should i come off med? - Epilepsy Message Board

trisha rose · 03-07-2003, 06:14 AM

i am on epilim 500 one a day.i was put on them 10 years ago as i begain taking fits during my pregnancy it was IVF.
i also took a few fits when i had two etopic prenancies about 12 years ago.
so it seems to be only each time i get prgnant i take fits. i am now 42years old and due to medical problems i can`t have more children. so i don`t really see the point in taking the med. my doctor said if i come off it there is a chance the fits might come back as he said when they did a scan they found scars from when i had a child hood illness. but i didn`t have any fits while i was a child well not that i was aware of!!
i am so worried about the damage the meds are doing to my body i just hate taking any meds at all unless i really need to.
any advice

nicola_76_uk · 03-07-2003, 02:42 PM

Always remember that when you're thinking about coming off of your meds that you never just stop taking them. You need to be weaned off of them slowly. Maybe you could talk to your doctor about doing that. Slowly decrease your dose and see how you feel.

Hope this helped a bit. Take care!

Nic

jimbo_reggie · 03-07-2003, 04:42 PM

it is ip to you. Do you swap an unhealther life but more confortable one for a healther life but unconfortable?

I have a book which gives you infomation on all the different drugs in the world. When i go round my mothers house i will look up this drug for you and tell you the side effects if you want. I find this book quite interesting becasue doctor are like saleman and they will tell you what you want to hear to get you to take something but this book gives you the full picture. Give me a couple of days.

[This message has been edited by jimbo_reggie (edited 03-07-2003).]

tooheys · 03-07-2003, 07:09 PM

Trisha Rose,

I too am on epilem, my doseage is 2000mg a day, the only side effects I have is muscle spasms. I agree it's up to you whether you stop your meds or not but your Dr is probably right that the seizures will be there. I would hate to stop taking mine as I still have seizures with them. Your doseage seems very low as the way they usually work out how much you take is 20 to 30mg per Kg of body weight. The listed common side effects are tiredness, hand tremors weight gain and loss of hair(which they claim is reversable). The more serious side effect which is uncommon is liver failure that function is normally monitored by your Dr with 12 monthly blood tests. If you decide to stop taking your meds make sure you ease yourself off them by say taking one every two days then three etc. I hope you make the right decision.

tooheys

trisha rose · 03-08-2003, 07:39 AM

thanks all who answered my post.
to let you know the truth for the last two years i have only been taking my med every second day and i have been fine. since i have been on it 10years i have only seen the doctor at the hospital twice and thats when i made the appointments myself. they just put me on the med then forgot all about me well thats how i feel! my GP done some blood tests about a year ago and they came back fine.
another thing i would like to say is my son is autistic i am not sure if the med had anything to do with that we will never know the answer to that!!!!!!!!
they put me on the med when i was 4 months pregnant
anyway thats another story.
i think i will make an appointment ewith my doctor soon