Last week was the worst week I've had in over a year.
I had 14 partials over a 5 day period, leaving me completely exhausted. I was also very depressed for most of the month of January. Worst month since starting the meds. I seem to be getting worse, not better, which says to me that the meds aren't working. In any case, they're making me miserable so something needs to change. But my neuro won't see me until May (I am on a cancellation list, but no promises...).
There is a massive amount of frustration with knowing that the meds aren't working, they're making me miserable, and there's nothing I can do until May.
So I've been reading a ton. I had a stack of epilepsy books out of the library, and the thing that comes up over and over again is the hormonal connection. I had considered it before but the pattern didn't seem to be consistent and my neuro didn't care to talk about it, so I had left it alone. But one of the books from the library had an entire chapter about hormones and hormone therapy, and now I'm revisiting this.
When a woman's seizures are connected to her cycle, it's called catamenial epilepsy. Catamenial epilepsy is most common with temporal lobe epilepsy (which is what I have). In a nutshell, estrogen excites the temporal lobe and progesterone calms it. So if you have too much estrogen, not enough progesterone, or both, the estrogen will trigger more seizures. As well, the seizures themselves can fuck up your hormone production, creating a vicious cycle of seizures and hormone imbalance. It can also create problems with fertility, ovulation, etc. A lot of women with catamenial epilepsy will supplement their progesterone, which helps balance things back out.
Given that (I think) I'm in peri-menopause, and my seizures started during peri-menopause, there's a strong possibility that my hormones are contributing. I also have a number of the symptoms of low progesterone, though most of those could be attributed to other factors.
My hormones were tested in November 2015, just after the seizures started, and my levels were within range at that time. But of course those numbers change throughout the cycle and can definitely have changed since then, so it's not necessarily accurate.
So I went to my GP. He is much more open to talking about possibilities than my neuro tends to be. I told him my frustration and what I've been reading, and that I want to explore this connection. I told him that I'm not going to make it until May, suffering and waiting for months and unable to do anything. I cried. He responded by prescribing me a progesterone cream to try for a few months. It may or may not help, but it won't hurt me and allows me to feel like I'm trying something while I wait for the neuro.
Today I spent some time plotting out my seizure log with my period log, to see if there is a correlation.
My seizures are relatively spread out over the 4 week cycle, but there is a definite rise in weeks 2-3 (around/during ovulation). According to my reading, this would be because of the estrogen surge around ovulation. Week 3 is when estrogen is highest.
I have recorded 95 seizures during weeks 2 and 3, and 50 during weeks 1 and 4. So that's a pretty big difference, almost twice as many during mid-cycle. Also all of my generalized seizures have happened smack dab in the middle of my cycle.
I was hoping to find a pattern that is really clear-cut, but it's not entirely. That may be because there are so many competing factors (changes in my meds, going on and off the pill, stress, peri-menopause, etc.).
I'm going to keep tracking it, and I'm going to start the progesterone cream this month.
I have to do something, in any case. :(
