Hello Purple,
How are you doing today? I wanted to speak to you about the things you did not know about getting diagnosed, I am speaking the uncomfortable tests, what they are, and what you should expect, because I think you should know.
Today, let us talk about one of the first tests you would be undergoing: The Electroencephalogram, simply put, the EEG.
If you have never had one before, the name alone can sound intimidating. So let’s break it down.
An EEG measures the electrical activity of your brain. For someone living with or being tested for epilepsy, this matters because seizures happen when that electrical activity goes haywire. The EEG helps your doctor see patterns that suggest where in the brain that disruption might be coming from.
Here is what actually happens. A technician will attach small electrodes to your scalp using a gentle paste or gel nothing that pierces the skin. You might count up to 20 electrodes, depending on the clinic. They connect to wires that lead to a machine recording your brain’s activity in real time.
You will likely be asked to do a few things during the test: sit still with your eyes closed, breathe rapidly for a short period, or look at a flashing light. These are ways doctors try to “provoke” the kind of brain activity they are looking for, safely, in a controlled setting.
Some EEGs are short, reaching 20 to 40 minutes. Others ask you to stay overnight, or come in sleep-deprived, because some seizure activity only shows up when your brain is tired. If your doctor asks you to stay awake the night before, this is why.
Now, the part nobody tells you: it can feel strange. The gel can feel cold and a little messy. Lying still for that long, especially if you’re anxious, takes real effort. Some people find the flashing lights or the rapid breathing uncomfortable. None of this means something is wrong with you.
You may not get answers immediately. EEGs sometimes come back “normal” even when someone is later confirmed to have epilepsy because the abnormal activity simply did not show up during that specific window of recording.
That does not mean you imagined what you felt. It does not mean the doctors got it wrong. It means this is one piece of a larger picture your medical team is putting together.
Once the test is done, there are a few simple things that help you feel like yourself again.
Wash your hair as soon as you can. The gel does not come out easily with water alone, you may need to shampoo more than once, and that is normal.
Eat something. If you were sleep-deprived or skipped a meal before the test, your body needs the fuel back.
Rest. Even if the test itself only took an hour. Give yourself permission to lie down, nap, or simply do nothing for the rest of the day.
Ask someone to be with you, especially if you were sleep-deprived for the test. You may feel groggy, and it helps to have someone drive you home or just sit with you for a while.
You did something hard today. Take care of yourself the way you would want someone you love to be taken care of after.
With you, every step,
~Beyond Epilepsy