So today I had an EEG, which was actually supposed to have been done a month ago but the technical got attacked by a dog. (I thought it was a cat but I was wrong. Whatever. I claim autoimmune fatigue brain!)
Anyhow, I havne’t had an EEG in probably 8 years, mostly out of stubbornness. I was having seizures, but several in office EEGs, along with one 48-hour mobile EEG, and a weeklong in hospital monitoring EEG, came back normal-ish. There were changes in my brainwaves that weren’t considered normal, but they weren’t associated with epilepsy either. Worse was the fact the doctors couldn’t seem to agree. One neurologist would say that the activity indicated potential seizures, while another would say it was unrelated. Eventually I gave up. I stayed hydrated, avoid fatigue, gave up alcohol, and things seemed okay. Keyword: seemed.
I later learned what I was calling “funny episodes,” were potentially partial seizures. I had thought I was having TIAs, but my CT scans were normal. After being made to feel crazy, I stopped bringing up the attacks when I talked to my doctors. If they were nothing then they were nothing. Why bother wasting the time talking about it, right?
Only they weren’t nothing. In June an attack generalized into a large seizure, and again in November and Sunday. The one in June led to me being transported via ambulance to a large hospital where the neurologist listened to my ex explain what had happened, and what we’d caught on video. The video is embarrassing for me, so I’m not going to post it, though I will try and upload a still from the early (potential) partial seizure. I get auras, though not always before the partials, but the partials come on slowly so I never find myself shocked and suddenly weak on one side with lack of speech. The neurologist at the hospital looked me dead in the face and asked how long these episodes had been happening. I had to admit for years, and he was dumbfounded. According to him I’d been walking around having seizures without realizing it. Partial seizures don’t result in a loss of consciousness, which is why I remembered everything. They can, however, generalize, leading to tonic clonic (formerly known as grand mal) seizures.
My primary care doctor asked about my EEG results, but obviously I don’t have them yet. When I told him about the ER not wanting me on Tramadol, he nodded and suddenly remembered that was a bad medication for patients with a history of seizures. Whoops! We’re apparently ignoring the low potassium level, for now, though I’m guessing at some point I’ll need to have my levels checked again. Rheumatology tomorrow to see what they think about my medication routine. I’m having a lot of break through flares, or flares starting up when I’m at the end of my 2 week Humira cycle. You can inject weekly (ouch) but my liver is a little upset as it is, so we’ll have to wait and see what the lesser of the evils is. There is also a chance that steroids become a regular part of my life. Yuck.
Everyone applauds my upbeat attitude to events that strike them as terrifying, and I think it’s because I don’t know how to be any other way. The reality, though, is that I’m terrified and exhausted. I feel behind with work and school because I’m focused on trying to recover from infections that would bother most people, but destroy me. My mom comes into town today to visit, and she hasn’t really taken any time to look up my condition, nor do I expect she ever really will. She’s just not that kind of mom. It’s hard, but it’s just one more thing to deal with I suppose.
Hopefully tomorrow’s rheumatology appointment brings some answers, because I definitely need some better treatment options!