Hormones and Epilepsy… The Quest For Balance…

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:

The Perimenopause Blog Website          The Perimenopause Blog Facebook Page

 

 

 

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8 Responses to Hormones and Epilepsy… The Quest For Balance…

  1. Kim says:

    My seizures started when I started getting my period. I do find that when it’s that time of the month I’m a little off, but I can’t really tell if I’m having seizures. I had also developed a tumor in my pituitary gland that stopped me from having my period for over a year. After doing low dose chemotherapy the tumor shrunk and other hormonal therapy helped me get my period again. I just worry that I might go through what you’re going through because my seizures started when I got my period. I see a neurologist and an obgyn but I don’t want to suffer any more than what I already have and still go through. What are your suggestions cause I’m getting close to the age of permenopause.

  2. teena says:

    Seizures since 12, along with every menstrual cycle I never heard that before from a doctor thank you. Now 52 worried about whole menopause thing

    • rebecca brandt says:

      i’m 51 and have been period free for 9 months now. my seizures are not as effected anymore by hormones of cycles. But now if i’m sick or in pain they are triggered……it’s all a double edged sword….take care and be careful

  3. kristi russo says:

    Great article re: Hormones and Epilepsy… The Quest for Balance

    I really appreciated your article and it is so helpful.

  4. Karen says:

    I have had seizures since age 10. I am now almost 60. During childbearing years seizures were catamenial except during pregnancy, I didn’t have them at all. After about 10 years after last child, I had hysterectomy for endometriosis. I couldn’t get a pattern to the seizures. Now that all of that is behind me, I still have the seizures along with signs like PMS just a few days before they start. What’s going on?

  5. Dorrin Rosenfeld says:

    All my seizures were catamenial in nature. 5 years after I began getting seizures (after an accident in my twenties), they settled into a two week pattern, menstruation and ovulation. After I verified this over several months, I began approaching neurologists about it. 8 drs later, I found a great guy who not only acknowledged it, but gave me some research papers to read (I am a Dr). He asked me if I wanted to take birth control pills. My seizures had been unpredictable and very strong before that, so my husband had a vasectomy before our marriage. I got on depo-provera and with my seizure meds, both my periods and seizures ended! This is all in the past tense because I just stopped all meds over the last year, as I’m through menopause, and everything appears to be fine!!! The Depo did produce some side-effects, but not nearly as bad as running to the emergency room to get my face sewn up after a gran mal…

  6. amanda walker says:

    last june 2015 while driving to work i had my first ever seizure aged 47, didn’t know it at the time until i had another 4hrs later laid in ER. had all tests done, all come back normal. neuro said i’m an epileptic will be on meds for rest of life get on with it!
    after upping the epilim dose i was still having tonic clonic’s once every month for 3 months at the start of my period, not happy with the neuro who dismissed any connection to my hormones, i went to see a Naturopath, he said to stop taking the epilim after a few days of taking his meds (gotu kola, omega3, pau d’arco and evening primrose)
    this made me feel a whole lot better within days and i went 100 days seizure free until my period in November when they started again on first day and again on my period in Dec. I started keeping a diary and noted i only have seizures within a day of started my period.
    Looking back, i stopped taking my contraceptive pill which was Microlut (progesterone only) in May last year after husband had Vasectomy in April. Convinced that this has something to do with starting seizures in June, i asked my doc if i could trial taking the same pill again for a couple of months to see if it had any positive effect, up to now 3 weeks on it doesn’t seem to be helping but it may be to early to tell, i also got some natural progesterone cream to try for second half of my cycle too.
    i find it very hard to get helpful information other than from forums like this one, i would be grateful if anyone else has some ideas to help me control this or is going through the same thing

  7. Robyne says:

    Hi Amanda,That’s interesting. I started having grand mal nocturnal seizures at 36yo. I knew stress was a factor, and fortunately I reacted to both keppra and epilium. So I had to find something else. After 52 seizures in 2.5years, I have not had any more since July 2009! And yes it was imbalance in hormones: estrogen dominant, and estrogen is pro inflammatory. I took high doses (200mg minimum per day) of transdermal natural bioidentical progesterone, and have my life back.The key is bio identical, and the key is high amounts initially. And vitamin d is very important as it works together with progesterone especially take with it if you are deficient. Initially high doses taken everyday, then after a few months, cycled with your normal hormonal cycle to allow receptors to rest (or if you don’t have a cycle, don’t use for 6-10days every calendar month).

    I have spent years researching since, and there is lots of scientific reports on the positive effects of natural progesterone. I haven’t found any negative effects like AED medications. And in the long run correcting imbalance in hormones helps the body with bone loss, and even cancer prevention…yes the studies are out there.. Balance is the key! Note: from what I understand, the synthetic progesterone you were taking as a contraceptive kind of tricks the body into thinking it has enough progesterone so your body won’t produce it. However the synthetic type does not have the neuro protective effects. So when your oestrogen went up after, which is pro seizure, you did not have enough to balance. On peri menopause and synthetic vs natural progesterone check out professor jerilynn Prior who investigated due to personal experience, and on epilepsy and progesterone I think the Emory university school of medicine has done research, Into natural progesterone and Neuroprotection. Check it out, and chat to Drs. I wish I had a specialist who would of recommended progesterone earlier. Even now it’s hard to find one who is so up to date… Lucky she who wrote above!

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