Epilepsy Talk

Hormones and Epilepsy in Women and Men… | February 23, 2016

There’s a dynamic relationship between hormones, brain function, and seizures.

Whether you’re a woman or a man, sex hormones can influence the excitability of nerve cells in the brain and thus influence seizure control.

Hormones generally don’t cause seizures but can influence if or when they happen.

The brain is the seat of the body’s hormones and regulates the release of the major sex hormones — estrogen, progesterone, and testosterone.

These hormones, in turn, provide feedback to the brain and control the amount of hormones released at different points in time.

The interactions between hormones, epilepsy, and the medications used to treat epilepsy are complex, with interactions which affect both men and women in various ways.

Abnormalities of baseline endocrine status occur more commonly in people with epilepsy.

Research has shown that seizure discharges in certain brain areas can alter the output of hormones from the brain, and sex hormones can influence how the brain works.

For example, estrogen has been shown to increase seizure activity, while progesterone can have anti-seizure effects.

Seizures that are most likely to be affected by hormonal changes are partial seizures that involve the temporal or frontal lobes of the brain. 

However, hormonal associations may also be seen with generalized seizures.

The temporal and frontal areas of the brain are closely connected to the hypothalamus and pituitary glands of the brain, which control the release of hormones.

Women

Some women with epilepsy experience changes in their seizure patterns at times of hormonal fluctuations.

For example, puberty is a time when hormones are stimulating body changes. It is not unusual for certain kinds of seizures to disappear at puberty, while other seizure disorders may start at this time.

Many women with epilepsy see changes in the number or the pattern of their seizures around the time of ovulation (mid-cycle), or just before and at the beginning of their menstrual periods, which is known as “Catamenial Epilepsy”.

Research shows that the female hormones, estrogen and progesterone, act on certain brain cells, including those in the temporal lobe, a part of the brain where partial seizures often begin.

Estrogen excites these brain cells and can make seizures more likely to happen.

In contrast, natural progesterone can inhibit or prevent seizures in some women.

Findings also indicate that women who have seizures that start in the temporal lobes of the brain seem more likely to have reproductive disorders such as sexual dysfunction, decreased fertility, premature menopause, polycystic ovarian syndrome, and irregular (or no) ovulation, than women in the general population.

Men

Hormonal changes in men are less obvious than in women because men do not have a monthly cycle.

In the case of men, experts estimate that approximately 40 percent of men with epilepsy have low levels of testosterone, the hormone that stimulates the development of male sex organs, sexual traits and sperm.

Some of the older seizure medications lower the active part of testosterone.

Both epilepsy itself and the antiepileptic drugs (AEDs) used to control seizures may be responsible for these hormonal changes.

Persistent seizures in adults may be associated with hormonal and neurological changes that contribute to sexual dysfunction.

Temporal lobe epilepsy, in particular, is known to have adverse effects on testicular endocrine function.

Research suggests that the AEDs phenytoin, carbamazepine and phenobarbital adversely affect hormone levels by reducing the level of free testosterone which, in turn, reduces sexual desire.

Some good news regarding AEDs and hormonal effects does exist: Studies show that the AED lamotrigine may not have a negative impact on sexual function.

In fact, in one study, lamotrigine was shown to have a favorable effect on sexual disorders in men with epilepsy who had partial seizures and were taking other AEDs.

Reduced testosterone, one hormonal effect frequently seen in men with epilepsy, can adversely affect one or more of the following: energy, mood, drive, sexual function, bone density and seizure control.

Both

Estrogen can excite brain cells and can make seizures more likely to happen. In contrast, natural progesterone breaks down into a substance that can inhibit or prevent seizures in some women.

Epilepsy and antiepileptic drugs can alter sex hormone levels to promote the development of reproductive endocrine disorders in both women and men.

Treatment of epilepsy and selection of antiepileptic drugs may be important to reproductive health in women and men with epilepsy. Sex steroids and their metabolites may also provide treatment for seizures.

It’s important to keep track of other factors that may affect seizure patterns, such as missed medication, loss of sleep, unusual fatigue, intense physical training, stress or an illness.

If you suspect that hormones play a role in your seizures, talk to your physician or the nurse who helps monitor your seizures. Blood tests of certain hormone levels and of your seizure medication may provide helpful information.

Those who have special concerns about seizures and hormones should obtain a referral to a specialist, either a neurologist or a neuroendocrinologist (a neurologist with training in hormone disorders and their effects on brain function).

 

To subscribe to Epilepsy Talk by email, simply go to the bottom of the right column and click on “Follow”.

 

Resources:

http://www.epilepsy.com/information/women/all-women/hormones-and-epilepsy

http://www.pathophys.org/sexhormones/

http://www.efepa.org/living-with-epilepsy/men-with-epilepsy/#ME1

http://journals.lww.com/co-neurology/Abstract/2005/04000/Sexual_hormones_and_epilepsy__threat_and.15.aspx

http://www.epilepsygroup.com/epilepsy-information-sub-detail5-59-18-78/epilepsy-seizure-men-health.htm

 


21 Comments »

  1. thanks hormones have had a big influence on me. I am taking 150 mg of progestrone a day! doing much better since we reduced the dose from 200 mg.

    Like

    Comment by Veronique — February 23, 2016 @ 2:02 PM

  2. I just had my thyroid removed 6 days ago, how do you feel this will affect me with hormones and seizures? I have complex partials and already have noticed a few and I usually don’t even know when I have then which leads me to wonder how many I really am having!

    Like

    Comment by Jackie Moore — February 23, 2016 @ 2:15 PM

  3. I know without a doubt that hormones have SOMETHING to do with my seizures, but which hormones and how, I have no clue. They started at age 10; I’ll be 60 in 2 wks. First, they were random, then they were catamenial. Now that I am passed that age, I still have them. The strange thing about them is when the time for them (clusters) to start, I have problems that look like PMS. Even some of the best minds in the field cannot find a link

    Like

    Comment by Karen Danyels — February 23, 2016 @ 2:34 PM

    • Karen, here’s what I’ve researched:

      In one study, one-third of the women who had epilepsy before menopause reported no change in their seizures.

      A slightly larger proportion reported worsening of their seizures, and a slightly smaller number reported improvement.

      (There was even a group in which seizures occurred for the first time during or after menopause, with no known cause.)

      Some doctors think this difference may be related to the effects of seizures on the brain structure called the hypothalamus or the pituitary gland, but more research is needed.

      http://www.epilepsy.com/information/women/menopause-and-epilepsy

      Like

      Comment by Phylis Feiner Johnson — February 24, 2016 @ 10:04 AM

  4. My periods some times make me have seizures about two weeks , that,s how I know I,m close to my period. Is hormones and periods causes people to serizure.

    Like

    Comment by michele metzger — February 23, 2016 @ 3:55 PM

  5. Good afternoon Phylis Feiner Johnson,

    Your article on hormones & correlation to epilepsy was very informative.

    Sadly, I lost my Fraternal Twin Brother last November to SUDEP & believe it was probably because of the hormonal imbalance & this anti seizure drug..Gabetin he was taking very large dosages daily per his VA doctor .

    Can you enlighten me any further on this drug & what is actually does ?

    If you should have any Support Group information out here in Southern California I would be most grateful.

    We are both U S Air Force Veterans & I recently visited his niche at the Riverside National Cemetery & am having a very difficult time emotionally losing him & would like to join a support group to help me cope with the sudden loss of my brother.

    Warmest Regards,

    AL “AJ” Johnson –Ontario, California
    Email: ajgolfnut5@gmail.com

    Like

    Comment by AL "AJ" Johnson — February 23, 2016 @ 3:56 PM

    • AJ, The FDA and Pfizer issued an updated status report for Neurontin (gabapentin) in September 2015.

      “Neurontin can cause anaphylaxis and angioedema after the first dose or at any time during treatment.

      Signs and symptoms in reported cases have included difficulty breathing, swelling of the lips, throat and tongue and hypotension requiring emergency treatment.

      Patients should be instructed to discontinue Neurontin and seek immediate medical care should they experience signs and symptoms of anaphylaxis or angioedema.” – See more at: https://www.aesnet.org/clinical_resources/treatments/drug_alerts_fda_news#sthash.yxhCTqGm.dpuf

      So it looks like your suspicion of Gabapentin is correct.

      As far as Adult Support Groups in Southern California, telephone number: (714) 916-0456 will connect you with an educational and social support group for adults diagnosed with epilepsy.

      This group meets monthly to learn about the most up to date information, treatments and research in the field of epilepsy.

      Expert guest speakers are scheduled regularly who focus on specialized information relevant to group member’s needs and interests.

      Spanish Translator Available
      Second Friday of every month, 7:00-8:30 pm

      Other support groups include:

      The END Epilepsy Groups of Greater Los Angeles is composed of an Adult Therapy Group, Family & Friends and Women with Epilepsy as well as a Sibling Network.

      Each group and even each gathering may have a different topic or focus but, over a period of time, participants will benefit from the mutual therapy, education, socializing, self-help and idea-sharing. http://epilepsyfoundationgla.org/api/Index.cfm/cms.page/i/4145/Support-Networks/.

      The Epilepsy Support Network of Orange County, CA has an Adult Educational Support Group, Teen Club, Emotional Support Group for Parents, On-Line Support Group for Parents, Mom’s Night Out, Special Needs Child Care and Community Presentations. http://www.epilepsysupportnet.org/html/services.html

      The Epilepsy Foundation of San Diego County, provides Individual and Family Counseling, plus Crisis Intervention to help in the process of learning to cope successfully with epilepsy, as well as with the life issues impacted by epilepsy. http://www.epilepsysandiego.org/index.asp?f=supserv

      Please accept my condolences.

      I hope this helps.

      Like

      Comment by Phylis Feiner Johnson — February 24, 2016 @ 10:29 AM

  6. Hmm, I take Gabapentin and it’s the best medicine i’ve been on and i’ve been on it for 3 yrs now. My question is did it control his seizures and was he on any other medications? And how long has he been on it?

    My question on all this hormonal stuff is should regular release of sexual fluid help control ones hormonal imbalance and help with seizure reduction? I would assume pent up sexual fluid in ones body would send the signal to the brain that release is needed. Maybe some woman don’t get that signal. So many variables involved. One of them i’m sure is the stress that is also related to menopause.

    At one point i had seizures once a month, that was the norm for a few years, now it’s like 1 every 2 months. But since i’ve started on this new manufacturer of Gabapentin, i haven’t had a seizure for going on 4 months. But I think that has something to do with taking synthetic steroids for severe back pain. Something with Steroids that helps seizures in my opinion. After my brain surgery, my regular seizure did not start until after i weened off of the steroids they had me on at the time. Forgot the name of it.

    Like

    Comment by Zolt — February 26, 2016 @ 4:45 PM

  7. The temporal and frontal areas of the brain are closely connected to the hypothalamus and pituitary glands of the brain, which control the release of hormones.

    Seizure activity may influence levels of hormones in the body, and the levels of estrogen and progesterone in the body can affect seizures.

    So, which came first, the chicken or the egg? You’ve got an excellent question (as always), Zolt.

    Some research on steroids:

    Steroid therapy for epilepsy management is considered unconventional and certainly not a decision to be made lightly because of the serious risks and undesirable but common side effects.

    Unless the epilepsy remits within the course of treatment, steroid therapy will need to be followed with an alternative anti-epileptic drug/treatment (AED) once the steroids are stopped.

    How and why steroids work to control epilepsy is poorly understood.

    Specialists assume it has a useful anti-inflammatory action but it is probable that the release of particular hormones (stress hormone) and their effect on the brain’s cortisol receptors and stimulation of the adrenal glands is thought to be beneficial too.

    One thing is known, steroids can seem like a wonder drug when other treatments have failed.

    Even though it can be a wonder drug for controlling seizures, some treating doctors will still refuse to prescribe steroids because they believe the side effects are potentially too harmful compared to other AED (anti-epileptic medications).

    Yet this treatment option is gaining popularity because doctors are constantly learning safer methods to administer the drug.

    http://doosesyndrome.org/treating-mae/steroid-therapy

    Interesting, eh?

    Like

    Comment by Phylis Feiner Johnson — February 26, 2016 @ 6:53 PM

  8. My epilepsy started at puberty-1968. 20 years later I saw an endocrinologist/neurologist and found I had very high estrogen levels. Lowering them could cause other problems but after menopause they would be lower. At 55-2000-I went thru this but seizure activity didn’t stop-I now have daily partials.
    A recent endocrinologist told me my body’s estrogen
    were low but research had shown the brain is able to make estrogen itself. A neurologist confirmed this and
    said more research into the brain/hormones was just
    beginning! I’m now trying a very different med for my
    seizures.hope my brain responds

    Like

    Comment by epilepsytalkblog — February 28, 2016 @ 10:07 AM

    • Attn: Phylis Johnson’

      I sent you an email last week & would appreciate when time permits to a reply in regards to the loss of my Fraternal Twin Brother & asking for any referrals you might have here in Southern California for Support Groups.

      Enjoy your Sunday & looking forward to hearing back from you SOON.

      Respectfully,

      AL “AJ” Johnson Email: ajgolfnut5@gmail.com

      On Sun, Feb 28, 2016 at 7:20 AM, Epilepsy Talk wrote:

      > epilepsytalkblog commented: “My epilepsy started at puberty-1968. 20 years > later I saw an endocrinologist/neurologist and found I had very high > estrogen levels. Lowering them could cause other problems but after > menopause they would be lower. At 55-2000-I went thru this but seizure a” >

      Like

      Comment by AL \AJ\ Johnson — February 28, 2016 @ 1:12 PM

      • I’m sorry AJ, I did reply, but it must have gotten lost in the shuffle. (My mother-in-law just died).

        Here are some support groups:

        CALIFORNIA

        The END Epilepsy Groups of Greater Los Angeles is composed of an Adult Therapy Group, Family & Friends and Women with Epilepsy as well as a Sibling Network.

        Each group and even each gathering may have a different topic or focus but, over a period of time, participants will benefit from the mutual therapy, education, socializing, self-help and idea-sharing. http://epilepsyfoundationgla.org/api/Index.cfm/cms.page/i/4145/Support-Networks/.

        The Epilepsy Support Network of Orange County, CA has an Adult Educational Support Group, Teen Club, Emotional Support Group for Parents, On-Line Support Group for Parents, Mom’s Night Out, Special Needs Child Care and Community Presentations. http://www.epilepsysupportnet.org/html/services.html

        The Epilepsy Foundation of San Diego County, provides Individual and Family Counseling, plus Crisis Intervention to help in the process of learning to cope successfully with epilepsy, as well as with the life issues impacted by epilepsy. http://www.epilepsysandiego.org/index.asp?f=supserv

        Like

        Comment by Phylis Feiner Johnson — February 29, 2016 @ 10:49 AM

      • Good Morning Phylis,

        My sincerest condolences for your loss of your mother-in-law.

        Thank you very much for the Referrals, which I will check into immediately. My family continues to tell me “just get over the loss of your Twin” because of either witnessing me crying or have cried over losing him so suddenly ..SUDEP. At least the lady Sheriff/Coroner said he passed away very quickly in his chair & looked very peaceful.

        Warmest Regards Phylis & be assured I include you & your family in my nightly prayers.

        AJ
        Ontario, California

        Like

        Comment by AL "AJ" Johnson — February 29, 2016 @ 11:42 AM

    • Good morning Diana Foster,

      Epilepsy Talk is not my Web site, but you can reach out to Phylis Feiner Johnson who is at : comment-reply@wordpress.com

      Wishing you much success Diana.

      AL “AJ” Johnson

      Like

      Comment by AL \AJ\ Johnson — March 16, 2017 @ 10:28 AM

  9. What med are you taking? Is it steroid therapy?

    I hope it’s working for you!

    Like

    Comment by Phylis Feiner Johnson — February 28, 2016 @ 10:23 AM

  10. AJ, you never “get over” the loss of a loved one — especially a twin who shares your heart and soul.

    Thank you for your condolences.

    Hope the referrals are helpful.

    Like

    Comment by Phylis Feiner Johnson — February 29, 2016 @ 12:56 PM

    • Good afternoon or early evening Phylis,

      I want to thank you again for all that you do to enlighten & inform folks that have been diagnosed with epilepsy.

      Please feel free to give out my email address: ajgolfnut5@gmail.com to hopefully there are other surviving Twins out there that I could exchange stories & gain some much need emotional support through our emails or even phone conversations.

      I hope & pray someone reading my email will send me an email & start some supportive dialogue.

      Enjoy your evening Phylis & weekend & again thanks for all that you do…you’re a terrific human being!

      Warmest Regards,

      AL “AJ” Johnson
      Ontario, California

      Like

      Comment by AL Johnson — March 19, 2016 @ 6:47 PM

  11. AJ, as you can see, many people follow various threads. And I hope that those who do, can share, take comfort and benefit from your experiences.

    Thanks for the compliment. Sometimes it’s lonely out here, being a one-woman researcher and writer. 🙂

    Like

    Comment by Phylis Feiner Johnson — March 19, 2016 @ 7:11 PM


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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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