Bi-Polar disorder and it is used in cases of Epilepsy because it is 'somehow' stops seizures. Thats not a good enough reason for me. Our ordeal lasted only a month and a half. He was supposed to be drugged for two whole years.
We have been told there is a 30% chance that over the next two years our son may have another seizure. If or when that happens we will tread carefully and exhaust all alternative options (diet,envronment,alt meds etc) before trying another drug. I wrote this today as I received courage from reading other peoples experiences. I cried when I found the same thing happening to another family and knew it was the medication that had to stop. I understand every case is different and I just hope this helps somebody who is in a similar situation.
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replied May 4th, 2012
epilim side effects?
Im 22 and have been taking epilim since i was 20 and had my first child, i started getting seizures when i was 18 but they stopped on lamotrigene but i was still getting partial seizures in my face and after having my son they got worse so that one day i was walking down the street pushing the pram and my whole body convulsed and i almost fell over, i stopped feeling as though i could be a proper parent for my son so i demanded to be seen and have something done cause i couldnt even hold my baby alone let alone bath him if someone wasnt in the room, i got put on 1200mg of epilim daily and things got 100% better until i started noticing the memory loss, the tiredness (which i thought was just from having sleepless nights as a new mother ) but this is still the case and he is 2, i still need to have the occasional nap during the day, i find it so hard to drag myself out of bed in the morning and strugle to even do a 15hour week at work, im constantly having down days and ive even started to get a twitchy face again, my appetite is up and down therefore affecting my weight, ive been to my dr 4 times about this and he tells me everytime that it cant be the drugs as he hadnt heard of them causing tiredness before, that it must be my son as he is full on, even suggesting my son might have adhd, which i dont belive is true, he is a normal happy 2 year old and i just want to be able to keep up
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replied May 24th, 2012
Hi, I am new to this Forum. My son is 6, will be 7 in September. He is on Epivol(sodium and velporic acid)for the last two years and is fit free. He started losing weight since last weight. I can count his bones when I am changing his clothes. He also looks unwell and pale from face. Kindly advise what to do. Really needs some good advises.
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replied October 3rd, 2012
Epilepsy - effects of epilim
My son in 5 and has been taking epilim for around 4 months after being diagnosed with aytpical absence epilepsy. When he first started taking it it made him a bit tired and unwell but when he got up to his full dose he was back to his normal self and absence free. In the last few weeks he started having regular absences again and complaining of headaches. His Dr told me to increase his medication. This was about a week ago and he his still having absences (not as frequent) and he is not himself at all. He hardly eats (which is a HUGE worry as he loves his food), he is pale, he is very tired all the time, no matter how much sleep he has. He has wet the bed twice in a week, which he has never done since coming out of nappies. His behaviour can be hard to control (he is usually a very placid and well behaved boy). He also seems very (for want of a better word) depressed. He looks so sad all the time, often on the verge of tears and he keeps saying that he is sad but he doesn't know why.
We are so worried about him and wonder if he should even be taking this medicine. He has not yet had an EEG or anything. We have saw a Dr once, when he was diagnosed and not saw or spoke to anyone since. When I was told by his Dr to up his meds, that was over the phone. I am awaiting another call from his Dr now but feel so worried and really want to get some understanding and control of the situation.
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replied December 20th, 2012
My son has temporal lobe epilepsy and has done since one year old. He experienced up to 80 seizures a day when first diagnosed and has suffered brain damage due to them. He is now 15 and continues to have seizures. He had a 4 year seizure free break from them so the docs decided to take him off meds and hoped they wouldn't return. They returned 3 weeks later as bad as ever. We are now a year later on and having lots of problems with him falling asleep all the time and wretching and feeling sick all the time. He is very pale and I collect him from school early a lot of the time as he can't cope with the sickness. He was on 800mg of epilim chrono twice daily and 150 mg of lamictal twice daily. He saw neurologist this week who ran blood tests and noticed that his levels were very high so have reduced his epilim to 600mg twice daily. I'm hoping this will improve his energy levels and the sickness. We await MRI scan, repeat EEG, and referral to a gastro specialist in new year. He has ADHD also and is normally so full of energy, I really wish I could see this very lively boy back to good health really soon.
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replied March 14th, 2014
I've been taking epilim chrono for 3 or 4 years at a 600-800mg dosage at nights for bipolar issues. Until recently I've noticed no side effects, and it seems to work quite well as a mood stabaliser. Sometimes I have to take a low dose of Olanzapine (2.5 or 5mg) and/or Zopiclone when I get a bit stressed.
Recently however I've had nagging upper left abdominal pains with some back pain and nausea, and think that this could be a side effect of Epilim - possibly inflamation of the pancreas (but hopefully not). Have any other users found this? I've stopped taking Epilim now, with agreement with my doctor and am just taking Olanzipine 2.5mg instead. After a couple of days the stomach and back pains have almost gone.
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replied May 20th, 2014
Epilium side-effects
I am a 34 year old woman. I've just started Epilium to stabilise my mood (I'm suffering from low moods due to depression). I have instantly noticed that it has made me feel more aggressive and angry, however, I also feel more assertive and I feel less helpless. It has also helped return my appetite. I feel like I am gaining weight, which, to be fair, is no bad thing. I also feel that all my teeth are more sensitive, like I have cavities or something, although I can't because I had a dental check up just a few months ago.
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replied May 22nd, 2014
I didn't find any side effects with Epilim, except perhaps some light headedness at the beginning. However following some abdominal pain I had blood tests showed slightly abnormal liver function, although my amylase test was fine - so no pancreas damage. So I've stopped taking Epilim and will just take Olanzapine when needed. For around 2 months now I've been medication free though, and am feeling pretty good. Sometimes I wake early or in the night, but at least I've no side-effects and no mental issues so far.
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replied October 1st, 2014
My night time abdominal and back pains have continued from time to time, however I've now had an abdominal ultrasound scan, a CT scan and a gastroscopy and my kidneys, liver, gall-bladder, pancreas and stomach lining are fine. So Epilim does not seem to have caused any major problems, apart from maybe general digestion issues.
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