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 relationships 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 has seizures at these times during their cycle only, meaning they don’t have seizures at any other time, then it is called Catamenial Epilepsy. This Epilepsy subset requires special treatment at these times during the cycle.
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 years, ranging from 5-15, prior to menopause or the cessation of menstruation and the end of the child bearing years. It can start as early as early as the 30’s but most often starts in the 40’s 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 and it’s considered normal. In perimenopause I am talking about periods every 2 weeks then not having one for 2 months then one that lasts for 2 months and then one that lasts for 2 days. Flows so light I wonder if it’s really a period and so heavy that I’m convinced I am 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 and the list goes on. These symptoms are caused by an over abundance of estrogen (possibly estrogen dominance) and very low progesterone. If you haven’t figured it out by now I am in perimenopause. But with one major complication. I am an Epileptic in perimenopause.
While the symptoms of the raging hormones during perimenopause are uncomfortable, they are virtually harmless. However, the implications of being Epileptic during this time is more complicated and dangerous. As we talked about earlier there is hormones as a trigger and Catamenial epilepsy. I definitely 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 (formerly known as grand mal) which means I have a progression and won’t have a one of these unless my primary types aren’t controlled. As I get further into perimenopause and closer to menopause my 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 is a symptom of perimenopause. I have “adrenaline rushes” that we thought were anxiety and panic attacks but are seizures. Mood swings and irritability is another one. Remember the five broken iPhones? Yep, exactly. Headaches, electric shock, memory issues, fogginess, tinnitus (ringing in the ears) and many others 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 have 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.
They’ve tried to test my hormones but they come back within normal range. My Gynecologist has no doubt I am in perimenopause. I am 44 so the age is right. They symptoms are there. And, all the women on my mom’s side of the family (her, her sister and her sisters daughters) all went through it at my age and were done by the age of 46. While this isn’t definitive the mothers side of the family is a good indicator of when to expect it. My Gynocologist said hormones fluctuate so bad 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 is correct. Hormones can fluctuate minute by minute. So they can literally be off when they insert the needle and by the time they draw the blood they are back to normal.
I’ve talked to my Epileptologist about progesterone cream that my Gynecologist recommended. I told him that I am reluctant because I don’t put anything artificial (except Keppra) into my body. He said they consider estrogen to be seizure inducing and progesterone to be anti-seizure. He said there is a validation study currently taking place. I told him I still didn’t want to take it and wanted to go through perimenopause naturally, if possible. I don’t want to do anything that will be detrimental or cause me to have another tonic-clonic. So I asked him if I had to take it for Epilepsy reasons and he said no. I am still considered seizure free because I haven’t had a tonic-clonic. But, if I start seeing signs that I may be going back into status epilepticus with partials then we may have to consider it.
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 in are in perimenopause and not Epileptic hang on tight it’s going to be a wild ride. If you are Epileptic just hold on a little tighter. It’s my understanding that once we are out of perimenopause and into menopause there can be a reduction of seizure activity because estrogen levels are low and even. Look on the bright side. A decrease in seizure activity and no more periods. That’s what I call a WIN WIN!!!
If you have questions about Epilepsy and perimenopause you can reach out to me via the website or our facebook page My Purple Friends.
For more information on perimenopause and it symptoms visit the following: