Is medication actually better than none?

[BillK]

I wonder at times (and friends do too) if medication actually does any good. I've been on various and still have about two days of seizures (sometimes with a lot on that day) per month.

Maybe I might even have that with no medication and no side effects. Anyone ever consider the same? Did anyone actually try slowly easing off entirely and seeing what results?

 

[Fedup]

BillK

I would imagine most of us have at some stage at lest I did but the prospect of having a lot more without the medication, it's just not worth it for me. I would like some sort of life so I stay on the medication.

 

[C0urt]

i just got prescribed nine more pills a day blegh,

but i was having 2 and more break through seizures and not noticing them, my gf would just tell me about them, or i would find her somewhere cleaning up blood gets old after a bit

 

[Wobblez]

I've often wondered the same thing. Laying in this hospital bed having a 2 week monitoring EEG has shown me what life is like off the medication. I still have the fuzzies and I still feel tired. I'm having seizures every day at the moment and thats just laying in bed. It has renewed my faith in Lamictal.

 

[Nakamova]

It's an individual decision as to whether the benefits of the meds justify their side effects. I've tried twice to slowly wean off the meds, only to find my seizures (tonic-clonics) escalating as a result. So for me, for now, the answer is to stay medicated.

I find it frustrating that promising non-medication treatments such as diet or neurofeedback are given short shrift by neurologists and insurers. At the very least, the promise of treatments relatively free of side effects should be attracting funding for rigorous large-scale tests; instead, the money continues to go to medications, implants, and surgery -- all valid approaches, but ones that can carry considerable risk and quality-of-life issues.

 

[Rocky Mountain Gemini]

Discussing this with my last land lord who was a neurologist, and she warned me against it saying that the more seizures you have the more you are likely to have, something about how each seizure opens up more pathways in ones brain for this to happen. Don't know how true that is, but certainly enough to scare me away from even trying it.

 

[BillK]

Thanks for the helpful replies. I've heard great things about neurofeedback as well but it doesn't seem to be covered. I have some savings and might try it anyway.

I have heard too that the more seizures you have the more likely they are to happen (and the reverse). My latest doctor warns me that we have to get a handle on it or they'll continue to get worse - but I've sometimes seen the opposite in the literature. I bet thirty years from now they'll look at what we did and consider it like we do medieval medicine, particularly some of the surgeries.