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Information for patients

For Patients

If you or your relatives/friends suffer from epilepsy, here you will find patient specific information about the EPILEPSIAE project.

Frequently asked questions:

Q1: Is it nowadays possible to predict my seizures early in advance?

A: There is progress in this field, but present-day prediction methods are not sufficient for patient use. EPILEPSIAE is a project which attempts to improve the performance of available methods with the aim of preparing real-time applications which could serve as a warning to patients.

Q2: I sometimes feel a general tension before a seizure – couldn´t this be measured and used for prediction?

A: Some patients feel “prodromes” which may occur hours before a seizure. The nature of this phenomenon is, however, so far not well understood and so far cannot be assessed technically. Often the symptoms are too unspecific to be used as a warning.

Q3: I have heard of seizure prediction dogs which can be trained to warn before a seizure. Should I try to get such a dog?

A: Some people believe that dogs may be able to sense changes in the behaviour or smelling of epilepsy patients before a seizure occurs. So far, there is no evidence that dogs do perform better than chance in this job, and reported behaviour of the dogs (e.g. barking or tail shaking?) is probable not specific enough to be useful as a seizure warning. Scientifically, it presently cannot be recommended to pay the high costs of a “prediction training” as long as its use has been demonstrated under strict conditions.

Q4: If I had a first seizure, is there a way to predict if epilepsy is to develop?

A: The prediction of seizure recurrences as such is to be differentiated from the prediction of an exact time window during which a seizure is to be expected. The doctor can make individual conclusions on the risk for seizure recurrence based on the type of epilepsy, the electroencephalogram and imaging findings. You should thus address this question to your neurologist.

Q5: If seizure prediction were possible, would I get rid of taking my antiepileptic medication?

A: Antiepileptic medication serves to decrease the risk for seizures, the frequency and severity of seizures. It is this assumed that most patients would have to stay on some continuous medication. A functioning seizure prediction system would, however, allow to administer drugs targeted in periods during which there is a high risk for seizures to occur. This would not only enable a more effective therapy but could also contribute to reduce the dosage and number of antiepileptic drugs administered on a long-term basis. This may offer the chance to reduce side effects resulting from continuously high drugs levels.

Q6. Could seizure prediction be an option for all patients with epilepsy?

A According to present-day understanding, only patients with focal epilepsy could profit from seizure prediction. In idiopathic generalized epilepsy, seizures appear to occur without any reliable prior chances in EEG dynamics. As most patients with difficult-to-treat epilepsies do suffer from focal epilepsy, the group of patients profiting from a functioning seizure prediction system may be in the range of 20% of all patients with epilepsy.

Q7: Would I have to carry a big device with me which does seizure prediction?

A. The project “EPILEPSIAE” aims at the development of small, easily portable devices which analyse only a subset of EEG and ECG channels for seizure prediction. Such a device can easily be worn, like a large smartphone.

Q8 Can I participate in the EPILEPSIAE project?

A First clinical applications of mobile seizure prediction are planned for the end of 2010. 15 patients from 3 countries (Portugal, France and Germany) will be chosen for a first online attempt of seizure prediction by the EPILEPSIAE project. In order to participate, you may address the clinical progress leaders whose name is given on the website.

Q9 Why does it last so long to implement seizure prediction for patients?

A The task to analyze ongoing EEG activity for seizure prediction is complex. Presently, the best approach to study the dynamics of the brain is not yet known, thus a number of different approaches are being evaluated and compared. This makes it necessary to analyse huge amounts of long-term EEG data from patients who have agreed to allow for a use of their recordings to help improved seizure prediction. Presently, predictions analyses are being computed in large computer networks, and a selection of best EEG features will be a prerequisite for ambulatory applications.

Q10. If I were warned that a seizure is to occur, when would this be? Would I have time to finish potentially dangerous activities or embarrassing situations?

A. Depending of the prediction method, predictions may occur 10 minutes to hours before a seizure. This would leave sufficient time to stop activities like cycling or swimming, and may even leave the option to take a medication which acutely prevents the predicted seizures. Clinical studies will be necessary to evaluate this in detail

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