How can my daughter manage epilepsy and pregnancy at 25?

Question

Hello doctor,

I desperately need help with my 25 year old daughters seizure management. She has had epilepsy since age 16, but now has catamenial seizures that coincide exactly with her ovulation and menstruation. Seizures are getting more violent and lasting longer, up to 5 minutes now. Current medications (Keppra and Lamictal) do not seem to control hormone-related breakthrough seizures.

She has also developed PCOS symptoms like irregular periods, weight gain, excessive facial hair, and acne. I was wondering if anti-seizure meds are causing hormonal imbalances or if PCOS is triggering more seizures. She had status epilepticus 2 months ago and spent 4 days in the ICU. She is terrified of getting pregnant because of teratogenic risks, but wants children eventually. The neurologist suggested a VNS implant but worried about surgical risks. Please tell me,

What treatments work best for catamenial epilepsy?
Could PCOS be making her seizures worse?
Is VNS surgery worth the risks at her age?
How can she safely plan for pregnancy with epilepsy?
Are there newer anti-seizure drugs that do not affect hormones?

Kindly help.

Thank you.

Answer 1

Hello,

Welcome to icliniq.com.

I understand your concern.

Your daughter’s situation is incredibly complex and understandably distressing. Catamenial epilepsy, where seizures are linked to hormonal fluctuations during the menstrual cycle, can be especially challenging to manage, particularly in the context of coexisting PMOS (polyendocrine metabolic ovarian syndrome), the current name of PCOS, polycystic ovary syndrome.

It is quite plausible that the imbalances in hormones linked with PCOS, especially elevated androgens and erratic ovulation, may be further contributing to the seizures she is having. In the same way, anti-epileptic drugs like valproic acid are known to cause hormonal side effects, but Keppra (Levetiracetam) and Lamictal (Lamotrigine), which have not been known to make PCOS worse.

Catamenial epilepsy can be managed using cyclical hormone therapies, such as the administration of natural progesterone or hormonal birth control. It has even been suggested by some neurologists that a short course of benzodiazepine around the most vulnerable phase of the cycle could help. In some cases, acetazolamide has proven to be effective.

VNS (Vagus Nerve Stimulation) implantation could be considered a good adjuvant therapy in cases of drug-resistant epilepsy and is likely to decrease the number of seizures in the future. Though any surgical procedure involves some risk factors, this type of procedure is quite safe and minimally invasive, especially when done by experienced staff. Quite a lot of young women use it as their last resort, yet one should consider the improvement of quality of life and individual risks.

It is vital that pregnant patients have close cooperation with both neurologist and obstetrician. Women with plans on conceiving would prefer to take Lamictal as it is considered relatively safe. Preconception counseling, intake of high doses of folic acid (4-5 mg/day) and good control of seizures for at least 6-12 months prior to conception are necessary.

Some of the new drugs which can control seizures without any hormone imbalances are Brivaracetam or Lacosamide, but it should be prescribed according to the type of seizure experienced by your daughter.

Your daughter’s case highlights the need for a collaborative, multidisciplinary approach involving neurology, endocrinology, and gynecology. With the right adjustments, her seizures can become more manageable, and her fertility goals remain possible.

I hope this information helps you.

Feel free to ask further queries.