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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 kateunc33 on Mon, 2011-05-02 - 21:53

I'm so thankful for reading all of your posts and because of them I too finally found the type of epilepsy that I have and how to go about controlling them. My first seizure started when I was 24 and it was a grand mal, went to the ER and had a CT scan done, everything was normal. I just thought it was a fluke occurrence and probably wouldn't happen again, but following month right around my period it happened again and this time I had an aura...so I followed up with a neurologist. He put me on Keppra 500mg and I went seizure free for 2 years.

 Started having grand mal seizures again at 26, it was like clock work...happened around my menses, one every month. A week prior to my period I'd feel confused, difficulty with word finding, feel an "out of body" experience similar to depersonalization disorder, certain light and particularly fluorescent light was more irritating to me, eyes would twitch, cold sores would come out, etc...I could go on and on. I've had so many different experiences prior to these seizures. I dealt with it for about 2 years now. I'm 27 now, will soon be 28 and haven't been driving for almost 2 years because of my seizures, waiting to be seizure free for 6 months (so far it's been 3 months, crossing my fingers!)

I'm taking Lamictal XR, Keppra, and Zonegran. I also was lucky enough to see an excellent neurologist/neurosurgeon that found lesions in my temporal lobe and did several MRIs and EEGs including an invasive one and found that I had temporal lobe epilepsy, was having approximately 45 seizures a day withouth me knowing. They found that brain surgery could benefit me to about 75% chance of no longer having seizures and I went for it. Best decision I ever made. I'm clear-minded, much sharper, don't have that depersonalization feeling anymore, but I've had surgery only 3 months ago. I had a temporal lobectomy and they took a good portion of my lesions out which was just dead tissue that was no good for my mind. I'm now back to work, able to concentrate, have more energy, not so tired and don't feel like a zomby anymore. It's amazing!

The only thing I do wish to fix is my hormone levels because this is the first month since my surgery that my auras are coming back and everything I previously explained is back that occurs a week prior to my seizures. It's not as bad, but it's there and it is a week prior to my period. My neurologist increased my zonegran as I am still on all of my meds for 6 months post surgery and then they discuss gradual decrease, but he also recommended I see an OBGYN to get on some deprovera. He didn't mention anything about the "type" of epilepsy I may have, however; but I think you've given me the answer!

 Thanks for all of your posts, they're greatly appreciated!!

I'm so thankful for reading all of your posts and because of them I too finally found the type of epilepsy that I have and how to go about controlling them. My first seizure started when I was 24 and it was a grand mal, went to the ER and had a CT scan done, everything was normal. I just thought it was a fluke occurrence and probably wouldn't happen again, but following month right around my period it happened again and this time I had an aura...so I followed up with a neurologist. He put me on Keppra 500mg and I went seizure free for 2 years.

 Started having grand mal seizures again at 26, it was like clock work...happened around my menses, one every month. A week prior to my period I'd feel confused, difficulty with word finding, feel an "out of body" experience similar to depersonalization disorder, certain light and particularly fluorescent light was more irritating to me, eyes would twitch, cold sores would come out, etc...I could go on and on. I've had so many different experiences prior to these seizures. I dealt with it for about 2 years now. I'm 27 now, will soon be 28 and haven't been driving for almost 2 years because of my seizures, waiting to be seizure free for 6 months (so far it's been 3 months, crossing my fingers!)

I'm taking Lamictal XR, Keppra, and Zonegran. I also was lucky enough to see an excellent neurologist/neurosurgeon that found lesions in my temporal lobe and did several MRIs and EEGs including an invasive one and found that I had temporal lobe epilepsy, was having approximately 45 seizures a day withouth me knowing. They found that brain surgery could benefit me to about 75% chance of no longer having seizures and I went for it. Best decision I ever made. I'm clear-minded, much sharper, don't have that depersonalization feeling anymore, but I've had surgery only 3 months ago. I had a temporal lobectomy and they took a good portion of my lesions out which was just dead tissue that was no good for my mind. I'm now back to work, able to concentrate, have more energy, not so tired and don't feel like a zomby anymore. It's amazing!

The only thing I do wish to fix is my hormone levels because this is the first month since my surgery that my auras are coming back and everything I previously explained is back that occurs a week prior to my seizures. It's not as bad, but it's there and it is a week prior to my period. My neurologist increased my zonegran as I am still on all of my meds for 6 months post surgery and then they discuss gradual decrease, but he also recommended I see an OBGYN to get on some deprovera. He didn't mention anything about the "type" of epilepsy I may have, however; but I think you've given me the answer!

 Thanks for all of your posts, they're greatly appreciated!!

Re: Catamenial Epilepsy: Finally a solution!

Submitted by tp727 on Sat, 2011-12-03 - 09:14
I started having these seizure in March this year, and went to a wack job neurologist twice for them and he didn't have a clue! When I brought up my research on the catamenial epilepsy, he didn't want to hear a thing about it. I have normally 1 a month either right before my period or during it. I had one last Wednesday and then again this Thursday.. I have had so many trips to the E. R that I just want to this to be all over. I am going to my OBGYN, next Friday and I am going to plead with her to do an hysterectomy (sp). What I have read that is usually the best way to fix this awful problem. I have four children and am 40 years old and don't plan on having anymore. And my period is starting to mess up as well. So I am hoping she does it.  My last trip to the E.R which was a couple nights ago I stil haven't recovered, they gave me way to much valium and Cerabyx (sp) on top of 20 mg of Ativan. So I am still so tired and just out of it. I normally don't take any seizure meds, I tried them once and I was a walking zombie.. and I am a single mother and can't raise my children like that. It was wonderful to read all your stories to know that I am not alone with this. I just want it to be over.

Re: Catamenial Epilepsy: Finally a solution!

Submitted by wd123 on Sat, 2011-12-03 - 21:59

I have been tracking my periods for a short while after the last couple have oddly turned up on my time of period - though conincidence I dont know. I also know here that mine stopped pretty much for 7 years and then started again and I was on the pill. I have no proof at the moment as I am waiting to see what develops and I have no memory of past 10 years etc when things were happening in relation to my period. Things happened as well around the birth of my children.

Yes - the period times were all stressed related, lack of sleep and I have checked my diary and it really did not suggest a pattern of periods ie month apart - though I was not tracking my period at the time. I oddly remember the hospital trips, I was having my period or births etc. Could be major conincidence however, the last hospital trip where I was having period has made me truly suspicious it could be this. I have also read on this post about ovulation time, so there is this to consider.

I have too been diagnosed with many things - seen many drs, different meds which have failed and still more meds to go. I came off the pill some time ago and have not really been back on it and I clearly remember only taking 1 type of pill because of mood swings. It was shortly after stopping taking the pill, that I started with seizures. This could all be a major conincidence but has made me suspicious about it because of the comments from many here. For me there is no - oh I am on my first day and having a seizure - its not like that.

I also have a brain injury but they consider me stressed (I stopped work, volunteer activities, stressful things) and seeing stress specialist now but I have done this in the past and it has not worked, as I have had seizures during all of these stress freeing activities.

I am thinking here, I should just bite the bullet, go back on the pill and give it a shot. I have a new neuro coming up. I cannot handle the seizures and they are getting worse not better, to the point where I can see the differences now in the seizure and not so weirded out by them.

They have suggested I "may have" or probably complex partial seizures, disassociations, mental health issues, stress induced seizures, the list goes on here but never any diagnosis. I am doing less now that I ever have and avoiding stressful behaviour but I feel that ultimately if this is brain injury, this may not help. My neuro has commented on things and I have been told to go to physcologist may times (i feel I have spent my life talking there - with no real action happening in reduction of seizures. My aim is again to have seizure free life, like I have done in the past - where I was working, doing other things, taking care of kids etc with no seizures like normal people do.

Thus far I have tried sodium valproate ie epilium, tompomax, lamictal (rash appeared there) and phenobarb (serious side effect there with uncontrollable mood swings  extremely dangerous med for me). I have found the only thing that works 100 percent is clomazepam, because I am alseep - and this is related to sleep. I had high hopes for phenobarb because of the sleep factor but uncontrollable mood swings on taking that med made me say no thanks to that. Of these meds, epilium was working the best, with less side effect however, tomopamax worked well but side effects extremely bad to point where i was having difficulty walking and with my gait. I ended up having large seizure on that one - and came off of it - and was thankful.

I have also altered in my life bad friendships, workplaces, choosing not to work, searching for better drs, and researching various topics such as epilepsy, the brain, seizures etc and speaking to others on net and within groups and various associations.

I have also lost a number of jobs with their unfair situations of finding out I have seizures and then pretty much making it "hard" for me to stay or calling meetings etc about my condition. I have also missed out on free counselling because they did not have a specialist for me. I found that rude and something I wish to follow up as it was specialist counselling center - and I was not allowed in until after I had a drs appoint and diagnsis confirmed. It is strange to sit there and listen to their musing about something they know little about - in some of these meetings, I get told oh such and such died of seizures - very helpful. I am at the point now, where I do not tell the workplace, because I rarely have seizures and  under law I dont have to anyway where I live. I only told last workplace just in case and I liked the people there and thought it fair to tell them.

I have also had workplaces completely ok with it - and not make a hassle nor tell the whole staff and ask what to do etc. I can still work but choose not to at this time.

Thanks

 

  

I have been tracking my periods for a short while after the last couple have oddly turned up on my time of period - though conincidence I dont know. I also know here that mine stopped pretty much for 7 years and then started again and I was on the pill. I have no proof at the moment as I am waiting to see what develops and I have no memory of past 10 years etc when things were happening in relation to my period. Things happened as well around the birth of my children.

Yes - the period times were all stressed related, lack of sleep and I have checked my diary and it really did not suggest a pattern of periods ie month apart - though I was not tracking my period at the time. I oddly remember the hospital trips, I was having my period or births etc. Could be major conincidence however, the last hospital trip where I was having period has made me truly suspicious it could be this. I have also read on this post about ovulation time, so there is this to consider.

I have too been diagnosed with many things - seen many drs, different meds which have failed and still more meds to go. I came off the pill some time ago and have not really been back on it and I clearly remember only taking 1 type of pill because of mood swings. It was shortly after stopping taking the pill, that I started with seizures. This could all be a major conincidence but has made me suspicious about it because of the comments from many here. For me there is no - oh I am on my first day and having a seizure - its not like that.

I also have a brain injury but they consider me stressed (I stopped work, volunteer activities, stressful things) and seeing stress specialist now but I have done this in the past and it has not worked, as I have had seizures during all of these stress freeing activities.

I am thinking here, I should just bite the bullet, go back on the pill and give it a shot. I have a new neuro coming up. I cannot handle the seizures and they are getting worse not better, to the point where I can see the differences now in the seizure and not so weirded out by them.

They have suggested I "may have" or probably complex partial seizures, disassociations, mental health issues, stress induced seizures, the list goes on here but never any diagnosis. I am doing less now that I ever have and avoiding stressful behaviour but I feel that ultimately if this is brain injury, this may not help. My neuro has commented on things and I have been told to go to physcologist may times (i feel I have spent my life talking there - with no real action happening in reduction of seizures. My aim is again to have seizure free life, like I have done in the past - where I was working, doing other things, taking care of kids etc with no seizures like normal people do.

Thus far I have tried sodium valproate ie epilium, tompomax, lamictal (rash appeared there) and phenobarb (serious side effect there with uncontrollable mood swings  extremely dangerous med for me). I have found the only thing that works 100 percent is clomazepam, because I am alseep - and this is related to sleep. I had high hopes for phenobarb because of the sleep factor but uncontrollable mood swings on taking that med made me say no thanks to that. Of these meds, epilium was working the best, with less side effect however, tomopamax worked well but side effects extremely bad to point where i was having difficulty walking and with my gait. I ended up having large seizure on that one - and came off of it - and was thankful.

I have also altered in my life bad friendships, workplaces, choosing not to work, searching for better drs, and researching various topics such as epilepsy, the brain, seizures etc and speaking to others on net and within groups and various associations.

I have also lost a number of jobs with their unfair situations of finding out I have seizures and then pretty much making it "hard" for me to stay or calling meetings etc about my condition. I have also missed out on free counselling because they did not have a specialist for me. I found that rude and something I wish to follow up as it was specialist counselling center - and I was not allowed in until after I had a drs appoint and diagnsis confirmed. It is strange to sit there and listen to their musing about something they know little about - in some of these meetings, I get told oh such and such died of seizures - very helpful. I am at the point now, where I do not tell the workplace, because I rarely have seizures and  under law I dont have to anyway where I live. I only told last workplace just in case and I liked the people there and thought it fair to tell them.

I have also had workplaces completely ok with it - and not make a hassle nor tell the whole staff and ask what to do etc. I can still work but choose not to at this time.

Thanks

 

  

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