Epilepsy is a common neurological condition that has the potential to be misdiagnosed due to several factors. We do need to trust our doctors and their judgement however, because there is no one type of seizure, epilepsy can be misdiagnosed.
Why does this happen?
Epilepsy, while affecting millions of people worldwide, is still not as well understood as other neurological disorders. Different academic journals highlight that doctors who see symptoms of epilepsy (such as seizures) will diagnose the patient, even if they are uncertain, as they feel that not assigning the diagnosis would have a higher risk.
A common misdiagnosis of epilepsy is applied to individuals who are experiencing psychogenic non-epileptic seizures (known as PNES). Psychogenic non-epileptic seizures are seizures that occur as a result of stress for an individual. People with epilepsy can also experience seizure activity as a result of stress however, PNES is distinct from epilepsy, as people with epilepsy can experience seizures in any psychological state.
Of course, there are several other misdiagnoses due to the seizure activity, or lack of recognizing seizure activity in some individuals. Doctors have a duty to take an extensive history of their patients and to listen carefully. However, it isn’t uncommon for some doctors to gloss over the “extensive” aspect of a patient’s history, skipping some dirty details to slap a label or diagnosis onto a patient. Furthermore, there are several types of seizures that can be difficult for a patient to describe, as a lack of consciousness occurs during some types of seizure activity. It’s very important for a person who is seeking medical assistance to have notes from people who have seen them during their seizure activity so that reporting to the doctor is more detailed.
To be fair to the docs, epilepsy is also misunderstood to a large extent due to the lack of technological ability that we have created to look at the brain. EEGs and MRIs are great tools that are very helpful for some distinct diagnoses, however the results can be up to interpretation. EEGs often show abnormal activity which may lead to a misdiagnosis and MRI scans are also not difficult to misinterpret when looking at seizure activity.
What can you do to prevent a misdiagnosis?
Track Your Experience
Tracking your experience is very helpful for the doctor. Tracking can be tedious however, it’s completely worth it, as it may influence a decision when the doctor is making a diagnosis. Track any seizure activity that you have (time and date) and then go further. What were you doing? What mood were you in? How much stress is currently present? Offer as much detail as possible so that themes can emerge. This may help your doctor to recognize the difference between epilepsy and PNES, for example.
Advocate for Yourself
We all know that neurologists are busy people. If you can find a neurologist that specializes in epilepsy (known as an epileptologist), amazing. If not, that’s ok! Epileptologists are not so easy to find and rest assured that general neurologists are just as qualified!
Regardless, this doesn’t change the fact that you need to advocate for yourself in the system. If you notice that the neurologist is light on gathering an extensive history, speak up. In any situation that you feel uncertain about, ask questions until you’re blue in the face. Sometimes it’s difficult to address or request your needs as a patient because it’s easy to assume that a doctor knows best but the truth is that they need your collaboration and notes to have as much clarity as possible so don’t be afraid to use your voice.
Bring A “Witness”
What the heck is a witness? Someone who has seen you have several seizures. Witnesses are a key player in helping your neuro gather accurate information about what your seizure activity looks like. Even if you are conscious during seizures, you might miss something that others notice. If you live with someone or you know a specific person has witnessed your seizures in action, please bring them to your appointment.
Do Your Research
If you have the mental and emotional energy, feel free to do your own research about epilepsy. Be warned, it’s not too specific, as we are still learning- unfortunately. I don’t mean go on google and get anxious either. I mean read scientific journals, speak to doctors, speak with other people who have epilepsy to hear about their experiences. Learning is never boring but only research if you have the capacity to do so without panicking.
Identity
Finally, people with epilepsy are not called epileptics. Epilepsy does not define the person; it is just an aspect of them. If you are diagnosed with epilepsy, and you’re not sure that you have it, continue to ask questions and track what’s happening. Do not let it define you. You are so much more than a diagnosis (right or wrong). If you are looking for epilepsy therapist in Vancouver feel free to get in touch by booking a free consultation!