Until yesterday, around 4pm.
I had had a full day of meetings and was sitting down at my desk to write some emails. Mid email, I felt as though one of my stronger episodes was coming on--intense deja vu, feeling like I needed to pause and breathe through it.
The next thing I knew I was waking up from unconsciousness, while being loaded into an ambulance. I had no idea what was going on or why I was there--severe confusion and brain fog for a few minutes. They were talking to me and said, "Amanda is here" but I didn't yet know what that meant either. I remember him putting the IV thingy in my hand, and then I fogged out a bit because I don't remember going from Ambulance to hospital.
Amanda is an advisor who works in my office, and here's what she relayed: Another advisor noticed me having a full-on seizure in my chair. Apparently my hands and feet were shaking (not the whole body) and my face had fallen forward onto my chest so my airway was blocked and I couldn't breath and was very pale. The first advisor panicked and didn't know what to do. Apparently she actually thought I was dead (!) and that's why the ambulance got there SO quickly. Amanda's office is right next to me so she got in there pretty quickly. Luckily, Amanda has lifeguard training and knew what to do. She lowered me from chair to floor and opened the airway, at which point she said I started taking big breaths of air and the shaking stopped. She brought my shoes, keys, and phone into the ambulance and accompanied us to the hospital. She had everything taken care of before I even knew what was going on. I was still trying to figure out where I was an why. Apparently I asked the same questions more than once, and there was a lot of conversation that I don't remember. Also, Amanda said I was flirting with one of the paramedics (I have ZERO recollection of that!). I also had a headache, but they wouldn't give me anything until a doctor saw me. I was also really scared and cried a few times.
In any case, we were then sitting in a bed in emergency waiting for a doctor, but that was taking a long time. I wanted water but they would only give me ice chips. Also, I really had to pee but they wouldn't let me go to the bathroom unaccompanied. So poor Amanda had to accompany to the bathroom (this is a bonding and humbling experience!). I also got a urine sample while doing that.
Amanda asked if I wanted to call anyone and I said my mom and my brother Isaac. We also contacted my landlord to ask her to let Sammy out in the yard for a bathroom break since we didn't know how long we'd be. I knew that Isaac would probably be able to come to the hospital, and also that he could drive me home after if needed (my car was still at the office though). Got ahold of Isaac around 4:50pm but he was driving back into the city from somewhere else, and he couldn't come right away. He was able to get to the hospital by about 6:30pm, and at that point we were still waiting for help. Shortly after Isaac arrived, a doctor came to ask a bunch of questions about what happened, my history, my meds, and my previous tests. He asked a lot about potential triggers, why this might happen today (alcohol, stress, etc.). I had no answer for why it might have changed so suddenly. The only thing that has changed in the past week was that my meds were increased, and that should make it better, not worse (also my meds are still relatively low dose). That doctor said we may have to re-do the CT scan, possibly some other tests, and I may have to stay the night but he wasn't sure. After that doctor walked away to order the tests, I had another seizure. Again, all I remember was feeling as though one of my regular episodes was coming on--intense deja vu, and feeling that this same scene had happened before, and trying to remember. I said to Amanda, "you were in the last one" or something along those lines, because it felt like a repeat of a previous one.
Next thing I know, I'm waking up in a different room, clothing removed, hospital gown on, sticky sensors stuck all over my body. Isaac was there, and I remember someone doing something on my left side while Isaac was standing on my right side, holding my hand. Isaac said they gave me meds through an IV but I don't remember that. I thought someone had said it was Ativan, but according to Isaac they said morphine. This is weird because morphine is for pain and Ativan is for seizures, and to be honest I am not really sure what they gave me. I was pretty foggy for awhile again. Isaac said I kept asking him the same questions over again:
- how long was I out?
- where are my clothes?
- Is Amanda here?
- Will you take care of Sammy?
I don't really remember asking those once, let alone multiple times. Also for some reason I kept thinking about the donut I had left on my desk... when all this started I had just sat down to write emails and eat my donut... but there it was, getting stale while I was in the hospital. ;) (I did eat it later at night!)
Apparently Amanda and Isaac had been booted out to the waiting room during the second seizure, for about 20 minutes. I don't remember that, just waking up and Isaac was holding my hand. Shortly after this I let Amanda go home. She had updated a few of my closer friends and Danielle was on her way over to support as well.
They took blood twice (the second time was to test my Keppra levels), and called the on-call neurologist (I don't know why they waited for the second seizure before calling him!). My headache was way worse after the second one so they gave me Tylenol but it didn't really help. Later I had some Ibuprofen from Dani and that helped a little but mostly I needed to go to bed.
The neuro came, asked me all the same questions I'd already been asked while someone else took notes. I told him about my med increase and he said I can increase it again (I was going to today anyway because it was a graduated increase). The neuro was FAR less concerned about my condition than I was. He seemed to think it just fine for me to go home, and I asked what to do if it happens again while I'm at home, and he said I will be fine and don't need to return to the hospital unless I think I can't ride it out on my own. He said no swimming or other bodies of water for the next while(!). Also no driving, which I knew would be the case. He said they will send report to my own neuro, but he isn't in office until Monday so for the weekend I'm on my own. He also said they would not be re-doing the CT or other tests. In other words, as soon as the blood tests were done and I got my clothes back, I could leave. Dani showed up somewhere in this time frame and was able to drive Isaac and I back to my car so that Isaac could bring me home. Dani gave me orders (in no uncertain terms) that I am to take at least today off, possibly more. I only had one meeting scheduled for today so I will reschedule that and see how things go. Isaac is staying with me today but if the day goes well I will send him home tonight too.
Also while Isaac was driving us home last night I had another one of my "regular" episodes in the car. But this one didn't progress, thankfully. One of the difficult parts of all this is that I can no longer drive (until I am at least 6 months seizure-free, so who knows how long that will be). This is going to complicate my business commute. I think it's manageable... I just need to plan better and spend a lot more time on transit. :/
So now... I don't know what happens. I will talk to my own neuro, possibly another med increase... not sure. The saga continues. :(
Hospital Selfie!
Fuck.
ReplyDeleteThe episode at work sounded dangerous. If your airway can really get closed off, then maybe it's best if you weren't alone.
Sending good vibes your way.