Now that you know the basic anatomy, function, and components of the brain, let’s talk about electricity. The brain is a complex network that communicates by sending electrical impulses. Sometimes these electrical impulses get blocked or stuck in a loop. Regardless of what you’re doing, your brain is always on and sending and receiving these electrical signals.
What is super cool, is you can actually see, record, measure, and interpret these electrical impulses. To do this you will need an electroencephalogram (EEG) which consists of a ton of electrodes and wires attached to specific parts of the head/scalp. These electrodes and wires are connected to a box which transduces the electrical impulses into squiggly lines. These squiggly lines are then interpreted by a neurological physician who is sub specialized in epilepsy (seizures) – they are epileptologists. These squiggly lines or waveforms may not look like much but can give doctors a lot of information.
Waveforms have specific characteristics that can help identify different activities going on and their location in the brain by looking at the frequency of the waveform. Waveforms will vary throughout a recording but follow a predictable pattern. Meaning the normal expected waveform has specific characteristic when the brain is in different states awareness: deep sleep sleep, light sleep, drowsy, and awake.
Seizures can be detected by seeing changes in the expected waveform. Sometimes these changes are super obvious, sometimes they are very subtle and easy to miss. These waveforms also have specific characteristics for different types of seizures. It’s so incredibly complex and nuanced. So you can see why it’s important to have a specialist, an epileptologist, who lives and breathes these waveforms to interpret them and take appropriate action.
When Dustin arrived to the Neuro ICU they quickly hooked him up to a 24 hr continuous video EEG monitor to monitor for seizures. It can be difficult to capture a seizure on an EEG, so the more information you can collect the more you can understand that person’s baseline and perhaps catch a seizure. The video part is an added bonus because they are monitored by techs who can keep a close eye on the patient for visible seizures and mark them on the EEG.
At first glance, Dustin’s EEG looked normal for the first few hours so we thought we had good control of his seizures. But as more data was collected, the epileptologist started to see that his waveforms were not quite right and had subtle changes that indicated seizure activity. These seizures were so subtle that they did not produce any visible Since we were maxed out on Keppra, an anticonvulsant, they added a second anticonvulsant called lacosamide.
Interestingly, the medication was added and there was no communication of why it was added. When I noticed the addition of the new medication, looked it up. It would be a day or two before I met the person behind this change. Providers can be sneaky and come to a room to assess their patient unnoticed. She must have come in when I had stepped out to grab food or take a bathroom break.
After a night or maybe two, Dustin had been moved from the neuro ICU down to the neurology floor since he was stable. The video EEG monitor moved with him to his new room. At this point, I knew we were planning on doing the surgery later that week and they were scheduling a bunch of imaging and testing that needed to be done prior to surgery.
The first time I met Zoey, the epileptologist, was after Dustin had been moved to the regular neurology ward and Dustin was off the ward doing some testing. Zoey came in with the fellow and resident and introduced themselves. I told them Dustin was off the floor for pre-op testing. I remember clearly knowing this was my chance. Usually providers leave pretty quickly if the patient isn’t there. If I wanted to understand, I needed to ask them now because it’s unclear when or if I’d see them again.
I didn’t identify that I was a nurse practitioner right out of the gate. I just said I was his wife and asked if I could ask some questions. My questions were specific enough that I remember her asking me if I worked in healthcare. A common question that helps the provider know how to reply – can they use medical jargon or do they need to be very basic. I said I was a nurse practitioner.
I think was was interesting about this interaction is that it immediately became friendly and collegial. She asked me where I worked, what specialty, and seemed instantly relieved. She could talk to me a little more efficiently since I’m not a total layperson. This is when I learned that Dustin was indeed having more seizure activity, quite a lot really, but it was “sub clinical” meaning he didn’t manifest the seizure physically. They were small, but very frequent focal seizures. Prior to adding the lacosamide, he was having 10-12 seizures an hour. The medication she added was one that generally works well for focal seizures, is generally well tolerated, and doesn’t usually interact with a lot of other medications. She noted that the medication had slightly decreased the seizures to about 6-8 an hour. However, she increased the dose to see if we could bring it down even lower.
The goal would be to have no seizures prior to surgery. Zoey explained that once seizure activity starts, it’s a lot harder to get under control which is why she was being aggressive with the medications. But the best seizure control would be to remove as much tumor as possible. The tumor is causing the seizures, get rid of the tumor and the seizures will likely stop. He will have to stay on the medications for a while after surgery, possibly forever. She also said that she would be in the OR with Dustin to monitor for seizures during the operation.
But then it clicked. “So is Dustin really, really tired and really, really forgetful and really, really repetitive because of the seizures or because of the titration of the medication?” Turns out, probably both. These medications tend to make people drowsy at first until you get used to. But based on where his tumor is, where his seizure activity is – it’s likely the seizures are impacting his alertness and cognition.
Then I asked, “will he be followed by you once he is discharged? and will there be a plan for breakthrough seizures once we are home?” She said, “yes I can absolutely be the one who follows him and he will have a plan for break through seizures.” I explained to her that was one of my biggest frustrations during the last hospitalization. There was no plan upon discharge and no one I could ask questions if they came up. She acknowledged and validated that wasn’t okay and she’d make sure Dustin had the resources he needed. I asked for her contact information so I could get in touch with her if needed. She gave it without hesitation.
Zoey the Epileptologist was fucking awesome and I liked her a lot. She didn’t treat me like a stupid little wife with my stupid little questions. She treated me like a colleague and a wife which turned out to be one of the biggest gifts I could receive from any of the providers who would be following Dustin long term. I wasn’t boxed into just being his wife. I could be an integral part of his healthcare team. I didn’t know at the time, but being part of Dustin’s healthcare team was very important to my coping and ability to advocate for him. She recognized my need before I did. She recognized the importance of the role that I could play. It wasn’t ever forced, it was natural acceptance. Her ability to see and value the whole picture was incredibly powerful. Not all providers can do that, but she was a rockstar at it.
Zoey was probably one of the first providers that embraced me as a colleague, friend, and wife. I will never forget her, she’s a fucking bad ass. We’d get to know her very well over the next few years and my opinion of her hasn’t changed. I have a deep and profound respect and love for her because she made our journey with her so much easier.
Beside you in time 