- Be iNFormed
- Seizures
by Nikolas Mata-Machado, MD, University of Illinois Chicago
Navigating a Neurofibromatosis type 1 diagnosis can bring up many questions, and understanding the risk of seizures is an important part of the journey. Seizures are more common in people with NF1 than in the general population, but with the right information and care, they can often be managed effectively. A recent 20-year study found that 11% of NF1 patients experienced seizures, compared to just 0.4% of the general population.
How to Recognize Seizures
Seizures don’t always look the same. While some are obvious, like what are known as grand mal seizures, many are much more subtle and can be missed. The key to recognizing them is that they tend to be recurring events. Some signs can include:
- Episodes of suddenly stopping, staring, or seeming confused and unresponsive.
- Waking up from sleep confused and not responding normally, similar to night terrors.
- Falling down, shaking, and being unconscious.
Diagnosing and Treating Seizures
The cause of seizures in most people with NF1 is unknown and rarely related to brain tumors. The good news is that for most patients, seizures are relatively easy to control with medication. Many individuals may even be able to stop treatment after a few years under a doctor’s guidance.
To determine if someone is having seizures, the most useful test is a 24-hour video EEG. This test records brain wave activity over a longer period than a standard EEG, making it much more effective at identifying abnormalities that suggest a risk for seizures.
What to Do if You’re Worried
If you think you or your child may be having seizures, it’s important to take action. Here are the recommended steps: