I would like to hear if you stopped taking the medication as the side-effects were alot harder to cope with.

[meckford]

My body used to take 3 days to recover. I couldn't spell or add 1 & 1. I found it hard to shake depression or mood swings. After many years of yoga, meditation and relaxation I gained confidence to stop the medication that was not controlling the seizures anyway. Now 7 years later, I feel strong and more in touch with body, mind and spirit. I can recover 100% in 24hrs. My nocturnal seizures follow a pattern every 10-12 days. My brain is much clearer, but memory gets worse, little by little. I can handle the mood swings and anxiety. That is not to say I am not affected. Many more pros and cons, Love to hear your opinions. My 60yrs birthday is this month and I wonder what are the affects of aging?

[Pauley]

I have an undiagnosed sleep disorder. Either REM or nocturnal seizures. Carcamazepine didn't agree with me at all. I'm currently on 1mg Clonazepam which isn't controlling my nighttime unpleasant experiences. I'd say battle it out without meds. Regards Paul

[Edwin1234]

Hi. That's interesting to hear that you managed to get off the medicaation and find alternative ways to deal with your condition. I have been taking Epilim since I was 16 yers old (42 now) when my epilepsy was diagnosed. One of the side affects of Epilim I was told was that it can make me more 'drowsy'. As I was only in my teens at the time, still figuring out my body and person yet, and because I've been on the medication ever since, I can't really say for certain if the side affects have affected me or to what extent. Generally I am a slow-minded person, drowsy a lot of the time perhaps.., but nothing that seems not normal to me, because as I say it has always been part of me. On several ocasions I tried to stop taking the medication (without consulting the doctor), I reduced it gradually over a few days or week (maybe not long enough) and then stopped..., but from this I discovered that it was a mistake to stop it and that I would most probably have to be on the medication all my life, as I soon enough had the seizures again and blacked-out. With the medication I am completely seizure-free.

[meckford in reply to Edwin1234]

Tks. what you say about going off meds. helps, I see it's a matter of accepting which side of the fence to be on. Not a choice I want to make, as I love the clear head and awareness I can have without. But as the years continue I need to choice the wisest one, so I guess going back on the meds. again and hope to find the one that will improve things. Coping with the side-effects will be more manageable than the seizures as the body and brain gets older. And also for my family, after all they are the ones who are affected when I am out of it.

[Hidden]

I guess it depends on each individual. It is great if you are able to control your seizures and feel better through life style changes.

I tried two different medications to control seizures, first of all I was given Lamotrigine but was allergic and ended up in hospital with DRESS syndrome. After that I was put on Levetiracetam (Keppra), and after that first experience I really didn't like the side effects, or trust the medication as guess I was expecting something worse to come up.

As my seizures were caused, initially, by a tumour which was resected, I was allowed to come off the medication (on my insistance) after two and a half years, but the seizures returned and the neurologist and neurosurgeons that treated me since have told me that my test results and symptoms indicate I will be needing AED's for the rest of my life. My seizures (convulsive tonic-clonic) and focal seizures cause anxiety that doesn't go away easily and effect my confidence, so I prefer the side effects of the medication, even though in the beginning I thought I would prefer it the other way around.

Have you tried the newer medications at low level dosages? Perhaps ask your neuro about possible long-term memory problems and how ageing can change things.

It seems like you are really strong and have lots of internal resources to be able to manage your condition so well for so long, if you have doubts though, it is a good idea to check in with a doctor medicine is making advances all the time.

Wishing you the best.