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Topic Title: Seizures during my period
Topic Summary: I always get more seizures around my period.
Created On: 03/12/2009 02:59 PM
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 03/12/2009 02:59 PM
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kspr819

Posts: 1
Joined Forum: 03/12/2009

Hi,
I always seem to get more seizures during my period. The doctor even said that that happens to a lot of women but it's really frustrating. Does this happen to anyone else? and does anyone out there have a way to control it so it doesn't happen. I feel like anything I do still doesn't work. Anyone know any information I don't know about???
 03/12/2009 03:38 PM
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jherb88

Posts: 152
Joined Forum: 09/05/2001

Look for the term "catemenial." That means seizures triggered by hormones. There are definitely common, but so many of us have trouble doing anything about it. Birth control has helped some people, or else a diuretic called Diamox. Everyone is different, but there are some things to ask your doc about. Good luck!

Julie

-------------------------
I have had seizures for over 20 years now. I am currently on Lyrica and Trileptal.
 03/12/2009 03:49 PM
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stitchywoman

Posts: 2
Joined Forum: 03/12/2009

I also have always had this problem. Very common among women (darn those hormones!). My doctor and I had worked out a routine where I would increase my seizure meds about a week before my period was due. Not perfect but helpful. Now I'm doing the menopause thing so it's really a mystery when and if my period is coming. I can't do this anymore so I basically will have months when I skip my period or have a very light one and I breeze right through it and then there are other months that I will have 3 or 4 seizures during the week of my period and sometimes even 2 or 3 a day. Ativan seems to work well to break up these cluster seizures but these past two years has been very challenging for me and my doctor. My one hope is that when I'm finally finished with the hormone thing that the seizures might actually get easier to control. Anyone else been through menopause and is there a difference?

-------------------------
Finish each day and be done with it. You have done what you could. Some blunders and absurdities have crept in; forget them as soon as you can. Tomorrow is a new day. You shall begin it serenely and with too high a spirit to be encumbered with your old nonsense. - Emerson

Diagnosed 1974, partial complex seizures

Taking:
Keppra 1250mg twice daily
Ativan as needed
Multivitamin daily
Vit D 1000mg daily
Allegra 180mg daily
 03/13/2009 11:45 AM
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BamaJen88

Posts: 4
Joined Forum: 03/13/2009

I have started having more seizures during my period in the past 11 months and have also lost my job (laid off for other reasons given). I am averaging 2 grand mal a month, sometimes more and am now going to have to consider disability after being able to work and even drive in my state for 17 years! I am single and the depression threatens to overwhelm me. Have any of you had to consider this? I am really, really trying to keep my head up, but I had been doing so well with it for so long. Does anyone have any advice? I have a great family and friends, they just cannot possibly understand how devastating this is to me.
 03/13/2009 02:03 PM
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ande

Posts: 173
Joined Forum: 05/20/2008

KSPR,

I agree with Jherb....check into "Catamenial Epilepsy". I myself have been diagnosed with Catamenial Epilepsy - I had the same exact problems. I told several neurologists that I thought my seizures had something to do with my periods or hormones and they all looked at me like I was crazy! I actually went to a hormonal specialist/endocrynologist and they were the ones that diagnosed me with Catamenial Epilepsy. Basically, during your menstrual cycle or ovulation your progesterone drops and your estrogen rises - Progesterone prevents seizures, estrogen causes them causing you to have seizures.

Sorry to make this sooo long, but just some advice that helped me.....my OBGYN put me on a birth control called Ovcon 50. I take this birth control every day and skip the placebo pills which causes me to NOT have a period any more. Without a period, my seizures have dropped dramatically! It has done absolute wonders for me! I went from having 20-30 seizures a month, to maybe having around 3! Hope this information has been helpful! Good luck, and feel free to contact me if you have any questions! =)

-------------------------
Ande - 27 Female
Houston, TX
Has had Catamenial Epilepsy since age 11 (puberty)
Meds: Carbatrol, Keppra, and Birth Control
 03/15/2009 01:09 AM
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maricruz

Posts: 3
Joined Forum: 03/15/2009

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Edited: 06/28/2009 at 09:13 PM by maricruz
 03/15/2009 03:45 AM
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MoxieQ

Posts: 861
Joined Forum: 05/29/2008

Welcome to the catamenial club!
About half of the women with E have reported their seizures tend to occur at the beginning of their periods and again at ovulation. Those two times are when estrogen is high and progesterone is low.
It is probably best to avoid soy products (which are high in plant estrogens) at least at those times of the month, but also remember there are all kinds of artificial steroids that turn up in beef, chicken, and dairy products...so try to find organic alternatives if possible.

That is just my own advice.

-------------------------
MoxieQ
 03/15/2009 06:31 PM
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jacdesha

Posts: 3
Joined Forum: 03/15/2009

Hi, I have seizures right before and during my period. I was diagnosed 2 years ago with partial seizures, and I am still not seizure free. I have been on dilantin, keppra, and topomax. I am on Trileptal which seems to be working okay untill that time of the month. Trileptal seems to be the only medication that has side effects that I can deal with. All the others just did not work for me. I am not sure if there is connection but about 3 years ago, I had a tubiligation and novesure abligation done. After that my hormones are so out of wack. I now have worst menstrual cramps that I have ever had in my life. I was told that this has nothing to do with my epilepsy, but it is funny that I am having so many problems after this procedure. Is there anyone else that has experienced this situation?

Edited: 03/15/2009 at 06:35 PM by jacdesha
 03/15/2009 06:49 PM
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jacdesha

Posts: 3
Joined Forum: 03/15/2009

Hi Maria, How does the Topomax work for you? It gave me a strong tingling sensation in my feet. It felt like needles being probed into my feet. I had to stop taking it. I took Topomax along with Trileptal. Now i take Clonazepam to help with my menstral cycle so we will see if this works. Clonazepam is also a seizure medication but it is also a controlled substance.
 03/16/2009 01:00 PM
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pann

Posts: 3
Joined Forum: 03/16/2009

6 weeks ago I had a complete hysterectomy. When my doctor first mentioned Hormone Replacement Therapy, I said "NO" because of all the negative comments about estrogen being linked to seizures. When my "night sweats" and "hot flashes" started, I quickly changed my mind. Has anyone been on a low dose of estrogen and been successful? I have been started on the lowest dosage and I already have some relief from my menopausal symptoms. I am just worried that the estrogen may trigger a seizure. I would greatly appreciate any help on this.

Thanks!!

-------------------------
Patty
Had my only seizures at the age of 14. Placed on 400 mg Dilantin and thank the Lord I have been seizure free. Tried topomax and zonegran, but went back to Dilantin. Had a complete hysterectomy 1/28/09. Trying to figure out the hormone/seizure connection at this time.
 03/17/2009 08:33 PM
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ellens

Posts: 114
Joined Forum: 07/09/2003

I always had more seizs around "that time of the month". One thing I have found that has helped is I have been on the Depo Provera for about 15 yrs now. I dont have "that time of the month" anymore. I have had the vns and a RTl and my seizs have went from cps to sps. Some people have had bad experiences w/ the shot but I LOVE it !!! Along w/ the reduction in seizs I also dont have to put up w/ the unbearable cramps now.
 03/18/2009 01:06 AM
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annhere

Posts: 5
Joined Forum: 03/18/2009

Hang tough ... some doc's up med's during cycle. No one understands how devastating this is and how hard unless you wrestle with it.
 03/19/2009 12:24 AM
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maricruz

Posts: 3
Joined Forum: 03/15/2009

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Edited: 06/28/2009 at 09:28 PM by maricruz
 03/19/2009 09:06 PM
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Bunky01

Posts: 60
Joined Forum: 11/10/2008

I agree with EVERYONE who has posted thus far. Welcome to the catmenial club. Research it! There is plenty of info on this community page and the foundation site. Keep a log of symptoms and get know your body. Only then will you be able to communicate just how much this is affecting you to your doctor. I have been dealing with this for several years now, changed meds, tried different birth control pills, all of it. But still, only when I found a pattern by keeping track of MY symptoms, and doing research on MY meds, did the doctor listen.

Yes, there has been research about this, But no doctor knows exactly how to fix it is the problem. They can't say - take this pill or try this. I have asked them to monitor my hormones, take levels throughout the month. But they insist that since there is no set scale it won't matter. I simply ask that this way we will be able to see what my levels are when my seizures are worst - but what do I (we) know - we are just the people dealing with this on a day-to-day basis is all.

-------------------------
26 yrs old - Epilepsy since age 2

Temporal Lobe Grandmal / Petit-Mal

Zonegran (lowering some) & Lyrica (building currently)
Folic Acid - 1 mg
Vitamin C - 500 mg
Vitamin B6 - 100 mg
Synthroid - 10 mcg
Rx Multi-Vitamin
Calcium+D supplement
Progesterone - 5 mg cyclically
Actonel weekly

now dealing with Catamenials
 04/02/2009 03:26 PM
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whiteexse05

Posts: 13
Joined Forum: 01/02/2009

yes... it's due to hormones. just take it easy during your period :)

I can't take birth control for this reason... and I was worse when I was pregnant because of the hormones.

I'm now equiped with the birth control mirena because it's a low dose hormones. it was approved by my neurologist...
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