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Catamenial Epilepsy: Finally a solution!

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!

cogratulations I hope your luck holds out.Praise be the lord.

Re: Catamenial Epilepsy: Finally a solution!

I opted for a IUD as my form of contraception.

Depo Made my T/C's much worse The IUD gives a very low dose of localised prgestrorone into you uterous and can remain in for 2 years. It is safe unlike the old copper ones from the 70'.s. You don't even know it's there.

It unfortunatly hasn't stoped my T/C's but it's a but better option than the pill for me.

Looks Like I'll have to stick with the Topomax.

Good luck to those that try the Novo Ring I Hope it Works

Re: Catamenial Epilepsy: Finally a solution!

I realized that my seizures started around the time of the month as well. But, I was put on medication, and was seizure-free until recently. Maybe I'll look into that!

Re: Catamenial Epilepsy: Finally a solution!

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!

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!

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

 

  

Re: Catamenial Epilepsy: Finally a solution!

I'll be short and sweet :)  I started having seizures when I was twenty three the week before my period every month like clockwork.  It just so happened that this began right after I quit taking Ortho-Tricyclne Lo.  Doctor after doctor just ignored me.  For seven years I have been on Lamictal and no doctor will change it!!!  In addition the secondary med has been changed about 10 times.  After all of these meds didn't control the seizures the doctors decided BRAIN SURGERY was my next best option.  Note that the entire time I'm telling them Hormones, Hormones, Hormones!!!  Now that surgery didn't work I've been seeing a new neurologist who has diagnosed me with catemenial epilipsy and has put me on the depo shot.  Things have gotten a little better but I'm still not cured.  He wants to wait to make any changes, he says "lets give it time to kick in".  My advice to any woman dealing with this is to get second and third opinions before commiting to one doctor!!! I can never get the big portion of my temporal lobe replaced...

Re: Catamenial Epilepsy: Finally a solution!

Oh, I am so hopeful at this moment!  Just joined today....identified mine as catamenial epilepsy in the spring of '09 after a year of 4-5 seizures a month during my cycle.  We started the Depo shot in May and have had no change YET, but apparently my hormones were more out of whack than we realized.  They feel it will take 2-3 shots before I see a change; I had 3 TC's last Tuesday after my 2nd shot the Sunday before.  I was losing hope for this "treatment" until I saw your post!!  Thanks for sharing!!!!  Maybe I just have some really strong hormones.  lol!!  :) 

Re: Catamenial Epilepsy: Finally a solution!

I'm glad to finally see a responce like yours because I wanted to find others like me and hopefully we could all learn something from each other.

I suppose all bodies are different. Your hormones might be really strong! But as I have been told, we have epilepsy that is worsented by hormones- not hormones that cause epilepsy. You might not find an 100% solution depending on your sz. I beleve 60% of women with E have catamenial siezures. For me though these seems to be the main trigger.

And for you it might be as well but- are you on any anti-convulsants as well? I take Topamax concurrently 250 mg a day. I believe it is the combination of both that helps. 250 mg a day without the hormones was NOT effective. Likewise, hormones alone might not be eitheir. I urge you to consider hormones as perhaps a concurrent treatment. I know Depo can be done alone, but perhaps in our cases where breakthroughs still are frequent, it should be viewed as a powerful add-on therapy to conventional anti-convulsants as opposed to monotherapy alone. 

If Depo is not working...and you are on an anti-convulsant you trust, maybe something of Depo doesn't agree with you. As odd as that would be...you could explore other progesterone, (*very* low estrogen birth control options, since Depo is the only progesterone only option) to see if there is a difference. I opted out because of weight gain with it)

Good luck. Let me know what happens. 

 

 

Re: Catamenial Epilepsy: Finally a solution!

Holy cra*! Three in one day? The best I have ever done is one grand mal in one day and the aftereffects were a whopping headache and muscle soreness that felt like I had run two marathons in a row. I can't even imagine what three would feel like.

Thank god that the only hormonal thing we men have to suffer with is stupidity.

Matt

Re: Catamenial Epilepsy: Finally a solution!

Wow, I am very excited to see your post and hear that the nuvaring has been working for you so far!!  Last week i went to the doctors and she wants to start me on the Nuvaring.  I have been hesitant wondering how it would work for me seeing how I am on tegretol 200mg 3x's a day.   I have been thinking about it all weekend.  My seizures are for the most part under control. however, when I do have them for the most part they are around that time of the month.  Thanks, for giving me some hope, now I think I just may give the nuvaring a try!!!   good luck to you on being seizure free!! Anything is possible, god bless

Re: Catamenial Epilepsy: Finally a solution!

Hello! I was diagnosed with epilepsy approximately 7 years ago. It took my doctors about 3 years to diagnose it. Why? Because at first, I was not falling out on the floor, having convulsions, and had no known head injuries. My epilepsy started with paralisis of my arm. For about 3-4 months at a time, my right arm would become paralyzed, and then it would start working again. This happened several times over 3 years. Finally we talked to someone else who had the exact same symptoms, and he let us know that it was because of epilepsy. Shortly there after, I started going into convulsions.

Anywayz, my seizures episodes ALWAYS occur at the offset of my mensturation cycle. I have indescribable cramps, and then begin to vomit. Over the last several months, I have been taken pain reliver, along with my Trileptal for about a week leading up to my cycle. This has controlled the cramps, and kept me from getting so sick and beginning to convulse. Hope that helps somebody!

Re: Catamenial Epilepsy: Finally a solution!

Wow, I'm so glad to find a forum thread like this!

I've been diagnosed with epilepsy for a long time - I had absence seizures when I was a very small child but appeared to have "grown out of them" and then was re-diagnosed with JME when absence and myeclonic all started popping up around age 13. 

I was initially put on Depakote, which helped some. However, my seizures were never satisfactorally controlled.  When we moved, my new neurologist put me on Clonazepam, then switched me to Zonegran and Clonazepam. What was suspected (at first before the move and then after) - especially because my mother had had absence seizures
in her early adolescent years and her sister had life-long TC seizures, both catamenial - was that the bursts
of seizures I was having were during
my cycle.

When we discussed this with my neurologist he seemed at first dubious (seemed to think this was relatively rare or unlikely -- seems more likely that he hadn't read much about it) but accepted that we should try changing my medication. He first upped my Zonegran -- which was a terrible idea, made me about 10 times more out of it -- and then switched to a higher Clonazepam dose around my period, which was fairly but not completely effective.  However, he wasn't completely satisfied with this and wanted me to try birth control, a solution I never got around to because I had slightly high blood pressure at this time and my gynecologist refused to put me on birth control with high blood pressure [she also had never heard of it as a treatment for epilepsy].

I switched later to an adult neurologist, a woman, who had heard of this (again never gave me a name but was immediately confirming of the idea).  We never figured out with her what she wanted to do, although she seemed content with the idea of upping my Clonazepam.

Right about the time that I moved to another state and graduated college, thus losing my medical insurance (...let me tell you, that has been a CARNIVAL of fun times), I had my first ever tonic-clonic seizure. I don't know if they can be brought on by stress or not - since everyone else in my family who's had seizures has had them brought on at a time of hormone change, and mine haven't.

Since then I've had two more - love those unexpected ER visits and freaking out the new coworkers. The first was not during my period although it may have been during an ovulation cycle and was definitely during a period of not enough sleep and dehydration. The second two were both on the last day of my period - that transition period. The second two times I've also experienced what must be partial and some kind of secondary generalized seizures - the third time repeatedly and requiring repeated doses of Ativan to control them - after the TC was over. When I came home I had a migraine bad enough to vomit and my cycle is often independently marked by migraines.

Whoa. Too much information. Can you tell I'm a newbie here on the boards? I don't have too many people to share my story with. In any case, I'm glad to know there's a name and a possible solution. I'll have to wait until I have medical insurance -- ER visits alone are some pretty bad debt for me --  but the thought that birth control could maybe put an end to the fear I have every time I have my period is enough for me.

Re: Catamenial Epilepsy: Finally a solution!

That's what were here for, to share stories and let it out. :)

Alot of doctors aren't very well aware of catamenial E. despite how common it is, and even less research is dedicated to it.

Sz don't have to be during your period. Everyone has different time frames, but consistent times frames it seems. Perimenstrual (C1), Periovulatory (C2), and Luteal (C3). As I mentioned, mine would always start midcycle until my period. I have never seized during my period, or rarely if I have. But, I have read that women have epilepsy and hormones exasperate it, not cause it, so you can have other triggers, other causes. BC might not be the answer for everyone then, some people can then keep having sz I suppose. But if there is a strong correlation, it is definetly worth a shot.

We need to keep you out of the ER! Although, if I may suggest, maybe get you to a free clinic or something? If not, the cost of getting you to a doctor and on treatment seems a worthwhile sacrifice in light of another sz, another trip to the ER. That would be much more expensive in the long run...

Re: Catamenial Epilepsy: Finally a solution!

Hiya all, This site has basically changed my life in a heartbeat, I have had epilepsy for approx 12 years at the beginning i was unconcious for up to 13 hours we are now down to 5 or 6 minutes before i wake up although i am still groggy and dont remember a lot apparently i do make sense as soon as i wake up.

I have recently come to the conclusion that my menstrual cycle plays a huge part in my seizures, today was my first seizure in a year, I have extremely difficult periods and a lot of very harsh symptoms for 2 weeks before my week long cycle, I have begged and pleaded with doctors to check if there is something wrong with me hormonally as my menstual symptoms are awful, I get such severe abdominal pain that i sometimes vomit, I have slurred speech, i walk into things, I have soreness in every part of my body, sometimes i can't sleep and sometimes i cant wake up, I get raging headaches, coldsores spots cracked nipples, severe mood swings that have caused serious problems in my marriage and although people may think that these syptoms i discribe are part and parcel of being a woman, i have to live with them for 2 weeks out of the month, every one of them all day every day which is makin my life unbearable, so i am now on day 2 of y period i go into work and have a seizure, i now have a black eye 3 bumps on my head, a bruised chin an extremely buised and painful elbow, a dislocated shoulder buises all over my legs neck and back and an extremely sore tongue.

I feel sorry for anyone who has to go through this more often than me but i just feel that my doctor is not taking my condition seriously as i think that whatever is wrong with the hormones in my body are causing my severe menstrual symptoms and the seizures.

How do i get them to take me seriously and recognise that i seem to have this catamenial epilepsy and get them to treat me accordingly

any hints or tips greatly appreciated

Re: Catamenial Epilepsy: Finally a solution!

Glad someone is finally discussing this.  I had my first grand mal seizure back in Oct. 2001, the day before my husband and I were moving into our new house.  Yeah!!  I went through all the usual test and was totally fine after.  I then had another one in March of this year.  I started having one each month after.  Unfortunately my husband had just changed jobs and we didn't have insurance yet.  The thing we kind of figured out though was that I was having them right around the time that my menstrual cycle started.  My trigger was that I felt like I was having a hot flash.  I've always had irregular periods, I would skip months and sometimes even have 2 in one month.  I used to be on birth control to regulate me, but I was taken off them when I started to get regular on my own.  When we finally got insurance I went to my neurologist and he slowly got me started on Keppra, 1500 mg a day.  I had another seizure after being on it for a month.  We upped it to 2000 mg a day, but I was still having auras(sp), those hot flashes.  He then put me on 300 mg of Vimpat also.  Things are working out well with that.  There are days when I'm a little cranky, but I have been taking a multi-vitamin and extra B vitamins to help with that.  I have to get to my gynecologist to talk about this though and see if he might want to put me back on the birth control.  Want to see if he has heard about this.  If not I think I'm changing doctors to someone that has heard about it.  Going to discuss it with my neurologist and see if he can reccomend someone who does.  Have to see him next month.  Wish me luck!!

Re: Catamenial Epilepsy: Finally a solution!

I also always had very long, irregular cycles. I think birth control evens those out and that helps alot. I think that if your having sz every month, thats a good sign of catamenial E. Mine started at midcycle as small, quick sz and progressively got worst, more intense, longer (almost status-like) until my period started -and suddenly they would stop. I really would recommend working with a nuero thats willing to work with you. However, neither my nuero nor my ob/gyn had much of an idea of how this worked. I did the research online and pretty much advocated for myself. You need to find doctors that will listen and trust you.

At this point, I am sz-free for close to a year! I recently switched to a hormonal IUD to see if that would be a better option.

I hope this works out for you! I know more women could benefit from this if they knew it was an option.

Re: Catamenial Epilepsy: Finally a solution!

I've been seizure-free since I've combined a hormone balancing weight-loss pill (myslimquick.com-under weight loss caplets in light blue) and Keppra xr and zyprexa.

Re: Catamenial Epilepsy: Finally a solution!

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!

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!

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.

Re: Catamenial Epilepsy: Finally a solution!

Hello, you're  me all over again.!! I also started at 13 I am now 36 yrs old, Yes over 20 yrs of meds and no cure...except not sure if anyone has experienced this, all episodes, spacing out, GranMals,Petitmals,migranes stopped only when I was pregnant! I take Lamictal and Depakote (I tried Birth Control years ago didnt really work well.) I feel I ran into certain doctors not taking my life and illness serious enough so in turn I feel I have suffered all these years. Never had a driverslicense tried working cant hold one down, tried school never could finish, memory is bad. I honestly have lost alot of memory Sux but what can I do. I was diagnoses with various types. Dunno if some of you out there have relatives with epilepsy but I do, my grandmother, and uncle have them. Mine are similiar to what my grandmother had. Her doctor gave her a hysterectomy and she became siezure free. I am hoping on going that route soon. I hate feeling like im living in a bubble. I had a siezure on my 21st. Bday and broke both my front teeth. and have had numerous falls last one was down a flight of stairs hurt myself bad! Last resort is hysterectomy I asked for it years ago at age 21 and they told me no! I was to young. If they had did what I wanted all this pain and fear that I have suffered all these years would have been prevented. Ladys Never stop trying and never get hushed by any doctors always get that secound, third etc opinion.new doctor tomorrow for me, and I am insisting on a hysterectomy! wish me luck

Re: Catamenial Epilepsy: Finally a solution!

Hi Danyel, You sound like my daughter who also has seizures. She has started on bioidentical progesterone cream and her lamotrogine (she has had more seizures since going on lamotrogine than ever) She did not have a seizures last month and none so far this cycle. I am hoping that the progesterone will help, it is not synthetic but bioidentical progesterone cream that she uses twice a day. How are you doing? Have you tried anything that is working for you?

Diane

Re: Catamenial Epilepsy: Finally a solution!

Hello Everyone,

 

So glad people are talking about this. I truly beleive that this is the ty pe of E that I have.  I am not taking any meds and do not see a Dr. because I do not have insurance so I just kind of suck it up. *smile* I have a grand mal once per month in my sleep when I am ovulating. This began a little over a year and a half ago. No warning. I am a 45 year old woman. My whole life has been turned upside down! I would love to find a solution.

My query is....what would happen if I were to get a complete hysterectomy ? I know that some are trying birth control methods like neuvo ring and things. But, what is there were no hormones to fluctuate? 

Any ideas? Thanks so much for this discussion. 

 

ShakinWillow

Re: Catamenial Epilepsy: Finally a solution!

You dont necessarily want to undergo something like that if it's not necessary. You need estrogen in your body. Hormones have many functions, and estrogen has properties in cardiovascular and bone health apparently. Inducing early menopause isnt ideal. And with so many options, Im sure something might help you without such a drastic move.

I understand the no insurance, I do, but there are services always available. You dont need to suck it up. You just need to do a little research in your area. :) They might be slow, and appointments might take forever, but its better than nothing. Allowing E to go untreated can cause it to progress so you need to get yourself looked at.

Re: Catamenial Epilepsy: Finally a solution!

I am currently 40 years old.  My symptoms began right around the time I turned 38.  I began having light headed spells, problems with depth perception, speech difficulties and even problems with movement for several days at a time.  I resembled a stroke victim.  It would occur for 4-5 days and then abate for a week - just long enough for me to hope it was a bad dream and then return the following week.   The only diagnosis I could get was conversion disorder - even after a week's stay in a research hospital.  I continued to search for the true cause of my problem for a couple of years.  Fortunately along the way, I had some tests that led me to a physician that was finally able to diagnose catamanial epilepsy.  A Naturopath did some hormone testing and I had a PET scan that showed temporal lobe hypometabolism. 

In December 2009, I read a paper on line about natural progesterone treatment for catamenial seizures and went to the health food store and bought a tube of Emerita ProGest cream.  Within 15 minutes of rubbing the cream on my skin, my symptoms started abating.  It was a miracle!  I found a neuroendocrinolgist that was finally able to give me an accurate diagnosis and work with me on hormonal treatments to keep my seizures under control.  The first step is to chart them correctly.  Had I known this, I would have saved myself lots of time and grief.  If the first day of your cycle is Day 1, begin charting your symptoms by this and begin all over again when you get your next period.  Catamenial seizures occur when estrogen levels are high.  This is usually during ovulation and just prior to menstruation.  Charting is critical to determining if hormones play a role in seizures and seeing if there is a pattern to your symptoms. 

I also began paying attention to my triggers.  I could almost have a panic attack walking into a big box store when I was symptomatic.  Turns out, the flourescent lights were causing me to feel weird.  Now I wear sunglasses and I don't have any issues.   Coffee, low blood sugar, lack of sleep.. it helps to figure out what makes you feel odd and take action to avoid the situations you are able to control.  I could feel fine at home and get to a Dr's office and start feeling weird.  This would make me second guess my mental state and my opinion that I did NOT have a conversion disorder.  Turns out, most physicians have flourescent lights in their offices!

As for treatments, unfortunately, a Mirena IUD did not work for me.  ProGest cream works, but I have lots of breakthrough seizures.  My neuro prescribed Prometrium.  I was taking as much as 1600 mg a day.  The side effects were awful.  My seizures were reduced but still not under control.  Finally, in August of this year, I began getting Lupron Depot shots.   I just had my third one.  Since the first shot, I have had two seizures.  I was having 40-50 every 23 day cycle.  The Lupron induces a reversible menopause.  It has side effects also, most noticeably lots of hot flashes,  but it seems to be working and I feel hopeful that I have a chance at a life again.   A few more months with this successfully working and I will opt for a hysterectomy and hopefully be able to put this chapter of my life behind me.

I see young women and I think, "why didn't anyone tell me being a woman could be so difficult?  How can a hormone cause me to feel so odd and lose touch with normalcy?  How can most physicians have no clue that hormones can cause such extreme symptoms?" Perhaps it is better I didn't know this would be my fate.  I am angry that I suffered as long as I did.  I saw over 45 physicians in two years and no one was able to give me anything but platitudes, referrals and offers for prescriptions for antidepressants.  

I work daily on focusing on the good things that have occurred as a result of my illness.  The friends that have extended themselves and the opportunities I have had to be humble and appreciative of small kindnesses.   I feel strongly that our plight needs to be more public.  It makes me sad to think other women are suffering.   I hope this email helps someone else even if it is just the comfort that you are not alone.

Re: Catamenial Epilepsy: Finally a solution!

Thank you for your post. Its true, I wish more people knew about this because I feel others are suffering and are not receiving adequate care from doctors. It is maddening to think our little hormone fluxuations could cause such craziness!

Can I ask, everyone who has mentioned using progesterone and still having breakthroughs, are you also on a AED? or do you rely on hormones? From the research I have done I understand that using progesterone as monotherapy is not the most effective route. I continue my regular drugs and really I couldn't do away with them even though I feel as if the progesterone does all the work. If you are, disregard me, if you aren't and haven't tried it, I would strongly urge you to discuss a low dosage with your doctor. I offer this only if you don't continue on with your planned hysterectomy. Regardless, I wish you luck.

Re: Catamenial Epilepsy: Finally a solution!

Your statement about the big box stores is ILLUMINATING...no pun intended. Years ago I was in a Wal-Mart in our college town getting pads etc (really the only reason I went there) and would always have terrible panic attack and feeling weird, and now when I think about the physical symptoms it's not unlike the way I feel pre- and post- seizure.

I work at a Best Buy and get a lot of migraines there too, but EVERYONE complains about the lights, so I'm not sure that's about symptoms...our lights just suck.

Does anyone have any tips for charting symptoms? I keep trying to keep a good log, but I'm terrible at remembering to do it. (I know the answer 's going to be "just make it a habit", but, y'know, anything helps.)

Re: Catamenial Epilepsy: Finally a solution!

     Since 2004 I have been having terrible seizures, at first 3-4 times a year. Now it is almost monthly. It took my good hubby to point out , after a year or so, they always came near my menses or ovulation. 7 years and numerous useless trips to the hospital  later, I came upon these websites. Read your stories...wondered how you cope. Thank goodness I get the rare luxury of being a stay-at-home-mom ( my last one just turned 18 ) !! I have had to restart my life over and over, always being given painkillers and antidepressants. I am only in pain and depressed because of the seizures !! Now I think I've found something. My eye twitches "here and there"  ALOT. Now when I think back ( and that is hard cos I've lost soooo much ) it happened near the episodes. If I was alone I knew cos i bit my tongue. Short of finding help for myself, I search for a warning to help others. I am going to try some form of progesterone med. Not sure yet. Gave up on any docs 2 years ago, so I have not been at all. My poor family just toughs it out with me. I have broken all my teeth, lost most of my memory, have "not much at all" shortterm, and I have had to

 rtype cos I turn words around now......see, I was not noyning ,ugh,paying attention. It could be worse. I have read your story & tthat make me feel bad for you.....No one should feel alone.....you made me cry,cos I did feel all alone, now I know I am not ! thanks so much-Judy

 

Re: Catamenial Epilepsy: Finally a solution!

After having E for 32 years, seizure free for about half of that, I started having seizures again. When I first started them again it turned outthat I had an ovarian cyst. After being given provera it went down and didn't have any for over a year. Then started having them again. Was tested for another cyst, didn't have one. I had the seizure during my ovulation cycle. Was also tested for premenopause since I was 45. My levels did not indicate that either. That was in Sept. I had another one in Jan. Again during ovulation. Then in March, during ovulation. My gyn says I have perimenopausal dysfunction uterine bleeding. Which means I am releasing an egg along with estrogen, but not putting out the Progestrone . He put me on a low dose of Provera once a day. But I read that it is better to be on natural hormones. So I too bought pro-gest. How did you take it? Did you go by the directions or take it every day.
I have not had any seizures on the provera, but have had two auras. I hate having them though because I know a seizure is coming up.
I'm just not sure how to take this cream please let me know how you did it. Thanks

Re: Catamenial Epilepsy: Finally a solution!

Thank you for your post, it's very helpful! Like me, it seems you and several others present have tried many therapies. A lot of promising treatments have been mentioned but unfortunately I do not have the health insurance to cover many of them right now. I'm interested in hearing more about your experience with ProGest. Is it over the counter? Costly? What type of breakthrough seizures were you having?

I hope you are doing well! Thanks!!!

Re: Catamenial Epilepsy: Finally a solution!

You can purchase Emerita ProGest over the counter.  The best price I have found is through Amazon.com they have a deal that gives you 15% on Subscribe and Save.  It is reasonably priced - especially considering its benefits.  I found that a little bit could make a big difference.  Especially if I spaced it out and rubbed small amounts on several times a day.   15 minutes after application, it would be like a fog lifting.  3-4 hours later, I could feel the fog rolling in.  Always good to stay on top of it.  This would be true of any medication. 

If you don't have health insurance, this would be an inexpensive thing to try.  Topical progesterone creams available OTC are not regulated.  Emerita is a woman owned company that has been in business for 40 years and manufactures superior products.  If you purchase just any topical progesterone cream at the health food store, you might not be getting what is advertised.  I feel confident Emerita brand is consistent quality.   You will have to experiment to find what dose is good for you.

Good luck!

Re: Catamenial Epilepsy: Finally a solution!

It has been a long time since I posted an update on my seizures.  I had a total hysterectomy in May 2011.  This really helped, but unfortunately, did not completely solve my problems.  The severity of my seizures is greatly diminished, but they still occur for several days every two weeks.  It seldom affects my speech and my tolerance of florescent lights and over stimulation is much better, but I have difficulty reading and thinking words for days at a time.  Then the black cloud lifts and I am fine again for another two weeks.  UGH!  My neurologist has put me on Gabapentin for simple partials and hot flash reduction.  It has improved the hot flashes, but the cycle persists. 

I would like to think as I get older, it will continue to abate.  For now, I practice living in the now and hold on the fact that I am much improved.  I am so happy to hear that others have found success with birth control!  Keep up the positive thinking and research!

Re: Catamenial Epilepsy: Finally a solution!

hi, i've been reading all of your posts on here and i had to tell you my story. I had my first gm seizure when i was 25 im now 41, after the first one i didn't have another for 3 years so i just assumed it was a one off, then out of the blue i had another gm which was pretty bad, i was on my own but i knew what had happened because i had bitten my tongue and was very confused, so i went to the doctors the next day and i was sent for tests but nothing was found,

Over the years i had more gm seizures usually about 3 or 4 a year sometimes ending up in an ambulance, i opted not to go on medication because i always knew when i was going to be ill because when i woke in the morning i would have eye flickering so i would just stay at home and wait for the (biggy) .Anyway 3 years ago i had another gm seizure and ended up in hospital and was referred to my neurologist who i hadn't seen for 10 years, i told him that my seizures hadn't really changed but i had noticed over the years that they happened during menstruation, he immediately said that it was catamenial epilepsy and he prescribed frisium(clobazam) 2mg to be taken once a day during menstruation or more if i had the eye flickering and it has totally changed my life. Since taking clobazam a haven't had another gm seizure, i take 1 tablet before bed during menstruation, luckily i'm very regular and its done the trick.

I now drive and i dont live my life wondering when the next seizure is going to happen, so please if your neurologist wont acknowledge this type of epilepsy print this off and show it to them because you can get on with your life like i have. Good luck x

Re: Catamenial Epilepsy: Finally a solution!

I have JME & I've been told my epilepsy is "refractory". Mine is definitely worsened with menses. With an extensive, complicated history of endometriosis, NuvaRing & other hormonal-based treatments are not options for me. My neuro told me that acetazolamide (Diamox) was helpful with catamenial epilepsy when used as an adjunct to anticonvulsants. Since I've been on it (a few yrs), it's helped tremendously!

Re: Catamenial Epilepsy: Finally a solution!

Does anyone in here use hormones only, (without AEDs) to control their seizures? and have they been successful? I would LOVE to stop my medication cuz I HATE the side effects (I want my sex drive back DAMMIT!!!!!!)

Re: Catamenial Epilepsy: Finally a solution!

This is so enlightening!!!

 I am 20 and started taking birth control when I turned 19 because my hormones weren't "kicking in" due to doing elite gymnastics. So I was put on the pill. I've never been sick (not even chicken pox!) I had terrible problems for two months, which they described as "normal." Apparently around the same time I had come down with mono and did not know it at the time... In February, after about 4 months of taking it.. I was rushed to the hospital and diagnosed with viral meningitis. I had a seizure in my car and that's how they found out. When they took my spinal fluid they saw that I had that and the mono. 3 months later I had a granmal seizure after drinking 1 drink. It lasted hours upon hours and I vomited several times and couldn't be woken up. 3 months after that... I had a partial seizure and actually felt it coming. I was fully aware of everything during my seizure. Upon this I was put on keppra and stayed on the birth control. I was an A cup when I started and have only gained weight in my chest, and am now a double D.. which is a drastic change, especially for my body type. I also have become more irritable and sleepy!!!  I know these are random facts but I'm so frustrated with the neurologist just restricting me from driving and not asking questions. I even brought up the menstrual cycle/seizure coincidence (since they've all been at the beginning of my cycle...) and he ignored it. It's frustrating and difficult, especially since I'm an athlete. These replies have helped so much. Just wanted to share my story... Not done with this... going to figure it out and take some of these hints and try them. If anyone has experience anything like this... please help. I'm on a high dosage of birth control, junel Fe 1.5 and I've also brought it up to my gynecologist but she doesn't think there's a correlation either. 

Re: Catamenial Epilepsy: Finally a solution!

Hi! I also believe that I have catamenial epilepsy. I was diagnosed ten years ago with another type of epilepsy, but I am always having my auras around my menstral cycle (before, during, and after). I have done research the last couple of months, and been pushing my neuro to also do research...but not had much progress! I really do not know what to do, and I feel stuck at this point! Should I ask to get on birth control with hormones? I am on 300 topamax and 300 lamictal. I am almost 4 years without a grand mal seizure, thanks to taking a high dosage of meds...however, I feel like I am drugged all of the time! What is your advice? I really feel like I am on the edge of finding my cure! Let me know...

Re: Catamenial Epilepsy: Finally a solution!

I had to post a comment after reading this.  I was on a progesterone based contraceptive (Depo-provera) for over 10yrs up until the time my husband had our first child.  When I reached 13weeks, I suffered a serious siezure while sleeping, and was hospitalized for 2 days until I could recieve an EEG and MRi.  Results were inconclusive, so we decided against medication.  At week 23, I suffered a second milder siezure, also during the night while I was sleeping.  It was thought that my protein spiked causing the convulsions.  I went on to deliver a perfectly healthy baby boy right on schedule and never suffered any other siezures....that is, until I was pregnant with our second child.  With the second pregnancy, the nocturnal siezure occured once again at week 13 and was almost identical to the first one I suffered with my first pregnancy.  It was then determined that the siezures must have been caused by hormonal fluctuatons that had never surfaced prior to pregnancy because I was on a progesterone contraceptive.  My neurologist finally put two and two together and diagnosed it as catamenial epilepsy.  Today, I take 125mg of Lamictal to prevent any further seizures (I opted against taking any other contraceptive because it caused other unwanted side effects and my husband is now 'fixed'). I very rarely experience any auras and if I do, they are always within the first few days of my period.  Lamictal is a 'second' generation anti-convulsant and has less side-effects than Topamax...I would recommend consulting your Neuro about Lamictal to see if it is right for you :)

Re: Catamenial Epilepsy: Finally a solution!

Thank you so much for your post!  For years I've taken lamictal and it has controlled my seizures EXCEPT when I was ovulating.  My neuro kept jacking up the dose of lamictal which just made me tired and spacey all day long.  But when I came across your post I decided to check into going on Birth Control.  I've been on NuvaRing for about 1 1/2 months now and no seizures yet. Thanks for your post!

Re: Catamenial Epilepsy: Finally a solution!

Thank you so much for your post!  For years I've taken lamictal and it has controlled my seizures EXCEPT when I was ovulating.  My neuro kept jacking up the dose of lamictal which just made me tired and spacey all day long.  But when I came across your post I decided to check into going on Birth Control.  I've been on NuvaRing for about 1 1/2 months now and no seizures yet. Thanks for your post!

Re: Catamenial Epilepsy: Finally a solution!

I apologize in advance for the long post. The feedback here speaks greatly to my seizure disorder so felt the need to share. I am a 35-year-old woman, diagnosed with a right frontal focal partial onset seizure d/o at age 8. Having tried myriad AED's, I still experience partial seizures daily (zoning out/blank stares, jumbled speech, involuntary hair twirling, residual headaches) but never loose consciousness. They are brief but annoying and uncomfortable.

A lifetime of EEGs, CT scans, MRIs have all proven unremarkable. I've been told repeatedly by neurologists that this is good news. My current neurologist (great doctor double-boarded in neurology and psychiatry) recently told me he can't technically diagnose me with Epilepsy since things have been relatively normal for the past year. I thought, what's wrong with me then!?! I thought I might be losing my mind. 

About one year ago I was taking an oral contraceptive (Lybrel) for my other "diagnosis" of Endometriosis. For the first time in a long, long time I was seizure-free. After 6 months on Lybrel my OB/GYN and neurologist decided to start weening me off everything including my AED's. Bad idea! This made for the perfect storm. I was done with my 6-month regimine of Lybrel, completely off the Lamictal and almost off the Clonazepam. On a very low dose of just Clonazepam, within a month I had my first tonic clonic seizure, next month another one, and then a third the following month. I was scared out of my mind and am now back on my 2 AED's but off Lybrel. I have been pretty stable since. No large seizures but still these smaller, nagging episodes.

I've been researching Catamenial Epilepsy. My grand mal seizures must have been hormone-triggered and the frequency, severity and duration of my partial seizures spike during ovulation and menstruation. I'm presently unemployed and don't have health insurance or would probably jump back on Lybrel. It's becoming clearer that the hormone progesterone was inhibiting my seizures BUT that I also need my AED's. Lamictal has been a life changer for me but even with Clonazepam it's not enough. 

It's a huge relief to know there are others out there with a knowledge of Catamenial Epilepsy. I'm interested to hear more of your stories and about other alternative therapies. I'm curious about the progesterone cream mentioned - what brand, how to apply, etc. Any additional insight or advice would be greatly, greatly appreciated.

I wish anyone and everyone dealing with this the very best.

Thanks!!!

Re: Catamenial Epilepsy: Finally a solution!

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Re: Catamenial Epilepsy: Finally a solution!

I am fairly certain that I have begun to suffer from catamenial epilepsy. I have had epilepsy since I was 4, but when I was about 15, I began suffering from severe migranes triggered by my monthly period. My neurologist decided that the best way to treat this would be to put me on a three month cycle of birth control. This worked for about 3 1/3 years, until six months ago when I suffered from my first catamenial seizure and the first seizure I had had in 5 years. Originally I didn't think anything of the seizure relating to my period, but when I had a second catamenial seizure this past september, during my next cycle, it dawned on me that the seizure could be triggered by my period.
I found this article and a few others like it, which is where I learned about catamenial seizures.
Because I am in college and go to school out of town, when I had the second episode, I went to a hospital close to my school. The neurologist I met and spoke with at that hospital said for sure that my siezure was related to my cycle, but when I spoke with my local neurologist via email about it and asked her to verify this she said no way.
I am not sure if she just doesn't know about catamenial epilepsy, or doesn't believe in it. Both of which seems strange. Both my mom and i believe that it is catamenial epilepsy, and I am trying to figure out a way to convince my local neurologist of this as well.

Re: Catamenial Epilepsy: Finally a solution!

Also, because I haven't had a menstural migraine in 5 years, is it possible that bringing my period back to a monthly cycle would reduce the chance of another catamenial seizure? I have a hunch that it is the hormonal build up of 3 continuos months that is what is triggering the seizures.

Re: Catamenial Epilepsy: Finally a solution!

Hi there,

In short, no, an "increase" in hormones would not trigger seizures as hormones do not build up.  They merely fluctuate.  If your body wants to have a menstrual cycle, it will, even if you are on the 3 month pill.  What may be happening is your progesterone is off (too low).  If this is the case, the only way to fix it is to take a low dose Estrogen pill so that your progesterone levels can try to protect you from the seizures.

I should have said this earlier. The reason the doctors don't believe in Catamenial epilepsy or hormones effecting your seizure threshold is because all the research has been with the pill.  The pill has been "proven" not to impact seizures - only the efficacy of your drugs and to shut down ovaries that are causing great fluctuations in hormonal release.  However, research on natural or bio-identical hormones (the kind they use for challenging pregnancies for example) proves that if you have low or greatly fluctuating hormones, natural progesterone will prevent seizures and in many cases facilitate the reduction in your medication.

 

Re: Catamenial Epilepsy: Finally a solution!

I am having so many seizures around and during my period! If prescribed estrogen pills do you take them all month or just before your cycle? I am also on birth control and seizure medicine. I cant take this!

Re: Catamenial Epilepsy: Finally a solution!

I am having so many seizures around and during my period! If prescribed estrogen pills do you take them all month or just before your cycle? I am also on birth control and seizure medicine. I cant take this!

Re: Catamenial Epilepsy: Finally a solution!

Thank you to the individual who started this post. Also to everyone else who has added their comments. It's good to see us all working together on this issue.

I'm 32 yrs old & until now, felt alone with the lack of attention I was getting from my doctors on the subject of catamenial epilepsy. I am a wife & mother of two who has been unemployed for the past year & my license remains suspended due to my condition. The feeling of having to depend on people bothers me on top of living with the condition itself. But what's a girl supposed to do...?

For a while I have felt going to the doctor was a waste of time...the cure is always medication. I stopped trusting doctors so much, then I too, discovered I have catamenial epilepsy, (although they don't want to explore/diagnose me yet.) I feel used with med after med. I finally had enough & said I wasn't taking any other meds unless I felt it was helping ME. That was the first step for me. My neurologist called me to further discuss solutions & WE decided to try another med. Although it decreased my migranes & I felt better, it couldn't stand up to my menstral period. I had 3 short seizures, opposed to my usual 1 drawn out seizure. I'm trying to be patient with this rule out procedure & I hoping my neurologist sees he's running out of med options.

I am currently working towards getting my hormone balance tested AGAIN. I'm sure I surprised my neurologist this time with the research I did before talking to them. Thanks to this post, I can suggest a few birth control methods. I'm just so frustrated because I know myself better than anyone...I've been keeping a journal showing the relationship to my cycles...I've pinpointed the main cause, but I'm not getting the overdue results!

One suggestion I have to anyone with this condition, is to DO YOUR RESEARCH before you bring it to your doctor. That's for anything, especially if it's not widely practiced. It's almost like you're trading places in the situation...like their scared to touch the subject. Approach them with strong intentions, avoid being side-tracked & dominate it until the end. Because in my opinion, although I should qualify for some type of disability/aid, my doctors don't. They are just there to their jobs & nothing more. You are your best doctor, so take control because it's your life...with HELP of a professional of course.

Re: Catamenial Epilepsy: Finally a solution!

Ladies, I have been researching this topic for the past two years.  I was diagnosed with epilepsy when I hit puberty.  At the time it was only Absence seizures.  When I was in my second year of secondary school my mother decided she could cure me with herbs.  She took me off of my AED cold turkey.  It took about 5 days but eventually I had a severe tonic-clonic seizure.  You could hear my doctor yelling at her all over the hospital!!

I tell you this because it was my first experience with that sort of seizure.  I came to and didn't even know my name.  It took me the ride in the ambulance to start remembering...about 15 minutes.

So, now I knew that an increase in Absence seizures led to a Tonic-clonic (it was my aura my neuro said).

I went 25 years completely seizure free.  Then the absence sz started again when I turned 42.  I badgered 2 neuros (my original neuro and one closer to me) for over a year to do something.  Every month on one day I was having non-stop Absence seizures which I knew would escalate.  So, they tried changing my medication which resulted in the elimination of my short term memory so they changed it back.  Then they suggested I "up" my medication 3 days prior to my anticipated problem day and continue at the increased dose for 3 days after.  Well, that may have worked if I knew EXACTLY what day that was going to be but it moved around within a 3 day window.

Finally, I had a tonic-clonic, fell down a flight of stairs, broke my nose and had a series of seizures which scared the doctors so much they mega-dosed me to keep me from going into Status (non-stop seizures).

I took matters in my own hands to educate myself.  My OB-GYN and I hashed out a scheme to shut down my ovaries because it was obvious to me that they were the problem - Seasonale.  Any pill seems to work but I don't like being on them given my age and risk of heart attack, stroke and breast cancer.  When you are on the pill your ovaries believe you are getting the hormones you need and don't bother working to their full extent.

The REASON (while you are in peri-menopause) you want to shut them down is because the send out too much Estrongen and not enough Progesterone - they spike and trough (up and down) your hormones.  Progesterone protects you from having seizures, Estrogen promotes seizures.  So, I have found the answer is to get off the pill and take bio-identical progesterone.  I am beginning my journey in the next month with a hormone specialist I have found.

Ideally, a Neuro-Endocrinologist would be best but it's impossible to find one.  The Bio-identical hormone specialists are a challenge as well because Epilepsy is not exactly (in their minds) something they want to mess around with.  It's tough even when you know the answer to your problem - no one will listen or take the risk.  My most amazing neuro was Dr. Warren T. Blume - he always said to me, "it doesn't matter what anyone else says, you know your body, listen to it."

 

Cheers and best wishes!

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