Do I have epilepsy?
People with NEAD have often been told before NEAD has been diagnosed that they have epilepsy. It is no surprise that they get confused when another doctor tells them that the diagnosis of epilepsy is likely to have been inaccurate. There are several reasons why people may receive an inaccurate diagnosis when they first develop blackouts.
One in ten healthy people have slight changes in their EEG which can be mistaken as an indication of epilepsy. It is not unusual for someone with NEAD to have these changes, especially if they are taking anti-epileptic drugs. This can lead the doctor to think they have epilepsy, or to be unsure about the cause of your attacks.
Doctors sometimes decide to try an anti-seizure medicine (ASM also called "antiepileptic drug") even when the diagnosis is unclear. This is because some epileptic attacks can be harmful and ASMs can stop these seizures. More tests may be carried out if anti-epileptic drugs fail. These tests can sometimes change the diagnosis.
It can also become clearer over time that attacks are not epileptic because more attacks have been witnessed and described to doctors in detail.
Most people with NEAD do not have epilepsy as well. Only one in twenty people with NEA also have epilepsy. If this applies to you, your doctor will discuss it with you. It will be important for you and others to learn to tell the two types of attack apart so that each can be treated properly.
To add to the confusion, ASMs can sometimes appear to stop NEAs. People often experience attacks when they stop taking their ASMs or miss a tablet. This can result in them believing that ASMs help stop their attacks. However, if you have NEAD, ASMs will not help your attacks. ASMs do, however, have a range of unpleasant side effects.
Please note that stopping anti-seizure medication without support form your neurologist can be dangerous. If your neurologist no longer thinks that your attacks are epilepsy they will help you stop your AEDs safely.