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Healthy Aging

Epilepsy and Your Hormones

By Sheryl Kraft

Created: 10/14/2010
Last Updated: 12/28/2010

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Epilepsy had always been a topic that was very foreign to me—until it hit a bit close to home.

About five years ago, when she was 52, my sister found out she had epilepsy. She was at work and had just hung up the phone with me after a brief conversation. She remembers feeling a bit "funny"—and the next thing she knew, she woke up in an ambulance, confused and frightened. Lynne had suffered a "grand mal" seizure, the most common type, falling from her chair to the floor, her limbs at first stiffening, then jerking wildly.

Her doctors were not able to pinpoint the exact cause of her condition and I'm happy to report that since the initial episode, my sister has been seizure-free with the help of the two antiseizure drugs she takes each day.

Could it have been set off by stress? Perhaps. But we all have stress in our lives—yet we all don't have epilepsy. Could it have been the change of hormone levels that occur around this time? Perhaps.

One thing that is known for sure is that epilepsy affects—and is affected by—hormones. Estrogen and progesterone, with all their fluctuations, can have a profound effect on seizures, either increasing their frequency and/or changing their patterns.

And around midlife, hormones are changing at lightning speed. That's why it's so important for women with epilepsy to be aware of these important facts and keep an open dialogue with their health care team even before menopause hits. Here's what you need to know, from birth control through to menopause and beyond:

  • Birth control: If you use it, be aware that some antiepileptic drugs (or AEDs) can make your birth control less effective. Uh-oh … unintended pregnancy. Conversely, some birth control pills can mess with your AED levels. Uh-oh … uncontrolled seizures.
  • Pregnancy: If you have epilepsy and want children, you can have them. But it's important to let your health providers know in advance. Your epilepsy meds may need to be adjusted to make sure you are getting consistent levels.
  • Menopause: It may come three to five years earlier for women who experience frequent seizures. Menopause may also change the frequency of your seizures; about 40 percent of women experience their seizures worsening. 
  • Hormone replacement therapy (HRT): HRT can also increase seizure frequency. Is it worth it? Discuss your options with your health care provider.
  • Bone density: Your bone density can be negatively affected by long-term use of some AEDs, potentially increasing your risk of fractures, osteoporosis and osteomalacia (a softening of the bones due to a lack of Vitamin D). It's important for all women to have bone density monitored regularly and practice other bone-strengthening measures, like weight-bearing exercises and intake of calcium and Vitamin D—and it's even more important for you.
  • Sleep and stress: Too little sleep and too much stress can trigger a seizure. Make sure you get enough—and not too much—of each.
  • Alcohol: Drinking alcohol may worsen seizures.
  • Other medications: Taking other meds (as in the case of birth control, mentioned above) can interfere with the levels of AEDs in your body. The same goes for taking AEDs: They can alter the levels of other medications you take for other conditions.
  • Exercise: Use it! It can help counteract the bone loss that may come with medication. It can also help reduce stress, keep your weight balanced and keep your energy levels at their peak.

Comments

Wow. I didn't any of this. I had no idea of the interplay between hormones and epilepsy. One more thing to worry about during midlife I guess.

So many things are connected in such complex ways I didn't know this, thanks for bringing it to our attention.

This hormone connection is fascinating and also seems to explain more and more about many conditions women face. I look forward to reading more about this. Very interesting subject and your list is a good one, too.

I guess I didn't realize there could a late onset. Some people have service dogs who alert them to a looming seizure so that they can take meds or be in a safe spot, which cuts way down on those scary (and expensive) hospital trips.

Ah, yes, I've read about, and have seen shows about, the service dogs that are able to sense an approaching problem. They are truly amazing creatures.

What about petite mal seizures (I think that's the right term). I'm aware that there are those who have minor seizures and never really know about it unless they have a very astute doctor diagnosing them. Do women have a greater likelihood of experiencing those as they age?

Not sure about your question, Kristen, but I do know that for years my sister was experiencing small seizures which had gone misdiagnosed. So, I guess the answer might be yes.

I feel very uninformed about this topic. I had no idea that you can develop epilepsy at age 52, like your sister did. Thanks for sharing this information.

I read this with interest. I know so little about epilepsy and it turns out my daughter has a rare, rare kind that does not produce seizures. Still, I will alert her to this post. Thanks for writing it.

I had no idea you could be diagnosed with this so late in life.

I have a few relatives with epilepsy, and I know of them developed it after giving birth to her first child, so I'm not surprised to hear about the connection between epilepsy and hormones.

That's interesting, Susan, that it was tied in to the birth of her first child. Was she advised not to have any more children?

This is really interesting information. I think we often don't take seriously how much lack of sleep and stress can trigger the onset of chronic health conditions. My daughter stutters, and if she gets too little sleep, gets stressed, or even has a bad month with PMS, she seems to struggle more with her stutter.

I find it interesting that stuttering can be also related to hormones and lack of sleep. I wonder if this means that your daughter can/will outgrow it?

I had no idea that hormones played such a big part in epilepsy. Thanks for the info!

Funny how it's easy to ignore -- or wish away -- an ailment or disease till it hits close to us and we're forced to think about it. A good friend of mine has seizures and I'm all too aware of how debilitating and frightening they are. Thanks for addressing this, Sheryl.

I had no idea hormones and epilepsy were linked! It makes sense, though. How scary for your sister to experience this. I'm so glad she's ok.

I had extreme migrains for 3 years (6th-9th grade), then absolutaly nothing after I got my period. Around 16 I started waking up with a funny feeling(not knowing my name, address, day of week)only from occasional afternoon naps. I tried my best not to fall asleep in the afternoon. At 19 I was caught at night making loud noises and shaking in my sleep and brought to the hospital being diagnosed with nocturnal epilepsy. All I needed was 1 med for 15 years. Then, 1 year after having my 2nd son, not 1 med yet has been found to control these seizures. I've even tried surgery for scare tissue that was seen in my tempral lobe. Nothing yet is working. I'm going on 9 years, in my 40's, and probably menopause. I am at least hoping my brain trades the seizures for the migrains again if anything. NOT for my seizures to get worse after menopause.

Cindy, Thanks for writing. I'm truly sorry you are experiencing such problems and hope you can find a way to get relief. Best of luck to you.

Hi Cindy, My daughter, now 16 has been experiencing nocturnal seizures for years. Same as you, she makes a noise and goes into a seizure, described by doctors as "focal seizures evolving to bilateral convulsive seizure". After her first brain surgery to remove a tuber (she has tuberous sclerosis) she was seizure free for 2 years prior to starting her period, then they were the worse ever. Even a 2nd brain surgery, corpus callosotomy did not help. She is currently in a clinical trial for cannabis oil and that has helped, but also the addition of Vimpat. She would go without a period for 100 days or so and would have more seizures during the full moon, but once she started CBD (cannabis oil), she no longer had the full moon seizures, or menstrual seizures, BUT she was still not getting her period regulary. Once we introduced Vimpat, she started her period AND it decreased her seizures. She just went 6 weeks seizure without a seizure and if she does have one, she bounces back very quickly in terms of post ictal confusion.

I had my first seizure at 40 immediately after I had stopped breast feeding my first child. All those sleepless nights while the baby was young had no effect on me, but once the breast feeding stopped, then my life changed!

I am most prone to seizures if I don't get enough sleep. After 2 years I am still trying to find a drug that works without too many side effects.

Hi Helen - Sorry to hear about the way your life has changed...I'm truly hoping you're able to find something with a minimum of side effects, to help you. And hopefully you'll be able to stay well-rested in the meantime.

Today, 2.3 Million Americans live with epilepsy with more than 1 million of them experiencing uncontrolled seizures. CBDs (Cannabidiol) which are non-psychoactive have been proven to help reduce the frequency of these seizures.

Gevitta is working hard creating a legal CBD spray that is derived from HEMP. We are starting with a crowdfunding campaign set to launch shortly in order to raise the money needed for production as well as further studies on the effectiveness of CBDs on other diseases.

If you are interested in learning more about this amazing new product visit our site at

yes it is time for the doctors to pay attention to the effect of hormones and epilepsy. My doctors didn't believe me and I was a respiratory therapist. It was rude how I was dismissed. I have had seizures every 3 months for 34 years. Tegretol controls the grand mals yes sleep stress and diet play a large part in life. good luck to your sister.

Ok i too had thought about hormones being related with epilepsy. my son actually brought this to my attention, he noticed a pattern, dates approximately the same each month with my petite mal epilepsy. i have what i call petite, i go into a euphoria state, just head feels full heavy, lost feeling, last a few minutes then tired. last night the 5th of a month, had two then i took my 200 mg of vimpat. went to bed, today the 6th at work, had another one, lasted again a few minutes, now still at work, feel heavy headed, but working. just slow. i took, my 200 mg, 9 a.m and 9 p.m. but more and more thinking of hormones, as my son indicated. i had a partial hysterectomy in the 1980, i am 62 "soon" have been on only estrogen for years, stopped at one point now last 3 years back on it. started having these seizure again about 2 years ago. seems again, every few months, at first went maybe 6 months then now this last year almost monthly. again about same time each month. i have a daughter that lives with me, she still has her monthly periods, i know that when around other women you take on their pattern, working with two women, my daughter as i found out has been having her time of month about when i have seizures. so ok, i am on 0.75 mg of estrogen, maybe if i increase to higher it will balance my estrogen out, and i could stop having so many seizures? i have not mentioned this to doctor yet, wanted to kind of test myself out. if i report to doctor about seizures, he is talking of taking my drivers license away. i work, everyday, need my car, i have never had a problem while driving, last thing i need to driving privileges taken away. anyway, as i said my son was the first to notice the pattern. what is your opinion. higher hormones only estrogen, do not need progesterone, still have my ovaries. confused and tired, need to figure this out, anyone with any ideas? still sitting here at work tired from seizure this am, so far so good though since taking my 200 mg. hopefully no more today. open to many many suggestions.

My daughter. now 24, had her first seizure at about 20 months old . They called it a peti mal , and one doctor even called it a fever seizure, as she was in hospital when she had the seizure, it was monitored and timed. It was horrible. I now know it WAS a gran mal seizure for sure. ... she had no more seizures that i was aware of, although i have recently found out that throughout her teenage years she had abscence seizures (staring spells)... a few months after the birth of her fist child,age 22. she had another gran mal seizure ... tonic-clonic they called it ... well it resulted in tests and nuerologists ... and finding out that obviously something that seemingly lays dormant for years can just 'happen' ... she is now 24 and pregnant again, her seizures are worsening, her meds cannot be increased and I am extrememly concerned about labor.

may God go with all of you ...

I developed epilepsy at 15 and continued having seizures until I was 27 which was when I had my first child. I am 62 now and haven't had any seizures. I am sure it has something to do with hormone levels, I think if I hadn't had children I would still have epilepsy.

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