That lasted less than two weeks.
And then this happened:
Monday, Dec 19 - I couldn't sleep that night. No idea why--it's just the way my body works. Sometimes I can't sleep. I was chronically sleep-deprived for 16 years, and ironically this finally improved last year when I started on iron supplements, which only came about because of the zillion tests they gave me when my partial seizures started. So overall I've been sleeping a lot better, but there are still nights when I don't sleep well. This particular night, I slept a total of maybe 3 hours, and then had to get up to go to my business coaching.
Tuesday, Dec 20 - I arrived at my business coaching for our 7:45 start. The room was cold, so I kept my coat on. We were maybe 15 minutes in, and I was mid-sentence when I had a generalized seizure. This one was different from the ones I had in June. In June, both of my seizures started with partials and progressed. This time, I don't remember having a partial. I don't remember anything. I literally went from mid-sentence to waking up in the hospital. I remember nothing in between except blurry outlines of faces looking down at me, and Katharine from my group saying she was coming to the hospital with me. I don't remember the ambulance, or the paramedics, or being moved from the building or into the hospital. Completely and fully out of it.
Once in the hospital (the big one in Surrey, since that was nearest) I was still foggy but gradually started to come back around. It took some time though. I'm pretty sure I called Katharine by the wrong name at least once. They were asking me questions like what day it is and what meds I was on, and my doctor's name, and I couldn't answer them at first. I was so confused and could not think straight or remember anything. Meanwhile they were sticking all sorts of needles in me. I was only partially aware of it at the time. I remember them telling me they were going to give me fluids, so they stuck an IV needle in my left hand (there was already one in my right--I don't know what that one was for). They were also trying to do blood work but were having a hard time finding a good vein. After all was said and done I had 6 holes poked in me, two of which were IV needles in my hands, which left some lovely bruises that are just fading now, a week later.
They were really busy that day and there were times when I was left alone, and I was crying so much that a couple of nurses finally checked on me and gave me some tissues.
The ER doctor was really good and much more personable than the one I had talked to last time at St Paul's. I don't know if this one was a neurologist or just a regular ER doctor. He asked about my meds, and who my neurologist is, and about my history of seizures. My head was just clearing enough that I was able to answer his questions. I told him that I hadn't slept the night before, and he said that was most likely the trigger for this seizure. I gave him the name and number of my neuro and he said he'd fax over their records from that day.
At some point in that time, Katharine had managed to contact my brother Isaac (did I give her his info? I don't remember). Katharine picked up Isaac at the Skytrain and drove him back to my car, which he then brought to the hospital and stayed until I was ready to go. I'm so grateful for both of them. They just took care of it, and me.
At some point the doctors and nurses stopped paying attention to me. I think the doctor had said I could go, but I wasn't sure and couldn't remember. I tried to get someone's attention to ask if it was ok for me to leave, but I couldn't get anyone's attention so I just left. Isaac came in from the waiting area and walked me out, which is good because that hospital is a labyrinth and I never would have found my way out otherwise.
Instead of driving me straight home, we went in to my office briefly. I had to fax something and pick up some stuff so I could work at home. It seems weird now that I went to work at that time. My brain was so foggy, though I didn't realize it at the time. I had a killer headache and was starving because it was now lunch time. So after stopping at my office we also stopped for food, and then Isaac brought me home. I spent the rest of the day relaxing. I felt physically ok, just incredibly tired.
Wednesday through Saturday - Exhaustion, brain fog, and depression. So much sadness and anxiety. I don't know how much of this was related to the physical toll and how much was due to the hopelessness of the situation. I had JUST gotten my car back, and now it's gone again. I was lonely and restless and wanted company, but too tired to do anything. Cried a lot over those several days. Felt very isolated. Had text conversations with friends which immediately disappeared into the brain fog and were forgotten. Spent a lot of time in bed. Resented Christmas and facebook showing everyone being happy and surrounded by family and friends.
And something else which I haven't talked about in this blog yet: suicidal ideation. This is not something I had ever struggled with until I started on the meds. My neuro has expressed concern about this when I've mentioned it to him. I know he will change my meds if I ask him to, if I feel that I can't manage this. But so far no matter how terrible I feel I just keep telling myself that it will pass in a few days, because it's just the meds fucking with me. And sure enough, it eventually does. But those days are still terrible.
Sunday, Christmas Day - I was still feeling horribly sad. I had agreed to go to dinner with Isaac and Karen, but was having second thoughts because I was feeling so shitty. At the same time I knew that going out with family would probably help me feel better. They stopped by in the morning to drop off my Christmas gift. Isaac had sent me an Amazon gift card that morning, but also brought over "something to unwrap". It was a painting that he had done himself, because I had mentioned that I needed something for the wall by my desk. I had said that I wanted something meaningful, not just random, generic art. So he painted me something meaningful. It's based on a picture he had of local coastline, and shows what makes me happy. Of course the gift made me cry, especially given how thoughtful and sweet it was.
I did end up going for dinner later with Isaac, Karen, and Rob. And it did make me feel a lot better.
Isaac's painting:
Monday, Boxing Day - Day 7, and I finally started feeling myself again. I got enough sleep, had energy, and felt emotionally stable and hopeful again. In June when the first seizures happened, it also took to day 7 for me to feel myself again--so I'm assuming that's my norm. All of the brain fog from the past week cleared at once and my mind was racing all day, thinking about what I want to do in 2017 and how I can make it a better year. Part of that is getting control of this shit. So I went online and requested a dozen books from the library about Epilepsy, including general knowledge, lifestyle, and alternative and dietary treatments.
I also decided that when I see my neuro again I'm going to ask him to add a medication--but to make sure that it's one that will not make the depression worse. I've heard good things about one called Lamictal, used in conjunction with the one I'm already on (Keppra). My next appointment isn't until April but they may ask me to come in sooner after they get my report from the Surrey Hospital. We'll see. Otherwise I'll just keep doing what I'm doing until I see him again.
If you made it through this long post, congrats. :P I wanted to be sure to document everything so that I will have it on record for future. I don't want to forget anything.
