Catamenial Epilepsy and Progesterone Therapy

Hi, @kbredimus -- welcome to Mayo Clinic Connect. The information you've shared here is helpful to understand some of your background. I'm glad to hear the lamotrigine (Lamictal) has reduced the frequency of your seizures. That's unfortunate, however, that you still get them every 14 days immediately preceding ovulation and menstruation. I applaud you for the observations you've made about your own seizures -- that is wise to be taking note and gives you more to present to your doctor.

Here is some Mayo Clinic information on lamotrigine (Lamictal) in which you may be interested: https://www.mayoclinic.org/drugs-supplements/lamotrigine-oral-route/description/drg-20067449.

Also, here is an interesting video talking about catamenial epilepsy: https://connect.mayoclinic.org/webinar/webinar-adult-epilepsy-common-clinical-issues-and-new-therapies/?pg=2#comment-30636

Hoping that other members who have talked about catamenial epilepsy or lamotrigine (Lamictal) may have some input on your question on whether progesterone-only birth control might be an option to control these refractory seizures, and if so, whether it would lower the effectiveness of lamotrigine (Lamictal). Please meet @jakedduck1 @techi @historygirl and @juliehart4. I'd also invite @dawn_giacabazi @user_ch7453696 @bonnieh218 @valm @denamccoy to join this discussion and comment on what you are asking about birth control and share what they may know about catamenial epilepsy.

@kbredimus - what does your doctor say about the possibility of catamenial epilepsy and potentially taking progesterone-only birth control?

Hello I was diagnosed with TLE in 4/18 with hippocampal sclerosis. Prior to knowing I had been having partial seizures, I took progesterone compound 200mg cycle days 15-25. Doctors thought my symptoms were possibly hormonal since I had a history of low progesterone. It took a grand mal seizure on 3/13/18 to be referred to neurologist to find out the symptoms were not hormonal, but in fact partial seizures. I now go to an epileptologist which I would suggest over a neurologist. They are neurologist who specialize in seizures and epilepsy. You may be able to find one who further specializes in catamenial epilepsy as well. I’m the same way. I have PCOS so my cycles are irregular, but normally I have partial seizures around cycle day 18. If I take the progesterone it makes my cycle more regular, but I still have the partials. I think an imbalance of estrogen does play a role with me, because I had the grand mal on cycle day 18 and had no progesterone on board. My epileptologist does not specialize in catamenial. My seizures are pretty much consistent with those cycle days, but they can be all over the month as well. I’m on lamictal 250mg daily, but my seizures are not controlled. I’m sure I haven’t answered your question, but thought I would give you some info as it relates to my sxs. Is that time in your cycle the only time you are having the seizures?

Hello, I just signed up to this and reading about others who have seizures before their period is great to hear! Not great they you are having seizures of course but "to know and not feel like nobody else is going through this but me" feeling! So I started having seizures after I had my 2nd son when I was 19. I didnt know and the doctor Inwas seeing at the time didnt know they were seizures. She thought i was just having panic attacks. Thing is I would have 20 to 40 every single day for 7 yrs before finally a new and differwnt doctor said "I think you are having seizures" I was shocked! This whole time I was having these so called panic attacks, I was going to school, driving, got a job, everything I had always done before. When I would have them, I would always do the same thing every time...pee on myself, say "oh sh*t over and over, lip smacking, and when it would stop, people would tell me what I did and I couldnt believe it! I had no memory of doing any of those things. So I was 20 yrs old and wearing diapers, its a wonder I never got into a wreck!!! Eventually I did lose my job and then about 2x a year I would have a gran mal seizure. Fall hit my head, about bite my tongue off and so finally I was put on seizure meds. Unfortunately none of them worked for me. In 2009, I got a VNS, still had seizures. In 2011 I had my right temperol lobe removed. It helped for about the first 5 or 6 months. Then I started having "small" ones and was eventually put back on seizure meds. Everytime i go to my Neuro appts if I have had any either my meds get changed, up the dosage, or add a new one. Im 40 yrs. old now and my seizures seem like they are progressivly getting worse as time goes by. Ive started having them almost everyday again, the most ive had so far in 1 day is 6. Ive only lost bladder control twice but it feels like my memory and simply just understanding the simplest things are getting so difficult and not remembering doing things or going places with my family is so frustrating!!! I wonder if im on the road to getting Alzheimer's!? My grandmother had it. Im currently taking Briviact, Onfi and even been on medical cannabis for the last year and it is NOT helping!!!!! When it was approved here in Florida I really thought medical cannabis was going to be my cure!! Im so letdown after seeing how its supposedly has helped so many with their seizures. I do notice an increase around my menstrual cycle but also have them at other times as well. Have just recently found out I have low progesterone so I have prescribed progesterone cream i use 2x a day. Havent been able to tell a difference yet. The doc did say it may take about 3 months before I will tell a difference. Stress doesnt help at all of course and getting too hot is a definite trigger..easy to avoid that but how do you deal with stress? I dont work, cant drive. I do crochet ALOT!!! Just was taught a few years ago by mom, which does help somewhat but sometimes I feel like so depressed and have wondered if I just died in my sleep that would be fine with me at this point. My VNS is on the highest settings, on the highest dose of Briviact..have been on everything...whats left? Sorry if this is long, just wanted to tell my story I guess. My husband tells me I should be thankful I dont have the "bad seizures" anymore and yes I am so grateful and thankful that I dont. And my mom tells me just the other day that if I went to church every Sunday morning and Sunday night and Wednesday night that that would help me. I dont feel comfortable around a large group especially at church. How would that be if I start having a seizure and I start cussing? Um no!! I believe in God and stuff and pray all the time. I just feel so hopeless!!!! Thank you to anybody who reads this and understands how im feeling. Good Luck to all of you who continue to have seizures despite trying everything!!

Hi, @crstyday40 - welcome to Mayo Clinic Connect. I imagine it's helpful to read the stories from others of things like having seizures before their periods, since it helps to not feel like nobody else is going through this. That is challenging your seizures seem like they are progressively getting worse as time goes by, having up to 6 seizures per day and not feeling that medical cannabis is helping like you'd expected or the VNS on the highest settings, or the highest dose of brivaracetam (Briviact).

I'd like to tag a couple members of this discussion to return, like @ptntrusted2god @kbredimus, and also invite other members to join in like @jakedduck1 @dawn_giacabazi @12271997 @rachelanne @Kaia @user_ch7453696 @9882351045 @historygirl @boston2mayo. I believe many of them can relate to the "Have been on everything, and what's left?" sentiment you expressed.

@crstyday40, you mentioned you have just recently found out you have low progesterone and were prescribed progesterone cream you now use 2x a day. Have you experienced any side effects from the cream?

@lisalucier Ive been using the cream for about a month and as far as I can tell Im not having any side effects. But, I take all kinds of other medications. I feel tired a lot of the time, I have migraines, trigeminal neuralgia, hypothyroidism, insomnia. Currently taking NP thyroid, Briviact, Onfi, Lyrica, Buspar, Amitryptiline, Diclofenac Potassium, and DHEA every other day. Also just started getting botox injections for my migraines. So if I were to have any side effects I dont know that I would even know lol. And thank you! I was feeling very down yesterday, ended up having 4 seizures yesterday..was in Walmart with my husband and started saying " oh sh*t" over and over grabbing at his arm...i didnt remember anything but felt "off and confused". I have never talked to or been in a group where other people have gone through the same thing. So thank you so much for welcoming me!!!!

Hi, @kbredimus - wondering if you found a good doctor specializing in catamenial epilepsy? Were you able to determine if that is your diagnosis?

Hi I am trying to find a good doctor that specializes in Catamenial Epilepsy, I am in Virginia but I. am willing to go anywhere as long as they are good.

Since my diagnosis at Jacksonville's Mayo 8+ years ago, I've always recommended the team there. They worked with me, helping me obtain long awaited answers. Despite modern age, it's my experience that Epilepsy wasn't a field of Neurology vastly practiced. No matter where you go, I do recommend finding an Epileptologist that will listen with patience, as each case is different. I recommend Mayo, and sometimes with our travels, we've gone through Airbnb and gotten some great little places on the beach, not far from Mayo. I wish you the best. - Kristin

I haven't actually kept track but it seems every medicine I take works for a couple of weeks maybe a month and then it doesn't. The fact they worked at all encourages my doctors to prescribe larger doses. The larger doses don't work either but that is where I stay. It is like my body takes a couple of weeks to adjust.

This applies to my epilepsy medicine as well as the steroid doses they put me on for ITP. I question whether the medicine does anything after the initial couple of weeks and certainly question the higher doses.

Hi Everyone,
I have a 12 year old daughter that was diagnosed with epilepsy after a seizure event in January. The only thing thing that has been consistent about her seizures is that they occur on day 2 of her menstrual cycle. Would love to see someone who understands and can help with what I believe to be Catamenial Epilepsy. We are terrified and not getting results or answers. Any specialists or recommendations are encouraged. This Momma is scared and doesn’t know where to turn .
Thank you
Jen