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PubMed This is a summary of 19 peer-reviewed journal articles Updated
Neurology

Managing Symptoms: Standard Care and Critical Warnings

At a Glance

FAME epilepsy is primarily treated with medications like Perampanel, Levetiracetam, or Clonazepam to reduce tremors and seizures. It is critical to avoid sodium channel blockers like Carbamazepine or Phenytoin, which can severely worsen FAME symptoms and trigger dangerous continuous seizures.

Managing Familial Adult Myoclonic Epilepsy (FAME) focuses on reducing the frequency of seizures and minimizing the impact of the tremors (myoclonus) on your daily life. Because FAME involves a hypersensitive brain cortex, the goal of treatment is to “calm” this activity rather than just stopping electrical storms [1][2].

The Recommended Approach

While there is currently no “cure” that addresses the underlying genetic stutter, several medications are used to manage the symptoms effectively [3][4].

  • Perampanel: Increasingly recognized as a primary option for FAME, even at low doses [5]. It works by blocking specific receptors (AMPA receptors) that contribute to cortical hyperexcitability, often helping to reduce both tremors and seizures [2][6].
  • Levetiracetam: A commonly used anti-seizure medication that is often well-tolerated and effective for the types of jerks and seizures seen in FAME [7]. It is frequently considered a safer alternative to Valproate for women who may become pregnant [8].
  • Clonazepam: A classic, highly effective medication frequently used to manage cortical myoclonus and tremor in FAME [7].
  • Valproate (Sodium Valproate): Historically a standard treatment for myoclonic epilepsies [7]. While highly effective at controlling seizures, it has significant long-term side effects and serious risks that must be carefully managed [9].

CRITICAL: Medications to Avoid

A major pitfall in treating FAME occurs when a doctor who is unfamiliar with the condition treats it like common “focal” epilepsy or Essential Tremor. Certain medications can severely worsen FAME symptoms or even trigger dangerous, continuous seizures (status epilepticus) [10][11].

You should have an open conversation with your doctor about avoiding sodium channel blockers, including:

  • Carbamazepine
  • Oxcarbazepine
  • Phenytoin

These drugs are often the “first choice” for other types of epilepsy, but in FAME, they can interfere with the way the brain handles inhibitory signals, leading to an increase in myoclonic jerks and tremors [10].

Special Considerations for Women

Valproate carries severe risks if taken during pregnancy, including a high chance of physical birth defects and neurodevelopmental issues (like autism or learning delays) in the child [12][13].

If you are a woman of childbearing age:

  • Pregnancy Prevention Programme (PPP): In many countries, you must be enrolled in a formal safety program to receive Valproate [14][15].
  • Effective Contraception: Guidelines mandate the use of highly effective contraception while on this medication [14][16].
  • Alternative Options: Doctors will typically prioritize other medications like Levetiracetam or Clonazepam unless Valproate is the only option that works for you [17][8].

Working with Your Care Team

Finding the right balance of medication often requires patience. Some drugs that work well for seizures might not help the tremor as much, and vice versa.

  • Start Low, Go Slow: Medications like Perampanel are often started at very low doses to minimize side effects like dizziness or irritability [5][18].
  • Monitor Mood: Both Levetiracetam and Perampanel can sometimes cause “behavioral” side effects, such as increased irritability or aggression [18][19]. Inform your care team immediately if you notice changes in your mood.
  • Shared Decision-Making: Your priorities matter. If your primary goal is to be able to write clearly again, your treatment plan might look different than if your goal is solely to prevent a once-a-decade seizure [17]. For more on how to manage day-to-day, see Living with FAME.

Common questions in this guide

What are the best medications for treating FAME?
Commonly recommended medications for FAME include Perampanel, Levetiracetam, Clonazepam, and Valproate. These drugs work by calming the hypersensitive brain cortex to help reduce both myoclonic tremors and seizures.
Which epilepsy medications should I avoid if I have FAME?
Patients with FAME should strictly avoid sodium channel blockers, including Carbamazepine, Oxcarbazepine, and Phenytoin. These common epilepsy drugs can severely worsen FAME symptoms and even trigger dangerous, continuous seizures.
Is Valproate safe to take if I want to get pregnant?
Valproate carries severe risks during pregnancy, including a high chance of physical birth defects and neurodevelopmental issues. Women of childbearing age taking Valproate must use highly effective contraception and are often required to enroll in a formal pregnancy prevention program.
What are the common side effects of FAME medications?
Medications such as Levetiracetam and Perampanel can sometimes cause behavioral side effects, including increased irritability or aggression. You should monitor your mood closely and notify your neurologist immediately if you notice any changes.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.Are you considering medications that target cortical hyperexcitability, such as low-dose Perampanel?
  2. 2.Should we avoid sodium channel blockers like Carbamazepine or Phenytoin, and could they make my myoclonus worse?
  3. 3.If we discuss Valproate, what are the specific safety requirements for the Pregnancy Prevention Programme (PPP)?
  4. 4.How should we monitor for psychiatric side effects like irritability if we use Levetiracetam or Perampanel?
  5. 5.What is our strategy for balancing the treatment of my tremors versus the treatment of my seizures?
  6. 6.Do I need long-read sequencing to confirm my subtype?
  7. 7.How do we safely transition off valproate if I want to get pregnant?

Questions For You

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

References

References (19)
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    Familial adult myoclonus epilepsy: Neurophysiological investigations.

    Dubbioso R, Suppa A, Tijssen MAJ, Ikeda A

    Epilepsia 2023; (64 Suppl 1()):S39-S46 doi:10.1111/epi.17553.

    PMID: 36806000
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    Perampanel as First Adjunctive Treatment in Patients with Focal-Onset Seizures in the FAME Study: Post hoc Analyses of Dose-Related Efficacy, Safety and Clinical Factors Associated with Response.

    Kim DW, Kim JH, Lee SK, et al.

    Journal of epilepsy research 2022; (12(1)):6-12 doi:10.14581/jer.22002.

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    Current treatment options for familial adult myoclonus epilepsy.

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This page provides educational information about FAME epilepsy treatments and medications. Always consult your neurologist or epileptologist before starting, stopping, or changing your anti-seizure medications.

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