Epilepsy Talk
Catamenial Epilepsy – Do You Have It? | August 7, 2011
Do you notice that your seizures worsen just before your period…or during the first few days…or at mid-cycle? You could have “catamenial epilepsy,” or hormone sensitive seizures, a tendency for increased seizures related to your menstrual cycle. The causes of catamenial epilepsy are not totally understood. It could be an imbalance between your two female sex hormones, estrogen and progesterone, or you may not be producing enough progesterone during the second half of your menstrual cycle. It is also possible that the amount of antiepileptic drug (AED) circulating in your bloodstream may decrease before menstruation.
Women with partial epilepsy, especially temporal lobe epilepsy, seem to be most likely to have catamenial epilepsy. And before puberty, girls may have recurrent clusters of seizures each month until puberty, when the seizures become catamenial.
Some theories have been suggested to explain why the menstrual cycle should affect epilepsy, including cyclic changes in the immune system. It has also been suggested that, rather than the epilepsy itself becoming worse, women’s perceptions of epilepsy frequency before a period may be due to dramatic mood change or premenstrual tension. (Sound familiar?)
One of the main theories, however, is that seizures around periods may be due to fluctuations in the two major reproductive hormones, estrogen and progesterone, which rise and fall in the menstrual cycle. The effects of those hormones on brain excitability are at the root of this theory. Estrogen seems to be the “bad guy,” lowering seizure threshold, while progesterone is the “good guy,” offering more protection against seizures and increasing seizure threshold.
And it has been shown that hormones directly change EEG activity. For example, in one study, an IV injection of estrogen resulted in clinical seizures in 4 of 16 women with epilepsy and activated EEG epileptic-type activity in 11 of these women. An IV infusion of progesterone decreased this type of activity temporarily in 4 of 7 women with partial epilepsy.
But the question remains, do you actually have catamenial epilepsy or is it stress, lack of sleep or even the effectiveness of your meds?
To start with, it’s a good idea to keep a menstrual diary, charting your seizures as relative to the stages of your period. Do the seizures occur more often before your cycle begins…during the first few days…or at mid-cycle? Next, you might want to have your basal body temperature and your serum hormone levels checked.
And if you do have catamenial epilepsy, don’t despair. Just getting diagnosed is a positive. Then you can actually do something about it. And there are several options available.
Extra medication the week before menstruation in the form of an “add-on” AED such as clobazam is the most common method of treating seizures around the time of menstruation.
Other methods include treating catamenial epilepsy with the contraceptive pill in efforts to achieve a better balance of hormones.
Another theory is that seizures around menstruation are linked to premenstrual water retention, which upsets the normal balance of the anti-epileptic drug in your body, thus making it less effective. For this reason, doctors have commonly treated catamenial epilepsy with diuretics to reduce fluid.
Then there’s hormonal therapy — such as progesterone. When taken in capsule form on a cyclic basis, it may successfully reduce catamenial seizure risk in some women. Overall, natural progesterone is better tolerated than synthetic agents, but no evidence substantiates whether one is more effective than the other. I think for many, it might be may be a case of individual preference.
But any way you look at it, having your period and all its accompanying aches and pains is bad enough. When seizures become part of the mix, it’s like adding insult to injury.
That’s where a doctor comes in. My preference is a female endocrinologist. (Sometimes, men just don’t get it.)
The bottom line is: there’s no reason to live in fear or misery. Get yourself diagnosed and you could well be on your way to a solution.
To subscribe to Epilepsytalk.com and get the latest articles, go to the bottom box of the right column and click on “Sign me up!”
Resources:
http://professionals.epilepsy.com/page/catamenial_patterns.html
http://www.epilepsyontario.org/client/EO/EOWeb.nsf/web/Seizures+and+the+Menstrual+Cycle
http://www.mayoclinic.org/epilepsy/women.html
http://emedicine.medscape.com/article/1186482-overview#aw2aab6b3
http://www.cornellepilepsy.com/epi_inf/cat_epi.html?name1=Catamenial+Epilepsy&type1=2Active
Tags: catamenial epilepsy, estrogen, hormone sensitive, menstrual cycle, progesterone, TLE
72 Comments »
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Epilepsy Talk 
No, I haven’t noticed, but I’ll try and note it for the record next time.
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Comment by mkfarnam — August 7, 2011 @ 7:51 PM
HAHA, Mike, Ain’t happening for you unless ya had a sex change. 😉
My Sister & Daughter Both have been diagnosed w/ Catamenial Seizures. I never kept a Journal, back when, so, have no clue if mine are related to Hormonal changes or not. 😦
Sis is on Progesterone, D3 & Modified Atkins Diet. Daughter is on Topamax & Lyrica. Both, Finally have Seizure Control.
Thanks for the Article Phylis. I will save & Post on WebMD for ya. 🙂
Love Candi
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Comment by candi — August 8, 2011 @ 1:23 AM
Hi, Phyllis,
I’m a new reader and am happy to have found your site. I care for my brother who has had uncontrolled seizures his entire life and I blog about it as well to raise awareness about epilepsy. I appreciate the information you share!
Trish
http://www.robertssister.com
caregiving. family. advocacy.
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Comment by Trish — August 7, 2011 @ 10:55 PM
Hello Trish,
This is a Good place for PPL w/ EP & Caretakers to Learn & Get Support. 🙂 Hope you stick around. Share your comments/thoughts/questions/whatever. We are Listening. 🙂
Love Candi
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Comment by candi — August 8, 2011 @ 1:04 PM
Trish, welcome and make yourself at home. You’lll find lots of stuff here (137 articles!) so if there’s anything in particular that you’re looking for, just sing out. We’re a relatively small family here and we’ll be happy to help you in any way we can.
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Comment by Phylis Feiner Johnson — August 8, 2011 @ 11:39 AM
Hi, I was diagnosed with catamenial seizures 16yrs ago. I’ve been tracking them on the calendar every month. I am uncontrolled. I am maxed out on Keppra and Topamx. I also take Prometrium 1 cap every night. I get breakthrough partial seizures around ovulation and the start of my period. However, these days it is extremely difficult to track them because I am perimenpausal!! Anybody out there going through perimenopause with catamenial seizures? Or I wonder if they end with Menopause??
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Comment by Pat Sovocool — August 8, 2011 @ 10:43 PM
Hi Pat, I have Catamenial Seizures that have increased w peri menopause. Just gets worse now!! I m going to try bio identical Progesterone. Has anything worked for u? Good luck! Karin
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Comment by Karin — March 26, 2017 @ 11:16 PM
hi ya yes I took the concetraptive pill for around 10 years no breaks & that seems to calm them down. I stopped taking the pill last year… have started getting night sweat & during ovulation.. ive started having night fits.. sometimes 2 in 1 night. I have been to GP & she has given me HRT patches to start taking along with progestrone tablets.. abit worried about starting to take these… has anyone else been given the same ?
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Comment by Samantha Mcdonald — September 9, 2020 @ 7:34 AM
From what I can see, this is an effective measure that is ok.
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Comment by Phylis Feiner Johnson — September 9, 2020 @ 9:13 AM
My epilepsy has been under control for many years but I have been through menopause and am going to see an Epileptologist hoping there is no more seizure activity. Would be wonderful to go off meds! I hope you will be well!
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Comment by Lesleigh — August 6, 2020 @ 10:09 PM
That would be wonderful.
The article below may be of interest to you:
Hormonal Imbalances and Seizures in Women https://epilepsytalk.com/2019/11/25/hormonal-imbalances-and-seizures-in-women/
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Comment by Phylis Feiner Johnson — August 7, 2020 @ 9:10 AM
Hi Pat, thanks for stopping by…
Here’s the deal, according to the Mayo Clinic:
In perimenopause, periods become irregular and more frequently anovulatory (without release of an egg). Many women experience an increase in seizures during perimenopause. Seizures may also increase due to sleep deprivation caused by hot flashes.
About 33 percent of women with epilepsy — and frequently women with catamenial epilepsy — will experience a decrease in seizure frequency at menopause. One-third of women with epilepsy will experience no change, and one-third will experience an increase in seizure frequency. The majority of women with epilepsy will need to continue their epilepsy treatment during and after menopause.
http://www.mayoclinic.org/epilepsy/women.html
I hope this answers some of your questions.
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Comment by Phylis Feiner Johnson — August 8, 2011 @ 11:20 PM
Thanks, I guess I’ll just have to wait and see…try to live through the INTENSE roller coaster!!
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Comment by Pat Sovocool — August 14, 2011 @ 3:13 PM
It ain’t easy. I’m speaking from the other side. Somewhat successfully. (Reduction of meds. HOOOORRRRRAAAAYYYYY!)
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Comment by Phylis Feiner Johnson — August 14, 2011 @ 3:18 PM
”’ A ROLLER COASTER IT IS””!!!
what has happened to cause meds.to get reduced?
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Comment by sharon rollinson — October 9, 2015 @ 11:49 PM
Hi Pat,
I was diagnosed with epilepsy in 2008. My seizures are not as bad as they started off since I have been on aed meds. But I didn’t notice until recently that they would be more frequent around the time of my cycle. Now that I have read this article everything is much clearer now. Thanks so much for posting this.
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Comment by Amie Phillips — August 22, 2011 @ 2:35 PM
My daughter started with seizures around puberty. I now see a common pattern of them on the run up to her period and the first few days of her period. She is not on Epilesy drugs as the test showed them as non epileptic attacks. It seems in her case it is hormone related and we are back at the clinic next week 😦
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Comment by Adele Fearn — January 10, 2012 @ 10:46 AM
Hi Im dealting with the same thing she is and i swear they are catameinial
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Comment by heather taylor — April 4, 2013 @ 5:10 PM
Try keeping a menstrual seizure diary. That should help you figure it out.
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Comment by Phylis Feiner Johnson — April 4, 2013 @ 6:03 PM
Has she had a COMPLETE hormone work-up?
It’s been shown that hormones directly change EEG activity. For example, in one study, an IV injection of estrogen resulted in clinical seizures in 4 of 16 women with epilepsy and activated EEG epileptic-type activity in 11 of these women. An IV infusion of progesterone decreased this type of activity temporarily in 4 of 7 women with partial epilepsy.
What type of doctor are you seeing? I think an endocrinologist might help. (But I’m no doctor.)
One idea: Have your daughter keep a menstrual diary. Then take that diary to whatever doctor(s) you see.
I agree it could be catamenial epilepsy. Or it could be those damn raging hormones. I had my first seizure when I was 12 and it was nothing to laugh about.
So, there’s the complete hormonal work-up first. Next, if that doesn’t show any clues, perhaps you should consult with a FEMALE neurologist. (I’m not kidding, many male neuros don’t have a clue about catamenial epilepsy.)
Here’s a list that might help you:
2012 List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors
https://epilepsytalk.com/2011/05/03/newly-updated-comprehensive-list-of-good-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors-2/
It’s a compilation by of recommendations by website forum members who have had positive personal experiences with docs over the years.
Good luck. And let me know how you do.
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Comment by Phylis Feiner Johnson — January 10, 2012 @ 3:17 PM
Oh God you are not lying at all i’ve been in and out of hospital a just got released recently and was trying to explain to the nuro doctor and i literaly had to tell him please dnt treat me like familiar source of info,he said wht do you mean i began to show info on catamenial epilepsy and Lord Jesus he never heard of it WOW!!! and guest what still did’nt wanna listen to me until they where outside of my hospital rm door doing rounds and he say’s to the attending she keeps talking about some catamenial epilepsy and the chief doctor said that does exist he never apologized for thinking i didn’t know what i was talking about and his remedy to my healing was this maam you’ve been hospitalized almost every month you can’t keep having breakthrough seizures so you have to take 2 or 3 seizure meds. and i said pills isn’t the root to this issue so i’ve started searching for answers and glad to run across you thank you and God bless you for sharing your story Isaiah 53;5 By his stripes we are healed, i believe!!!!!!
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Comment by sharon rollinson — October 10, 2015 @ 12:18 AM
Sharon, it’s the old, if the doc doesn’t know, you must not have it!
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Comment by Phylis Feiner Johnson — October 10, 2015 @ 10:31 AM
Hi Phyliis, I used to have this type of problem after my surgery and the Dr. I have now told me I was full of it. He didn’t believe me when I told him I only took them on my period. Can a girl still have them threw pre- menopause? Because, I myself feel I don’t need half of what Im on. I feel dr, in Canada are drug pushers.
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Comment by Shawna — February 25, 2014 @ 6:15 PM
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.)
Another study similarly identified groups in which seizures were unchanged, increased, or decreased.
This study found that women who had a pattern of catamenial epilepsy were more likely to have fewer seizures after menopause but they had more seizures during the period of changes just before menopause (called perimenopause).
http://my.epilepsy.com/info/women_menopause
I subscribe to the second study, because that’s what I’ve heard about from most women.
But you know those hormones — they seem to have of life of their own and can be very unpredictable!
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Comment by Phylis Feiner Johnson — February 25, 2014 @ 6:30 PM
Shawna, I don’t mean to sounds sexist, but many men (docs) don’t even KNOW what Catamenial Epilepsy is! 😦
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Comment by Phylis Feiner Johnson — February 25, 2014 @ 6:33 PM
”TRUE” I’VE EXPERIENCED IT UNTIL MY RECENT HOSPITALIZATION THE LAST NURO DOCTOR CAME TO GIVE ME FOLLOW UP DISCHARGE INFO. AND WHAT DO YOU KNOW SHE SAID THOSE WORDS HERSELF AND REFERED ME TO HER RESIDENT AT DREXEL UNIVERSITY
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Comment by sharon rollinson — October 10, 2015 @ 12:27 AM
I think the operative word here is “SHE”. (Not to sound too sexist.)
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Comment by Phylis Feiner Johnson — October 10, 2015 @ 10:34 AM
mine always stated 2 weeks early / later , after my monthly .. went through horrible pains , headaches , it was my father that noticed this .. drs back then , never put 2+2 together .. , since i had cancer of uterus & ovaries , had hysterectomy , ay 31 yrs old , was hoping the seizures would stop , .. no it didnt .. since i am now taking keppra & vitamins , havent had a seizure.. in 10 yrs .. but again , i go day-day , on precaution..
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Comment by cathy — August 11, 2014 @ 2:55 PM
WHAT KIND OF VITIAMANS?
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Comment by sharon rollinson — October 10, 2015 @ 12:29 AM
Specifically, Vitamin B.
B Complex Vitamins are, without a question, the star of vitamins. In sufficient quantities, especially those that combine B6, B12, folic acid, thiamine and biotin, are vital to the production of numerous brain chemicals. Like the neurotransmitters which serve as the chemical message bearers between your nervous system and brain. The most efficient way to make use of this “brain food,” is to take it in a B complex form, since this contains all the vitamins in the B group. And when combined, they work synergistically together.
Take a single B-50 B complex tablet twice a day with food. Each dose should contain 50 micrograms of vitamin B12 and biotin, 400 micrograms of folic acid, and 50 milligrams each of all the other B vitamins.
(If you feel stressed, you’ll probably do best with a higher intake of a B complex. A daily dosage of 100-200mg. may be required, split into doses 2 or 3 times a day. Take this extra dose for a short time until you find that you are fairly relaxed, and then cut down the amount.)
Also calcium, magnesium and iron, if they’re not included with your B Complex.
Here’s an article you might find interesting:
Brain Food for Your Health…
https://epilepsytalk.com/2011/06/21/brain-food-for-your-health%E2%80%A6/
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Comment by Phylis Feiner Johnson — October 10, 2015 @ 10:39 AM
Cathy, I hope your cessation continues. (I dare not refer to it as “good luck”, after all you’ve been through.)
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Comment by Phylis Feiner Johnson — August 11, 2014 @ 7:14 PM
I have had this problem for a long time. had seizures for 34 years started when I was 16. I have told various dr. over the years and the “men” didn’t listen to me. I am taking progestrone cz the hormone dr did a blood test and saw there was hardly any in my body. yea for him. I have seizures every 3 months. hoping to increase the cycle working on my diet and releasing more weight.
great article!
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Comment by successnowvb — November 5, 2014 @ 8:55 AM
YAY! Sometimes male docs just don’t get it. Or even know about Catamenial Epilepsy.
Glad that you were so smart to see someone else.
And happy that you’re on your way to solving your problems. (I wish the problem part could have been skipped.)
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Comment by Phylis Feiner Johnson — November 5, 2014 @ 1:20 PM
Hi,
I been having seizures for 5 years now n EEG exams, CAT SCANS, MRI TEST, Blood tests, STILL DONT TELL ME WHY I GET SEIZURES???!
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Comment by Susan Wong — December 9, 2014 @ 5:04 PM
Susan, if you think it’s catamenial epilepsy, I would keep track both of my periods and my seizure activity.
In any case, I think you should keep a daily seizure diary about your sleep habits, eating, daily activities (including upsets), timing and duration of seizures (if you can).
This might help your doc get a better handle of what you’re going through.
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Comment by Phylis Feiner Johnson — December 9, 2014 @ 5:56 PM
Reblogged this on successnowvb and commented:
great to see people paying attention. next question what happens when you hit menopause?
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Comment by successnowvb — December 9, 2014 @ 6:50 PM
great articles. question what happens when you hit menopause?
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Comment by successnowvb — December 9, 2014 @ 6:51 PM
About 33 percent of women with epilepsy — and frequently women with catamenial epilepsy — will experience a decrease in seizure frequency at menopause. One-third of women with epilepsy will experience no change, and one-third will experience an increase in seizure frequency. The majority of women with epilepsy will need to continue their epilepsy treatment during and after menopause.
http://www.mayoclinic.org/epilepsy/women.html
I hope this answers some of your questions.
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Comment by Phylis Feiner Johnson — October 10, 2015 @ 10:44 AM
hi im a 52 yr old women I have KALLMANNS SYDROME and iv been having seizure for the last 2 1/2 years, slowing getting worse, and are every day ,I get no warning iv had lots of brain scans and now awaiting video teletremy in hospital should be within the next 3 months, could you help me at all, thank you Julie
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Comment by julie king — February 18, 2015 @ 11:12 AM
It sounds like hormone therapy might help. (Estrogen Replacement Therapy). How about an endocrinologist?
Other than that, I’m stumped.
See if you can get anything out if this article:
http://flipper.diff.org/app../tools/info/5899
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Comment by Phylis Feiner Johnson — February 18, 2015 @ 12:50 PM
I would love my daughter to see a female endocrinologist. However, I don’t know if there are any in my area and I have been told I would need a referral from the epileptologist. The doctor didn’t seem like she wanted her to see an endocrinologist and instead referred her to a regular gynecologist. The gynecologist prescribed birth control, which for my daughter was an awful experience. Headaches, bloating, weight gain, constant bleeding, vomiting etc.. She is sixteen years old and has had epilepsy due to cortical dysplasia for over 2 years now. She has not been seizure free. She has been working with a doctor at Mayo Clinic so would expect them to know what is best. We currently live in a very rural area and have to drive several hours just to get to Mayo Clinic. Do you know if there would be any endocrinologists willing to see my daughter without a referral?
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Comment by Brenda — March 15, 2015 @ 8:32 AM
I think your primary care doc would be more than happy to give you a referral to an endocrinologist without any ego issues.
(In my experiences, most endocrinologists have been female. But you can ask specifically to avoid embarrassment!)
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Comment by Phylis Feiner Johnson — March 15, 2015 @ 11:45 AM
I ABSOLUTELY AGREE!! EGO EGO!!! i had to tell quite a few doctors these words i give honor where it’s due but your a doctor because i’m a patient,and your starched white lab coat is getting in the way of you becoming a greater doctor,here’s how you’ve heard of seizures ,the different kinds of meds. ect. but you’re not acknowledging the different kind of patients,how because you won’t take into consideration that no one in the world has my finger prints,which mean a buick is a buick but what if one is a 4cylinder and one is a v8 guest what doc.there named the same but the performance is different so when it needs to get fixed it goes to the buick dealership but doc.it takes a whole bunch of different equipment to fix it,but they’re so familiar with things that it’s sad because they won’t acknowledge the on the unit all have seizures but they all have different name fingerprints,blood types and more being a greater doctor requires not only wanna teach but remain a student as well if not dnt they realize they;ll run out of gas ,some will never taste humble pie because they’re still chewing that hard rubbery meat of pride that does’nt allow digestion,nor ability to swallow ,it has been annoying talking to all the lab coats instead of the doctors!!wow
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Comment by sharon rollinson — October 10, 2015 @ 1:56 AM
is having your tubes tied or getting a hysterectomy not a solution to this problem though? 😕 I had 2 seizures already. One in my sleep last night and i started my period during my sleep too. Then i had a seizure while biking and collapsed on street. Luckily I didn’t get hit by any cars and they called police. He asked if I needed ambulance but i was ok. I just walked across street to my husband’s work. Rested while knee was fixed w/ first aid kit & bandages. Then his co-worker took him to get our van, picked me & my daughter up as well as our puppy. Epilepsy is so scary. 😖 wish there was a cure. Only had this since being pregnant w/ my last baby. After that it went from 1 grand mal to absence seizures and 2 grand mals and complex partials every time I have my menstruation! 😳
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Comment by Mirabel — April 13, 2015 @ 7:42 PM
Tubal ligation is considered more of a sterilization technique.
Women can take progesterone supplements to reduce seizures.
Also, some women find success by undergoing a hysterectomy, which eliminates the menstrual cycle and hormonal imbalance.
I would seek advice from an endocrinologist, have a full thyroid panel done and see if hormonal therapy would be appropriate for you.
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Comment by Phylis Feiner Johnson — April 14, 2015 @ 9:01 AM
I think I have catamenial epilepsy because my seizures didn’t start til puberty and they do get worse around my menstrual cycle. I had really bad ones at the beginning of my pregnancies but thankfully everything turned out ok
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Comment by JESSICA — January 13, 2016 @ 8:33 PM
I’ve never been pregnant, but my seizures started in puberty too, and continued from there, whether or not I had my period.(So I DON”T have Catamenial Epilepsy.)
Your case was quite different than mine and I’m glad things turned out so well for YOU.
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Comment by Phylis Feiner Johnson — January 14, 2016 @ 9:48 AM
Hi phylis feiner, This sharon rollinson again I wanted to ask if u or do you know anyone that has had a better health because they of getting a total hysterectomy ,and if so please share the info. With me my gyno scheduled a total hysterectomy in Oct
And I just wanted to get some other opinions and advice and comfort because sometimes hearing from someone that had traveled a path that u have yet traveled can help eliminate fear and also give understanding, and wisdom for decision making, so please respond soon if u can and I appreciate ur transparency and love to help others who are in such a transition strength to carry on and hope, eliminating those emotions and feelings that ur all alone ,and this site assures me and so many others “”THAT WERE NOT ALONE””!!
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Comment by Sharon Rollinson — September 17, 2016 @ 3:02 AM
Dear Sharon, I don’t personally know of anyone who has better health because of a hysterectomy.
With half an hour of research, all I found were women like you, asking the very same questions in forums.
I did find this very oblique reference. (From a very reliable resource.)
“Epilepsy treatment has come a long way since the nineteenth century, when women with seizures often underwent hysterectomies or ovariectomies.
The logic was that by eliminating the menstrual cycle –which was linked with a higher seizure frequency at certain times — seizures would be eliminated as well.
The strategy didn’t work; in fact, it only made women less likely to consult with physicians.”
https://patients.aan.com/resources/neurologynow/?event=home.showArticle&id=ovid.com:/bib/ovftdb/01222928-200804030-00017
That’s all I could find Sharon. Wish I could be of more help. 😦
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Comment by Phylis Feiner Johnson — September 17, 2016 @ 11:31 AM
Phyllis, I enjoy reading all the information you share. Thank you. My seizures always are worse before and during the first stages of my cycle Le. I had two male doctors whom never believed it had to do with it. Thank God I finally found a female doctor to relate with. I have been with her for almost twenty years now.
I have a question for you, have you ever looked into why they happen around the change of seasons?? I always have a grand mal when they charge. Would it have to do with the atmospheric pressure changing? Thanks again for all your postings.
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Comment by Nicole Koloski — October 21, 2016 @ 6:52 PM
Sudden changes in weather, temperatures, and things such as dark skies, thunder, or bright, hot sunlight and humidity may be a definite trigger for some.
So, I’d say, you’re probably right!
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Comment by Phylis Feiner Johnson — October 22, 2016 @ 10:14 AM
Can increasing your drugs few days before your flow eliminate seizures? I’m on Tegretol- CR 200 mg twice daily. I still had seizures. I’m planning on reducing it to once a day before my cycle and increasing it back five days before my flow.
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Comment by Temitope — December 14, 2016 @ 11:12 AM
Doctors recommend that you INCREASE your dosage the week BEFORE menstruation. (See below.)
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Comment by Phylis Feiner Johnson — December 14, 2016 @ 12:10 PM
I got to know about my seizures when I got married. The first time was five months into my pregnancy. My husband was so scared! But there is high probability that I’ve been having it before then.I didn’t use any medication till I gave birth. When I was still breastfeeding my son, I’ll have seizures exactly five days before my menstrual flow. I was placed on Tegretol- CR 200 mg twice a day, vitamin C and vitamin E. Four months into the treatment, I decided to reduce the tegretol to once a day, and ended up having seizures at work. It was very embarrassing because epilepsy is a stigmatized illness in Africa. I’ve sticked to my exact dose since then but still have seizures this month and there is high probability that I had two months ago (no one was around except my one year old son). I’m so scared, very scared.
Can I increase my dose few days before my flow?
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Comment by Temitope — December 14, 2016 @ 11:02 AM
That’s what some doctors recommend.
Extra medication in the week before menstruation in the form of an “add-on” AED such as clobazam is the most common method of treating seizures around the time of menstruation.
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Comment by Phylis Feiner Johnson — December 14, 2016 @ 12:07 PM
Can you recommend what sort of doctor to see if you believe you have Catamenial Epilepsy? My Neurologist doesn’t seem to know much about it. She’s pushing for me to try VNS but I’d rather try hormone therapy or birth control if they might help before I go so far as to insert the VNS.
Also have you heard anything about people whose seizures started after coming off of birth control? I hadn’t experienced any seizures until a little while after I stopped taking birth control in my mid twenties.
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Comment by Liz — January 4, 2017 @ 4:47 PM
hi at 47 i came off contraceptive microlut pill, 2 months later became epileptic (grand mals) had seizures every month on either first day or day before my period, neurologist said it had nothing to do with my hormones or period times. i was put onto Epilim and it just made me feel so ill and was still having seizures even after increasing dosage. i went to see naturopath he looked into my eyes to determine problem and said stop taking Epilim and gave me natural meds, that kept me seizure free for 6 months, but then started getting bad headaches at beginning of periods. i went to see a hormone specialist and started with progesterone only troches, i went 12 months seizure free, but just had another one and knocked 4 of my teeth out, so still trying to find the ultimate fix, but in my case epileptic (Epilim)medication did not work for Catamenial Epilepsy, which i have since read is the case sometimes.
i went 18 months with no seizures while not taking any epileptic medication???
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Comment by amanda — January 29, 2018 @ 9:57 PM
Sometimes doubling up on your medication the week before menstruation in the form of an “add-on” AED such as clobazam can treat seizures around the time of menstruation.
But, I admit. In your case, it seems to be a crap shoot. 😦
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Comment by Phylis Feiner Johnson — January 30, 2018 @ 9:26 AM
Liz, I’m surprised that a female neuro wouldn’t be more conversant with Catamenial epilepsy.
Unfortunately, I can’t recommend a doc who specializes in Catamenial epilepsy per se.
But, progesterone can have anti-seizure effects, so I think your idea about hormone therapy could be a winner.
However, remember, I’m not a doc and I don’t want to steer you in the wrong direction.
So, I think a second consult would be an excellent choice. (I just wish I knew with whom.)
For what it’s worth, here’s an article on birth control and one on hormones:
Epilepsy and Birth Control
Hormones and Epilepsy in Women and Men…
https://epilepsytalk.com/2016/02/23/hormones-and-epilepsy-in-women-and-men/
I hope this has been of help in some small way. Good luck, Liz.
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Comment by Phylis Feiner Johnson — January 4, 2017 @ 5:23 PM
I am a female with mixed types of epilepsy, that developed at puberty. I am post-menopause now: the effects of hormones on seizures were not known when I was diagnosed. I did notice it myself when I had children in the 1990s. I suggested Depo-Provera to the neurologist at that time, but he had never heard to such a thing. Not too surprising for 25 years ago. I know it really weakens your bones, but you might want to ask about it.
Later on, another doctor tried Diamox, taken only 5 days a month before my period. Doses went up and down over the years, but it seemed to do the job. Sezuries strength went down to a point where I could excuse myself from what I was doing and go sit down.
We tried to decrease doses drug after menopause. It definitely did not work and so now is a daily drug.
I just wanted to let you know what happened to me in case it helps someone else.
Amother note: Diamox is no longer on the US market except as a 500mg sustained release. You would want the generic, acetazolamide, which comes in breakable tablets.
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Comment by Carol — March 6, 2017 @ 11:36 AM
Thanks for the valuable information, Carol. And for sharing your experiences!
Thanks also for the compliment!
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Comment by Phylis Feiner Johnson — April 28, 2017 @ 9:22 AM
I noticed epilepsy when i was 12years old it used to be worse during the day but now am 34 the seizures come during the last days of menstrual period only once in a month at night. I only take tegretol 200mg 2 and half tablet ×2. Help
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Comment by caroline — April 28, 2017 @ 1:07 AM
Caroline, I think it would be helpful to double your med dose around the time of your menstrual period, as so many have done with success.
Then, if that works, go back to your regular dose after your period.
Good luck.
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Comment by Phylis Feiner Johnson — April 28, 2017 @ 9:02 AM
I certainly had the catamenial trigger when I was younger. Now I am going through “the change” is this related also. My seizures are still unpredictable. This is despite surgeries, too many meds to count, etc. Is there anything I can do to help things? Thanks for all of your support and info. I certainly appreciate it.
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Comment by Cindy Fiser — December 13, 2017 @ 10:41 AM
I just read about menopausal seizures and they can dissipate or continue during menopause. In fact, no one seems to know the answer. But catamenial epilepsy can play a part of it.
“After puberty there are many more hormones in the body. Hormones have a direct effect on the cells of the brain.
Does that mean that a woman’s seizures might go away when she reaches menopause? Sometimes, but not always. In some women, seizures do seem to just disappear.
This usually happens in women who have catamenial epilepsy. For other women, menopause doesn’t seem to make a difference in their seizures.
And still other women have worse seizures during menopause.
Most of the time, though, doctors say that seizures become easier to control as you get older.
They are not sure if that’s because the seizures themselves are decreasing, or because newer medications are now available that control epilepsy better than in the past.”
https://www.webmd.com/epilepsy/guide/your-changing-hormones#2
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Comment by Phylis Feiner Johnson — December 13, 2017 @ 12:14 PM
My Granddaughter is 14 and has non epileptic episodes. Her periods have been really messed up up and the gynecologist has put her on birth control pills to regulate her cycle. These happen at school, on the softball field ( she is a catcher) and also at night. We have taken her to Vanderbilt where she presented with over 50 violent episodes and all they said was they see it all the time and for her to have counseling to see if something is going on we don’t know about. They did a brain scan and EEG during the episodes and found no medical reason for them. We did and they declared her well adjusted and no problems that should cause these episodes. We have taken her to and done everything we have been told to do but they are still happening. Very frustrating. Any ideas?
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Comment by Linda Morris — March 9, 2019 @ 12:23 PM
Many male doctors are slow to recognize Catamenial Epilepsy.
It could be PNES, Seizures or both.
“Pseudo Seizures” AND Epilepsy – Yes, You CAN Have BOTH!
Aside from birth control pills, there’s hormonal therapy — such as progesterone.
When taken in capsule form on a cyclic basis, it may successfully reduce catamenial seizure risk in some women.
Overall, natural progesterone is better tolerated than synthetic agents, but no evidence substantiates whether one is more effective than the other.
I think for many, it might be may be a case of individual preference.
I hope you find a solution soon.
It’s hard enough to be a 14-year-old teenager, without all this confusing stuff going on!
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Comment by Phylis Feiner Johnson — March 9, 2019 @ 4:59 PM
Here in the uk they hardly recognise catamenial epilepsy and have told me i cant have it as im menopausal
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Comment by Cath Mcintyre — March 22, 2021 @ 3:39 PM
We know that the hormones produced by the ovaries, including estrogen and progesterone, can affect seizures, so we should expect changes as the levels of these hormones change around the time of menopause. The relationship is complicated, however. Estrogen can increase seizure activity but progesterone can reduce it. When levels of both hormones decrease at menopause, the result is hard to predict.
As a group, women with epilepsy who have gone through menopause have about the same frequency and severity of seizures as younger women… https://www.epilepsy.com/living-epilepsy/epilepsy-and/women/menopause-and-epilepsy
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Comment by Phylis Feiner Johnson — March 22, 2021 @ 4:23 PM
Summary
Hormonal fluctuations in the menstrual cycle have been shown to have an impact on the epilepsy in women with catamenial epilepsy. The epilepsy frequency is higher in the elderly, and this part of the population is steadily increasing. It is therefore of interest whether the hormonal changes in the menopausal transition affects the epilepsy. The perimenopause is associated with hormonal fluctuations and may worsen the epilepsy in women with catamenial epilepsy. It has been suggested that seizures may improve after menopause, particularly in the women with catamenial epilepsy. There is still however, limited data on the effects of menopause on the epilepsy. Prospective studies imply a long time span, and research in this field is scarce. More research on the relationship between hormonal fluctuations and seizures may enable us to predict the effect on the epilepsy. Special awareness should be given to a woman with epilepsy in the menopausal transition.
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Comment by epilepsy67 — December 31, 2022 @ 12:28 PM
The response I made about women having this particular type of Epilepsy came about when it was asked in a group post.
I give this link to a lot of the groups dealing with Epilepsy, and someone was asking of the effects of perimenopause and seizure activity, and my research to prior post came from Science Direct’s research on this previous post.
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Comment by epilepsy67 — December 31, 2022 @ 12:35 PM
epilepsy67, thanks for the terrific input.
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Comment by Phylis Feiner Johnson — December 31, 2022 @ 12:38 PM