hormones and epilepsy

Are there any ladies out there that have had a hysterectomy and have epilepsy? I have epilepsy and I'm worried that with my hormones going out of whack after the surgery, that the seizures will start again. They are under control and have been for a good 8 yrs., I still have symptoms, but I haven't had an actual grand mal seizure in 8 yrs. The reason I'm worried is bc before I found out I was pregnant with my daughter (8) I had a grand mal seizure. I hadn't had one since I was 14 at that point (I was 19 when I got pregnant). I found out I was pregnant a few days later and realized I had that seizure bc of the whole hormone thing being out of whack. I'm terrified that this will happen again. I don't want things to go back to the way they were when I had seizures. I was being babysat at the age of 19, my stepmom and older sister were worried that I'd have another one and hurt the baby. My dad tried to keep them in line (he is an EMT), but they still watched me like a hawk. It drove me crazy, bc I too was scared that it would happen again. Now it's all coming back to haunt me. I'm going to talk to my doctor about it, but I know there's not much that can be done, I can't get on any more anti-seizure medication and wouldn't want to. I guess I just want to hear that it'll be ok. I'm trying to put it in God's hands, but... any advice would be very welcome.

Hi Jen I've moved your post over here to the Pre Op message board where other ladies with similar concerns can see it.

I understand your concern about hormonal changes affecting your seizure patterns. Unfortunately, there doesn't seem to be one *right* answer to your questions. I did find this link:

Menopause and Epilepsy

I hope it helps. Good luck with your surgery!
s,
-Linda

Boy does that sound familiar!!! I never thought about having another seizure until I read your post!! I have had epilepsy since I was 16 and been seizure free for 4 years {knock on wood} I stopped taking the meds a few years ago also. I guess thats one more question I have for the doc. I certainly DO NOT want to go through that part of my life again! It seems like if its not one thing it another I can't cope! Well I'm of to do a little research and call my doc to see where we stand in the hormone jungle. I will get back to you if I find some good info. Take care and don't worry too much that also causes seizures. lol

your sis ,
Tanya

Hi! I'm still on my seizure meds. But I can't get any more as it will effect my white cell count. I take 5 tablets a day of 200mg tablets of tegretol. I was on Depakote and Dilantin when all this started, but those didn't work for me AND I gained weight. Tegretol seems to be doing the job, of course I was on tegretol when I got pregnant for my daughter. But I DIDN'T have a seizure when I got pregnant for a son when Kayla was only 3mths old. So my hormones were out of whack BIG TIME . I still wasn't normal with my periods when I found out about Dustin. So I'm just worried and confused about all this mess. I have an appt. with a new neurologist a couple of weeks before my surgery, so I will DEFINITELY be discussing it with him. Sorry to have given you ONE more thing to worry about, as if we need it.
Good luck and if I find out anything I too will let you know.

Hi Jen
I had my hysterectomy 3 years ago but I kept my ovaries. After my hyst, I started having seizures again. I had been seizure free for 3 years. I also take Tegretol (400mgs a day). I also have a thyroid nodule so my neurologist, my gyn and my endocrinologist worked very well together to help me. My hormone levels were drawn and I wore a Vivelle patch short term. I use compounded progesterone cream two weeks out of every month and we are still wrestling with the compounded testosterone. Hormone testing (including saliva) is a must. For me, keeping my body balanced has been the key. Even though I kept my ovaries, I am at the age when menopause begins so my hormones have to be balanced to keep seizures at bay. I also have to have to make sure my thyroid meds, are taken regularly.
I think it's a very good idea to have family keep you company until you know how your body is going to react. I also think your neurologist needs to work along side your gyn in this process. I have only been seizure free 8 months but I do feel like I'm on the right road. I hope you don't have to deal with this but I'm glad you are thinking ahead. My are with you.

Karlene

Hi ladies! Well, my worst fear came true and I still have a little over a month before my surgery. I had a seizure this weekend. It wasn't a bad one, meaning grand mal, but it was a petite mal which left me feeling like crap afterwards. We were on our way to La, (6 hour drive) and I was half awake, half asleep when my neck got real tight then my whole body got real tight/tense and then went numb. The whole thing lasted maybe 10-15 sec., but man did I feel sore, dizzy, and nauseous afterwards. It was a horrible ride the rest of the ride (4 hours left to go). Now I'm scared it may happen again. I moved up my neurology appt. to check my blood levels, but if I had one when my hormones were only a little out of wack, what's going to happen when my uterus is gone. Why can't we just deal with one problem at a time? Life sometimes *****. Anyway, enough complaining from me. Anyone with any feedback or experiences will be greatly appreciated. Have a good week!!!