Do I Still Have Epilepsy?

Thought processINTRODUCTION

An important question that we get asked at the Minnesota Epilepsy Group is: “Do I still have epilepsy?” The question is pertinent in several clinical situations. For example, if a child “outgrows” their epilepsy, does that mean that their epilepsy is in remission? What about a 48 year-old man who had two seizures during his teenage years, and no further seizures—does he still have epilepsy? The International League Against Epilepsy (ILAE) has just published a statement addressing this important issue. Per the ILAE report (hot off the presses!):

Epilepsy is considered “resolved” for:

  • People who have a type of epilepsy that the patient is expected to “outgrow”—and the patient is significantly older than the age that further seizures would be expected; or
  • People who have remained seizure-free for the last 10 years, with no seizure medications for the last 5 years.

The term for a person who had epilepsy in the past and is no longer considered to have epilepsy is: “resolved epilepsy”. The ILAE used the word “resolved” rather than “in remission” or “cured” in order to send a clearer meaning. For example, “cured” indicates that the patient has no increased risk for seizures. Although patients who have, for example, gone > 10 years seizure free may have a very low risk for seizure activity, their risk may still be somewhat higher than the general population. It was thought that the word “resolved” conveyed a more precise description.

PATIENT STORY #1

A 22 year-old man has had three seizures in his life- at age 9, 10 and 14 years of age. Seizures consisted of facial twitching just prior to falling asleep. EEG at age 9 years showed spikes in a pattern consistent with Benign Epilepsy with Centrotemporal Spikes (BECTs). BECTs is an epilepsy syndrome that patients are expected to outgrow. At age 16 years he was tapered off his seizures medications. He has had no further seizures.

This patient would be considered to have his epilepsy resolved. This is because he is currently older than the age that seizures would be expected, given his type of epilepsy. He would be considered to have “outgrown” his epilepsy. Or, in the new terminology: his epilepsy is resolved.

PATIENT STORY #2

48 year-old male with the first seizure of his life at age 13 years. The initial seizure was a generalized tonic-clonic seizure. EEG was normal. No history of sleep deprivation or other triggers for seizures. No etiology was identified. He had a second generalized tonic-clonic seizure at age 14 years. He was started on a seizure medication. Because he had no further seizures, the seizure medication was tapered to off at age 17 years. He has had no further seizures.

This 48 year-old is currently a nurse working at a local hospital. He was recently filling out paperwork – he was asked if he had epilepsy. He wanted to be truthful. He decided to ask a Minnesota Epilepsy Group epileptologist if he had epilepsy or not. He really did not think he had epilepsy, since his last seizure was so many decades ago.

Our 48 year-old is exactly correct! His epilepsy is resolved. Based on the criteria above: he has remained seizure-free for the last 10 years, with no seizure medications for much greater than 5 years. As a matter of fact, his epilepsy was resolved a long time ago!

CONCLUSIONS

Patients who have not had seizures for many years may wonder if they still have epilepsy. The ILAE has provided the following criteria for epilepsy being resolved:

  • People who have a type of epilepsy that the patient is expected to “outgrow”—and the patient is significantly older than the age that further seizures would be expected; or
  • People who have remained seizure-free for the last 10 years, with no seizure medications for the last 5 years.

We are learning more and more about the natural history of seizures in people with epilepsy. In the past (before 1990), there was little data on what happens to patients with epilepsy over the course of their lives. The good news is that data in recent years suggests that a sizable percentage of patients will have long periods of seizure freedom off seizure medications. Further research is needed to better understand which individual patients will have their epilepsy resolve. Also, wouldn’t it be great if medications (used for a short time) or other treatments could be developed to substantially increase the percentage of patients with resolved epilepsy?

REFERENCES

Fisher RS. A practical clinical definition of epilepsy. Epilepsia 2014;55:475-482.
Kwan P, Sander JW. The natural history of epilepsy: an epidemiological view. J Neurol Neurosurg Psychiatry 2004;75:1376-1381.

Dr. White has been practicing as a full-time epileptologist since 1999. His practice focuses on optimizing the diagnosis and treatment of patients with seizure disorders. Dr. White’s special interests include patient education, improving the side-effect profile of seizure medications, and epilepsy surgery.

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