Women only: Seizures increase during that time of month?

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abrown202

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I only have seizures during my period. The rest of the time they are controlled. I have been diagnosed with Catamenial Epilepsy. What causes it is the spike in Estrogen and decrease in Progesterone that occurs right before you begin your period. Tests have shown that Estrogen can be placed on animals and they will have seizures while progesterone will stop them.

Most neurologists (who are mostly men) don't know much about this and won't even admit there is a link. Dr. Herzog who is a neuroendocrinologist studies how hormones affect the brain is located at Harvard and has done research in this area. I am going to see him next week and hoping he can help.

I would like to hear from other ladies who have this or believe their seizures increase during that time of month. I bet if you keep a seizure diary you will find they do increase each month during this time or right around it.

Any of you notice a difference in the number?
 
Many of us know of CATAMENIAL seizures and have kept calendars over the years. I remember mentioning this to my dr. 30 years ago. The dr. back then said there was no connection. Fast forward to the '90's and I was seeing an epilptologist and finally they were putting hormones+ seizures together, at least she was for me. When I started having seizures, they started as CP around that time of month, but they changed over the years. They got to 4-5 CP around that time, then increased to CP + TC.

Most neurologist(s) who specialize in epilepsy (epileptologists) do know about catamenial epilepsy, regardless if they are men or women. They've been doing studies about it for years now. I mentioned the link in the other post, but I'll mention it again here about catamenial seizures:

http://professionals.epilepsy.com/page/catamenial_patterns.html
 
Hi :) My neurologist, who is also a woman, has diagnosed me with catamenial epilepsy. Although my seizures are not well controlled the other days of the month, they are especially active the week before and during my period as well as during ovulation.
 
I ruled this out some time ago, until I realised that my monthly was not monthly perhaps. I was looking for like a time of the seizures 1 month apart, and had not noted this on my diary. After the last hospitalisation was predictably 1 day before my period and many come at this time, and then the last one was similar - I got period next day, I tracked my monthly and seizures and then figured, they are coming twice a month perhaps. More tracking is needed, however I do note that it is more prone when I was pregnant and also during period time, however there has to be other factors and I have to miss med.
 
Hi abrown202, welcome to CWE!

Catamenial epilepsy is relatively common among CWE members, and among women with epilepsy generally (approx. 40%). The link below shows all the CWE threads tagged with catamenial epilepsy:
http://www.coping-with-epilepsy.com/forums/tags/catamenial epilepsy.html

Despite the fact that it is fairly widespread, there haven't been many studies evaluating treatment options. Perhaps this is related to the drug companies' reluctance to invest in and market natural progesterone (where there's little profit to be made).

One of the small studies that indicated that natural progesterone is more successful for seizure control than synthetic varieties (see http://professionals.epilepsy.com/page/catamenial_treatment.html) was conducted by Dr. Herzog, so I expect that you will find him very knowledgeable and helpful in this regard. I hope he can give a sense of what if any readily progesterone-based treatments are currently in the pipeline. Keep us posted as to how your appointment goes.

Best,
Nakamova
 
Thanks. I have read his study as well as a lot of other info on this subject. I even tried to treat myself with the help of my gynecologist by using a variety of progesterone treatments because I live so far from Boston. Nothing has worked. It is weird since my meds work the rest of the time. It is like they can't handle that extra surge of estrogen during that time.

Dr. Herzog has stated that it is the pharm companies that refuse to do the research needed. He had to really fight for funding for the last study you mentioned. It is too bad because they have now identified all of this and just need more studies to find the answer.
 
I know they have done studies in the past but not any recently that I am aware of . Most of the info is a few years old. I have not heard of anything new or anything built upon the last studies and I follow all of this very closely. I am hoping that Dr. Herzog will tell me some good news about new studies and information. I am interested in the empirical research studies.
 
I am now doing a diary for next few months of matching days of my cycle to seizures. I have not being doing this for enough time as yet.
 
I'm on a contraceptive that stops my period (WOOHOO, RIGHT?!) but strangely enough my first seizure was when I would have had my period, and the day before I did experience some cramping, which hardly ever happens.

My second seizure though (I've only had 2 known since March) was 2 weeks later.
 
My daughters were often during that time of the month. We tried bio-identical progesterone, which helped some, except it needed to be monitored and adjusted according to how she was feeling. I could not do this for her. Her periods came on really strong. Yet once we began to balance the hormones, some very dark spider veins on the inside of her legs went away, seizures began to reduce in number. However, at the same time she was changing her nutrition, added supplements, worked with neurofeedback etc.

She is now on a birth control that is targeted for this symptom and it seems to have helped with the excessive symptoms at that time of the month. I believe magnesium also has been helpful.

Pub med articles are often written with the conclusion that more studies need to be done in this area.... 7 years later, I am still waiting.
 
my daughter has improvement on MAD for past 5 1/2, but still have 1~2 seizure on ovulation day & menstrual cycle, what would be the best plan of action? has any of you have experience take natural progesterone cream?
 
Don't give up hope. My daughter used the cream for awhile. However I became concerned because it was difficult to follow up as to whether she had used it that day or not. With a pill you can count them.

When she began dating we put her on a birth control pill that is designed to help with this. She still finds that time of the montH to be difficult, but the seizures have not returned.

Insulin levels also play a role in hormonal imbalance. So do watch high glycemic foods
 
catamenial epilepsy

I haven't been diagnosed by a doctor of this but for as long as I can remember, my electrical activity gets way more active just before I get my period. I document it and It's always the same week, day before or the day of that I end up having my tonic clonic. Sometimes I miss a month but then it will come a week later and so will the grand mal.
I have just gotten hormone tests done and will find out what's going on there for me so I can then make the next decision about treatment.
 
Ahh, good idea. I go on seizuretracker.com and it has that option, but I had never kept track of my cycle and trended that. The website above is a good electronic seizure keeper, and it is free. It does all kinds of graphs and stuff (being the scientist I am, hahaha).
 
RobinN said:
Insulin levels also play a role in hormonal imbalance. So do watch high glycemic foods
Click to expand...

That's because insulin IS a hormone. I have Type 1 Diabetes and do have to watch my glycemic intake, mainly my carbs, which are high glycemic foods. I also have to take insulin shots first thing in the morning and with every meal. But when I experience hypoglycemia, I don't go into a seizure, but rather start feeling faint and shaky.

Thirty + years ago is when I started having seizures. My first T/C seizure occurred at "that time of month" and they continued being that way until after my 2nd child was born. Then things really went haywire. My hormones were out of control by then. My periods lasted 10 days or so and were really heavy. And they came every 2-3 weeks. We found out I also had a thyroid disorder, which can also play havoc with a woman's hormonal system. So in addition to my epileptologist, I also see an endocrinologist, a dr. who specializes in hormonal disorders.

Women who have epilepsy also deal with a all sorts of hormonal issues.
 
Catamenial Questions

hi everyone,
Just a few catamenial comments, I think seizures can be more prevalent at times of ovulation and as well as before and during menstrual periods.
It was once suggested to me that a mild diuretic could help.
Mostly! I have questions about peri menopause? Wouldn't it be great if the seizures just stopped altogether?
 
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