Catamenial Siezures


uberzw... Food-Triggered Siezures Created by uberzw...at5/18/08 - 11:10 am\|16 Comments Posted To:
Black.... Epilepsy triggers? Created by Black....at3/18/08 - 11:11 am\|29 Comments Posted To:
krjohnson Birth Control and Topamax (or any other anti seizure med) Created by krjohnsonat3/5/08 - 7:30 am\|7 Comments Posted To:
KerriB Can seizures be caused by birth control? Created by KerriBat2/22/08 - 2:02 pm\|1 Comment Posted To:
KerriB Can seizures be caused by birth control? Created by KerriBat2/22/08 - 2:02 pm\|16 Comments Posted To:

uberzw...

Food-Triggered Siezures
Created by uberzw...at5/18/08 - 11:10 am|16 Comments
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Black....

Epilepsy triggers?
Created by Black....at3/18/08 - 11:11 am|29 Comments
Posted To:

krjohnson

Birth Control and Topamax (or any other anti seizure med)
Created by krjohnsonat3/5/08 - 7:30 am|7 Comments
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KerriB

Can seizures be caused by birth control?
Created by KerriBat2/22/08 - 2:02 pm|1 Comment
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KerriB

Can seizures be caused by birth control?
Created by KerriBat2/22/08 - 2:02 pm|16 Comments
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Re: Catamenial Siezures

I,too,had catamenial seizures around my cycle.Found it quite annoying and I talked to my neuro about it and we decided to try Diamox(which is a diuretic).Works like a charm because haven't had any catamenials since I started taking it "during that time" of the month.Not saying it would work for you because every body's body chemistry is totally different.Good luck.Mention it to your doctor and see what he says.

By vikesfan on Thu, 08/19/2010 - 4:19pm

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does Topomax is truly effective to does who have a catamenial seizure.. how about keppra? because my keppra that i was taking is not effective to me and my doctor always give me a higher dossage and almost 1yr and 7months i was taking that medicine and he doesent change it till now. and until now nothings was change. please help me thanks

By christel on Tue, 08/03/2010 - 4:44am

I haven't been specifically diagnosed with catamenial epilepsy but I do notice a signifigant rise in seizures during my time each month. I do know that any extra artificial estrogen in the body (many birth control pills contain this) will cause extra seizures. I also have PCOS and my gyno keeps trying to get me to take pills with estrogen (this helps reduce PCOS), which I keep refusing to do. I more worried about busting my head during a seizures and dying from that rather than PCOS! My neuro suggested the Mirena IUD which only releases levonorgestrel. It hasn't helped yet but I have my fingers crossed!

I'm only 28 and childless but would like to have 1 or 2 in the next few years, but I sure am close to ripping these evil ovaries out!!!

Tiffany K.

By Tiffany K on Sun, 07/18/2010 - 2:04pm

Tiffany,

I also have catamenial seizures. They started just about the time I turned 38. I am now 40 years old. My cycles run about 23 days. I am experiencing seizures about 1/3 of the time. 4 days around ovulation and 4-5 days around the start of my menstrual cycle.

I tried the Mirena IUD without success. It just made it more difficult to predict when I was going to have problems because I stopped getting my period.

I have been working with Dr. Alan Jacobs, a neuroendocrinologist in NY. I found him on line at www.neuroendocrinology.org He prescribed Prometrium for me and it has helped, but by no means has it solved my problems. I have also been working with a Naturopath that has me taking some Vitanica products - Fem Rebalance and Vitex. These seem to have reduced the severity of my seizures, but they continue to persist.

Dr. Jacobs has suggested I try Lupron for a couple of months. This is a drug that instantly induces a reversible menopause. This is really the only way to see if a hysterectomy would be a viable solution to resolve the seizures. If it doesn't make a difference, I certainly wouldn't proceed with a surgery. The good news for you is that pregnancy elevates your progesterone levels and should give you a seizure reprieve!

I would be happy to discuss some of the other things I have tried the last couple of years.

Leigh

By carped on Thu, 07/29/2010 - 10:53am

Thank you Leigh,

I am about 6 weeks into the Mirena & in the last days of the 1st period I've had while on it. Today is the worst day I've had in months, lots of partial complex & 1 grand mal today. Did the Mirena give you any other problems other than just not being able to predict bad days? Like I said I'm not have a great time with it so far, but of course your body takes time to get used to anything different. I'd hate to take it our because it cost so much, do you think they give refunds, haha! I'm really interested to hear how your Lupron is going, I've never heard of that drug. Keep me informed and thanks for the info, I'll definately check out this website!

By Tiffany K on Thu, 07/29/2010 - 2:03pm

Sorry to hear you are having a rough time of it. I can certainly relate! I just started ovulating again on Day 6 of my current cycle! UGH! Fortunately, my seizures are SP and CP and never generalize, but it does affect my ability to drive and hold a conversation. To add insult to injury, laughing seems to be one of my triggers when I am right on the edge. I just sigh and think tomorrow is another day. I am currently on my fourth day of feeling puny so I should be back to normal soon.

I only had the Mirena IUD for 9 months. During that time, I felt bloated and miserable. I was still having just as many seizures (the progesterone is localized to the uterus) and my partner agreed to have a vasectomy. The IUD is a great method of birth control, but I really wanted it out because I felt like it was impeding my ability to determine what was really going on - and it was, because being able to chart my periods helped me discover I have catamenial epilepsy. I was fortunate, I had already met my stop loss for the year and my insurance covered the Mirena in full with no out of pocket expense.

I have another appointment with Dr. Jacobs later this week. Lupron is really pulling out the big guns. He may want to try Deproprovera shots first. No matter what, I need to eliminate some of the estrogen in my system. Trying to balance it with progesteron doesn't seem to be working and I need to get my life back. I will keep you posted on what he suggests and where I am going from here. I will say the natural progesterone has helped, it just hasn't been enough. If you haven't tried it, get to the health food store and buy some Emerita cream and start using it the next time you have symptoms.

By carped on Wed, 08/04/2010 - 10:02am

I have been on the Mirena myself now for about 5 months and the sz have stopped cold. I was having pretty severe episodes and it seems to be working. Mind you, I was on the Nuvaring prior to this and that seemed effective too. My question to you is this: are you still taking some sort of AED? I am still on 250 mg of Topamax and I understand that remains a crucial component. Birth control by itself will not be as effective as a combination therapy of hormones and anti-convulsants for catamenial sz's.

By uberzw... on Fri, 08/13/2010 - 10:17pm

I am not taking any other drugs at this time. At one point, I was taking up to 1600 mg a day of Prometrium. The side effects made it quite horrible. A toss up between which one is worse - seizures or drug side effects. I had my first Lupron injection 10 days ago. My seizures are about 15% of what they would normally be. A few more months of this and I am going to see about getting a hysterectomy. They can have it all if I can have my life back!

I am glad the Mirena is working for you! I had no success with it. Our bodies and chemistries are so unique. I think this is what makes it so difficult for a physician to determine the problem and treat it.

By carped on Thu, 08/19/2010 - 3:44pm

I have the same thing. Catamenial events. except I get them both at ovulation and the first days of menses. i was thinking like you, that if i go on the progesterone only pill it might nix the events. how have things been going?

pam

By wldhrt13 on Tue, 05/26/2009 - 6:08pm

I have had Catamenial Siezures for approx. 20 years. Currently I am taking a combination therapy of 250 mg. Depakote in the am and 500 mg of Depakote in the pm with 100 mg of Topamax. Approx 1 wk before my menses begins I start a 10 day course of Diamox to remove as much excess water off the system. Most women retain water in their abdomen, we retain it in our brain?! Ha. This works well for me and I've noticed that about 1-2 day before I'm due to cycle, I'm more susceptible to siezures. This doesn't mean I'll have one, I'll just be more at risk. I've noticed that I'm more sensitive in the morning, which is why the evening dosage is higher. I've spoken to my neuro who is quite experienced with this type and he has stated that the progesterone pill doesn't "nix" anything. When you enter menopause, they still happen. Things change and you may have to change your meds, but the rest of it is workable.

I've found quite a bit of info on the internet that was pretty accurate. Some may be a bit more in depth than you are looking for? How much do you really want to know. The most important thing is be sure to get your sleep! It can really mess with your siezures if you don't get your rem sleep.

By denise... on Tue, 05/26/2009 - 7:22pm

Hi,

I have been dealing with catamenial epilepsy for at least ten years, have been on every pill available. I was wondering what is the name of your doctor? My doctors don't seem to know anything and I am informing them about it. It would be nice to be helped. I am going to get some diamox asap I know that but what is the name of your doc?

Thank you so much

By bridgey95 on Sun, 07/18/2010 - 3:41am

Hi Everyone......thanks for this discussion. Listen....I believe what I have is Catamenial E. I have been tracking both my cycles and my GM's and they coincide.

So....I was wondering why no one has talked about getting a hysterectomy and ending the issue of spiking Estrogen that causes it in the first place. Is this even a possibility? I'm ready to yank the works out and get my life back.... it's nothing but trouble anyway!

Comments???

Thanks,

ShakinWillow

By Shakin... on Mon, 12/13/2010 - 2:31pm

Believe it or not, from what I have read, hysterectomies will only send you spirialing into an early menopause- which will only make catamenial E worst. Not having it wont resolve flucuting hormones but somehow make it worst as your body attempts to compensate.

Menopause in general is not a happy time for catamenial e, so kickstarting it early is by far the last thing I desire to do.

By uberzw... on Tue, 12/14/2010 - 6:14pm

Diamox (a water pill). . . eliminated my Catamenial Siezures

As I understand it, Diamox is a (water pill) removing excess amounts of water from the body from the begining of ovulation to the end of a woman's menstrual cycle. What I have researched is that this is when the hormones peak and hit their maximum and minimum levels.

Before I was on Diamox. . .

My catamenial seizures began when I was 12. . .when my period began.
Every month I would have seizures at the exact moment my menstrual cycle started.
My seizures, also, started at the exact moment of my ovulation cycle.
Any time I would have a change in hormone levels, I'd have seizures.

Since starting Diamox. . .

My catamenial seizures have COMPLETELY stopped.
To date, I have been seizure free for over 60 days, now. (02/03/09 - 04/05/09)... I'm so happy!:)

I still take a combination of AEDs & anti-depressant meds. . .

Lamictal
Trileptal
Zoloft
Ativan
Abilify
AND. . . . . . . .Diamox! :)

No more catamenial seizures. . . what a relief! :) :) :)

By LovesMath on Sun, 04/05/2009 - 6:09pm

Re: Diamox (a water pill) eliminated my Catamenial Siezures

My seizures started when I was 13. After trying Phenobarb and Tegretol, were controlled by Depakene/Depakote from age 17-age 30. I was weaned off when I started a family and was on no meds from age 30 to just in May when I had my second post age 40 seizure (the first one was 2 years earlier, which a neuro felt was isolated and due to a recent flu and extreme work and personal stress). I am now on Keppra. I asked my new neurologist if the recurrence of seizures could be due to my age (starting menopause) since they began at puberty. He pooh poohed the idea and said he had never heard of a connection. I found that hard to believe so found this website and first heard of Catamenial epilepsy. My difference is that it started at puberty and stopped for a while and recurred at menopause. Never had any problems being weaned off the meds or during either of my two pregnancies which if my seizures were hormone based I would have guessed they either would have reared their ugly head(s) while i was on birth control or pregnant but never happened. My last seizure was not during my period and I don't believe the previous one was either but couldn't swear to it. My teen seizures were so long ago I have no idea if any were hormonally based. One would think that would have been considered at the time but since my current doctor seemed unaware of a connection and my teen years were (GASP!) 30 some years ago. I am also hypothyroid which was discounted as a connection too. Anyone else have a similar experience with onset in teens....long break and recurrence at menopause? I am glad someone suggested a neuroendocrinologist. I didn't even know if they existed. I don't know if they are available through Kaiser but if not, I will bite the bullet and at change of plan time and pay the higher premium cost for the more flexible Kaiser plan and hopefully find a better doc. Thanks for everyone's help!

BarbG

By BarbG on Fri, 07/30/2010 - 7:06pm

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