Epilepsy Forum - Side effects from Epilim

Conditions and Diseases > Epilepsy Forum > Side effects from Epilim

Click here to learn more about what causes epilepsy and the different types of epilepsy. Start here to learn about the basics of this type of brain disorder. ...

Q: Side effects from Epilim

asked by: stephanieoflanagan on March 30th, 2009

New User

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...

Replies(3)

kiwimom

replied on June 3rd, 2009

New User

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

twistingoak

replied on June 3rd, 2009

New User

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.

LisaJane28

replied on June 23rd, 2009

New User

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.

Learn About Us

Get Help

Join In

Do More

We comply with the HONcode standard for trustworthy health
information:
verify here.

The site is not a replacement for professional medical opinion, examination, diagnosis or treatment. Always seek the advice of your medical doctor or other qualified health professional before starting any new treatment or making any changes to existing treatment. Do not delay seeking or disregard medical advice based on information written by any author on this site. No health questions and information on eHealth Forum is regulated or evaluated by the Food and Drug Administration and therefore the information should not be used to diagnose, treat, cure or prevent any disease without the supervision of a medical doctor. Posts made to these forums express the views and opinions of the author, and not the administrators, moderators, or editorial staff and hence eHealth Forum and its principals will accept no liabilities or responsibilities for the statements made. Schizophrenia health sitemap.
This page was last updated on January 1, 2009.
© 2008 eForums, Inc