Do any of you have any pointers on what to do when the t/c's become frequent enough that it starts to seem as if every muscle hurts all the time, and the general fatigue never really goes away anymore?
Since August, the frequency of my t/c's has been steadily increasing. I've never been completely seizure-free, except for a period of about five years between the ages of 18 and 23 that now seems like a miracle. But the tonic-clonic seizures used to be sporadic and, as someone wrote above, manageable with appropriate doses of 'sleeping it off' and 'babying' afterwards.
Things are different now. For the month of March, 2013, I stopped counting after t/c #50, which occurred on March 26. They often seem to happen in clusters: I can go three days without having a seizure, and then have four of them on the same day -- but it's not status epilepticus, as I invariably regain consciousness for up to several hours between them.
The net result, for me, of having 50 tonic-clonic seizures over a period of four weeks, is that I feel sore and tired all the time. "A few days off work" is not really an option in that scenario, or I'd have to stop going to work at all.
Before you ask: yes, I've seen my neurologist multiple times over the past few months, and once every three months before that. In the four years since I went back on meds, we've tried eight different medications in various dosages and combinations. Medications that used to work well for me when I was younger don't seem to do anything anymore, and some of the newer ones (like Keppra) appear to actually make the seizure activity worse.
I am not a good candidate for surgery (my seizure activity can't be isolated to a specific region in my brain). And yes, there is a tumor-like abnormality on my brain scan (they're calling it a cyst, which I suppose is less alarming, even if only slightly so), which was first observed about a year ago, but according to one doctor, could just as well have been there since before I was born. It doesn't seem to be growing, or if it is, it's growing very slowly. Nobody seems positive that it has anything to do with my epilepsy, or with the increasing frequency of my seizures. And even if it did, they would be hesitant to take it out, as there would be a reportedly significant risk of permanent vision problems afterwards.
There is one hospital within my reach that does the NVS implant surgery, but I was disqualified as a participant in their program due to other neurological issues I have (I have a mild case of cerebral palsy, which is a movement disorder).
I've now been put on the Modified Atkins Diet, even though my neurologist initially advised against that, on the grounds of it being 'too complicated to stick with'. I've been at it for about a week now, and initial results seem somewhat promising, but not exactly life-altering. I had two tonic-clonics at work yesterday, and was about as useful as a sack of potatoes for most of the rest of the day.
I've essentially been told, by three different doctors, that my issues are 'known and extremely chronic', and that even though we can keep trying to fiddle with the meds until we find something that works at least a little bit, it's likely that I'm just going to have to make peace with the fact that I can have a seizure at any time.
In other words, I have to learn to live with this. But I don't know how to live with fifty seizures a month. I don't even know how to live with ten of them in a month. Like I said, I'm sore and tired all the time. I am extremely lucky in having found a workplace, and a group of colleagues, where I am not looked at askance for having epilepsy, and where nobody complains if I show up three hours late one day, and make it up whenever I can. But it still feels like a huge fight.
I made a list, recently, of 100 things I want to do before I die. It's my way of reminding myself that life is still worth living. Because sometimes, I forget why I'm still trying.
So, besides looking towards the future, what else should I be doing to make the road ahead a little smoother?
you sound like an incredibly strong person with great will.