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Catamenial Epilepsy and Progesterone Therapy

Epilepsy & Seizures | Last Active: Jul 3, 2022 | Replies (11)

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@crstyday40

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!!

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Replies to "Hello, I just signed up to this and reading about others who have seizures before their..."

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?