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  #61  
Old 03-28-2009, 02:01 PM
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I am glad I found this thread.... this, and having the term "catamenial epilepsy" to google, gives me a whole lot more to go on

I starting doing the fdgb thing right around the time I starting becoming perimenopausal.... cycles all messed up and unpredictible, hot flashes, all that fun stuff.

FAR more likely to have problems immediatedly before and during than at any other time of the month.

Now to go back and try to add cycle dates to my tracking spreadsheet *sigh*
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  #62  
Old 04-19-2009, 09:25 PM
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I've been searching the site today and haven't found any current info on birth control pills and catamenial E. I'm seeing my OB/GYN tommorow and with my Neuros blessings am planning on going on back on the pill. I'm unsure on which to try. One where I would no longer have any periods or the old standbys. I'd prefer the newer ones but wonder if having a regular period would help in tracking the seizures. Any one have luck more luck with one over the other?
I'll probably add on progesterone as well.

On a side note my neurologist has offered me a clinical trial on progesterone, I'm waiting for more info. Of course if I go that route I'd have to go off the pill. We'll see.
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  #63  
Old 04-20-2009, 08:49 AM
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Hi, I had a lot of seizures when I was on my monthly. I am over it now. I am 66 years old. I am still having a lot of seizures. My brain has not caught on.
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  #64  
Old 04-20-2009, 09:37 AM
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Actually, I was on depo provera for a long time. It worked VERY well for me. No seizures at all while I was on it....The only problem, it took me years to get pregnant after I got off of it.
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  #65  
Old 04-20-2009, 11:07 AM
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Hi Flinnigan, you can go to google and get the information you need. That is why the expression "google it."

Hi Skillefer, the birth control pills did not come out until after I had 3 of my children. The last of my 3 children were born in 1966. The pill had come out, but it was not fool proof. I had friends who got pregnant using it. Most everyone used condoms, which did not work either.

In 1979, I wanted to have another child and I did. My doctor told me that I was not to get pregnant because of the medicine I was on. It was Depakane. He wanted me to have an abortion. I consider that murder. My child in me was a life. I went into status epilepsy and a coma the day after he was born. It was worth it. I think I went into a coma was to let my body rest and heal.

I do not want to get into the subject of abortion. Everyone has a different belief on it.
But my monthly's were bad and my seizures got worse. I am glad I am over them.
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Old 04-20-2009, 11:49 AM
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I've been googling like crazy but even at the Mayo clinic and Duke University they still are suggesting more trials.

I guess I'll have my Ob contact my neurologist and see what they come up with.
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  #67  
Old 04-20-2009, 12:41 PM
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I am unclear as to whether or not you are considering the birth control pill as an alternative for Catamenial seizures. There is a pub med article (sorry I don't have time to look it up) that said that synthetic hormones did not show improvement for hormonal seizures. However, bio identical progesterone did.

My daughter is using the bio-identical one, and it has definitely helped her with the estrogen dominance that she was experiencing. However, there does seem to be a cause of that too, which has something to do with liver and insulin. So perhaps if we dig deeper we will find more natural solutions.

As far as birth control, perhaps there are ways that won't wreck havoc with your hormones, especially if you are prone to seizures during that time.

Magnesium is another therapy that helped me.
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  #68  
Old 04-20-2009, 01:11 PM
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Thanks Robin,

Yea I starting to think the pill is not the right way. I've used progesterone in the past before I know my "hot flashes" were really seizures. It helped a little but not completely. I was considering the mini pill which is progesterone only.

Where do you get your bio identical progesterone? We don't have a compounding pharmacy near us. And does your insurance pay for it? I know they probably woudn't pay for the pill anyway, but should pay for hormone therapy. Money is quite tight right now I need all the help I can get. The one I used was Prolief made by a cosmetic company Arbonne. I love a lot of their products. I tried Happy PMS from the health food store but found less benefit.

I'm waiting for info from my Dr. about a new clinical trial using progesterone. That may be an interesting route, but I don't want to put my life on hold for several years especially if I got the placebo.

Thanks again for all your posts they're always very insightful.
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  #69  
Old 04-20-2009, 01:13 PM
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P.S. I also don't know if I'm truly suffering from Estrogen dominance. I'll get my levels checked hopefully today.
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  #70  
Old 04-20-2009, 05:14 PM
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http://www.johnleemd.com/store/estrogen_dom.html

They don't want their info copied.... thought the medical world took an oath...first do no harm. Let's help people folks, not hinder their care.

So... Rebecca had spider veins on the inside of her thighs. A lot... and I did some research and found out this was due to estrogen dominance. Once we began the cream, the marks went away.

We do get ours from a compounding pharmacy. It is made up the day we call in. It is paid for, since our Neurologist at USC gave us a prescription for it. Her speciality is woman and hormones.
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  #71  
Old 04-20-2009, 08:20 PM
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I agree with Skille---depo provera was great for seizures. I had only 1 every 2 years (usually my own doing). Yet, after a certain number of years, you MUST get off of it. It makes your bones extremely brittle!

I'm on my last dose now and am looking for natural alternatives. Although I loved the steadiness of the DP, the risks are not worth it anymore (I've been on for 7 years---way too long). Actually, the only reason my OB let me continue was b/c of the seizure control. Yet, let's face it, no birth control drug can stop a seizure when it really wants to come. I figure that I have an estrogen overload and I just need to counter that with progestrone.

Robin, what is the cream you say you used. When I hit puberty--and consequently my new life with epilepsy--I began to have veins. Many are really ugly and I'd love to get rid of them.---LMT
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  #72  
Old 04-20-2009, 08:45 PM
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Anyone order Dr. Lee's books? I don't know whether to get the balancing hormones one or the premenapause book. SUGGESTIONS?!?!?! I think if I buy another book, hubby will think I'm starting a health library. Yet, I need answers and although I like my neurologist, it's MY health--I need to take charge!

At this point, I should be looking for the book titles "Old Lady Who Lives with a Loopy Brain" A users guide to the "golden years" with epilepsy---I'm 39 and that is how I feel somedays!---LMT
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  #73  
Old 04-20-2009, 08:48 PM
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The cream I speak of is bio-identical progesterone. Prescribed by a doctor to replace progesterone that the body is not producing. Estrogen excites the brain, progesterone calms the brain. There have been a few studies, and more are needed to understand the connection between progesterone and seizures in women. You can find a few online, if you dig.
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  #74  
Old 05-29-2009, 11:29 PM
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Quote :
Natural progesterone has also demonstrated neuroprotective properties. One recent study called for more attention to progesterone as a “potent neurotrophic agent that may play an important role in reducing or preventing motor, cognitive, and sensory impairments” in both men and women (Stein 2005). Progesterone deficiency has also been linked to migraine (Colson et al 2005).

Wild Mexican yam is a safe, natural source of progesterone (Bagur et al 1996; Komesaroff et al 2001; Uchibayashi 2001). Other sources of natural progesterone include thyme, oregano, turmeric, verbena, damiana, and red clover (Bagur et al 1996).

Most natural progesterone products that can be purchased over the counter use progesterone derived from soybeans and yams. A common form of natural progesterone is dispensed in a cream that is rubbed into appropriate areas of the body (Komesaroff et al 2001; Uchibayashi 2001). This route of administration bypasses the liver (where the majority of oral progesterone is metabolized) and allows more hormone delivery to where it is needed.

This method provides the closest possible approximation to the natural production of progesterone by the ovaries, provided the dosages are properly timed. Once again, it’s important that progesterone therapy mimic the natural cycle as much as possible. To accomplish this, many physicians recommend progesterone therapy be used only during the last half of the month to simulate a young, healthy progesterone cycle.
http://www.lef.org/protocols/female_...oration_01.htm
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  #75  
Old 06-30-2010, 12:27 AM
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Dr Blaylocks Wellness Report highlights Killer Headaches this month.
I am quoting a relevant section:

Quote :
Migraines During Pregnancy and Menstruation

In general women who have menstrual migraine (attacks with menstruation or with the onset of menarch), do not have migraine attacks when they are pregnant.

***

A fall in estrogen levels can precipitate migraine attacks, and normal, stable levels prevent them. The highest incidence of migraine attacks occurs in women during estrogen and progesterone fluctuations - during menarche, menstruation, and the use of oral contraceptives."
The incidence of menstrual migraine is as high as 60% - 70%.
Most women have attacks, usually without aura, during their period (menses), which is the time of greatest hormone fluctuation.
Interestingly, estrogens have a significant effect on magnesium balance, especially the form most associated with migraine headaches - ionic magnesium (Mg2+). High estrogen levels have been shown to lower Mg2+ levels, thus making an attack more likely". Normal, physiological levels of estrogens did not interfere with levels of Mg2+.
Low concentrations (normal levels) of progesterone raised Mg2+ levels, and hgh doses significantly lowered it, again making an attack more likely. Testosterone had no effect on magnesium levels.
Again, this emphasizes the importance of keeping one's magnesium levels normal, which is especially important in pregnant women.
If a woman starts her pregnancy with low magnesium levels, she is more likely to suffer from a worsening of her migraine and she will have a higher risk of blood-clotting disorders and derebral vasospasm, should she have an AVM or aneurysm.
Some studies have shown that magnesium supplementation also reduces the baby's risk of having a neurological birth defect.

Quote :
It seems that most physicians who treat migraines ignore the strong connection between migraine attacks and high levels of glutamate in blood and spinal fluid.
In fact, the severity of the pain is directly related to the level of the glutamate in the brain.
He goes on to discuss how to treat Migraines, recommended supplements, how to increase brain energy, and reduce inflammation. It is a great article.

About five years ago it was suggested to me that I start taking Mg2+ for my migraines. The only time I have had a migraine in those 5 years was when I didn't take the mineral on a regular schedule. I suffered for 30+ yrs and now I can be pain free by taking a natural mineral. I wish I had know about it while I was pregnant. I might have prevented neurological defects when I was pregnant.
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Last edited by RobinN; 06-30-2010 at 12:33 AM.
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  #76  
Old 07-04-2010, 12:50 AM
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Hi Stacy!
You probably don't have the same thing as me but before I ever had a problem with seizures, when I was 16 y/o my periods were crazy too. I would lose a lot of blood. Once one even lasted two weeks, so obviously we went to the doctor and they found out I have something called I.T.P. thats the short name of it. It's called Idiopathic Thrombocytopaenic Purpura. It's when your body doesn't produce enough platelets in your body so you bruise easily and it can cause a lot of bleeding if not treated. I noticed I would get small pinkish dots and it was small bleeds. I'm also anemic too. Did you have anything like this as well? I was just curious and my seizures do seem to happen more frequently around my periods too.
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Old 09-11-2011, 03:45 PM
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Originally Posted by RobinN View Post:
I had one doctor that looked at me and said of course you are perimenopausal. Then I went to a doctor that specializes in hormones, and he did some specialized blood work and said, "Nope... not yet." So I use a bio identical hormone and life is a lot better. I think I am older than you are. Rebecca had the same blood test taken, and we did an ovulation test (thermometer chart) and she was not producing progesterone. She is also on bio identical progesterone. She does not have seizures centered around her cycle anymore if she is careful about using the cream.
I believe tht my daughter's seizures are hormone related. Her doctors don't seem to know anything about this. I too am bioidentical hormones and feel great! My naturopath suggested that Amber (my 25 yr old daughter) go on bioidentical progesterone from day 14-28 of her cycle. Her cycles are mess up now and all of her periods have been during her period. She had 4 seizures in ten years and now on a different med has had 5 in the last few months during her periods (which are messed up...3 periods in 6 weeks and 3 seizures in that time) My daughter is on lamitrogine which is obviously not working well for her. Any ideas or advice would be greatly apprecialted. Diane
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Old 09-11-2011, 06:14 PM
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Hi Diane --

Sometimes anti-seizure meds cause seizures. Lamictal in particular is known to interact with estrogen -- when estrogen levels go up Lamictal levels need to be upped to compensate. Since your daughter's seizures appear to be related to her hormonal cycles it's possible that her Lamictal's doses may need to be increased during certain times of her cycle. Or, perhaps she needs to try another med entirely. If her neurologists aren't familiar with catamenial epilepsy, seek ones who are, and ask about the option of treatment with progesterone.
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Old 09-11-2011, 06:21 PM
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Red face thank you


I have been reading everything that i can on this subject. She has had more seizures on lamitrogine in 4 months than she had in 10 years on tegretol. Even on tegretol she had her period each time that she had a seizure (she had 4 seizures in that 10 year period). She is on 200mg (i think that is correct) of lamitrogine twice a day. I am calling my family dr. tomorrow and insisting that we see another neurologist who has be recommended to me. Thank you for your advice. Diane
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Old 09-11-2011, 06:27 PM
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Her neurologist wants to add valproic acid as well as her lamitrogine but I wasn't impressed with all the side effects. I am hoping that bioidentical progesterone in the last two weeks of her cycle will help, but I'm not sure because she will still have her period????
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