When I visited a regular family doctor the day after my first seizure, he had recommended that I get a sleep deprived EEG done. I had a second seizure just two days later, and was started on medication. I was also referred to a neurologist, so I expected to get in with a neurologist who would probably order a sleep deprived EEG at his hospital, and then my plan was to cancel the first sleep deprived EEG that I had scheduled.
Well, even though my sleep deprived EEG was scheduled for 3 weeks after my first seizure, I hadn’t yet been able to get ahold of anyone at the neurologists office that I was referred to. The machine would always pick up no matter what time I called, and they’d never call back. So I decided to just keep the original appointment for the sleep deprived EEG.
I arrived at Oaklawn hospital without having had any sleep for something like 26 hours. I’ve pulled all-nighters before without it being too painful, so I was surprised how hard it was to force myself to stay awake. It’s weird how hard it is to stay wake when you have to instead of just when you want to.
I had read that the reason doctors schedule sleep deprived EEGs is becuase sleep deprivation increases the odds that your brain will “misbehave”. EEGs capture your brain activity that occurs during the test, so for seizure activity to show on an EEG you have to have abnormal brain activity during the test. This is why many people with epilepsy will have normal EEG results.
Anyway, I was scared that this would trigger a seizure because I knew the goal was to trigger abnormal activity. I was a bit nervous but not overly-so because Ryan had told me that while in the hospital he was able to stay in the room with me during the EEG (which was a normal one, not a sleep deprived one).
When I got called back, Ryan stood up to come with me and they said there wasn’t enough space in the room for him to stay with me, so he had to stay in the waiting room. My anxiety spiked immediately. She tried reassuring me that it would be OK because I would be watched via video the whole time, but this only make me feel more uncomfortable because I didn’t want to think about anyone staring at me (Even though its via video) while i’m sleeping.
When we got back into the room I got a little irritated because the room was PLENTY big enough for Ryan to have stayed in there. There was even an extra chair designed for someone to wait there in. I am guessing it’s probably just their polciy to only allow a ‘visitor’ if the patient is a child but it annoyed me that she just lied to me instead of telling me the truth.
The bed was a regular hospital bed, and the room was really cold. The mattress was laid completely flat and she had me lay down. She brought in some rolled up towels that she put under my neck – they were super scratchy and dry, and she stacked them up so high that my head couldn’t touch the mattress.
She used a cloth measuring tape to measure my head in several different angles and marked spots with a marker. She put some goo in my hair that had a lot of grit to it – almost like a sugar scrub. Then she attached these wires to the goo spots.
While getting me hooked up she was trying to make small talk – asking me about my age, my seizure, etc. I appreciated that she was trying to be friendly but I had no interest in going over my seizure detail by detail because doing so is stressful and I was already pretty anxious. She told me a story tha tsomeone else had told her, about how she had a seizure and her husband had panic attacks while she was at the hospital. I said something like “Yeah, I think its almost worse for the family members because the person having the seizure is unconscious so you just wake up and everyone else is freaking out. You might have a headache or a cut on your tongue but that’s nothing compared to the panic that anyone who saw it must feel. I feel like it was harder on my boyfriend than it was on me.”
Her response – word for word was “Wow that does sound tough on him. It’s cool that he didn’t leave you.”
I was so dumbfounded that I just paused struggling to come up with anything to say. I felt awkward so I just went with “Yeah. He was great – he rode in the ambulance and stayed with me at the hospital the whole time I was there.” To which she basically repeats herself “Wow that’s really cool that he didn’t leave you. A lot of people can’t handle the stress.”
So here I am, wires stuck to my head, sleep deprived, anxious, frustrated and now i’m being made to think about how some men in my boyfriend’s situation would have left me high and dry. On one hand, this makes me so thankful for how loyal and committed he is to me. It never occurred to me that he would leave – and I know that the reason it didn’t occur to me is because it didn’t even occur to him. On the other hand, this makes me feel like this woman thinks I am enough of a burden that breaking up with me based on this medical situation that I have NO control over would be a reasonable option.
She brought in a scratchy blanket to cover up with, but it was really thin and I was still cold. She had me to a breathing test that I think was 60 seconds long, where I had to continuously puff air out – kind of like a woman does on TV while having birth except instead of it being in “waves” of puffing and waves of deep breathing, its just constant puffing instead. She said the goal is to make you out of breath – it worked well.
She then put this light near my face and she told me itw as going to flash light at a variety of speeds and that she’d tell me to open and close my eyes every few seconds. The test was only a minute or a minute and a half long, and the lights flashed slowly at first and got quicker as time went on.
Once that was over it as time for the main EEG to start. She told me to try to sleep. The room was really cold, I was anxious, depressed, stuck on the thought that my boyfriend could have left me, and after a few minutes my neck started hurting because my head wasn’t supported at all. The towels were forcing my head to dangle just above the mattress which put a lot of stress on my neck.
After about an hour she came in saying the test was finished. I told her that I hadn’t slept and she said based on my brainwaves I had just drifted off slightly for about 30 seconds. She said it’s fairly common for people to not be able to sleep so she’d still send my results to my doctor for analysis anyway.
I knew that I didn’t have a seizure (At least not a grand-mal) during the test so I didn’t epect any results and kind of forgot about it. A couple months later I asked my doctor what the results said and she told me they had never sent them over. So she requested them, a week or so later they finally sent them and the results were ‘normal’.