WHAT EVERY WOMAN SHOULD KNOW
EPILEPSY
The Most Important Secrets
You Must Learn
In Order to Live a Happy, Healthy and Productive Life with Epilepsy
What Every Woman Should Know About Menstruation, Ovulation & Epilepsy
“Learn how menstruation and ovulation can affect your epilepsy disorder and find out what you can do about it.”
QUICK TIPS
EPILEPSY, MENSTRUATION, & OVULATION
It all about the attitude: At the age of five, my parents heard a funny noise from the other room, they went to check to make sure everything was all right just as any parent would do and found me in a grand mal seizure. My lips were turning blue, my eyes rolled back and my entire body was shaking. Stunned, full of fright and devastation they rushed to call emergency (911) and had me rushed to the nearest hospital for medical attention. I was diagnosed with (encephalitis) a virus that had traveled to my brain causing me to go into a coma for four days. However, the doctors did not give up hope, but their prognosis was not positive either. They thought that when I did come out of the coma that I was probably going to have some degree of brain damage and there was a very good chance that I was going to be paraplegic.
My parents did not give up. They sat by my bedside with hope in their heart and prayed knowing in their hearts that everything happens for a reason and that there was reason for me being on this earth. On the fourth day, my father was praying by my bedside, as he looked up he was stunned to find my eyes wide open and the first thing out of my mouth was “Can I have McDonalds fries?”
The doctors were flabbergasted. I had no brain damage, I was not paraplegic either, but when the virus (encephalitis) had traveled through my brain, it had caused scar tissue damage, which left me with epilepsy. A disorder, which I live with every day of my life.
My seizures came occasionally as a child until my hormones started to change. At this point, I had walked into a part of my life that I was not ready for emotionally. When the body is making more estrogen than progesterone, it can make the nervous system “excitable.” In other words, you could be at greater risk for seizures. The hormones are not actually causing the seizures, but they can influence when seizures happen.
I began to menstruate at the age of thirteen. My periods were irregular and my seizures were occurring frequently. It was hard to pinpoint when the seizures where going to come because my periods were occurring erratically on a 28-38 days cycle. Even after my cycle became regular I was still having seizures, but now I had an idea when I was most susceptible to having a seizure.
I also had seizures or an increase of seizures during ovulation. I learned from my doctor that the reason for increased seizures around the time of ovulation and premenstrual phase is thought to be primarily an increase in the ratio of estrogen (which causes seizures) to
progesterone (which prevents seizures).
I was determined to improve my condition so I decided from this point on I was going to change my lifestyle and do everything possible to improve my condition. I learned over the years that doctors can help you, but it is really up to the patient. If we do not help ourselves and incorporate the advice/instructions from our doctors than we cannot expect miracles to happen. Our doctors can only do so much, but honestly the ball is in the patients court and what we decide to do in up to us. So be smart.
Below are 10 simple tips that worked well for me over the years.
Keeping a Journal
- Seizure Tracking: Each month I keep track (seizure tracking) of when my seizures occur. This gives me a good idea when the majority of my seizures are occurring. For example, did most of my seizures occur during menstruation? Did they happen around ovulation? To help you with your seizure tracking I would suggest going to epilepsy.com. Epilepsy.com is an excellent web site that provides an outstanding seizure diary program. You can find their seizure diary program at epilepsy.com/seizurediary.
- Time of Seizures: When keeping track of your seizures it is a good idea to write down when your seizures are occurring. Are they occurring morning, noon or night?
- Types of Seizures: When keeping track of your seizures it is a good idea to write down what types of seizures you are having when you experience a seizure. Are your seizures focal, partial, grand-mal etc…? Does your body swing to a certain side? All this things can help give your doctor a better idea where the seizures are coming from.
- Ask Yourself Questions: I would ask myself questions and answers in my journal. When and where are the majority of my seizures occurring and was I doing anything different during those times?
- Wall Calendar: I spend a lot of time by my desk so I hung a wall calendar next to me on the wall. This is where I keep track of my menstruation and ovulation. I menstruate usually around 28 days so I would highlight the 28th day and circle 4 days before and for days after that day. I also would do the same for my ovulation. Two weeks from the first day I menstruated, I would mark on the calendar and circle 4 days before and 4 days after that day. For those two weeks, I was prescribed water pills from my doctor to help reduce the water retention in my body. Remember, during these two weeks you should be careful where you go and what you do because your chances of having a seizure can increase.
- Diet: Diet is an important part of my life. I weigh myself regularly and when I see my weight has gone up 7 or 8 pounds within a few days then I know that I need to make sure I am taking my water pills, increasing my water intake to flush out the toxins in my body and reduce my sodium intake. I am a firm believer in the concept of you are what you eat. For example, I like cream of mushroom soup. One day I was in the mood for the soup, so I made it. Afterwards a couple of hours later I realized that I looked very bloated, so just out of curiosity I look at the back of the can to my amazement the soup had 960mg of sodium. That is a lot of sodium to accumulate especially if you have epilepsy. Since I have been taking better care of myself (watching what I eat, exercising) I have lost weight. My seizures have decreased by 99.9 percent. I say this with tears in my eyes because it was not always like this. Do I still fear that I can have a seizure at anytime? Of course, just because I am not having them does not mean I cannot have them. I know if I do not take my medicine, eat well, get enough of sleep etc… then I am setting myself up to have one. So I make sure I stay within my limitations. Caring for myself is a top priority because if I do not care for myself than I cannot care for my family.
- Do Not Forget to Take Your Medication: Most important do not forget or skip your medications! Taking your medication on time is very important, especially during menstruation and ovulation.
- Stress: Stress can bring on seizures, especially during this time of the month when women tend to be more sensitive and emotional. Therefore, what I do is take it day by day and live each day as if it was my last. For example, if you knew today was your last day would you let many minor things upset you or would you say, “It’s not worth it. Say to yourself, I’m not going to let this upset me.” Focus on now; do not focus on the past because we cannot change the past. Enjoy the moment and focus on the present.
- Take “ME” Time: Take some time to relax – take a bubble bath, mediate or read a book. A little quality time helps you wind down, focus clearly and its helps you mentally and physically and emotionally. You would be surprised how many things can affect epilepsy, so take some time to recharge.
- It Is All In the Attitude: The power of positive thinking goes long way. Look at life from a positive point of view. Negative thinking and pity leads to depression and keeps you stagnant in life. You end hurting herself no one else. Yes, you have epilepsy but how has this disorder changed you for the better. Have you become stronger as a person? Would you be as caring to others with conditions and disabilities? Has it helped you to see the world from a different light? Would you have walked down the same path of life if you did not have epilepsy? Honestly, I think my disorder has made me into a better person because I would not have done many things the way I have and I would not have had the same views on life as I do now.
I may not be able to become a Navy Seal and jump out of an airplane, but epilepsy is not going to stop me from reaching for the stars. As long as I am living I am going to do everything I can to accomplish my goals in life and turn my hopes and dreams into a reality. The past 20 years I have learned to help myself and as an advocate, I will do everything I can to help others who suffer from epilepsy.
Byline by Dr. Orrin Devinsky, M.D.: When seizures occur exclusively or predominantly around the time of menses or ovulation, which they do for many women, several therapeutic opportunities arise. It is especially important to maintain good sleep and avoid alcohol (certainly less than two beverages per day) during those times. For some women, a temporary increase in medication can be helpful if then menstrual cycle is regular. The use of hormonal agents remains challenging, and no strategy has been shown to be clearly effective and safe. For women with catamenial epilepsy (that is, around the time of menses or ovulation), even removal of the ovaries and womb does not stop seizures. So effective antiepileptic drugs and a healthy lifestyle remain our best approach to help control seizures. – Dr. Orrin Devinsky, M.D.
