My Specialist Appointments

My first appointment with a neurologist finally arrived in March of this year. After spending almost a year on the waiting list, it felt like a significant step forward. Although I had been told when I was first referred that the appointment was unlikely to provide any answers and was mostly intended to put my parents' and my mind at ease, I was still excited. After months of uncertainty, it felt reassuring to know that something was finally happening.

The appointment itself was relatively straightforward. The neurologists conducted a physical assessment, testing my reflexes, strength, and coordination, while also asking questions about my seizures and symptoms. I relied heavily on my mum throughout the appointment, as communication can be difficult for me, and I often have little recollection of what happens during an episode.

Towards the end of the assessment, the trainee neurologist examined my eyes using a specialized instrument. As he looked, he seemed to become increasingly focused on something he had noticed and eventually asked the supervising neurologist to take a look as well.

At the time, I didn't think much of it. It wasn't until after the appointment that my mum told me she had been holding back tears. Watching the two neurologists quietly examine my eyes had convinced her they had found something seriously wrong.

For those few moments, she believed we were finally about to get an answer.

Thankfully, that wasn't the case. While the examination didn't reveal anything concerning, it was a reminder of just how desperately we had been searching for an explanation. After months of unanswered questions, even the smallest reaction from a medical professional felt significant.

As the appointment came to an end, the neurologists explained that some of my symptoms and test results appeared normal, while others were unusual and raised further questions. Because of these abnormalities, they wanted to perform an EEG.

An electroencephalogram, more commonly known as an EEG, is a test used to measure the electrical activity of the brain. During the procedure, small sensors called electrodes are placed on the scalp to detect and record the brain's electrical signals. The neurologists hoped the test would provide further insight into the episodes I had been experiencing and help rule out other potential causes.

My next appointment was scheduled for May. Along with the appointment details came a list of strict instructions designed to give the test the best chance of capturing useful results. I was told to go to bed two hours later than usual and wake up two hours earlier than normal. In other words, they wanted me to arrive sleep-deprived. I was also instructed to wear loose-fitting clothing to make it easier to attach the electrodes and monitoring equipment.

After waiting so long for answers, I was willing to do whatever was required. If staying up late and running on less sleep could help explain what was happening to me, then it felt like a small price to pay.

An EEG is often used to help doctors investigate symptoms such as seizures, blackouts, episodes of altered awareness, or other neurological concerns. The test itself is painless and non-invasive, meaning no surgery or needles are involved. The electrodes simply record the brain's activity and send the information to a computer for analysis.

For people experiencing seizure-like episodes, an EEG can help specialists determine whether the symptoms are caused by conditions such as epilepsy or whether another condition may be responsible. The results are used alongside a person's medical history, symptoms, and other tests to help guide diagnosis and treatment.

It took around 15 to 20 minutes to attach approximately thirty wires to my head. Surprisingly, I found the process quite relaxing, and it didn't bother me in the slightest.

Once everything was connected, the assessment began. I was seated in a comfortable recliner chair and instructed to remain completely still for the first fifteen minutes while they recorded my brain activity. After that came two additional tests: a breathing exercise and a flashing lights test.

By this point, I could already feel my body beginning to react. My legs were twitching, and I had that familiar sensation of my brain wanting to switch off. Even so, I tried my best to push through. If this test could provide answers, I wanted the neurologists to have the clearest picture possible of what I was experiencing.

The breathing exercise involved taking deep, rapid breaths for two minutes. It left me feeling extremely light-headed, and I was relieved when it finally ended.

Then came the flashing lights test.

To put it simply, my brain hated it.

I was instructed to repeatedly open and close my eyes while a series of flashing lights became progressively brighter and faster. With each change, I could feel myself becoming more overwhelmed. Before long, my brain had reached its limit.

That was the moment I slipped into a seizure.

Now, nobody wants to have a seizure. But if there is ever a "good" time to have one, being connected to a machine that is actively monitoring your brain is probably it.

The technician conducting the EEG reacted immediately. He removed the blanket covering me so the camera recording the assessment could clearly capture what was happening. The seizure itself was relatively short. My body became stiff rather than exhibiting the larger movements that can sometimes occur during my episodes.

Afterwards, I felt dazed and exhausted, but I recovered fairly quickly. Having a seizure was never part of the plan, but if it was going to happen, there was probably no better time. The episode had occurred while I was connected to the EEG machine, meaning the neurologists were able to record both my seizure and my brain activity at the exact same time.

For months, I had been searching for answers about what was happening to me. Now, instead of relying solely on descriptions of my symptoms, the specialists had captured an episode during testing itself. Whether it would provide the answers we were hoping for remained to be seen, but it felt like an important step forward in understanding my condition.

For now, all I can do is wait. Next month, I have another appointment with my neurologist to discuss the findings from the EEG and what they may mean for me moving forward. It will also be an opportunity to discuss possible treatment options and begin developing a plan for managing my condition.

After months of uncertainty, unanswered questions, and countless appointments, I am hopeful that this next step will bring a little more clarity. Whatever the outcome, I feel closer to understanding what is happening and where my journey goes from here.