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Catamenial Epilepsy: Finally a solution!

Fri, 07/10/2009 - 00:08

I just wanted to share this with other women on the forum as a possibility for them to entertain if they are one of those cases where their epilepsy is both idopathic and refractory. It took me a long time and several drugs/dosages/siezures to figure this out on my own. I have catamenial epilepsy, meaning that my menstration triggers my seizures. And for many women with epilepsy this is a trigger, but for me this was possibly the biggest one I could pinpoint. I suggested to my nuero that we approach the problem hormonally ontop of my Topamax, and he agreed. I have started taking the Nuvaring, which being localized doesn't interact with the Topamax very much and hasn't given me very many side effects as of yet, which is basically progesterone and a little estrogen.

 I am siezure free now for four months. I have had a few small auras, but that is nothing compared to the number of large seizures I would have every month over the last five years.

I would encourage women who are in similar circumstances to read up on catamenial epilepsy, track their period, and see if maybe there is an alternative present to all the drugs we have been taking. I would be glad to finally lower my Topamax if this works! Everytime I upped it I saw more side effects and minimal results, and thats considering it's been my best drug so far. 

  EDIT: I decided to edit this with an update since I got so many replies. I was on the Nuvaring (and 250 topamax succesfully) for a year and now moved on to the Mirena IUD which has progesterone in it. I am sz-free since that post, well over a year. For me at least, Mirena has proven a good option so far, although some research around the net makes me think it wont last the 5 years because Topamax metabolizes it faster. Still, it's the best option I have right now. A thing about catamenial E. I've come to understand from reading some of the literature...almost all women with E. will have more sz during certain cycles of her menstruation. Catamenial E. is a type of refractory epilepsy. It describes seizures that are uncontrolled by medication and are triggered by hormonal cycles, even when all other sz a patient can have are being controlled. So, I think making that assessment is a crucial one in whether birth control will be a good option for you. Secondly, most doctors are not aware of this, it involves fighting for it, educating yourself, and being self aware. Know what drugs you can and cannot take, know your birth control plans...its a challenge but very feasible to become sz free! I never thought i would have it with the number of sz and the duration I was having, but the same month I got on bc it just stopped.

Comments

Re: Catamenial Epilepsy: Finally a solution!

Submitted by danyellehannah on Mon, 2010-09-06 - 13:18

Hello! I've been reading post for a while now and figured id add my own and see where it gets me. Anyway, I'm very interested in this, although i'm not sure if my epilepsy relates to Catamenial Epilepsy, however, I have very similar symptoms... Since I was 13 years old, I started to have seizures twice a year. I am now 18 years old and Im still having GRAND MAL seizures two-three times a year, sometimes four. I have recently noticed that my past 4 seizures have been either the start of my menstral cycle or a couple days after. I'm not irregular though. I always get my period around the same time each month, and I never miss any months also.

 Everytime I have a seizure, I have about a 5 to 10minute warning (which I am very thankful for, because I do know people who have absolutely no warning) I feel confused, I don't exactly know where I am or what I was doing, I can't walk straight, I walk into walls, and then I fall. I sort of feel like i'm drunk and have absolutely no clue what is going on, what is happening to me or even who I am.

 I have been seeing a speciallist for about a year, i've had many EGG's and MRI's telling me that it is likely that I will still continue to have seizures. My doctor has put me on Lamotrigine. I take a 150 mg in the morning and then 150 mg again before bed. So far ive been taking them for about a year and still no results. It seems I may also be having more seizures since i've been taking it, which doesn't quite make sense. 

 Anyway, if anyone who has epilepsy and have similar symtoms to mine. Please reply! Especially if you've figured a cure or have any tips. I would really appreciate it!!

Hello! I've been reading post for a while now and figured id add my own and see where it gets me. Anyway, I'm very interested in this, although i'm not sure if my epilepsy relates to Catamenial Epilepsy, however, I have very similar symptoms... Since I was 13 years old, I started to have seizures twice a year. I am now 18 years old and Im still having GRAND MAL seizures two-three times a year, sometimes four. I have recently noticed that my past 4 seizures have been either the start of my menstral cycle or a couple days after. I'm not irregular though. I always get my period around the same time each month, and I never miss any months also.

 Everytime I have a seizure, I have about a 5 to 10minute warning (which I am very thankful for, because I do know people who have absolutely no warning) I feel confused, I don't exactly know where I am or what I was doing, I can't walk straight, I walk into walls, and then I fall. I sort of feel like i'm drunk and have absolutely no clue what is going on, what is happening to me or even who I am.

 I have been seeing a speciallist for about a year, i've had many EGG's and MRI's telling me that it is likely that I will still continue to have seizures. My doctor has put me on Lamotrigine. I take a 150 mg in the morning and then 150 mg again before bed. So far ive been taking them for about a year and still no results. It seems I may also be having more seizures since i've been taking it, which doesn't quite make sense. 

 Anyway, if anyone who has epilepsy and have similar symtoms to mine. Please reply! Especially if you've figured a cure or have any tips. I would really appreciate it!!

Re: Catamenial Epilepsy: Finally a solution!

Submitted by winged on Sat, 2010-10-02 - 12:45

Although I don't have exactly the same symptoms you do, my seizures come at exactly the same time of the month (either right before or right after the period) that yours do. Unfortunately I'm still at a loss because of crap doctor situation, although if I'm getting lots of sleep, drinking water, taking meds on time etc it seems to drastically reduce the likelihood that a seizure will happen. So definitely, if your period is coming up, take care of yourself.

It sounds at LEAST like you need to switch off Lamotrigine, or possibly reduce it and add another medication. If it's possibly exacerbating the seizures and isn't helping, SOMETHING needs to be done. It might be worth mentioning that you think it has to do with hormones. It's possible that Lamotrigine has some chemical interplay with your body that could make that more likely, but to be honest I don't know a thing about it. 

Although I don't have exactly the same symptoms you do, my seizures come at exactly the same time of the month (either right before or right after the period) that yours do. Unfortunately I'm still at a loss because of crap doctor situation, although if I'm getting lots of sleep, drinking water, taking meds on time etc it seems to drastically reduce the likelihood that a seizure will happen. So definitely, if your period is coming up, take care of yourself.

It sounds at LEAST like you need to switch off Lamotrigine, or possibly reduce it and add another medication. If it's possibly exacerbating the seizures and isn't helping, SOMETHING needs to be done. It might be worth mentioning that you think it has to do with hormones. It's possible that Lamotrigine has some chemical interplay with your body that could make that more likely, but to be honest I don't know a thing about it. 

Re: Catamenial Epilepsy: Finally a solution!

Submitted by lily49 on Tue, 2010-11-30 - 15:08

Danyel

Reading your post sounds extactly to what I went through until they were able to get mine under control. I have Catamenial Epilepsy. I am 27 now and I will till you my worst years with seizures were from 22 to 25. During one of those years I actually had 6 seizures in 9hrs and was in ICU for over a week. It took so many test and meds to finally find a solution, it was about over a 4 year search. My doctor tried so much to figure out a solution for me. He even sent me to another specialist that was suppose to know more about this type of epilepsy. Which turned out to be a waste of my time since he & his physician assistant didn't go all the way through my chart and wanted to put me on a med that made me worse.

I have been seizure free for almost 2yrs now.

I have to take seizure medication, which is Keppra and Zonisamide, plus a Deppo shot every month.

My doctor and OB talked and tried me having the shot only every three months like you are suppose to. The shot was not working I would still have my monthly cycle. Then they tried me having the shot every 2months and one off that kind of worked but not every month. So they went to 3 months as soon as they did that I was totally free of they little ones seizures and grand mil. My Doctor and OB gave it awhile and wanted to see if they could take me back down to two shots since the shot really long term at the level I am getting has side effects. As soon as they did that I had a cycle and had a seizure.

I hope this post helps you in find out what works for you.  If you have any questions about what I take or went through to find the solution just reply back to the post.

Danyel

Reading your post sounds extactly to what I went through until they were able to get mine under control. I have Catamenial Epilepsy. I am 27 now and I will till you my worst years with seizures were from 22 to 25. During one of those years I actually had 6 seizures in 9hrs and was in ICU for over a week. It took so many test and meds to finally find a solution, it was about over a 4 year search. My doctor tried so much to figure out a solution for me. He even sent me to another specialist that was suppose to know more about this type of epilepsy. Which turned out to be a waste of my time since he & his physician assistant didn't go all the way through my chart and wanted to put me on a med that made me worse.

I have been seizure free for almost 2yrs now.

I have to take seizure medication, which is Keppra and Zonisamide, plus a Deppo shot every month.

My doctor and OB talked and tried me having the shot only every three months like you are suppose to. The shot was not working I would still have my monthly cycle. Then they tried me having the shot every 2months and one off that kind of worked but not every month. So they went to 3 months as soon as they did that I was totally free of they little ones seizures and grand mil. My Doctor and OB gave it awhile and wanted to see if they could take me back down to two shots since the shot really long term at the level I am getting has side effects. As soon as they did that I had a cycle and had a seizure.

I hope this post helps you in find out what works for you.  If you have any questions about what I take or went through to find the solution just reply back to the post.

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