When I had my first seizure, I just had it – no warning, no aura, no nothing. Just BAM!
The second one had the mother of all warnings – we just didn’t know it.
One day, I forgot to take my morning dose of anti-seizure medicine. Around 1:00, I was trying to talk to someone and couldn’t get the words out of my mouth. They were very clear in my head, but I could not get them spoken. I could say some things, but not others. It was a very strange and scary situation.
I managed to get my neighbor (my hero and friend) to go pick up my kids from school and my husband raced home to take me to the ER. They were concerned that I might have been having a stroke or a brain bleed. At the hospital I was filling out paperwork…or starting to…and I kept trying to write my maiden name. I knew it was wrong, but couldn’t get the right name from my brain to the paper. It got worse from there and my memory got pulled into the fun. Since they thought I was having a stroke, they brought me in to see the doctor immediately. I don’t remember much more than glimpses after that. My husband tells me that at some point, after I couldn’t speak at all, the doctor was asking me if I could write down answers to the questions he was asking. I nodded, but wrote down nonsense. I eventually had a seizure.
Tests showed no brain bleed, no stroke, no new tumor activity – which meant that it was likely a seizure aura. Some people have illusions, smell strange things, have deja vu. I had expressive aphasia. It is not a typical aura, but is more often associated with brain trauma, tumors, stroke. My aphasia was gone after I recovered from the seizure, though I can’t say my memory became immediately crystal clear. I can only imagine how frustrating it would be to have expressive aphasia that didn’t go away when your brain came back on-line, so to speak. There are many people recovering from strokes or brain trauma who have to work long and hard with speech therapists to be able to say the simplest of things to their families.
It was scary for me, my husband, and my neighbor. They had thoughts that the tumor was back, that ‘this was it,’ that the other shoe was finally dropping. We knew why I had the first seizure and it (the tumor) was removed. I was on anti-seizure medicine merely as a precautionary measure. I only missed what was later referred to as a ‘baby dose’ – one ‘baby dose.’ All of this brought us into new territory. Because of the tumor and surgery, I now have a seizure disorder. A seizure disorder that’s now being controlled with more than a ‘baby dose’ of medicine.
I now wear a medical bracelet. We already had reminders set up on 2 phones, but my husband now sends me a text when HIS alarm goes off to make sure I didn’t turn MINE off, walk away and forget to take my meds. My kids and friends will ask ‘did you take your medicine’ any time I say I feel a little strange – usually I need to eat or have a teeny headache. We’ve learned a lot about seizure thresholds. Depending on the individual, that reduced threshold could be triggered by too much sugar, having a glass of wine, not getting enough sleep, taking allergy medicine, or any number of other things. For each person, it may be different.
We are trying not to be too insane about what mine might be – this isn’t something I’d like to ‘experiment’ with to figure out. I may be erring on the side of caution, but I’d rather live without constant fear of compromising the threshold than risk it for the joy of having a cocktail. I eat well and stay hydrated, I don’t drink alcohol (except for the occasional sip of wine – I AM married to Wilder on Wine after all), I avoid sugar, I try to get enough sleep – naps are sometimes needed to make that happen, but they happen. We may continue to be a little over-cautious, but I think everyone feels a little better that way.