Why Everyone Should Understand the Correlation Between Hormones and Seizures

Epilepsy by nature is unpredictable. Add in fluctuating hormones and the unpredictability increases. Many female epilepsy patients, myself included, find their seizure activity increasing at certain times throughout their menstrual cycle. I understand this may seem like it’s a woman only topic, but every parent with a daughter, husband with a wife, child with a mom or person with a relationship with a female with epilepsy should understand the correlation between hormones and seizure activity. There may be an increase in seizure activity at the time of ovulation and/or just before or during her period. This defines hormones as being a “seizure trigger.” However, if a woman only has seizures at these times during their cycle, then it’s called “catamenial epilepsy.” This epilepsy subset requires special treatment at these times during the cycle.

Other relevant stories:
• Can Epilepsy Come Back After Years
• Does Epilepsy Go Away
• What Are the 12 Types of Seizures 

An increase in seizure activity is especially noticeable during what is known as “perimenopause.” What is perimenopause? Most people have heard of menopause but not perimenopause. Perimenopause is the wonderful 5-15 years prior to menopause. It can start as early as in a woman’s 30s, but most often starts in the 40s, with an average age for full menopause reached by 51. Hormones are fluctuating wildly and without any sort of rhythm. During child-bearing years most women’s menstrual cycles are fairly normal. They may have periods every 25-31 days.

Here’s my experience: a period every two weeks, then no period for two months, then a period that lasts for two months, then a period that lasts for two days. Flows so light I wonder if it’s really a period and so heavy that I’m convinced I’m in immediate need of a blood transfusion. I also have a host of the other symptoms such as bouts of insomnia, heart palpitations, hot flashes, night sweats — the list goes on. According to my doctor, these symptoms are caused by an overabundance of estrogen and low progesterone. If you haven’t figured it out by now I’m in perimenopause.

But with one major complication. I’m an epileptic in perimenopause.

While the symptoms of the raging hormones during perimenopause are uncomfortable, they’re harmless. However, the implications of being epileptic during this time are more complicated and dangerous. Because I fall into the group where hormones can trigger seizures. My primary seizure types are absence (blank staring), myoclonic (involuntary jerks), atonic (drop attacks), simple partials (sensory perception disruptions) and complex partials (autonomic disruptions). I have secondarily generalized tonic-clonic seizures, meaning they only spread to both sides of the brain after a partial seizure has started. As I get further into perimenopause and closer to menopause, my menstrual cycles become more erratic and I see a definitive increase in seizure activity.

The scariest part of this is that many of the perimenopause symptoms overlap with my seizure manifestations. For example, anxiety and panic are symptoms of perimenopause. I have “adrenaline rushes” that we thought were anxiety and panic attacks but are seizures. Mood swings and irritability occur, too. Headaches, electric shock, memory issues, fogginess, tinnitus (ringing in the ears) and other symptoms can all either be a result of raging hormones, seizures or both. I use two apps on my iPhone to track both seizure activity and menstrual cycles. I’ve found My Seizure Diary and Period Tracker to be beneficial in helping me, my epileptologist and gynecologist stay on top of this as best we can.

Doctors have tried to test my hormones, but my results came back within normal range. My gynecologist has no doubt I’m in perimenopause. I’m 44, so the age is right. The symptoms are there. And all the women on my mom’s side of the family went through it at my age and were done by age 46. While this isn’t definitive, my gynecologist says hormones fluctuate so much during perimenopause that it’s nearly impossible to get an abnormal reading. I asked her when we would and she said, “When you’ve entered menopause.” As frustrating as it is, she’s correct. Hormones can fluctuate minute by minute. So they can be off when they insert the needle and by the time they draw the blood, they’re back to normal.

I made the decision to not take any type of hormone replacement therapy based on my lifestyle and only after discussing it with my epileptologist. Please talk to all of your doctors before making a decision either way. If you’re in perimenopause and not epileptic, hang on tight; it’s going to be a wild ride. If you’re epileptic, just hold on a little tighter. It’s my understanding that once we’re out of perimenopause and into menopause, there can be a reduction of seizure activity. Look on the bright side. A decrease in seizure activity and no more periods. That’s what I call a win-win!