Epilepsy Talk

Hormone Imbalances and Seizures in Women | August 11, 2013

Many women with epilepsy have asked their doctors about the connection between seizures and hormones, but not every woman has seen her concerns given the attention she’d hoped for.

Although it is not very well understood at this point, there are scientifically documented connections between seizures and hormones that not all physicians are educated about.

What are hormones?

Hormones are chemical substances formed in organs and glands that travel through your body and through your bloodstream.

They control muscle growth, heart rate, hunger, the menstrual cycle and many other functions.

They generally don’t cause seizures, but can influence their occurrence.

Some women with epilepsy experience changes in their seizure patterns when their hormones are fluctuating.

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

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.

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. 

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

And even though not all seizures are caused by hormones, they still can influence their frequency.

Is there a connection between seizures and hormones?

Yes.

Hormones are crucial systemic players and act at different sites of the entire body, including the brain.

The brain is not only the target of hormone action, but also serves as the “conductor” of the “neuro-endocrine symphony”.

Changes in neuronal activity, such as seizures in people with epilepsy, may affect hormonal regulation and secretion.

In turn, hormones modify susceptibility to develop seizures.

Also, antiepileptic drugs and hormones can have a direct interaction. Hormones may alter seizure threshold, change the frequency and severity of seizures.

Are all seizures caused by hormone changes?

No.

Hormones generally do not cause seizures but can influence their occurrence.

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.

This condition is called “catamenial epilepsy.”

What do the sex hormones do?

Sex hormones have several functions…

Primarily, they control and maintain our reproductive systems.

They also have an influence on muscle mass, bone strength, emotions, and behavior.

In fact, sex hormones begin to influence brain function before birth, as early as a month or two after conception!

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 coming from the temporal lobe often have more reproductive disorders.

They may include: polycystic ovaries, early menopause and irregular (or no) ovulation.

How do I find out if I have hormonerelated problems?

Women 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).

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.

Additional tests, such as a pelvic ultrasound, may also be recommended to rule out other causes for menstrual irregularities.

Some suggestions:

1. Request a referral to a specialist. Some family doctors aren’t educated about the link between hormonal imbalances and seizures.

A specialist will be better equipped to handle your concerns.

2. Track your seizure patterns.

Many patients suspect a hormonal link to their seizures, but haven’t tracked the occurrences of those seizures.

Keep a monthly log and track the date, time, length and frequency of your seizures.

3. Consider any recent hormonal changes. Before visiting a specialist, look for any hormonal patterns on your seizure log.

This may include increased seizure frequency before your menstrual cycle or with the onset of menopause.

4. Pay attention to times of stress. Experiencing stress can trigger hormonal imbalances in your body.

Chart times of stress and their effect on your seizures.

5. Explore treatment options. Although experimental, there are options for treating seizures caused by hormonal imbalances.

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.

Awareness of how hormones can relieve or exacerbate seizure frequency and severity, as well as of how seizures and epilepsy may significantly affect reproductive and sexual function by interacting with hormone secretion and metabolism is key.

And identifying hormonal influences on seizure patterns may lead to a better understanding of treatment options for seizure control, which is important for optimal seizure management throughout a woman’s life.

To subscribe to Epilepsytalk.com and get the latest articles by email, simply go to the bottom box of the right column and click on “Sign me up!”

Other articles of interest:

Catamenial Epilepsy – Do You Have It?

https://epilepsytalk.com/2011/08/07/catamenial-epilepsy-%e2%80%93-do-you-have-it/

Your Thyroid…What Everyone with Epilepsy Should Know

https://epilepsytalk.com/2011/06/01/what-everyone-with-epilepsy-should-know-about-their-thyroid%e2%80%a6/

Epilepsy Differences Between Men and Women?

https://epilepsytalk.com/2011/04/08/are-theyre-epilepsy-differences-between-men-and-women/

Resources:

http://www.ehow.com/how_4674396_hormone-imbalance-causing-seizures.html

http://www.epilepsy.com/pdfs/Except_parents_art12.pdf http://old.epilepsyfoundation.org/living/women/wei/hormonesmenopause.cfm#.UV8L_L7D8Wo

http://www.epilepsyfoundation.org/livingwithepilepsy/gendertopics/womenshealthtopics/hormones-and-epilepsy.cfm

http://www.epi.ch/_files/Artikel_Epileptologie/Katan_1_11.pdf http://www.empowher.com/epilepsy/content/epilepsy-and-hormones-there-connection?page=0,1



110 Comments »

  1. This confirms what I’ve discovered. And, it’s interesting. I had brain surgery for an arterial venous malformation in my left temporal lobe about six or eight years ago. As a result, I have epilepsy.
    I was having break-through seizure activity: the activity manifested itself in what I, not-quite jokingly, called, “fear-rgasms.” I would, for seemingly no reason, have a huge rush of fear from my knees through the top of my head. Goosebumps would rise on my arms, my eyes would widen and I would have a hot flash of intense fear. I would back into a corner in horror. It was a terrible feeling.
    My neurologist changed some of my seizure medication because it was seizure activity.
    My husband was the one who realized it was cyclical, at the beginnings of months. What was somewhat surprising was that I had had a complete hysterectomy almost twenty years ago.

    Like

    Comment by Wilma Cogliantry — August 11, 2013 @ 4:14 PM

    • I had an AVM successfully removed 30 years ago. I’m wondering if you’d like to share experiences.please contact me.

      Like

      Comment by Lauren — February 23, 2017 @ 2:51 AM

      • Lauren, thanks for your offer to help. I hope Wilma sees this. (If she’s following the thread, she should get a notification.)

        Like

        Comment by Phylis Feiner Johnson — February 23, 2017 @ 9:19 AM

  2. Do you see an endocrinologist? Are you on any hormone replacement therapy?

    As you’ve figured out, a hysterectomy doesn’t banish those little critters. But an endocrinologist might be just up your ally.

    Perhaps she/he (I’d recommend a woman) can help stabilize your hormonal levels and thus control your seizures better.

    (Bring a full history with you, so the doc has some idea of what you’ve been through and what you’re experiencing now.)

    Also, it might help to read:

    Catamenial Epilepsy – Do You Have It?

    https://epilepsytalk.com/2011/08/07/catamenial-epilepsy-%e2%80%93-do-you-have-it/

    I hope this helps.

    Like

    Comment by Phylis Feiner Johnson — August 11, 2013 @ 5:44 PM

  3. How interesting! I have a Mirena Coil which releases progestogen to bump my progesterone levels; I had no idea that it could also be helping with the number and severity of my seizures!

    Like

    Comment by Missus Tribble — August 12, 2013 @ 5:48 AM

  4. It sounds like a blessing in disguise. 🙂

    Spread the word!

    Like

    Comment by Phylis Feiner Johnson — August 12, 2013 @ 10:25 AM

  5. Great data as we have noticed similar pattern in our daughter. Appointments with Endocraniologist is very difficult. Are there any treatments for this hormonal balance ?? Any natural food additions /omissions can help?

    Like

    Comment by Samir and Shefali Gandhi — August 12, 2013 @ 10:34 AM

  6. Hormone replacement is one option.

    Here are some other tips from Dr Christiane Northrup, a very famous women’s doctor:

    “Here are my suggestions for keeping your blood sugar, eicosanoids and hormones in balance.

    Eat at least three meals per day.

    When you eat breakfast, your metabolism gets jump-started for the day. If you skip it, your metabolism will slow down into conservation mode.

    Cut down on refined and high-glycemic index carbohydrates.

    Even if you have eliminated refined grains, if you are a carbohydrate-sensitive person you may still have problems with whole wheat, whole rye, whole oat, or millet flour.

    Eat a wide variety of fresh vegetables and fruit daily.

    You want to shoot for five servings per day. And remember, a serving is small, approximately four ounces, or a half-cup.

    Think color and you’ll be on the right path, because the deep pigments in these foods contain powerful antioxidants.

    Go for broccoli, green leafy vegetables, berries, red, yellow and green peppers, and tomatoes, and vary your choices through the seasons.

    Eat healthy fats each day.

    The low-fat diet fads of the past, which reached their peak in the 1980s and early 1990s, had women brainwashed into believing that fat was the enemy.

    In their attempt to eliminate saturated fat from their diets, many women eliminated all fat.

    I watched my patients complain of sallow skin, brittle hair and nails, susceptibility to infection, inability to concentrate, and weight gain despite their rigid diets.

    None of these women were getting enough healthy fat.

    Essential fatty acids, namely omega–3 and omega–6 fats, are needed to assist the body in many important functions, including those of the brain and nervous system.

    Good sources of EFAs include eggs, high-quality flax seeds, soybeans, walnuts, and cold water fish harvested from the wild.

    Again, the best way to obtain nutrients is in your food, but if your diet is lacking, high-quality EFA supplements are widely available.

    Eat protein at each meal.

    Eggs, fish, whey, dairy, or non-animal sources of protein, such as whole soybeans, tempeh or spirulina are all good choices.

    Beans contain protein, but also contain a considerable amount of carbohydrates.

    If you are a true carbohydrate addict and you are perimenopausal, beans may be too high in carbohydrates for you.

    Protect your body with antioxidants.

    Antioxidants are found in fresh fruits and vegetables, especially brightly colored ones

    Food is the best source for antioxidants, but if you don’t always get enough in your diet, high-quality supplements can provide significant protection.”

    http://foodmatters.tv/articles-1/the-hormone-balancing-food-plan-for-women

    Like

    Comment by Phylis Feiner Johnson — August 12, 2013 @ 12:29 PM

  7. My sister has migraines, not seizures, that occur around her menses. I told her of the possible hormone connection. She mentioned it to her doctor and her neurologist and they collectively did nothing. The neurologist just blew it off and offered her neurontin. Finally, she saw new gyno for a normal yearly visit and just happened to mention the migraine headaches. The gyno asked if she’d like to start taking birth control again since she felt this was hormone related and that doing so would likely ease her monthly migraine pain. She is also having her taper off some other prescription meds that were making her feel fatigued and not helping her headaches.

    I guess she is one of the lucky one who found a doc that actually may help (she is just starting this process, so we’ll have to wait and see if the hormones ease her headaches or not). Of course, it is frustrating that it took an interested gyno to suggest this while the neurologist knew nothing.. something that people with seizures probably know all too well.

    Like

    Comment by Doug — August 15, 2013 @ 7:16 PM

  8. Well, I hate to sound sexist, but that’s why I prefer female gynos and endocrinologists.

    Crazy as it sounds, many male neuros don’t even KNOW what Catamenial Epilepsy is!!!

    It’s sort of like you can’t talk the talk, until you’ve walked the walk…

    Like

    Comment by Phylis Feiner Johnson — August 15, 2013 @ 7:56 PM

    • Actually, her neurologist was female too, but still blew off the idea that hormones might help her headaches..

      Like

      Comment by Doug — August 16, 2013 @ 12:16 AM

  9. Oh well. So much for my female chauvinism! 🙂

    Like

    Comment by Phylis Feiner Johnson — August 16, 2013 @ 9:12 AM

  10. update on my sister. Shes been taking the pill now as mentioned in my earlier post. But, unfortunately she is still having her migraines. I’ve heard that perhaps a bio-identical hormone cream might be better than just a birth control pill, which I’ve heard can exacerbate migraines and seizures in some women. Anyone heard if this is true? Is one version better than another?

    Like

    Comment by Doug — August 23, 2013 @ 12:30 PM

  11. “You may find that adding natural hormone supplementation at the right time of the month, specifically bioidentical progesterone, provides a great deal of relief. Most of our patients find that proper use of a low-dose bioidentical progesterone cream — in combination with the proceeding measures — gets rid of their hormonal headaches entirely. But for natural progesterone to be effective in this area, you need to know when to use it. Here are some guidelines based on the timing of your hormonal headaches…”

    http://www.womentowomen.com/womenshealth/menstrualmigraines.aspx

    In some women, birth control pills improve migraine. The pills may help reduce the number of attacks and their attacks may become less severe. But in other women, the pills may worsen their migraines. In still other women, taking birth control pills has no effect on their migraines.

    The reason for these different responses is not well understood. For women whose migraines get worse when they take birth control pills, their attacks seem to occur during the last week of the cycle. This is because the last seven pills in most monthly pill packs don’t have hormones; they are there to keep you in the habit of taking your birth control daily. Without the hormones, your body’s estrogen levels drop sharply. This may trigger migraine in some women.

    Talk with your doctor if you think birth control pills are making your migraines worse. Switching to a pill pack in which all the pills for the entire month contain hormones and using that for three months in a row can improve headaches.”

    http://www.womenshealth.gov/publications/our-publications/fact-sheet/migraine.cfm#l

    Like

    Comment by Phylis Feiner Johnson — August 23, 2013 @ 1:16 PM

  12. My sisters migraines were better for a week, then seemed to get worse. Could her body have to much estrogen and maybe she felt better for a week because it was “ramping up” so to speak? Then it finally got too high causing more migraines.

    I ask because it doesnt’ seem like she was taking it long enough to get to the last pills with no hormone. I wonder if she was too low before and her hormones spiked around her menses, then she added hormones and she hit her good range, and then by continuing them she got too high (similar to what might happen around her menses) causing more headaches.

    I’m just guessing, but she is stopping the birth control pills. She’s having so many migraines its difficult for her to do her job right now.

    Like

    Comment by Doug — August 28, 2013 @ 12:44 AM

    • There are two issues at play here.

      One is the very close relationship between epilepsy and migraines.

      Epilepsy & Migraines — Kissing Cousins

      https://epilepsytalk.com/2010/09/12/epilepsy-migraines-kissing-cousins/

      And the other is that there’s a form of epilepsy called “catamenial epilepsy,” or hormone sensitive seizures.

      It’s 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.

      One of the main theories 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.

      Catamenial Epilepsy – Do You Have It?

      https://epilepsytalk.com/2011/08/07/catamenial-epilepsy-%E2%80%93-do-you-have-it/

      Like

      Comment by Phylis Feiner Johnson — August 29, 2013 @ 5:24 PM

  13. Sounds like it might be beneficial for a woman to get a hormone panel showing what their estrogen/progesterone ratio is when they are having migraines or seizures and when they are not having any problems. Then hormone therapy could be more focused so you enhance the right one and don’t let levels get either too high or too low.

    Like

    Comment by Doug — August 30, 2013 @ 2:35 AM

  14. Excellent. One word of advice: Make sure she goes to an Endocrinologist, so she gets FULL testing.

    Often, internists only order the basic Th tests.

    An Endocrinologist will order the whole board, plus anything else she or he thinks your sister may need.

    Like

    Comment by Phylis Feiner Johnson — August 30, 2013 @ 1:06 PM

    • right now i am on a low dose birth control for abnormal menstrual cycles and cysts on my ovaries, saw an ob gyn for it, she is going to keep me on it as directed by my primary care doctor, both female providers, they are going to contact each other and keep things updated. and as soon as i can schedule an appt with my new neurologist as soon as possible, and let him know what is going on.

      Like

      Comment by Crystal Cahill — February 7, 2014 @ 1:22 PM

  15. I don’t mean to stir the pot and confuse the issues, but could you have Catamenial Epilepsy?

    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?

    More info at:

    https://epilepsytalk.com/2011/08/07/catamenial-epilepsy-%E2%80%93-do-you-have-it/

    Like

    Comment by Phylis Feiner Johnson — February 7, 2014 @ 3:19 PM

    • that is what my last neurologist had warned me about, that probably explained the staring spell, i am doing a lot better with the combination of the OPCs and the increased dose keppra

      Like

      Comment by Crystal Cahill — February 7, 2014 @ 10:11 PM

  16. i am going to see my ob gyn next week, and hopefully soon i will be getting a new neurologist.

    Like

    Comment by Crystal Cahill — February 24, 2014 @ 8:24 PM

  17. went to my ob gyn today, she did a pap smear and pelvic exam, and she is going to keep my on the OPCs for a while. now i have to call my primary care doctor’s office and leave a message for the referral nurse and see what the hold up with the neurologist referral.

    Like

    Comment by Crystal Cahill — March 3, 2014 @ 8:12 PM

  18. Keep at it or maybe have the GYN request the referral. She’ll certainly get a faster response, if she’s willing to do it.

    (She’s higher up on the food chain!)

    Like

    Comment by Phylis Feiner Johnson — March 4, 2014 @ 12:49 PM

  19. YAY! Go armed with questions if you need to know something specific — and write it down.

    Also, see if she has more than one suggestion.

    (My doc gave me three cardiologist names when I needed one. Then, I asked which one he’d recommend.)

    Like

    Comment by Phylis Feiner Johnson — March 5, 2014 @ 9:47 AM

    • that is an excellent idea, and will do. i will keep you updated.

      Like

      Comment by Crystal Cahill — March 5, 2014 @ 7:30 PM

      • i called the referral nurse at my primary care doctor’s office to see what the hold up is and left a message hopefully she’ll get back to me. my primary care doctor and my gyn are at two different clinics.

        Like

        Comment by Crystal Cahill — March 10, 2014 @ 8:24 PM

  20. Have the GYN call your primary care doc. She’ll get more traction that way!

    Like

    Comment by Phylis Feiner Johnson — March 10, 2014 @ 10:51 PM

    • went to see my ob gyn today, all the result from the pap smear came back normal don’t need to come back for another year.

      Like

      Comment by Crystal Cahill — March 17, 2014 @ 9:02 PM

      • YAY! Could you get her to put some pressure on your doc to get a referral? Or might she have a referral?

        Does it matter that she and your primary doc are in different clinics?

        That doesn’t doesn’t necessarily mean her referral would be in another clinic.

        Like

        Comment by Phylis Feiner Johnson — March 17, 2014 @ 11:03 PM

  21. i get home early tomorrow so i am leave a message personally with my primary care doctor.

    Like

    Comment by Crystal Cahill — March 18, 2014 @ 8:36 PM

  22. Let me know what happens…

    Like

    Comment by Phylis Feiner Johnson — March 19, 2014 @ 11:07 AM

    • good news my referral went through and got a call today from a neurologist, only just got the message though because i was out of town today, i will schedule an appt asap.

      Like

      Comment by Crystal Cahill — March 27, 2014 @ 11:52 PM

  23. YAY! Keep me posted. (I’m on vacation, so my replies may be a little less prompt!)

    Like

    Comment by Phylis Feiner Johnson — March 28, 2014 @ 11:31 AM

  24. Two days of sunshine, now three days of rain is forecast.

    Oh well, we didn’t come here for the scenery. Just the rest and relaxation.

    When’s your appointment?

    Like

    Comment by Phylis Feiner Johnson — March 29, 2014 @ 10:03 AM

  25. Well, that sure is a long way from now…but at least you finally got an appointment. Let me know how it goes…

    Like

    Comment by Phylis Feiner Johnson — April 1, 2014 @ 3:35 PM

    • i will, i should sign a release of records so that my current neurologist can take a look at my file from my last neurologist. they’ll do that anyways.
      that reminds i need to tell alta regional that i switched neurologists.

      Like

      Comment by Crystal Cahill — April 1, 2014 @ 5:37 PM

  26. Also, bring your daily epilepsy dairy. And here are some hints…

    Secrets to Better Care from Your Doctor

    https://epilepsytalk.com/2010/06/13/secrets-to-better-care-from-your-doctor/

    Like

    Comment by Phylis Feiner Johnson — April 1, 2014 @ 5:50 PM

    • i haven’t really kept one but i am going to start, and i admit it, sometimes i am a procrastinator.

      Like

      Comment by Crystal Cahill — April 3, 2014 @ 6:47 PM

  27. Naughty you! 🙂

    If you don’t do it for yourself, at least do it for your new doc so he/she can get a better idea of what’s going on with you.

    Records only say so much.

    P.S. It’s freezing and and I’m wearing two layers of Polartec. But we didn’t come for the scenery, just a change of scenery and a break. (I’m only working 3 hours a day, instead of ten!)

    Like

    Comment by Phylis Feiner Johnson — April 3, 2014 @ 7:01 PM

    • started doing that today, i have not had any staring spells since june or july. stay warm, enjoy the rest of you vacation.

      Like

      Comment by Crystal Cahill — April 3, 2014 @ 7:28 PM

  28. Fingers crossed! 🙂

    Like

    Comment by Phylis Feiner Johnson — April 4, 2014 @ 10:02 AM

  29. went to my new neurologist today, and turns out i do have epilepsy, and going to be on keppra for the rest of my life, same dosage as before 1250 mg a day, and yes seizure disorders can run in families, my younest brother and two cousins all had seizures. as long as i take care of myself and make sure that i get blood work, don’t like needles but i can tolerate them now, on a regular basis, i should be okay, and i have a follow up in 6 months.

    Like

    Comment by Crystal Cahill — April 30, 2014 @ 7:34 PM

  30. My guess is that you have “Catamenial Epilepsy.”

    One of the main theories 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.

    As far as the Keppra goes, people can have volitale reactions, some good, many bad, from Keppra. So pay close attention to your moods and emotions and record anything unusual ASAP, just so you don’t have to suffer depression, etc.

    OK?

    P.S. The blood work is to make sure the right therapeutic amount of the med is in your bloodstream. When I had my blood work, they discovered my med levels were down 50%

    Thank goodness you got a new neuro!!!

    Like

    Comment by Phylis Feiner Johnson — May 1, 2014 @ 9:41 AM

    • that is why i see my primary care doctor and ob gyn at least once a year, and my neurologist twice a year. and like i said i have been on keppra for about three years, and very little side-effects.

      Like

      Comment by Crystal Cahill — May 1, 2014 @ 8:16 PM

      • i am also doing well on the OPCs, sprintec, on this particular OPCs will not interact with the keppra.

        Like

        Comment by Crystal Cahill — May 1, 2014 @ 8:21 PM

  31. more like epilepsy since birth, prolonged birth with michodium(sp) staining, i was delayed in certain area, was in special education, but i did graduate from high school with a diploma with modifications with IEP, now working toward my associates degree with very little accommodation, after a few semesters of not going.

    Like

    Comment by Crystal Cahill — May 1, 2014 @ 8:27 PM

  32. Wow, Crystal. You continue to amaze me every day!

    Like

    Comment by Phylis Feiner Johnson — May 2, 2014 @ 10:32 AM

    • i try to be a little more independent at school because otherwise how will i learn without asking questions for myself? now if i can figure out my math homework i’ll be set. as for after graduation hopefully work as a special education art teacher.

      Like

      Comment by Crystal Cahill — May 2, 2014 @ 11:18 AM

      • and of course i amaze myself everyday after i learn something new whether it’s from school or from volunteering.

        Like

        Comment by Crystal Cahill — May 2, 2014 @ 11:21 AM

  33. You should be proud — not amazed — because deep down inside, you know you can do it. You just have to have a little faith in yourself.

    As for math (and spelling), at 61, I’m still hopeless at both! 😦

    Like

    Comment by Phylis Feiner Johnson — May 2, 2014 @ 12:04 PM

    • don’t feel bad, it took me an hour and a half to figure out a solution to an equation. my mom said she would have given up. going to take a break in a minute so that my brain can focus on a class on systemic organizing, a process that we use in the organization that i am volunteering for, that i am going to be teaching to another volunteer, like i said it’s a teaching organization.

      Like

      Comment by Crystal Cahill — May 2, 2014 @ 2:03 PM

  34. While you’re at it, you can explain the “systemic organizing” concept to ME. I have no indea what you’re talking about.

    But at least, you’re focused!

    Like

    Comment by Phylis Feiner Johnson — May 2, 2014 @ 3:10 PM

    • think of it as like a protest, what tool do you need? what a protest or an organization has to get started people, transportation, and a way to get the tools the you need to make signs. that is more or less an overview. i am still learning the volunteer system of WFWA, western farm workers association.

      Like

      Comment by Crystal Cahill — May 2, 2014 @ 3:33 PM

  35. Well Crystal, if nothing else, it sounds impressive!

    Like

    Comment by Phylis Feiner Johnson — May 2, 2014 @ 4:03 PM

  36. Ok as everyone is reporting, this cataminial epilepsy is real for me, i have been having seizures every 3 to 3 1/2 weeks, cycle? yes… sooo i am being weaned off estrogen, been taking it forever anyway, i am 62, yes 62, and been on estrogen since 34 years of age. was seizure free for many years until about the last 5 years, and this last year really hitting me more and more, as i said every 3 weeks or so. hummm about the time of the cycle for me, makes since. So i went to the Doctor told to ween off estrogen, from 75 mg to now 0.5 mg, for only about a month then cut off cold turkey, so i am now doing just that, has not been quit 3 weeks yet, fingers crossed to see what happens. Will i have a seizure again? they were hitting and lasting about 2 to 3 days. obviously a trigger to set them off, so now i am estrogen free, next step is to cut back on the Vimpat, of 200 mg 2 x daily. all the doctors kept doing was raising my meds, don’t think i need 200 mg 2 x daily. I am disappointed that not all neurologist know about this, it was my son who actually put 2 and 2 together. “smart man”. i am confused though, the nero said first to ween off estrogen, and stop vimpat, cold turkey? i don’t think this sounds like a good idea. would you not ween off vimpat too??? then he said ok 100 mg 2 x daily, i am still not sure a good idea, so i decided to ween off estrogen first, and after about a week or so off that then start to lower the vimpat, maybe to 150 mg 2 x daily? any thought from anyone??? this nero seems to be to up and down for me. it is the first time i had seen him, i like him personally, but as a doctor, he really did not listen to me. starting changing my meds before i could even explain what i thought about the estrogen. disappointed in him. and since he was so wishie washie, i have no option but to do what i think best. anyone please with this experience, tell me what i should do, ween off both, one at a time, all together, stop the vimpat? wahatttttt?????

    Like

    Comment by Judy — March 6, 2015 @ 6:15 PM

  37. Judy, the doc sounds inconsistent at best. But please don’t play doctor yourself.

    I would suggest a second opinion, at least. And perhaps you might want to change doctors. (Don’t forget to bring your records with you.)

    Below is a compilation by website forum members who have had positive personal experiences with docs over the years.

    2015 Comprehensive List of GOOD Neurologists…Epileptologists… Neurosurgeons…and Pediatric Doctors

    https://epilepsytalk.com/2015/02/11/2015-comprehensive-list-of-good-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors/

    I hope this helps. Let me know how things turn out, please.

    And good luck in finding a real doc who pays attention to you as a patient.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — March 7, 2015 @ 1:44 PM

    • Thank you for your response. I was happy to see that at least someone will listen to me. I am going to rethink the doctor situation. I appreciate your help in finding one. I at this time, have lowered my estrogen from .75 to 0.5 and as of a week ago, am no longer on estrogen, to my surprise, i am feel so much better, very little hot flashes, so that’s cool. and also now my vimpat for the epilepsy, i am doing the 100 mg 2 x daily, instead of the 200 mg, and wow amazing, the last 5 days or so, i feel wonderful. i feel as though i had been in tunnel vision for years now, and now wammmm my head feels clear,i feel i see everything so much clearer, “hard to explain”, but just no more tunnel vision, just clearer, more happy, more energetic, feeling really great, so excited to see each day how i am coming back to being me. been lost for a long time now. also fingers crossed, around that usual 3 1/2 week mark, fingers crossed i will have no seizures???? i am doing a combination of what my primary doctor said which was to lower the estrogen and then get off it. the other doctor the nero, well as confusing he was, he did say to go to the 100 mg, and i did a lot of research on line from others on what their doctors had them do, do i went ahead and did lower the vimpat. I am though as you said going to change from him, he as i said just does not listen. well again thank you for listening and sharing advise, nice to know something like this exist. fingers crossed XXXX that maybe in time, i can stop vimpat all together. yaaaaaaa

      Like

      Comment by ilovejudysreef — March 11, 2015 @ 1:26 PM

  38. YEEE HAAA! Judy you’re on your way. Fingers, toes and eyes are crossed.

    Keep me posted…please!

    Like

    Comment by Phylis Feiner Johnson — March 11, 2015 @ 6:11 PM

  39. My daughter is 21 years old with autism. She has been having seizures and they are around the same time of the month . Her menstrual period has always been off but she has not bleed now for at least 5 years . I was wondering if her estrogen could be high during this time . We have had a gynecology appt. but it keeps getting rescheduled , I have just checked with a new group. And have a call into her natural path doctor for a saliva test for the estrogen – progestrone test . Could not bleeding cause a high estrogen level ? Thank you so much for this site I am so glad I found it . Ruthie

    Like

    Comment by Ruthie — May 28, 2015 @ 11:55 AM

  40. I think you’re talking about Catamenial Epilepsy. It happens just around or during menstruation.

    In hormone sensitive seizures, a tendency for increased seizures are 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.

    Take a look at this article, it may help:

    Catamenial Epilepsy – Do You Have It?

    https://epilepsytalk.com/2011/08/07/catamenial-epilepsy-%E2%80%93-do-you-have-it/

    Like

    Comment by Phylis Feiner Johnson — May 28, 2015 @ 1:15 PM

  41. Hi Phylis – Do you have any resources for Neuroendocrinologists? I literally found just one on Google. I called the office asking for a referral in my area (he’s in NY – I’m in WI) and they said he is the only NeuroEndo aside from one in Boston. Thoughts?

    Liked by 1 person

    Comment by Amber Gardiner — June 5, 2015 @ 3:10 PM

  42. I have a question…questions….I am a trans guy…. Yes born a girl … I have partial ep. Not conformed yet but deff heading to that direction…. if I were to to male hormones would that be a bad affect or an okay effect?? Also I heard getting a hysterectomy is a positive thing..please please I need info. And hoping its positive thing not bad. I am getting a infection taken out on Feb 4 in my mouth its some type of syst. I’m nervous and wondering if taking there numbing IV is OK as well?? it seems to me that when I take odd medicanes it effects and triggers these weird episodes. Please help! Thank you.

    Like

    Comment by Samson Davis — January 14, 2016 @ 4:15 AM

  43. Hi Samson,

    I think an endocrinologist should be your first stop in determining hormones. If you don’t have one, I’d ask my Primary Care Physician.

    As for anesthesia, it’s imperative that you tell your doc IN ADVANCE what kinds of meds you’re on and any medical conditions.

    Good luck.

    Like

    Comment by Phylis Feiner Johnson — January 14, 2016 @ 10:24 AM

  44. i tried to keep record of my monthly , but , it would change month by month even trying to ask , the pedi dr , back in the 60’s , when your 9-10 , & the meds they gave out , the answer was a must defiantly no.. when i got married , had my boys , my seizure pattern changed , then after , my last son was born , my seizures came more , plus had tubes tied ,then find out had cancer .. had hysterectomy , seizures stopped for while , then went to one dr , wanted to change the meds , because the meds i were on , was older , so far , 15 yrs later nothing , no seizures , & good diet …diet is the most important thing ..

    Like

    Comment by Cathy Flowers — February 8, 2016 @ 5:09 PM

  45. Also Kathy, have you read:

    The Scandal of Aspartame

    https://epilepsytalk.com/2009/11/26/the-scandal-of-aspartame/

    I think you’d enjoy it!

    Like

    Comment by Phylis Feiner Johnson — February 8, 2016 @ 7:00 PM

  46. two weeks before I have my period, I will have seizures until I,m on it. Is this from hormones?

    Like

    Comment by michele metzger — February 25, 2016 @ 6:53 PM

  47. 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.

    Like

    Comment by Phylis Feiner Johnson — February 26, 2016 @ 12:30 AM

    • you answer my question, from yesterday. about periods and seizuers

      Like

      Comment by michele metzger — February 26, 2016 @ 10:56 AM

    • I’m a transgender female to male just got on T and have weird epilepsy you said it could b a Hormonal seizures so is me taking T a bad thing or good thing will it make it worse or better ? The drs here are kind of really dumb

      Like

      Comment by Sam — March 1, 2016 @ 4:43 AM

  48. 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.

    Like

    Comment by Phylis Feiner Johnson — March 1, 2016 @ 10:51 AM

  49. Hello gang…I received my seizures from the
    Levonorgestrel Hormone all because I get migraines!…why no one (including my doctor who inserted the hormone) told me 😕 Now my life is basically OVER!! ☹️

    Like

    Comment by LaChic Buchanan — May 1, 2016 @ 9:24 PM

  50. LaChic, Research shows that Depacon (Valproate) and Topamax (Topiramate) are effective in treating migraines and epilepsy.

    And each has FDA approval for treating them together. Depakote (Divalproex Sodium) also works for both, creating a therapeutic “two-fer.”

    There are also several other anti-epileptic drugs that have also been shown to lessen migraine headaches – such as Neurontin (Gabapentin), Keppra ( Levetiracetam) and Zonegran (Zonisamide).

    However, the dose of AEDs in the treatment of migraines is usually lower than that used for epilepsy.

    I hope this helps.

    Like

    Comment by Phylis Feiner Johnson — May 2, 2016 @ 9:41 AM

  51. I just started experiencing these mini’s around 40 and I’m 43 now…
    I been logging them for awhile cause it seemed to have an obvious connection …
    I had a full for the first time a couple years ago and it was right next to my cycle then I went awhile without a major but mini’s inbetween every month only around cycle …
    They put me on Keppra it’s not workin now there trying me on progesterone dosing …. But I feel I need to take other the time cause my cycle is off ….

    I will travel to a awesome Dr who specializes in this if anyone knows great ones ….

    Like

    Comment by Janette — July 24, 2016 @ 4:47 PM

  52. Janette, what I think you’re experiencing is Catamenial Epilepsy.

    Read this and see if it sounds familiar:

    Catamenial Epilepsy – Do You Have It?

    https://epilepsytalk.com/2011/08/07/catamenial-epilepsy-%E2%80%93-do-you-have-it/

    Like

    Comment by Phylis Feiner Johnson — July 24, 2016 @ 5:57 PM

  53. Hi, I have had epilepsy for most of my life – since about 6.Im now 38. I have had all sorts of medication and also had 2 children, which when pregnant i stopped all medication (probably wasn’t wise but felt right at the time) since my last child 14 years ago – i have only been back on medication twice. I had to have ovarian surgery about 10 years ago to remove a tumor, and the doctor at the hospital asked my if i was going to have any more children – i said no. Im in a same sex relationship and 2 was enough! he advised i have the depo prevera shot to stop periods all together which could help with the epilepsy because mine seemed to be more hormonal than anything else. This has worked fine for the last 9 years or so. only a few seizures – nothing like before. However this time when going for my depo jab the nurse was a little unsure whether to give it to me and asked me to see the doctor because of the bone density issue. The doctor (a locum) told me she hadnt heard of giving the depo ever as a treatment for Epilepsy and wouldn’t give me it and has referred me to a neurologist. whilst waiting for the appointment – i have had 3 gran mal and numerous petite mal. My question is – have you ever heard of people being given the depo or any other form of contraception medication to help control hormone levels? To me it makes complete sense but the doctor had never heard of it.

    Like

    Comment by marie — August 8, 2016 @ 2:34 AM

  54. “Because of the interaction between antiepileptics and oral contraceptive pills, Depo-Provera may also be considered in women with epilepsy.”

    http://www.aafp.org/afp/2010/0915/p621.html

    Enzyme-inducing AEDs may affect methods of contraception that contain hormones, such as the Pill or contraceptive implants. This is because they increase the level of enzymes that break down hormones in the body. This means the hormones in contraceptives are broken down more quickly than usual, so they stay in the body for less time and are less effective in preventing pregnancy.

    https://www.epilepsysociety.org.uk/contraception-and-epilepsy#.V6iDWrgrLAs

    I’m sorry, after an hour of research, that’s the best I could find.

    Like

    Comment by Phylis Feiner Johnson — August 8, 2016 @ 9:07 AM

  55. I have been searching too and can only find it in conjunction with using depo as a contraception. I dont know. Thanks for looking for me though. I suppose i need to look on the bright side.. I will have an actual excuse to eat chocolate once a month 🙂

    Like

    Comment by marie — August 8, 2016 @ 1:59 PM

  56. Found this on that page you linked. ‘Depo-Provera is effective in women taking enzyme-inducing antiepileptics, although there are some recommendations that the injection frequency be increased to every 10 weeks.10,11 Additionally, progestins may decrease seizure frequency.’

    that makes me feel better 🙂

    Thanks so much

    Like

    Comment by marie — August 8, 2016 @ 2:10 PM

  57. Marie, I wish I could help you more!

    Like

    Comment by Phylis Feiner Johnson — August 8, 2016 @ 2:18 PM

    • You have – thank you so much. So glad i found this website.

      Like

      Comment by marie — August 9, 2016 @ 1:46 AM

  58. Welcome to our family, Marie!

    Like

    Comment by Phylis Feiner Johnson — August 9, 2016 @ 9:38 AM

  59. Hello, my name is Erica and I have been experiencing catamenial seizures since late last year. I get them either before or after my menstrual cycle. Sometimes I can’t even get up the next day. I completely space out then I feel down after. I do take Keppra and vimpat. I do see a specialist in a month and I hope there are good choices recommended.

    Like

    Comment by Erica — September 18, 2016 @ 10:54 PM

  60. Hi Erica,

    You might find this article interesting:

    Catamenial Epilepsy – Do You Have It?

    https://epilepsytalk.com/2011/08/07/catamenial-epilepsy-%E2%80%93-do-you-have-it/

    Good luck at the specialist…

    Like

    Comment by Phylis Feiner Johnson — September 19, 2016 @ 10:31 AM

  61. Would like email on any new information related to epilepsy (specifically hormones and seizures). Thank you.

    Like

    Comment by Karen Kittle — October 7, 2016 @ 9:58 AM

  62. Hello, I am happy to see that this site still seems to be active. I will try to not

    Like

    Comment by Jenn — December 28, 2016 @ 11:14 PM

  63. sorry, posted before I got to even start the story! 🙂
    I am hoping someone has insight for me, because currently my doctors are still scratching their heads. I am a 36 y/o female. For a couple years, I would have a few days every month or 2 of kind of a foggy feeling in my head. I mentioned it to my doc and she suggested possibly a migraine variant and to keep an eye on any pattern. Then 7 months ago I had one of those episodes followed by what seemed like tremors in my body (mostly right arm twitching). There would be a part of shaking, then breathing quickly (I think I was trying to stop the shaking but ended up making things worse) followed by dizziness and feeling like I was going to pass out. This lasted for over an hour, and my husband brought me to the ER because I wasn’t responding. I WAS conscious, I could hear him but felt like I couldn’t speak or move and was only “half there”. They ran tests and nothing was abnormal except elevated TSH (which went back to normal later that week). CT scan was also fine.
    To my surprise this happened again the following month, actually the same date. Same story the following month, so I noticed a pattern — ovulation seemed to be my “bad week”. The episodes would hit every couple days during 1 week a month (normally some mild headache and cloudy feeling, then shaking, dizziness, etc.) My primary doc sent me to a neurologist, who did an MRI & EEG (both normal). Was told it could be anxiety. (I truly did not feel these were panic attacks though.)

    Fast forward another couple months and it’s still happening, actually about 2 weeks of the headache and shaking symptoms, I end up in the ER again because the shaking turned more into convulsions one time. Again I was still conscious but couldn’t seem to control my body. “Non epileptic seizures” was suggested. Had a 3-day video EEG during my “bad week” to try to capture one. I had many, the first of which was triggered in the neuro’s office when they had me purposely hyperventilate. It set off all the symptoms. First the spacey feeling in my head, then then shaking, then the dizziness, and over and over or a good 30 min or so. After I felt dazed and very tired. (Interestingly, when I hyperventilated during the first EEG, I didn’t have this reaction. I believe because it wasn’t during “that” week of the month.)
    Long story short, my video EEG was declared normal despite having several of these episodes over the 72 hours. Told to follow up with my primary.
    Primary saw the hormonal correlation and put me on birth control to try to prevent the hormonal surge around that time of month. It was an estrogen+progesterone pill despite my request for just progesterone (having read up on it myself and also what my OBGYN suggested). She said to try 2-3 months of estrogen +proges and see what happens.
    I had a few good weeks and then symptoms hit, just on a different schedule. Now a couple days after my period or a couple days before. And sometimes a few random days during other weeks. I’ve also had enough side effects from the birth control that this week I told my doc I didn’t want to continue. She agreed to try me on progesterone, which is what I’m about to do.
    Meanwhile I did return to the neuro, on my OBGYN’s suggestion (concerned about the migraines + birth control). He prescribed me zonisamide in an attempt to treat both the headache-type symptoms (which don’t seem to be technically migraines) and the seizure symptoms (which apparently aren’t technically epileptic seizures anyway). LOL. I did just start taking it today because nothing else has helped and this week has been a bad one. But I feel like we are grasping at straws. I really did think catamenial seizures was what I was experiencing, until I was told my EEG showed no abnormal activity. It is all very strange, having never had these symptoms before this year (aside from the headache/mild fog once in a while). I keep mentioning to doctors that I did have Lyme disease about 6 years ago but was treated for it early enough that they say it was successful. Still not sure how long I had it before starting antibiotics, but I believe a few weeks.

    I apologize for this extremely long post. I am grateful for any suggestions, insight, anything at this point.

    Like

    Comment by Jenn — December 28, 2016 @ 11:40 PM

  64. I think you hit the nail on the head when you said “Catamenial Epilepsy”.

    Catamenial Epilepsy – Do You Have It?

    https://epilepsytalk.com/2011/08/07/catamenial-epilepsy-%E2%80%93-do-you-have-it/

    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.

    Also, I think you’re on the right track…

    Progesterone, when taken in capsule form on a cyclic basis, 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.

    And if these are “real” migraines, this article may help:

    Epilepsy & Migraines — Kissing Cousins

    https://epilepsytalk.com/2010/09/12/epilepsy-migraines-kissing-cousins/

    I hope you come to some resolution…soon.

    Like

    Comment by Phylis Feiner Johnson — December 29, 2016 @ 10:58 AM

  65. Yes, I discovered this when I met a Migraine patient who told me she discovered this link with her Doctor. She took Birth Control Pills nonstop to prevent these from happening. I then spoke with my Neurologist and began my own hormone therapy. Guest what? 5 years later of taking non stop low dose birth control pills and I am seizure free from that form of epilepsy I could not treat with Keppra or any of the 10+ drugs I tested for Johns Hopkins over 10 years. I still take my Keppra. But I also take birth control pills. The only side effect that is really important to consider early on is that birth control pills increase your hunger. No they do not make you fat. They make you feel more hungry. So I gained 35 pounds in 4 years taking them. Which I just lost since October 2016 on a major diet. So very important for Neurologists to consider the women who are under control except for those 2-3 days of seizures before her period each month. And please ask the pharmaceutical companies to package these in a 30 day supply vs the 3 weeks of medicine. And please do not put them in those tine boxes. Just put them in a regular pill bottle like the rest of our medication. And please rename them to be “hormone therapy” rather than birth control. Because I for example, have not had intercourse for over 2 years. I am not seeking to prevent pregnancy. I am seeking to prevent seizures! And it is really annoying how in recent times, I would have to pay for 1 pack of birth control pills every 4 months to supplement the week of medication that the insurance did not cover since they deemed 3 weeks a month of medication. And would someone please help educate people who think birth control pills are only for preventing acne to also include this as a major therapy for us! I am sick of people writing about how birth control also does this but does not mention this MAJOR therapy which has helped many of us gain independence for the first time in over a decades of medication and treatment without this knowledge!

    Like

    Comment by Jennifer Coates-Wang — February 18, 2017 @ 11:47 AM

  66. Jennifer, did you have Catamenial Epilepsy?

    Catamenial Epilepsy – Do You Have It?

    https://epilepsytalk.com/2011/08/07/catamenial-epilepsy-%E2%80%93-do-you-have-it/

    Have you controlled all of your seizures?

    Whatever you’re doing, it sounds great.

    HOORAY FOR YOU!!!

    (I think the “hormone therapy” versus “birth control” idea is brilliant.)

    Like

    Comment by Phylis Feiner Johnson — February 18, 2017 @ 12:13 PM

  67. I have been dealing with hypothyroidism for the past 15 to 20 years. Symptoms include excessive weight gain, low energy, nonexistent libido, brittle nails, dry skin, tired all the time, anemia, insomnia, aches and pains, and depression. Instead of being cold, I am always hot. Sometimes I can’t sleep because my feet are so hot so I have to go stand in a snow bank or cold water in the tub. I have tried watching what I eat and do lots of exercise, but really struggle to lose weight. In the past 4 years my TSH has been anywhere between .05 and 14.32. Ferritin runs between 46 and 86. I was desperate for help to help me feel better. i was introduced to Health herbal clinic in Johannesburg who have successful herbal treatment to hypothyroidism . I spoke to few people who used the treatment here in USA and they all gave a positive response, so i immediately purchased the hypothyroidism herbal formula and commenced usage, i used the herbal supplement for only 7 weeks, all symptoms gradually faded away, herbs are truly gift from God. contact this herbal clinic via their email healthherbalclinic @ gmail. com

    Like

    Comment by Bonnie Blum — March 20, 2017 @ 8:34 AM

  68. Thanks for this.

    I’ve known for years there is a link between my epilepsy and my polycystic ovaries but my neurologist and fertility consultant both deny it. So frustrating.

    I believe hormone therapy would help both but nobody will listen to me. We have been trying to conceive for 10 years. I wish I had tracked my cycles with seizures but sadly I did not. I know my last one was on the first day of my period.

    Has anyone found anything that’s worked without being prescribed?

    Like

    Comment by katesds — June 23, 2017 @ 12:22 PM

    • This all I could find, which is of little comfort:

      * Women with epilepsy have higher rates of some conditions that can cause infertility. One of these is polycystic ovarian syndrome (PCOS).

      * Women with epilepsy are more likely to have irregular menstrual cycles, which can make it more difficult to get pregnant.

      * Women with epilepsy are also more likely to have menstrual cycles that do not produce an egg. These are called anovulatory cycles.

      * Women with epilepsy are also more likely to have abnormalities in hormones involved in pregnancy.

      Also, do you know about Catamenial Epilepsy?

      Catamenial Epilepsy – Do You Have It?

      https://epilepsytalk.com/2011/08/07/catamenial-epilepsy-%E2%80%93-do-you-have-it/

      Like

      Comment by Phylis Feiner Johnson — June 23, 2017 @ 1:54 PM

    • I just started seeing an integrative gynecologist, who is really the first doctor with a clue about what I’m dealing with. Two of my neurologists acknowledged there was a link between hormones and both seizures and migraines (not sure if I’m dealing with both or just one) but they weren’t able to do anything about it (just continuing to try other Neuro meds). She is having me do all sorts of hormone testing.
      Often an issue is progesterone to estrogen imbalance and supplementing with bio-identical progesterone helps. She believes this is my issue as as well. This can be purchased as a cream without prescription .I am not sure about your specific situation though, so it is worth looking for a doctor who is more holistic in their approach. Mine is both an MD but uses alternative approaches also.
      If you are on Facebook, check out this group. I have found it very helpful.

      https://www.facebook.com/groups/healingseizuresnaturally/

      I wish you all the best.

      Like

      Comment by Jenn — June 23, 2017 @ 2:11 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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