Epilepsy affects approximately 3.4 million people living in the United States. Though most types of epilepsy can affect anyone regardless of their sex or gender, a subtype called catamenial epilepsy is associated with menstrual cycles and hormone levels in women.

In this article, we will cover the causes and risk factors of catamenial epilepsy and how to best treat and manage your symptoms.

What Is Catamenial Epilepsy?

Catamenial epilepsy — also called menstrual seizures — affects about 42 percent of women with epilepsy, according to UCI Health. That means it affects roughly 300,000 to 500,000 people living in the United States.

Catamenial epilepsy, which can affect different parts of the brain, occurs during the menstrual cycle. The menstrual cycle has several phases, and each cycle can last between 24 and 38 days. People with catamenial epilepsy will have seizures throughout their cycle, and they face the risk of more seizures or higher-intensity ones during different phases — particularly these three:

• During midcycle (between periods), when ovulation occurs – These are known as periovulatory seizures.
• Just before (premenstrual) or during period — These are called perimenstrual seizures.
• During anovulatory cycles, which are times of missed periods

What Causes Catamenial Epilepsy?

Scientists don’t know exactly what causes catamenial epilepsy, but they suspect it’s hormonal changes that occur during the menstrual cycle. Hormones are part of your body’s endocrine system, which uses hormones to control and coordinate different biological functions, such as energy levels and reproduction.

Estrogen and progesterone are hormones that regulate the menstrual cycle, and levels of these hormones may fluctuate up or down at different phases of this cycle. Scientists believe that a person’s seizure thresholds change when they experience a drop in progesterone levels or a rise in estrogen levels — both of which occur naturally as part of the menstrual cycle. Progesterone is known to have anti-seizure effects on the brain, and estrogen is known to have pro-seizure effects.

Studies have found that estrogen can excite neurons in the brain, which can in turn increase a person’s likelihood of having seizures. Progesterone, on the other hand, can inhibit the brain, reducing the likelihood of seizures. In fact, catamenial seizure patterns most commonly occur three days before a person starts their menstrual flow and three days into their period, when progesterone levels are at their lowest. Many neurologists believe this neuronal excitability and inhibition from hormonal changes may be the cause of catamenial epilepsy.

Symptoms of Catamenial Epilepsy

Symptoms of catamenial epilepsy vary from person to person depending on their type of seizure. Individuals with simple partial seizures or auras may experience:

• Unusual smell or taste
• Feelings of déjà vu
• Tingling in arms or legs
• Jerking or twitching
• Difficulty speaking
• Intense feelings of fear or joy

During a simple partial seizure, a person is awake and aware of what’s happening. Simple partial seizures typically occur before complex partial seizures.

People experiencing complex partial seizures may show symptoms such as:

• Making random noises
• Chewing or swallowing
• Moving their heads
• Smacking their lips
• Rubbing their hands
• Twitching their hands

Complex partial seizures are characterized impaired awareness. In other words, the person experiencing the seizure is dazed or in a dreamlike state.

Individuals with generalized tonic-clonic seizures may experience symptoms such as:

• Convulsions
• Loss of bladder or bowel control
• Tongue biting
• Confusion
• Loss of consciousness
• Fatigue

In addition, about 35 percent of pregnant women with catamenial epilepsy experience worsening symptoms during pregnancy, according to UCI Health. About one-third of women with epilepsy also report an increase in seizures at the onset of or during menopause.

Diagnosing Catamenial Epilepsy

Doctors diagnose catamenial epilepsy using similar tools and tests for other types of epilepsy. These diagnostic tools include:

• Seizure history
• Medical history
• Family history
• Electroencephalogram (EEG) — A test that uses electrodes attached to the scalp to measure electrical activity in the brain
• MRI or CT scans

It is important for people who are newly diagnosed with epilepsy to keep track of their epileptic seizure activity and menstrual cycle. This is critical information for your neurologist and gynecologist to determine if you have catamenial epilepsy. Using a handwritten or digital calendar or “seizure diary” is necessary for the management of your epilepsy.

Treatments for Catamenial Epilepsy

If you’ve been diagnosed with catamenial epilepsy, your doctor may recommend one of several treatments. Treatments include different types of antiepileptic drugs (AEDs), hormonal therapy, surgery, lifestyle changes, and others.

Antiepileptic Drugs

Catamenial epilepsy is often medically refractory, which medications don’t often work well, if at all, to get seizures in check. Options include acetazolamide, benzodiazepines, or other AEDs — also called anticonvulsant medications. Your neurologist can potentially adjust the dosage of AEDs just before or during your menstrual cycle when seizures occur at a greater frequency and severity.

Hormonal Therapy

The presence of progesterone in the blood is critical to keeping seizure levels low in people with catamenial epilepsy. A study from International Journal of Women’s Health reported that 72 percent of women had decreased seizures by taking progesterone over a three-month period.

However, hormone medications have many important side effects. Common ones include chest pain, flu-like symptoms, and problems with urination. Less common side effects include discharge from the nipple, lumps in the breast or beneath the arm, redness, and swelling of the breast. Hormonal therapy can also increase your risk for certain cancers. You should speak with your doctor at length about the risks versus the benefits of hormonal therapy.

Drugs that can help lower estrogen or raise progesterone levels in the body include:

• Birth control (e.g., pills, implant, shot, vaginal ring, patch, or intrauterine devices)
• Progesterone therapy
• Clomiphene (Serophene)

Of note, scientists haven’t found that birth control agents reduce seizure frequency, even though they alter levels of estrogen and progesterone hormones.

Lifestyle Changes

In some individuals, certain foods may trigger seizures. It is important to identify your triggers and to make the necessary dietary changes. For example, the ketogenic diet — that is, a low-carb, high-fat diet — has been shown to reduce seizure frequency, especially in children.

In addition, exercising daily, lowering stress levels, and getting enough sleep may reduce your risk of seizures and play a role in the treatment of epilepsy.

Surgery

If an individual has not responded well to any of the treatment options mentioned above, an oophorectomy, or ovary removal surgery, may be an option. However, oophorectomies for catamenial epilepsy are recommended only in very extreme cases, as this surgery causes permanent infertility and lifelong hormonal problems.

Other Therapies

Researchers are investigating neurosteroids — steroid hormones that come from within the nervous system — as a potential treatment for catamenial epilepsy. Ganaxolone and brexanolone (formerly called allopregnanolone) are two neurosteroids under evaluation as possible treatment options.

Talk With Others Who Understand

MyEpilepsyTeam is the social network for people with epilepsy and their loved ones. On MyEpilepsyTeam, more than 110,000 members come together to ask questions, give advice, and share their stories with others who understand life with epilepsy.

Do you have or suspect you have catamenial epilepsy or epilepsy with menstrual cycles? Share your experience in the comments below, or start a conversation by posting on MyEpilepsyTeam.