Proposed terms for medications used in the treatment of epilepsy

The ILAE Nomenclature Task Force prepared a paper about terms to describe epilepsy medications and treatments. The paper seeks to standardize the terms we use to identify the different types and goals of epilepsy treatments. These terms will become the League’s standards following comments from the public and final approval of the edited manuscript.

Draft: Which terms should be used to describe medications used in the treatment of epilepsy? An ILAE position paper

The paper is open for public comments through 29 October 2022.

 


Comments

20 September 2022

Antiseizure medication is a better term as it avoids the social stigma associated with the word epilepsy. This is particularly true in Neonatology where parents are worried regarding the nature of seizures in their babies. They frequently ask their physicians whether the baby with seizures is having an epilepsy or not, as the word epilepsy has a different meaning and connotation in their minds. Fortunately, in newborn babies, we use ASM briefly for a few days/weeks only.

Antiepileptics, on the other hand, imply long term therapy, which is generally not required in newborns.

Ashok Kumar


19 September 2022

The Dravet Syndrome Foundation supports the position to standardize the use of 'ASM' when describing therapeutics that treat seizures.

Veronica Hood


18 September 2022

'Antiseizure' is in fact the most accurate term to use, given the symptomatic focus of the medications used in treatment of epilepsy patients.

Lara Morrow


15 September 2022

I am supportive of using the term ASMs.

I think a separate position should be reached regarding the meaning of the term ‘seizure’ when used without qualification. In this area I think if we mean ‘epileptic seizure’ then that is what we should say. I think if the term seizure is used without qualification then we shouldn’t will it to mean more than that. The term ‘seizure’ where there is continuing uncertainty as to its basis, or in other usages like reflex aystolic seizure, febrile seizure, non-epileptic seizure etc., require it to not implicitly mean more than it should. It is easier for us to control our own use of language and use epileptic seizure where possible rather than will everyone using the term seizure to imply something more specific. This is particularly important as we step into digital capture of this type of term.

Colin Dunkley


15 September 2022

I agree with the position paper, as well. It is written clearly on the topic by using 'transparent language; words that mean what they say'.

Reza Shervin Badv


15 September 2022

I agree with opinions of authors that the term 'anti-seizure Medication' is more appropriate than previously used term anti-epileptic drugs.

Dr Sandeep Patil


15 September 2022

SYMPTOMATIC CARE

Elisa Osanni


11 September 2022

I agree with the proposal to call antiseizures drugs instead of antiepileptic drugs, due to the reasons well explained in the paper (I've been using the term for the last almost two years).

Instead of 'drugs' (even if I'm comfortable with the word), I will propose 'pills'. However, I see no need to change the name because we, as clinicians and scientists, should not be worried with what 'people' may think about the words we use and because 'pill' will not be appreciated by most of our colleagues.

It is difficult to foresee a positive action of an anti-seizure, but certainly reduction of seizures aspects in each particular case. Hence, for a while, I see no advantage to start calling a particular name for a particular oral (drugs, pills?). When, and if, other non-oral medications appear with the capacity to change the course and comorbilities of the disease, then we will think about getting a new or different name. In what other, different of oral medications (cetogenic diet, neuromodulation, etc) are of concern, I suggest using 'oral merdication' and 'non-oral medication' and, in this case, to mention the specific treatment.

José Pimentel


11 September 2022

Thank you for this excellent, necessary, and very objective article updating the terminology in epilepsy. I fully agree that the term ASM is much more appropriate, leaving the term drugs for illicit substances. However, I have an observation. No medication is exclusively intended for a single type of seizure. Even ethosuximide can also be effective in myoclonic seizures. So a broader term like antiseizures medication seems to make more sense. On the other hand, I liked it when Dr. Engel called attention to the term antiepileptogenic.

Elza Márcia Yacubian


9 September 2022

Brief & quick comments/suggestions:

  1. Word 'disease' to be avoided completely & replaced with 'disorder' everywhere
  2. Word 'drugs' to be replaced with 'medications' uniformly & therefore the term 'Anti-epileptic medications' (AEMs) is preferred...
    Justification:
    a. Every individual in today's digital world is well educated & has an access to media & hence there is improved awareness to accept the term 'epilepsy' among the majority. The day is not too far when every PWE will accept this term!
    b. The term 'epilepsy' alone can describe all the symptoms of this disorder - motor, sensory, emotional etc. & hence it is appropriate to continue to use the term - 'Anti-epileptic medications' (AEMs).
    c. The term Anti-'seizure' primarily refers to 'motor component', in my opinion.
    d. Also, the terminology for medications used as disease-modifying agents or those used based on patho-physiology are difficult to identify & may not sufficiently reflect on the objectives of the Task Force. In fact they may add to the complexity of too many terms used.
    e. Lastly - medications in general can be classified/sub-classified based on
    • chemical classification
    • mechanism of action
    • site of action
    • clinical classification

Wish to propose & participate to contribute by using such principles relevant to identifying AEMs along with appropriate terminology as we move ahead with improved understanding of Pathophysiology of Epilepsy.

More later. Thank you & sincere regards to Task Force Team,

Dr Chanda Kulkarni


9 September 2022

Agree with ASM. Regarding using the word seizure and not using it for non-epileptic seizures, we may need to reach a consensus on the current term dissociative 'seizure' perhaps 'episode'?

Sarah Kerley


8 September 2022

I greatly appreciate the thought and work that has gone into the draft. Thank you for your work! I will comment on the word 'anti' in conjunction with ASM. 'Anti' reflects that the medicine's purpose is to fully controls seizures. Many people, my daughter in particular, does not have full retraction from seizures while on these medications. They suppress them at best in her case. To label them as 'anti' may give an incomplete description of their capability or mislead the public and medical professionals, though 'anti' is the desired effect, it might not be obtained. The term Seizure Suppressant Medications (SSM), or even Seizure Suppressants (SS) may be a more appropriate term, especially in my daughters case. Thank you for your review and possible consideration of my comments as a non-medical professional.

David Boggs


7 September 2022

I found the clarification of the terms to be helpful to lay people. However, continuing to refer to epilepsy as a disease creates continued stigma for the epilepsy community. To the lay person this implies contagious and will not help the community to prevent discrimination and eradicate fear.

C. Quinn


6 September 2022

Having read the paper, I agree with the proposed use of ASMs, whilst it does not qualify the specifics as discussed and may need some refinement over time, it is a much preferred and patient/clinician identifiable term.

Kathryn Coleman


5 September 2022

ASM

DR.P.A.M.KUNJU


5 September 2022

I would state in the introduction (and perhaps also in the abstract) that the scope of the Task Force was to define terminology for the English language only, otherwise the reader may think 'this does not work in my language'.

Fiorenzo Albani


4 September 2022

The draft is good, but I wonder whether MTOR inhibitors would fall in the category of antiseizure medication, antiepileptic medication, or both.

Pedro André Kowacs


4 September 2022

Epimed... short form of epilepsy medication. Nobody chooses to suffer but everything happens unknowingly. So the terms used should give hope to those affected.

Elizabeth


2 September 2022

I strongly agree with the preferred terminology, and it is what we typically use in our clinic here in Calgary.

Nancy Thornton


2 September 2022

I agree with the statements and the content of the position paper. I also appreciate it was suggested that terminology should be adapted to other languages as best applicable. A similar effort should be done to define at best antiepileptogenesis, antiepileptic and disease-modifying since the difference among these terms is not unequivocally defined.

Annamaria Vezzani


1 September 2022

The position paper is excellent. Entirely agree with the use of the term 'Antiseizure Medication/s.' In fact, the Neuroscience Health Care Professional Group, has been using this term for several years.

Lenor Cabral-Lim


1 September 2022

Anti-Epileptic Medications or 'ASMs' might be better for assessing those, like myself, that have to answer the EMTs or First Responders questioning: 'Are you epileptic? Have you been drinking or using illicit drugs? - standard question we have to ask.' When the EMTs that say out loud that they haven't seen me since the last time I had an epileptic seizure at _____ location to their co-workers. 'Or maybe did you forget to take your epilepsy medication today?' ASMs I'm fine with; its the continuous ignorance that I hate!

Paige


31 August 2022

I wholeheartedly agree with the ASM term, but disagree with parts of the following discussion.

It seems that the panel is proposing the term 'antiepileptic' for medications that prevent the development of epilepsy when the term 'antiepileptogenic' is more accurate.

I don't believe the term 'antiepileptic' should ever be supported. Rather, a general term for medications used to treat epilepsy should be called 'antiepilepsy medications'. I thought this was what had been agreed years ago.

I also question why this paper needs to open the issue of whether the term 'seizure' should always mean 'epileptic seizure'. This is an important issue that needs a different forum. Personally, I would prefer continuing the use of the term 'non-epileptic seizure', but would support the use of the term 'seizure' to mean epileptic seizure when not qualified.

Jerome Engel, Jr.


31 August 2022

I think the drugs for seizures may be divided into prophylactic and abortive. The prophylactic ones may be Phenytoin, Levetiracetam, etc. that aim to prevent seizures. While the abortive treatment includes midazolam, propofol, etc.

Thus a uniform term like antiseizure medications may not be correct in its entirety. We should make two terms - prophylactic seizure drugs and abortive seizure drugs.

Jitin Bajaj


30 August 2022

Dear colleagues,

I believe that it is necessary to reach clear definitions on the treatment of epilepsies. I believe that the work carried out by this group is considerable and requires the recognition and courage to investigate a field that not only involves medicine, but also linguistics. I believe that one of the weak points of the proposal is that it is not clear to which public the motivation to clarify the definitions is directed, and therefore the concepts that go into each word may have a diferent appraisal. If the target audience is the medical profession, and more specifically neurologists/epileptologists, I would strongly agree with several of the statements made. However, if the audience is broader, including the community at large, then there are aspects that I would not agree with.

Since English is not mynative language, I took the discretion to look up the definitions of "treatment" and "seizure" in 3 English- dictionaries, which I present below:

Cambridge Dictionary:
Treatment: the use of drugs, exercises, etc. to cure a person of an illness or injury
Seizure: 1. the action of taking something by force or with legal authority 2. a very sudden attack of an illness in which someone becomes unconscious or develops violent movements 3. the act of taking hold or possession of something 4. A seizure is also a medical condition that can cause you to lose control of your muscles and, often, cause you to become unconscious

Merriam Webster Dictionary:
Treatment: the action or way of treating a patient or a condition medically or surgically : management and care to prevent, cure, ameliorate, or slow progression of a medical condition
Definition of seizure 1a: the act, action, or process of seizing: the state of being seized, b: the taking possession of person or property by legal process
2a: a sudden attack (as of disease)especially: the physical manifestations (such as convulsions, sensory disturbances, or loss of consciousness) resulting from abnormal electrical discharges in the brain (as in epilepsy) b: an abnormal electrical discharge in the brain

Oxford Learner´s Dictionaries:
Treatment: something that is done to cure an illness or injury, or to make someone look and feel good
Seizure: seizure (of something) the use of legal authority to take something from somebody; an amount of something that is taken in this way seizure of something the act of using force to take control of a country, town, etc. a sudden attack of an illness, especially one that affects the brain

If the article is going to the general public, and non-specialist clinicians such as general practitioners, paediatricians, internists, nurses, or family and community physicians, then they should have been invited to be panelists for the Delphi group. From what I see, all the panelists in the Delphi group work in a center dedicated to neurology/epileptology, with the exception of one person. Can it be said then that there really was a representation of people with epilepsy mentioning that the IBE was there with only one person?

If other people are not included, there is a risk of working and then divulging terms that, although we understand them in the world of epileptology, do not necessarily represent the reality of those other actors. For example, for several years the Pediatric Epilepsy Training – PET strategy has made a semantic and therefore conceptual differentiation between what is 'seizure' versus 'epileptic seizure'. If the public of PET are GPs, paediatricians, nurses, among others, then the assertion of the Delphi group's text is a bit daring: 'The Task Force considered that the term "antiseizure" is sufficiently explanatory in the English language, and that including the term "epileptic" when describing the effect of these medications is redundant'. It is perhaps 'redundant' for epileptologists and some neurologists, but not necessarily for everyone else. Note that in the definition of seizure in the three dictionaries, the medical explanation is the last one, being that of the case of epilepsy even the last one. In the three cases of seizure definition, the legal explanation appears first. From the examples of the PET strategy and the dictionary definitions, the purpose of changing and 'progressivly imposing' a kind of terminology is not so clear to me, as stated that 'The Task Force also determined that in the English language the term "seizure" should preferably be reserved to indicate "epileptic seizures", and preferably avoided when describing non-epileptic events'. This intention may be valid in the area of epiletology/neurology, but it is not necessarily so for other professionals in the health area, and I fear much less so for the general public. 'Seizure' has many other meanings in the general public, and even in other professions, not only in English, but also in other languages, that are not restricted to 'clinical manifestations due to hypersynchronic neuronal discharges'. In texts and presentations addressed to a specialized audience or with a particular interest in epilepsy, I would agree with the term ASM. In an open and wide public, the clarification of 'epileptic ASM' is not superfluous.

The article starts with the proposal that 'The present position paper from the ILAE Nomenclature Task Force provides recommendations on the terminology to be applied to pharmacological treatments that exert a symptomatic effect against seizures'. Taking this statement into account, I would modify the first Key Point by adding the word pharmacological. The terminology used to describe pharmacological treatments should accurately reflect the nature of their primary action. In the same way that it stated from the idea of providing 'recommendations on the terminology to be applied to pharmacological treatments that exert a symptomatic effect against seizures', then it would not make much sense to direct the discussion into non-pharmacological treatments. The intention of the task force is not clear to me there, because, again, the readership is too broad. Some may consider the term antiseizure surgery instead of epilepsy surgery, antiseizure neurostimulation instead of VNS, or antiseizure dietary treatments appropriate, but for others the term 'antiepileptic' will be more valid. Seriously, are we operating on symptoms or on diseases?

Jaime Carrizosa


30 August 2022

I prefer the term 'antiseizure medications'. However, since there are also non-epileptic seizures for which specific medications may be developed in the future, we propose to add one or more letters to the term 'antiseizure medications', which will mean that these are medications specifically against epileptic seizures, and remove the prefix 'anti-' to remove the stigmatizing connotation (undertones). For example we propose: 'episeizure medications' or 'eseizure medications'.

In my article 'Pathogenesis of epilepsy and mental diseases, the role of the blood-brain barrier in the context of neurochemical theories' (https://www.psychiatryjournal.in/archives/2022/vol4/issue1), I had proposed to name the phenomenon when the prescription of antiepileptic drugs is accompanied by an improvement in the electroencephalographic picture, but with a deterioration in the clinic and an increase in seizures, and a change in drugs leads to the opposite result - an improvement in the clinical picture and a deterioration in the electroencephalographic picture - 'drug clinical-EEG dissociation', in short, 'drug CED''. But cause the term 'drugs', which in the English medical literature can be used interchangeably with 'medicines' or 'medications' - but in community settings (and in its literal translation into other languages) - can be extended to denote compounds associated with non-therapeutic, illegal recreational abuse and dependence, it will be better to name this fenomenon 'medication clinical-EEG dissociation', in short, 'medication CED'.

Alexander Kharibegashvili


30 August 2022

'Epilepsy medication'

Phillip Standing


30 August 2022

I agree with using the term 'antiseizure medications'.

Gogi Kumar


30 August 2022

Very nice paper!

Paragraph 3.4, specifically: 'Therefore, the term "antiseizure" and "antiepileptic" should not be regarded as being mutually exclusive.'

I just wonder if here it means that antiseizure should be a subset of antiepileptic, i.e. that all antiepileptic medications are 'antiseizure' (but not the other way around); meaning that you could call a set of medications antiseizure which contain both antiepileptic and antiseizure medications?

Samuel Håkansson


30 August 2022

I support this name change to 'antiseizure medications.'

Wesley Kerr


30 August 2022

I definitely appreciate the term 'anti-seizure medication' vs. 'anti-convulsant medication'. Not only is 'anti-seizure' logical in describing its use for all types of seizures, but the language is user-friendly to the consumer. I am very practiced at saying anti-convulsant medication and now realize - although sounding knowledgeable, nursing, medically versed - the client often does not know what you mean. Yes, the client sees you as knowledgeable on your topic, but it is demeaning to the client's common usage of language, snobby, and makes the client feel overwhelmed and unqualified to manage their own condition without a professional to guide them. I try very hard to have clients learn about their condition and work to empower the client to be accountable for their own health and wellness. To feel secure in their knowledge of their condition and treatment plan, and advocate for themselves going forward in their epilepsy journey. Using plain descriptive language 'anti-seizure medication' is logical.

Jo-Anne Welton


30 August 2022

Anti-seizure medication - I agree with the limitation given by this term.

Saly Elkholy


29 August 2022

Antiseizure Medication (ASM) and Antiseizure Therapy (AST)

Use of term 'antiseizure medication (ASM)' is appropriate instead of the use of term 'antiepileptic drugs (AED)'.

These agents are also used in many non-epileptic conditions, like trigeminal neuralgia, migraine, painful peripheral neuropathy, and in some psychiatric disorders.

So use of terminology like 'antiepileptic drugs (AED)' may stigmatize the people who are taking these medications.

I am also requesting you to add one more terminology in epileptic treatment. We can consider introducing the term 'antiseizure therapy (AST)' for all the other modes of treatment without drugs for epilepsy, like vagal nerve stimulation, surgery, ketogenic diet and DBS, etc.

Prof. Dr. M .A. Aleem


29 August 2022

If anti-epileptic is stigmatising, why is anti-seizure not considered to be the same? Especially considering people with hard to treat epilepsy may continue to have seizures despite maximal therapies. Use of the term ‘seizure inhibitors’ (SIs) or ‘seizure inhibiting medications’ (SIMs) eliminates the ‘anti’ in anything, so these might be a better fit. You could then divide the treatments up into classes e.g. Class 1- channel modifier, etc., as well.

Rebecca Paff


29 August 2022

I agree with the position paper. It is well-written and clearly thought out.

Sam Berkovic


29 August 2022

I agree with the positions expressed the draft. I suggest that mention be made of the Institute of Medicine report, Epilepsy Across the Spectrum, which was instrumental in moving our terminology away from 'antiepileptic drug'. 'Throughout the report the committee suggests using more precise—and less negative terms—such as “seizure medications” (to replace “anti-epileptic drugs”), epilepsy seizures (to replace “epileptic seizures”), and “seizure-like events with a psychological basis” (rather than psychogenic, non-epileptic seizures)' (chapter 1, page 62 of the pdf version).

Thomas Bleck


29 August 2022

While the term ASM is technically correct, changing from AED will cause confusion. Search terms will not be adjusted to convert to ASM, leading to faulty results. Over time, AED will be forgotten and not recognized. Much of what I see reported in journals relates to earlier work. In the future, these links will be lost. Is there a way to combine/connect the terms to aid future researchers?

Joyce Cramer


29 August 2022

'Seizure' should be used instead of 'epileptic seizure' - more refined. 'Epileptic' automatically implies convulsions, loss of consciousness, contagious (?).

'Medication' should be used instead of 'medicine' or 'drug'. 'Medicine' implies temporary and/or given to a child from a doctor's office. 'Drug' implies stronger than ordinary treatment with beyond normal side effects.

Paul Delaup


29 August 2022

ASM seems to be the most inclusive and accurate term. Everyone that treats epilepsy or has an epilepsy diagnosis deals with seizures, but the inverse is not always true.

Chris Rush


29 August 2022

As we have seen recently, no one on the author list represents the surgeons viewpoint on this topic, and thus, the paper is written one-sided. It would also be appropriate to have the editors of Epilepsia on the author list and discussion panel.

Gary Mathern


29 August 2022

What happens when we offer anti-seizure medications for non-epileptic conditions, for example 'valproic acid in bipolar disorders'? Should we maintain the term 'anti-seizure medication'?

Mijail Rivas


29 August 2022

I think the paper if excellent and agree with the rationale for clarity around terminology.

Sandra Dewar PhD, RN, FAES, FAAN


29 August 2022

ASMs will be a great match as most medications are aimed at reducing seizures, and we see that clients who stop treatment with hopes that they are healed always return with relapses, meaning the underlying cause of epilepsy wasn't treated. Also, it will help to reduce stigma associated with epilepsy. However a clear caution should be put in place because not all seizures are epileptic, so the term ASMs may be - to a small extent - misleading, which may cause irrational medicine use while dealing with non-epileptic seizures.

Bwete Damyano Z


29 August 2022

I agree with the draft position for the nomenclature clarification.

Paul C. Van Ness, MD


29 August 2022

Antiseizure - best terminology

Mary Vasseghi


29 August 2022

I agree we should choose antiseizure medications rather than AEDs.

Omar A Danoun


29 August 2022

I agree totally. However, the peculiar decision of the German Chapter to translate this is almost a semantic suicide. But this is beyond the scope of this international proposal....

Bernhard Prof. Dr. Steinhoff


29 August 2022

Very nice and reasonable paper, I have no comments to add.

Holger Lerche