i need to know if there is anything i can do

hi there i have had epilepsy since i was 6mnths old and now i,m 42 years old . i been told i got tonic clonic epilepsy and at moment i,m have no meds for 2 or 3 years as they where not working so i told the doctors about it nothing was done so i stopped taking my meds . i been told by the main doctor that i can never go to see him again and no other doctors about meds for my epilepsy i dont know how many i have had since i live on my own and i know that i have had them by the cuts on my nose and the black eyes i have when i come round but as well as the epilepsy i have had 5 small strokes aswell i would like to know if there is anything i can do

6 Replies

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  • Hi I have Hughes syndrome, which I think caused my epilepsy , I take Lamotrigine 600 mgs I think the Doctors are concerned that you are not following their treatment advice

    If I were you I would go back to my Gp and discuss the problem again

    Good luck

  • Hi, again as daisyd says, taking your medication is vital and should never be stopped, no matter what you might think. I suggest you visit your normal GP, discuss the subject and go forward with your life. I presently take Carbamazapine 200mg. (3 daily) and Phenytoin 100mg (2 daily). I have had epilepsy now for 39 years, am so far 14 months seizure free, but have never stopped my medication during all this time. These two drugs suit me and are controlling me well. Good luck and keep us posted.

  • Hi - like daisyd and lesmal, I think the reason your doctors may have told you not to come back may be because you have stopped taking your meds - also, maybe they didn't really mean you not to go back at all, perhaps they meant just if you still refused to take medication and they were warning you that they wouldn't be able to treat you any more as they couldn't help you?? if you have had 5 small strokes as well, you really must get yourself some medical help. They will be able to find some drugs to help you , to make things better if not perfect. It took my doctors 4 years to find a drug that controlled my seizures - tonic/clonic (several times a week at its worst) as well as lots of more minor ones. I am now controlled with 500 mgs of Lamotrigine daily as it is the one that works for me - I had tried about 5 different ones before we got to this successful result. PLEASE go back to your doctor - or even a new one if you really have to - and allow them to help you.

  • I agree with ecossaise and the others! You need to go back to your doctor or change doctors and ask for a referral to a Neurologist!

  • I agree as above, see another GP and ask to be referred to a Neurologist, I have epilepsy and mine is drug resistant, but at least what I take slows them down some. I'm quite lucky my GP is an Epilepsy specialist, there is loads of help out there, contact Epilepsy Action they can give you some brilliant advice and help you out.

    Hope that helps

  • I'm sorry to hear about your circumstance, but am surprised your own GP has said there is nothing further that cam be done. Now this is drastic, but depends how much you want to be rid of the frequent fits. Eliminate ALL sugar from your diet. Do not eat anything that has more than 10g of sugar per 100g or 10ml per 100ml. This includes fruit, milk, breads, cereals, ALOT of foods have hidden sugars. Replace them with fats and proteins such as butters, oils, meats. So instead of a sausage butty - have 3 sausages and a piece of bacon instead! Sugar helps the brain to fire electrodes - and it sounds like your brain doesn't need much assistance, so cut the sugar and increase the fats. A ketagenic diet is perfect for you.

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