(This is a mix of facebook posts and journal notes, since it's been over a month.)
Day 1, June 26:
They said I’d be bored in here but they have hardly left me alone since I got here. So far I have met two neurologists and countless nurses and aides, given a lengthy account of my history and medications, had my blood taken, had an ecg, had an IV port installed (it took them three tries so I have bruises now), had three people do the basic neuro test on me, had my weight and height done, had my BP/HR/Oxygen done twice… what else… all of those in just the few hours since I’ve been here. Oh and all while hooked up to my new EEG buddy.
And… they’ve already begun the med reduction. So… it begins.
Eliminated Cenobamate the first night.
Note: Very grateful for my brother, who accompanied me from home to the hospital. I was a bundle of nerves and it was so good to have him with me. 
Day 2, June 27:
I did NOT sleep well… it’s very noisy in here, even with earplugs. I don’t have a door on my room, just a curtain, and the nurse desk is right outside my door. I hear all the conversation and all the alerts and alarms. I was waking up every hour or so all night. Then the nurses came in and woke me up at 1am because my computer alarm went off, telling them I was having a seizure. But I didn’t feel anything and doctor confirmed today that it was a false alarm.
So today… just sleepy and headachey.
They’re cutting my other two meds in half tonight so then I’ll be down to a fraction of what I was at before I came in here. A bit scary but that’s why I’m here.
My arm and hand are sore from being poked so many times, and the IV port is annoying. But I’m just being a baby about those…
It’s actually kind of nice having people waiting on me hand and foot. Bringing me food, taking care of everything, and my only job is to sit here and manage my brain.
Liza and Carl came to visit and brought me flowers and cookies, and kept me company for an hour. Happy for that.
Day 3, June 28:
My brother Vinny came to visit and brought me toilet paper!! Not since Covid have I been this excited about tp. The hospital tp is terrible… that thin, horrible little papery stuff. So I asked him to bring me some real tp and he did.
He also picked up Starbucks from downstairs. Amazing.
Re: my brain, nothing to tell yet. All I’m feeling so far is that my meds are wearing off. Mostly I’m feeling buzzed. My meds are already down to almost nothing, and reducing again tonight. Also tonight the sleep deprivation starts! I’m only allowed to sleep 2am-6am. Let’s gooooo!
Plan for tonight is to watch flashy movies and try to stay busy until 2am!
Day 4, June 29:
- Barely slept during my 4 hours allocated time. Woke up out of sorts but felt better after breakfast and coffee.
- Morning rounds with allll the doctors, nurses, and EEG techs, just like on TV(!)
- My ECG showed a possible abnormality; I told her about previous ones and gave her my cardiologist's name so she can get the records.
- EEG has shown some bits and pieces but nothing definite. Need some real seizure activity.
- Completely off all meds now.
- Prescribed Vodka with OJ in the evening!
Day 5, June 30:
I still hardly slept last night, even after the short night previous. I just felt wired all day. I think it's a combo of the cenobamate leaving my system plus extra coffee yesterday afternoon. Normally coffee doesn't impact me but now with the meds gone I think it was too much. Will reduce that again today. Woke up pretty out of sorts this morning, overtired and getting frustrated. This is the first day that I'm feeling the difficulty. Cried when nurse came in to do my morning checkup. He said they may be able to give me something to help sleep but I'm not sure--I know that sleep deprivation is a trigger. I just hate feeling like this. He said there is another guy here who is on day 7 with no seizures and is feeling pretty rough as well. And another left yesterday because he couldn't handle it anymore. I don't want to do that.
Spent much of the day just trying to go back to sleep. No luck. No seizures, either. This part sucks. Feel like my nervous system is crashing out.
Vinny came to visit again, and we played cards. It felt good to have him here and to laugh.
"Be persistent and tough. Someday this pain will be useful to you."
Day 6, Canada Day:
- still only slept 4ish hrs last night.
- woke up feeling mentally better than yesterday, but feeling the sleep deprivation and totally crashed mid-afternoon.
- this morning I started feeling slight sensations that made me think, “it’s coming today”. So I’ve been waiting/hoping but still nothing.
- something is up with my heart (maybe?). They had done an ECG a few days ago and there was something they didn’t like so they were going to contact a cardiologist I saw a couple of years ago to get previous test results and compare. They didn’t tell me today whether anything came of that yet but then this afternoon (of course as soon as I was trying to nap) someone came to get a new ECG, and shortly after someone came for more blood tests. I asked the nurse what was up and she said they were just trying to confirm what is showing (but they haven’t told me what that is). I’ll ask the doctor tomorrow.
- thank you to Laura and Kelsey for coming to visit today.
- more alcohol tonight. 5 doses instead of 3.
Day 7, July 2:
- slept 3.5hrs
- no seizures
- sounds like the heart thing is a non-issue, they were being extra cautious.
Biggest thank you today goes to Ray, who brought me THC gummies. Hospital approves: THC is both a seizure trigger and a sleep aid. I really hope it will do both!! I neeeed sleep.
Also, they wanted to change my electrodes today, which was a bit of an ordeal. They removed it all and then I had a mess of gluey hair to comb through and take a short shower (first since Friday!). Tried to wash out as much glue as I could. Hair was coming out in clumps (I’m going to need a trip to the hairdresser after this!). After my shower I got to be free of the hat for a bit while my hair was drying. Then he reapplied.
Worst part though is that some of the electrodes left big sores on my forehead. He had to put the fresh ones in slightly different spots as a result.
Onward….
Day 8, July 3:
SEIZURE DETECTED. SEIZURE DETECTED. SEIZURE DETECTED.
THC for the win!
I slept quite a lot better, AND the seizures finally started.
Big generalized one at 4am. I woke up to nurses standing over my bed. Too groggy to know what was happening. They said I "cried out" when it started, then had a big TC. They gave me Ativan and an oxygen mask, as apparently I was going blue. Then I went back to sleep for awhile.
In the morning I had three focals, and three more in the afternoon/evening. They gave me more Ativan.
Dr says all the data looks good. I go back on meds tonight. Tomorrow I will have my MRI, and then hopefully discharged. Can't wait to sleep in my own bed!
Also:
- Calves extremely cramped
- Seven altogether (1 big, six little)
- started back on meds in the evening
- took one more THC just to sleep
- Vinny came to visit
Day 9, July 4:
I am slowly going crazy!!!
I thought I was going home today.
They caught tons of activity yesterday, and started my meds back with the intent to discharge me today.
BUT
I have to have an MRI before discharge. It’s now 7:30pm and no one has any idea when the MRI will be. Possibly in the middle of the night when they are less busy. So…. Looks like I’m spending another night here.
Meanwhile, the EEG cap is DRIVING ME NUTS. It’s soooo itchy. I just want to rip it off myself. And I don’t know why they’re making me keep it on when that part is done and we just need the MRI. I want to take this off and have a shower but they won’t let me.
Send snacks.
Day 10, July 5:
MRI done, discharged, and HOME!!
- two more focals were caught on Saturday
- Dr said "they all look the same", which is good news (no ambiguity)
I took the cap off myself since the nurses wouldn't (strike) and it was a Sunday so the EEG techs weren't working, and it was driving me insane, and I was sick of waiting around. It left big sores on my skin.
All I did once I got home was sushi, shower, and sleep!!
Post note:
It took a week for the brain fog to lift, and several weeks for my energy to return. I went for a massage and a haircut to help my nervous system. I'm writing this six weeks later and I still have red marks on my forehead from the sores that the EEG leads left. I am putting cream on them daily in the hopes that they don't scar(!).
The whole ordeal was difficult and I really hope I don't need to do it again.
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