Any experiences with Epilim?

Sandy - posted on 11/23/2012

Andrew ... most doctors will start with Phenobarbital as a first med, with Tegretal as the second one. You son needs a video EEG, ST scan and spinal tap. These tests will help find out what is happening. Don't sit and wait. Push them to do tests. Good luck.

Sandy Lora

Andrew - posted on 11/21/2012

Seeing all the answers and the side effects that are shown on the web, it really scares me. My son is 5 now and he had three seizures in the past year and never before. i took him to the hospital the first two times but by the time we arrived there the seizures have subsided and the sisters on duty just monitored him. no test what so ever were done to determine what were wrong. On the 15 november he got another seizure so i took him to the local clinic and they prescribed epilim without even touching him. that worries me a bit.

Sandy - posted on 10/16/2012

Anna .... you should take 1 or 2 1200mg capsules of Lecithin every day. It's an over the counter supplement for brain and nerve function. It's been wonderful to my now 14 year old son, in getting his seizures down to one every couple of months from at least one a day. The Melatonin is great for getting him into a deeper realm of sleep which also holds off seizures.



For you I would get off the Epilim now. It is only going to make you feel worse which causes all the problems with the depression. I suffer from depression and it can be horrible some days!!! Do the Lecithin and I hope it helps you like it's helped my son. Good luck.

Sandy Lora

Anna - posted on 10/15/2012

Dear People,



don't let doctors put your children on epilim or any anti seizure medication until you have exhausted all natural alternatives like melatonin, fish oils and IV vitamin C - a natural substance made by the body.



I am 43 and I am fighting a GBM brain cancer . I was diagnosed in Aug 2010. They the medical establishment gave me 12 months. That was 2 years ago. I had the usual surgery radiation and and Avastin (new drug) and then some chemo (not full regime as advised by oncologist). I took the advice of my complementary doctor and did not take the anti seizure medictaion in the first instance. I had never had a seizure but the neuro surgeon prescribed it for 'possible seizure activity'. etc I remained seizure free with the rainbow diet (unprocessed foods and veges etc) and was clear of any cancer by end 2011. I was not on any western medication at all.



Unfortunately I slipped up on my diet ( sugar) and with some severe stress (because of family court rot) I experienced some regression in Jan 2012. I was detoxing over two days and over did it with some star anise, ginger and green tea etc so had a 'halucongenic episode' so the local docs prescribed epilim. Oh what a mistake taking that was. I only take 200mg at night and that is enough to cause me so many side effects that my life is now on hold. My cancer is again in remission but I have these shitty side effects of epilim.



insomnia, scratching at my face and gums etc becasue of funny 'feelings' there, constant feelings like I am going to have a seizure, dizziness, depression, inability to think clearly, blurry vision, less patience, somnolence, etc. vaginal infections, dry skin hair loss ,



some days I am able to do things others I am paralysed with depression. Now my battle is not with cancer it is with epilim.



I can understand why parents say that it changes their children's personalities.



Becasue I am fighting brain cancer I have to be very careful of what I do with my medication. I am now going to have myself admitted to hospital so that I can be weaned off this shit.



DONT' LET DOCTORS PUT YOUR CHILDREN ON THIS CRAP EPILIM.



IT WILL DESTROY YOUR CHILDREN.



GIVE THEM RAW FOOD AND VEGETABLE JUICES, DARK GREEN FOODS ALL DAY AND UNPROCESSED FOODS AND NO SUGAR.



with regards and my ope that you heed my warnings.



Anna

Anna - posted on 10/15/2012

Dear People,



don't let doctors put your children on epilim or any anti seizure medication until you have exhausted all natural alternatives like melatonin, fish oils and IV vitamin C - a natural substance made by the body.



I am 43 and I am fighting a GBM brain cancer . I was diagnosed in Aug 2010. They the medical establishment gave me 12 months. That was 2 years ago. I had the usual surgery radiation and and Avastin (new drug) and then some chemo (not full regime as advised by oncologist). I took the advice of my complementary doctor and did not take the anti seizure medictaion in the first instance. I had never had a seizure but the neuro surgeon prescribed it for 'possible seizure activity'. etc I remained seizure free with the rainbow diet (unprocessed foods and veges etc) and was clear of any cancer by end 2011. I was not on any western medication at all.



Unfortunately I slipped up on my diet ( sugar) and with some severe stress (because of family court rot) I experienced some regression in Jan 2012. I was detoxing over two days and over did it with some star anise, ginger and green tea etc so had a 'halucongenic episode' so the local docs prescribed epilim. Oh what a mistake taking that was. I only take 200mg at night and that is enough to cause me so many side effects that my life is now on hold. My cancer is again in remission but I have these shitty side effects of epilim.



insomnia, scratching at my face and gums etc becasue of funny 'feelings' there, constant feelings like I am going to have a seizure, dizziness, depression, inability to think clearly, blurry vision, less patience, somnolence, etc. vaginal infections, dry skin hair loss ,



some days I am able to do things others I am paralysed with depression. Now my battle is not with cancer it is with epilim.



I can understand why parents say that it changes their children's personalities.



Becasue I am fighting brain cancer I have to be very careful of what I do with my medication. I am now going to have myself admitted to hospital so that I can be weaned off this shit.



DONT' LET DOCTORS PUT YOUR CHILDREN ON THIS CRAP EPILIM.



IT WILL DESTROY YOUR CHILDREN.



GIVE THEM RAW FOOD AND VEGETABLE JUICES, DARK GREEN FOODS ALL DAY AND UNPROCESSED FOODS AND NO SUGAR.



with regards and my ope that you heed my warnings.



Anna

Anna - posted on 10/15/2012

Dear People,



don't let doctors put your children on epilim or any anti seizure medication until you have exhausted all natural alternatives like melatonin, fish oils and IV vitamin C - a natural substance made by the body.



I am 43 and I am fighting a GBM brain cancer . I was diagnosed in Aug 2010. They the medical establishment gave me 12 months. That was 2 years ago. I had the usual surgery radiation and and Avastin (new drug) and then some chemo (not full regime as advised by oncologist). I took the advice of my complementary doctor and did not take the anti seizure medictaion in the first instance. I had never had a seizure but the neuro surgeon prescribed it for 'possible seizure activity'. etc I remained seizure free with the rainbow diet (unprocessed foods and veges etc) and was clear of any cancer by end 2011. I was not on any western medication at all.



Unfortunately I slipped up on my diet ( sugar) and with some severe stress (because of family court rot) I experienced some regression in Jan 2012. I was detoxing over two days and over did it with some star anise, ginger and green tea etc so had a 'halucongenic episode' so the local docs prescribed epilim. Oh what a mistake taking that was. I only take 200mg at night and that is enough to cause me so many side effects that my life is now on hold. My cancer is again in remission but I have these shitty side effects of epilim.



insomnia, scratching at my face and gums etc becasue of funny 'feelings' there, constant feelings like I am going to have a seizure, dizziness, depression, inability to think clearly, blurry vision, less patience, somnolence, etc. vaginal infections, dry skin hair loss ,



some days I am able to do things others I am paralysed with depression. Now my battle is not with cancer it is with epilim.



I can understand why parents say that it changes their children's personalities.



Becasue I am fighting brain cancer I have to be very careful of what I do with my medication. I am now going to have myself admitted to hospital so that I can be weaned off this shit.



DONT' LET DOCTORS PUT YOUR CHILDREN ON THIS CRAP EPILIM.



IT WILL DESTROY YOUR CHILDREN.



GIVE THEM RAW FOOD AND VEGETABLE JUICES, DARK GREEN FOODS ALL DAY AND UNPROCESSED FOODS AND NO SUGAR.



with regards and my ope that you heed my warnings.



Anna

Anna - posted on 10/15/2012

Dear People,



don't let doctors put your children on epilim or any anti seizure medication until you have exhausted all natural alternatives like melatonin, fish oils and IV vitamin C - a natural substance made by the body.



I am 43 and I am fighting a GBM brain cancer . I was diagnosed in Aug 2010. They the medical establishment gave me 12 months. That was 2 years ago. I had the usual surgery radiation and and Avastin (new drug) and then some chemo (not full regime as advised by oncologist). I took the advice of my complementary doctor and did not take the anti seizure medictaion in the first instance. I had never had a seizure but the neuro surgeon prescribed it for 'possible seizure activity'. etc I remained seizure free with the rainbow diet (unprocessed foods and veges etc) and was clear of any cancer by end 2011. I was not on any western medication at all.



Unfortunately I slipped up on my diet ( sugar) and with some severe stress (because of family court rot) I experienced some regression in Jan 2012. I was detoxing over two days and over did it with some star anise, ginger and green tea etc so had a 'halucongenic episode' so the local docs prescribed epilim. Oh what a mistake taking that was. I only take 200mg at night and that is enough to cause me so many side effects that my life is now on hold. My cancer is again in remission but I have these shitty side effects of epilim.



insomnia, scratching at my face and gums etc becasue of funny 'feelings' there, constant feelings like I am going to have a seizure, dizziness, depression, inability to think clearly, blurry vision, less patience, somnolence, etc. vaginal infections, dry skin hair loss ,



some days I am able to do things others I am paralysed with depression. Now my battle is not with cancer it is with epilim.



I can understand why parents say that it changes their children's personalities.



Becasue I am fighting brain cancer I have to be very careful of what I do with my medication. I am now going to have myself admitted to hospital so that I can be weaned off this shit.



DONT' LET DOCTORS PUT YOUR CHILDREN ON THIS CRAP EPILIM.



IT WILL DESTROY YOUR CHILDREN.



GIVE THEM RAW FOOD AND VEGETABLE JUICES, DARK GREEN FOODS ALL DAY AND UNPROCESSED FOODS AND NO SUGAR.



with regards and my ope that you heed my warnings.



Anna

Anna - posted on 10/15/2012

Dear People,



don't let doctors put your children on epilim or any anti seizure medication until you have exhausted all natural alternatives like melatonin, fish oils and IV vitamin C - a natural substance made by the body.



I am 43 and I am fighting a GBM brain cancer . I was diagnosed in Aug 2010. They the medical establishment gave me 12 months. That was 2 years ago. I had the usual surgery radiation and and Avastin (new drug) and then some chemo (not full regime as advised by oncologist). I took the advice of my complementary doctor and did not take the anti seizure medictaion in the first instance. I had never had a seizure but the neuro surgeon prescribed it for 'possible seizure activity'. etc I remained seizure free with the rainbow diet (unprocessed foods and veges etc) and was clear of any cancer by end 2011. I was not on any western medication at all.



Unfortunately I slipped up on my diet ( sugar) and with some severe stress (because of family court rot) I experienced some regression in Jan 2012. I was detoxing over two days and over did it with some star anise, ginger and green tea etc so had a 'halucongenic episode' so the local docs prescribed epilim. Oh what a mistake taking that was. I only take 200mg at night and that is enough to cause me so many side effects that my life is now on hold. My cancer is again in remission but I have these shitty side effects of epilim.



insomnia, scratching at my face and gums etc becasue of funny 'feelings' there, constant feelings like I am going to have a seizure, dizziness, depression, inability to think clearly, blurry vision, less patience, somnolence, etc. vaginal infections, dry skin hair loss ,



some days I am able to do things others I am paralysed with depression. Now my battle is not with cancer it is with epilim.



I can understand why parents say that it changes their children's personalities.



Becasue I am fighting brain cancer I have to be very careful of what I do with my medication. I am now going to have myself admitted to hospital so that I can be weaned off this shit.



DONT' LET DOCTORS PUT YOUR CHILDREN ON THIS CRAP EPILIM.



IT WILL DESTROY YOUR CHILDREN.



GIVE THEM RAW FOOD AND VEGETABLE JUICES, DARK GREEN FOODS ALL DAY AND UNPROCESSED FOODS AND NO SUGAR.



with regards and my ope that you heed my warnings.



Anna

Tanya - posted on 01/29/2010

My 4ry old son has been on it for about 8 wks he has been behaving badly with screaming more and just not happy - he also has language delay and diagnosed with ASD (Austism Spectrum Disorder) i have been thinking it was just hat but i am now starting to wonder if it is the Epilim.

Sandy - posted on 01/28/2010

Kelly,
I dealt with violence and impossible behavior with my son on Keppra and then again on Zonagran. My advice get her off the epilim. Epilim must be the NEW drug for all the doctors to give. Try something like Trileptal. My son has been on it since 18 months old and he's 11 years old. It's his base drug and now that he's topped out on the dose .. I'm gonna have to add another seizure drug. I am at a lose as to which one to try. He's been on most of the seizure drugs that are made. And please don't settle for generic!!!! They switched Joey to generic and the seizures became worse than they already are. Joey truly has NOT been seizure free and most likely never will be. His Epilepsy is very severe and has already had 6 brain surgeries, including the left side of his brain being taken out. Don't settle for your child being irritated and screaming. It will drive YOU nuts!!! For a better sleep ... give her 3 mg of Melatonin and hour before bedtime. It slows the brain down some and lets them drift off into a peaceful sleep, throughout the night. Joey use to go to bed and wake up an hour later and not want to go back to bed. Melatonin has made an amazing change in him cause he's sleeping well and is doing great in school. Take care,
Sandy Lora

Julie Anne - posted on 01/28/2010

my son was on that, hes an adult now, it changed his personality, he used to become very angry, im glad they took him off it

Kelly - posted on 01/28/2010

my 14month old daughter has just been diagnosed with epilepsy and she has been on epilim for a week and her personality has totally changed shes screaming and getting very iritable all the time waking up screaming in the night i dont know if this is down to the medication or not as im not sure how fast it starts working

Sandy - posted on 01/24/2010

Chantel .. I think these neurologists pick a drug and they all use it. I have heard LOTS of bad stuff about Epilem. Use to be the first seizure drug was Phenobarbital. Phenobarbital does make people drowsy but never violent!! Zonagran and Keppra can both come with violent/behavior issues. Trileptal has been a pretty friendly drug for my son for the past 10 years. Tegretal is also pretty mild when it comes to side affects. A little info in case you need to put her on a new drug. Experience from me to you. Best of luck.
Sandy Lora

Chantel - posted on 01/24/2010

hi my daughter 3 was diagnosed with epilepsy and was placed on epilem and she changed dramaticly and the side effects were just as bad we took her of the meds because we beleive shes not epiletic just feborole with out temps but with dehidration and shes been off the meds for a couple months and is slowly going back to normal now

Sandy - posted on 01/21/2010

Laura,
I know Joey, my 11 year old, got violent/aggressive behavior on Keppra and Zonagran at different times. Personally I stopped the drugs right there and then. My thoughts would be to hospitalize her with restraints and just stop the drug while replacing it with a new drug. You need to get that drug out of her system. Something so severe like what shes doing might be worth doing a blood transfusion in an effort to dilute the drug in her body!! Trileptal is Joey's drug since 2 years old. Joey's isn't totally controlled and most likely never will be after 6 brain surgeries and his left brain being removed. His is VERY severe epilepsy. Epilim was a suggestion for my son but after researching it ... I decided against it, along with several other seizure drugs. It's not worth the horrible side affects. I hope this helps you. Take care.
Sandy Lora

Daena - posted on 01/21/2010

hi Laura

im now in my 30' but from the time i was 5 til the time i was in my mid early 20's i was only ever on Epilim, so i don't know how much of my problems stemmed from the Epilim and how much from the real life my bigger concern about the Epilim is the weight gain that is associated with it, i know that she's only two now but ive know several women with epilepsy and also one with bipolar who were all on Epilim and our biggest concern was that our weights skyrocketed while on it. there are so many drugs out there that can control seizures. i would go back to the pediatrician and simply say we are concerned about the side effects we want to change to another medication.

Good luck

Meegan - posted on 01/18/2010

Hi Laura. What your dealing with sounds quite distressing. I have a 9 1/2 year old who has been on Epilim since he was about 2 1/2 for grand mal seizures. I've had no such problems with this medication. My son also has a disability so his health can be a real balancing act but since he had heart surgery 3 years ago he is a lot stronger & also seizure free. If we decide with his paediatrician to wean him off the Epilim i will prepare myself 4 more seizures as i think that is what has controlled them so well but time will tell. All kids are different and their response to medication will also differ. Maybe another medication will be better for her or maybe there's another underlying issue. The other thing is that you feel comfortable with your doctors. My sons team have all been wonderful. I'm very lucky 2 not have had to 'shop around' for doctors i'm happy with. Maybe a second opinion is a good idea, you need 2 b able to talk openly with your daughters doctors. Good luck with finding the answers you need. It can b a scary time but keep faith & keep searching & you'll all b fine.

Aileen - posted on 01/18/2010

good lord.......yes epilim does affect behaviour drasticly.....my 11yr old son is on epilim and his behaviour and personality have altered drasticaly.....it is the epilim and afects every child differently x

Treesha - posted on 01/17/2010

My son (2) has taken it for the last 7 months twice a day and hasn't had any behavioural problems at all, and only 1 small seizure in that time too. Have been very happy with Epilim so far. Hope this helps.