Seizure Investigation Unit (aka Epilepsy Monitoring Unit)

(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.

"I wasn't expecting that!"

 Today I went for my follow-up visit with the epileptologist to see about my EEG results and check in on my meds. 

During the 24hrs of the EEG, I felt nothing. No symptoms, not even my little "twinges" that I sometimes feel. I was worried that there would be nothing on the EEG. My hope was that there would be things I didn't feel. What I didn't want was another clear/inconclusive test that gives us no new info.

The good news is that there were indeed two blips on my EEG (yay!). They both happened while I was sleeping, and they were each only about 2 seconds long. 

Here's the weird part: they both happened in a different part of the brain from what we expected. 

Everything until now has pointed to my temporal lobe--especially my symptoms, but also my PET scan showed my temporal lobe affected. 

These blips happened not in my temporal lobe but in my cingulate cortex. Dr said, "I wasn't expecting that!"

He said that sometimes the cingulate cortex seizure activity can mimic temporal lobe seizure symptoms. I'm not really sure why this happens (need to go down that google rabbit hole!). So it's not unprecedented, but is apparently unusual. 

What does this mean? At this point, it doesn't really mean anything except that it's another piece to the puzzle. We have this piece pointing to the cingulate and we have the PET scan pointing to the temporal lobe, and without more testing we can't know for sure. 

More testing. I knew that was coming. I've already been on the list for an in-patient stay at the epilepsy clinic at VGH. Hopefully once that happens, there will be enough pieces to decide whether surgery is an option (I also want to ask about RNS... but that's a story for another blog post!). 

Dr was very careful not to speculate too much about this finding, but given what I know of him, I think this will be the type of thing that will interest him and hopefully give him a puzzle to work on. I'm not your typical TLE case, lol. 

For now, I keep taking my meds as normal, keep tracking everything, follow up in 3 months. 

Ambulatory EEG

Watch my video about the Ambulatory EEG here. :)

Getting to know the BC Epilepsy Society

 It's kind of wild to me that it's taken me TEN years to start to get to know the BC Epilepsy Society, what they do, and how they can help me. 

I'm told that this is partly timing: ten years ago when my journey was just starting, they did not have the funding and the programs that they have now. Apparently it's only within the past few years that they've been receiving more support from the community, have done a bunch of fundraising and have been increasing their programs. 

I came across it randomly; I was down a google rabbit hole looking for ways to help my memory, since that's a big area that I struggle with. I came across something called the "HOBSCOTCH" program, designed at the Dartmouth Hitchcock Medical Center in New Hampshire, and then found that I could access this program (for free) through the BC Epilepsy Society. It's an 8 week program where you meet online with a coach and work on challenges and strategies. I'm currently in week 3. :)

But aside from that, they have other stuff that I had no idea about!

They have counseling programs, and imagine this--most of the counselors have epilepsy themselves! I was amazed when I heard this. They also have a sliding scale so that people with lower incomes can get affordable counseling. What a difference that would have made for me back in the early days, when I was terrified and also broke! I'm not as terrified and broke now but I still plan to meet with one of their counselors. 

AND they have support groups, both online and in person (I haven't checked these out yet). 

I've been so excited about all of these things that I already want to help somehow. So of course I jumped on board when I found out that they are one of the charities for the Sun Run. I've only done the Sun Run once before and I swore I'd never do it again, but this is for a good cause. If I can do anything to help make other people's journeys a little easier, then I will. 

I already posted this on my facebook page, but expect to see it a few more times between now and April. :) 

My fundraising page

New Years Update

Happy New Year!

Point form updates since I haven't posted in awhile:

• As of today's appointment I'll be increasing the Cenobamate/Xcopri to 300mg nightly
• Clobazam is gone
• Topiramate should have been gone... got down to 0 and my brain was reacting so it's going back up to 100mg/day again. I just can't get rid of this one. Every time I try to go below 100mg, my brain reacts. As much as I don't like the side effects, this med works for me. So for now, it's staying. 
• I had 8 episodes in November, and 8 in December, thanks to the decrease in Topiramate. That doesn't include the little mini-sensations-but-not-quite-enough-to-log. 
• Overall, I've been feeling SO MUCH BETTER--physically, mentally, and emotionally than I was 6 months or a year ago. I think it's because I'm off of the Brivlera and Clobazam, but the epileptologist also credits the Xcopri; he believes that this med has positive effects on moods and energy. He said today that he won't be surprised if that comes out in future studies/reports because he's seen it a lot. What it means for me is just that I'm feeling better energy, better moods, more motivation. I'm happy about that. 
• I've been working on increasing my physical activity. A year ago when I started working 100% at home, my step count and general activity level went down dramatically. So as of Nov 1 I have been focused on doing 10,000 steps per day (100% completion so far). 
• Today I asked him about HRT, since I'm turning 48 this year. I'm not yet at the point that I feel I need HRT, but I think it's coming and I wanted to make sure that it will be ok for me, especially since my epilepsy is hormonally-connected. He said it's totally fine and I don't need to worry about it; he said that the doses in HRT are generally pretty low and shouldn't impact my meds, except for one (he said but I forget which one) If/when I do start it, we may make an adjustment. But we'll cross that bridge when we come to it. 
• I've been having a rash for the past several weeks under my bra area when I run/hike/sweat, and I asked him about that because rashes are always alarming with my meds. Showed him the pics. There are no other symptoms of the Death Rash (fever, glands, etc.). He said it's not likely related to the meds, so to try hydrocortisone and/or see my GP if it doesn't go away. 
• I've also had some muscle tremors/shakiness, and some weird moments where my words come out in the wrong order when I say a sentence. For example, imagine if you try to say "I painted the house blue" but it comes out "I the house painted blue". This seems to be improving as I adapt to the Xcopri, but it is weird when it happens. Doctor is not concerned. 

In other news, I discovered that the BC Epilepsy Society offers some programs including a free 8 week program for improving memory. I'm going to be starting the memory program next week online. I have no idea what it entails, but I hope it will be helpful! Will report back next time. :)

The Sleepy Days

I'll keep this short; I only want it here so that I won't forget about it when I'm looking back in the future. 

The past several weeks have been really hard because I feel sedated. I think it's a combination of the clobazam and cenobamate. Even though the clobazam is decreasing, the cenobamate is increasing, and the specialist said that it can make the side effects of the clobazam up to 7 times(!) worse. I literally feel sedated much of the time--not just tired, but drugged. 

I've never slept so much in my adult life. 

I'll sleep 9 hours in the night, then take a 3 hour nap in the afternoon, and still be falling asleep in front of the tv by dinner time. 

(It's a good thing I'm not driving.)

The clobazam will be gone very soon and there are no more imminent increases in the cenobamate, so my hope is that this will start to resolve itself within the next week or two. 

I remember feeling extremely sleepy in the early days of the Brivlera, but it got better after a few weeks; hopefully this does one does too. 

Doctors without Bor.... Empathy

September 23 will mark 10 years since the first symptoms of my TLE began. In those ten years I've had doctor after doctor, test after test, medication after medication, ER visit after ER visit. In all of that, ALL of my tests have come back either clear or inconclusive. Symptoms pointed to right temporal lobe, but nothing ever specific.

Until now.

Two weeks ago I had a PET scan, and today the follow-up with the epileptologist. He showed me the images on his screen; the colours show what's happening in the different parts of the brain... "see how over here it's green and orange, and over here, it just goes dark?" That darkness tells us where the problem is.

It wasn't a surprise--it was exactly the area that we were expecting it to be. But for the first time in ten years, now I'm seeing it on the screen, in technicolour. Rather, I'm seeing the darkness where there should be technicolour.

He's still talking and I'm just staring at that dark spot on the image, and a huge wave of emotion comes over me. After ten years, it's suddenly concrete. I can SEE it. I start crying.

His response? "Why are you crying?"

He hands me a tissue and keeps asking me why I'm crying. I said, "because that," gesturing to the image, "is my brain, and it's broken."

What followed was a lot of:

"Stop crying"

"Be positive"

"It's kind of an insult to me that you don't believe I can help you" (!!)

"I'll refer you to a psychiatrist--you might have depression"

and so forth.

I told him that it's not about him, and I also said that it's normal for people with chronic illnesses to be emotional about such things. But he wasn't hearing it.

"Be positive."

Ok then... I'll just be positive about my incurable neurological disorder.

Thanks doctor.

Anyway....

So the darkest spot is the front of the right temporal lobe, specifically a spot called the "temporal pole". Also impacted are the amygdala and (to a lesser degree) the hippocampus on the same side. 

According to the epileptologist, the PET scan is not actually showing damage (directly) but sugar uptake(? I don't really understand this part). The way he explains it is that those areas of the brain are simply tired and so they aren't working at the rate they should be. And they are tired because the ongoing seizure activity wears them out. So the PET scan doesn't actually show a lesion or tumour or something (like an MRI would) but it shows that those areas aren't functioning the way they should... in his words, because they're too tired from having seizures all the time (even when I don't necessarily feel any seizure activity). But since the location of the "tired" spots match exactly what we expected based on everything else (symptoms, "inconclusive" tests, etc.), it tells us what we want to know. 

He thinks it's all great news. 

I think it's good news from a diagnostic perspective. It gives us some more proof and guidance. But looking at those images still tore me up. 

Meds

I'm still increasing the new one (Cenobamate), have fully come off of the Brivlera, and have just started decreasing the Clobazam. It will take 8 weeks to get completely off of the Clobazam, so I will see the specialist again in November and see how I'm doing. 

Emotional Support

After my appointment I was so upset that I couldn't even be in public for the walk home without being the crazy crying girl walking down Lonsdale, so I veered off to a little park and found a quiet place to sit and call a friend (thank you Liza). 

While I was sitting there, a heron flew in and was poking around the pond, so here is my emotional support heron:

Annual Self Care Day
As I mentioned, September 23 is the anniversary of my first symptoms, and years ago I turned it into my annual Self Care Day, so this year will be no different. Plans still being determined, but will likely involve a massage, lunch, new book, some shopping... we'll see! 
Until next time...