Some side effects are tolerable. Others are life threatening. I've had some serious run ins with side effects that have changed my life forever, despite the fact that my seizures were controlled at the time (besides the complex partials, which have never gone away). I had Stephen Johnsons reaction, which could have killed me, and I had to go off every last one of my medications for ages as a result, which left me having several seizures daily. The rash is itchy enough to make you go mad; you just want to scratch your skin off. I've also had severe hyponatremia from tegretol, which left me bedridden with encephalopathy for months on end, which obviously caused seizures all on its own and left me with a bunch of other symptoms that were difficult to take. I had to cut my fluids down to intolerably low levels for months and have never recovered the memory, memories, and cognitive function I had before that happened.
I've had severe enough reactions to all but one anticonvulsant thus far for my neurologist to refuse to try them out again, so even though I'm responsive to meds, I don't have the option of meds anymore, other than neurontin, which as far as I gather won't control my tonic clonic seizures. I haven't started it yet, so I'm not sure. Currently, on phenytoin, I'm having seizures all the time--myoclonics, partials, and tonic clonics, because my body won't absorb enough of it. I can't work, can't go out, can't see friends. I've been completely isolated for three months and I'm so lonely I feel I'm about to break. I had to go to the dentist today for the second time in two weeks to fix the teeth I broke during tonic clonics during the last week and it was a nightmare--I had no idea where I was or how to get anywhere. I eventually hired a taxi to take me where I needed to go and he was kind enough to take over when I couldn't tell him much about where I had to be. I guess everyone's story is different, and you don't know what it's like until you ask.
Also, you don't really know what else is going on in a person's life--there are more things to cope with than just epilepsy. Some of us are coping with trauma, others with PTSD, others might be involved in abusive relationships, and others have co-existing illnesses to deal with along with epilepsy. I'm not the sort to fall into sympathy. I may vent because it's therapeutic to do so. That doesn't mean I'm feeling that way all the time. It just means I'm choosing healthy ways to live without that anger and pain by processing it in safe places. For me, the fact that I'm not allowed to drive or the fact that I have seizures when I'm out in society are the least of my worries. I have far more pressing concerns to cope with.
