Actually, it would be more correct to say a funny thing didn't happen in the hospital.
I didn't have a seizure.
This was unfortunate, because I was there for a video EEG and the sooner I had a seizure, the sooner they could record/measure what was happening and I could go home. After the first day, I started trying harder. I started eating lots of sugar, which is my kryptonite. Nothing. I started taking large doses of the Fancy Folic Acid, which usually does the trick.
Nope.
Then I tried both together and all I got was a headache.
Finally, I had Himself make up a vile concotion containing a huge amount of sugar, and after I took that AND the folic acid AND ate a large, carby breakfast, I finally queezed out a medium-sized seizure on the fourth day.
I have never had to work so hard to make one happen before. My problem is usually getting them to stop.
After I got home, I pondered this. Why was it so hard to seize in the hospital? Usually, I just spike my blood sugar a little and boom! I could think of two things that were different in the hospital:
1. My activity level there was nil.
2. They had been injecting me with blood thinners as a precaution.
I didn't think it was #1, as I have had periods of inactivity before. So I Googled "blood thinners seizures" (or something) and I found this disease called Antiphospholipid Syndrome (APS), AKA Hughes Syndrome. I read through the symptoms, checking most of them off as I went. Talk about a lightbulb moment! After almost 8 years I had something that seemed to fit about all of my neurological symptoms.
I will spare you the begging I had to do to get tested for this. But it happened and the initial tests came back positive for APS . The treatment is blood thinners, however and the neurologist didn't want to manage that treatment plan. I went to my haemotologist and he wanted to send me back to neurology for management. Sigh... More begging ensued and he agreed to manage a trial of an injectable blood thinner.
It is working.
The seizures aren't completely gone, but are reduced enough that I am not in constant fear of having one. I hadn't actually realized how much that had ruled my life until I had to worry about it a lot less. And now that the fear is diminished, I feel I want to do more; go out more. Get more active! But it's not that simple. because I have other symptoms; extreme fatigue, joint pain and swelling. So now I have to focus on getting that fixed.
I changed rheumatologists (my previous one flat-out refused to test me for APS despte having SEEN me seize on the floor of the examination room). The new guy did a bunch of tests that the last one failed to do. My bloodwork is still mostly fine for rheumatological disease, but he x-rayed my hands and feet. Both show signs of joint/bone damage consistent with an inflammatory arthritis. We don't know which one yet, but will be starting treatment regardless. Needless to say, I am very angry at my old rheumatologist right now, but that's a story for another day.
The good news is I feel I am finally getting somewhere at last.
After almost 8 years.
