Any thoughts/advice re new medicatio

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I’m hoping anyone may have any thoughts or advice on my current situation.

After a car accident in 2014 – which I had not apparent injury’s but 2 weeks later I collapsed and after 3 week hospitalised – EEG’s EEG’s CT’s, MRI’s and finally a lumber puncture which all had no apparent results or reasoning for my diagnosis on epilepsy. The choice was we can keep you hospitalised for another month, do more tests etc. or we can diagnose you as being epileptic. I made the 2nd choice.

There has been no epilepsy in any of my family – both on the maternal and paternal side. No use of drug/alcohol addiction etc. etc. but at 44 I have been diagnosis of being epileptic.

I was originally on 350mg daily of TEVA (Lamotrigine) but that has since been increased to 500mg daily. There has never been a full epileptic ‘episode’ again but the Tonic/Colonic diagnosis is of nocturnal (between 3am – 5am for some reason!), and I was having ‘precursors ‘to an episode, smacking of lips etc. but it has never went onto a full seizure.

I discussed this will my GP who upped my dosage to 500mg a day. Initially this worked great – but in the past few month is seems to be wearing off as I am once again having the exact same thing happen overnight and I cannot go any higher a dosage as it moves onto being toxic.

Now when I has initially diagnosed as being epileptic in 2014 I was on a Phenytoin/Lamotrigine, high one the other low, balancing and eventually moving onto the high Lamotrigine dosage and no more Phenytoin.

Now as I say after a discussion with my GP this was upped to 500mg as I was having what seemed to be a pre-cursor of a full episode again?

This worked great initially but now I am having the same thing happen to me and now but I am very reluctant/cautions/scared to go down the Lamotrigene route, maintenance/ therapeutic dose as I come off one and onto the new medication. Last time it was hard!

Any suggestions/input would be grateful?


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  • Posted

    Hey smile 

    So i am 21 and have had epilepsy since i was 8 and weirdly enough mine was diagnosed 6 weeks after i had surgery close to my brain. I have always questioned wether that had triggered this and i did speak to my neurologist earlier this year and she kind of said it without saying it if you know what i mean so no one gets in trouble so she basically said that they shouldnt have done a surgery like that at my age. Crazy stuff but i have lived with it now for 13 years and fortunately for me the lamotragine is working for me initially i was on epilim for about 10 years although i had some health issues last year and i had some crazy side effects from them and i had to swap over to the lamotragine over christmas. I think in your case that if such a high dosage isnt working for you that maybe there is another issue that is causing these episodes i mean im not a doctor or anything but maybe ask what other tests they were going to run on you if you had stayed at the hospital ? i mean its worth a shot? i just think why put your body through taking such high dosages when its maybe not needed. I havent had an eeg since i was about 10 and im contemplating asking if maybe i can go back and have one to see if the epilepsy is still as active as it was. I know that with driving you have to be careful and i already had to stop driving for 3 months while i changed medication so that sucked big time! i dont know obviously a car accident can cause trauma to your brain i think like i said see what tests they were going to do i know staying in hospital sucks i was in there last year and couldnt wait to go home. 

    I hope all goes well with you and you get some answers soon! 

    Let me know how you go as i would be interested to see what they say. 

    P.S sorry for the long reply haha 

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    • Posted

      Hey Jane so last year my lymph glands were really swollen out of no where which was really painful and after a month or so it turned out i had glandular fever for the second time which is apparently rare as once you get it the first time your body should be immune to it so they said its alot worse the second time round. Any way long story short as it took a while for my lymph glands to go down like about 7 months or so although they are still swollen so i was sent to an oncologist which was scary i must say but he didnt seem to worried so that was a relief. after that happened i started getting numbness and tingling mostly down the left side of my body and it eventually got so bad to the point were i could barely move or walk without someone helping me i was in hospital for a week and because they couldnt find anything on the MRI they didnt know what to do so i got an appointment with a neurologist and ended up swappinhg my medication and i eventually got better i dont know if its a coincidence or not but my GP said that sometimes when something like EBV happens it can compromise the body and trick it into doing other things i dont know something along those lines. it was a long and hard year for me and is still ongoing as i had issues with my tonsils and had them removed last month and he didnt do it properly so i have to have it done again in a little under 2 weeks! Although with the epilepsy side of things its been good i feel like the new drugs have made me more aware if that makes sense i think the new medication has some what changed me i think for the better i feel more myself and even my mum could see the difference. Like i said i was on Epilim for 10yrs which is a long time and i know its also the worst medication to be taking if you want to have children which was another reason i chose to swap to Lamotragine as apparently that is one of the best. I am happy with that side of things but i just wish the whole tonsil thing was over ! 
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    • Posted

      well they are thinking the whole numbness and tingling and weakness had to do with the epilim although they cant say 100% as neurology is such a difficult area but thats what there putting it down to because i got better like with in a couple weeks of taking the new medication. It was a really rough time i am glad thats over thats all i can say initially they thought i had MS as my mum also has it and was the same symptoms but obviously my MRI was clear which was good ! i am hoping that this tonsil thing does get resolved soon as i have been in pain since the first operation last month so its been an awful year and all the surgeon could say was this wasnt part of the plan and to have panadol or neurofen until the surgery !! i was so angry as i spent $3500 to get them removed and now i have to go through it all again and right before easter too ! 
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    • Posted

      yer im definately not a fan of it i was on 1200mg a day but the new ones are so much better plus they are so much smaller and they taste like strawberry haha 
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