Is epilepsy just where you fall on the floor and shake? Epilepsy is a neurological condition that causes recurrent seizures. There are many types of seizures that present themselves in different ways. Most people are familiar with generalized tonic-clonic seizures, where a person loses consciousness and muscles get stiff and rhythmically jerk on both sides of the body. However, there are other types of seizures to be aware of:

• Tonic seizures: muscles in body, arms, or legs become stiff or tense which can cause a fall.
• Clonic seizures: rhythmical jerking movements in the arms or legs.
• Infantile epileptic spasms: the body contracts and extends repeatedly; presenting like a startle reflex; this occurs within the first year of life.
• Atonic seizures: muscles become weak, limp, or numb; these are also known as a “drop seizure”
• Myoclonic seizures: brief muscle twitching occurs while the person remains alert.
• Focal Aware seizures: the person stays alert but experiences involuntary motor moments or sudden changes in emotional state, thinking or cognition, behavioral arrest, and autonomic function
• Focal Impaired Awareness seizures: the person loses awareness, and likely will not remember the event; seizure can present as sudden changes in emotional state, thinking or cognition, behavioral arrest, and autonomic function
• Absence seizures: these present as a blank stare and the person’s eyelids may flutter

I’ve just been diagnosed, where do I find support? Epilepsy Foundation is a United States based organization that has many resources for people and families impacted by epilepsy, in all age groups. You can visit their website to find the right support group for you by clicking here. They even have bereavement support for those who have lost a loved one to SUDEP.

What is SUDEP? Sudden Unexpected Death in Epilepsy. It is more likely to occur in people with poor seizure control and status epilepticus. According to the Epilepsy Foundation, more than 1 out of 1,000 people with epilepsy die each year from SUDEP.

I am on a medication, but its been 3 months and I am still having seizures. What can I do? Talk to your primary care physician or pediatrician, you may need to see an epileptologist (a neurologist who specializes in epilepsy) or neurologist at a level 4 Epilepsy Center.

What is a Level 4 Epilepsy Center? A level 4 epilepsy center is accredited by the National Association of Epilepsy Centers and provides the highest level of care for people living with epilepsy and other seizure disorders. These locations have advanced neurodiagnostic monitoring equipment. If surgery is a treatment option for a person living with epilepsy, it will be preformed there. You can find a Level 4 Epilepsy Center near you by visiting the National Association of Epilepsy Centers’ website.

When would surgery possibly be a treatment option for my epilepsy? That would be a decision between you and you medical provider. However, if you have tried 3 or more medications and they have failed to control your seizures, further evaluation is recommended at a Level 4 Epilepsy Center. This evaluation would likely include, neuropsycholoical assessment, genetic testing, Video EEG, CT, MRI, magnetoencephalography (MEG) and possibly other tests. Depending on your type and location of seizures your epilepsy team will recommend the type of surgery that would be most effective for you.

There is more than one type of surgery for epilepsy treatment? Yes, there are sever surgical options including device implants, laser therapy, disconnection, and resection or removal of the portion of the cause of the seizures. Depending on your testing results you may be a candidate for more than one of these surgeries. To read more about my surgery journey click here.

Is there a cure for epilepsy? No, unfortunately there is no cure for epilepsy. There are some very effective treatments (like those mentioned above) that do reduce seizure frequency and improve quality of life for approximately 60% of patients with epilepsy. It is important to work with a medical team that specializes in epilepsy and any other medical conditions you have to find the best treatment plan for you.

Do you have any questions about epilepsy? Let me know in the comments below, send me a private message via my contact form, send me a DM on Instagram or Twitter.