Focal awareness seizures or auras?

Hi @lzbthtyler
How did your EMU stay go? I hope they were able to capture some helpful information for you. 🙏

Hi @mollie1022
Welcome to our group to Connect.
Just to make sure I understood your post correctly - have you noticed fewer seizures since going from pre-menopausal to menopausal?

Chris

Hi -
I can definitely relate to your post. I also thought my seizures were triggered by my hormones until I recently switched from pre-meno to menopausal. YEY! Although, I am sure some of them had to be because they showed up like clockwork.

But I just wanted to say I hope that you had a seizure while in the EMU unit. We, my husband was with, spent a week in June and I did everything - PF Changs, stayed up all night, coffee (a lot) and all the goodies that hit me on a regular. But I did not have one seizure while at the hospital. However, the following week, I have two.

I hope everything worked out for you.

@lzbthtyler
Hi Elizabeth
Good luck with your EEG exam, which I understand is approaching. Hope it brings new information to your treatment.
Let's keep connected!
Chris

Hi @murphymarg59
I'm so happy to hear that you're sleeping well again! Good sleep is precious and priceless for everyone, but especially important for us with epilepsy.
No seizures – that's definitely something to celebrate!
You mentioned sometimes getting a weird feeling that's hard to describe. What do you typically do when you experience these feelings? If possible, try to write down what you're feeling right after it happens, along with what you were doing when the feeling occurred. This information could be really valuable to discuss with your doctor.
Chris

@kelspal
Hi Kelly!
I'm sorry for my delayed response.
I'm so glad to hear that your daughter is doing better! I hope you'll find an excellent epileptologist for her care soon. 🙏 I understand that her appointment with the neurologist at Froedtert Hospital was somewhat disappointing?
As @adoptivemother once mentioned, it might be worth having PNES evaluated as well. Early this August, I experienced my first PNES episodes following a complex partial seizure. What surprised me was that the PNES episodes diagnosed at the hospital felt exactly like my usual auras. Through this experience, I learned that it's possible to have both epileptic seizures and PNES episodes. I've shared more details about this recent experience in the "Epilepsy or PNES seizures?" discussion, in case it might be helpful: https://connect.mayoclinic.org/comment/1383609/
How is your daughter doing with those "small auras" since her Keppra reduction? Has there been any change in their frequency or intensity?
Chris

Hello Chris,

I have not had a menstrual cycle since December 2024, but I do have the long term EGG schedule when I usually have the seizures. They are usually the 1st week of the month. I will definitely look at the two resources you shared.

Thank you,
Elizabeth

Yes. I take 100mg in morning. I am sleeping fine
No seizures. But occasionally I get a weird feeling. Can’t describe it. Happens late in afternoon. Probably after Gabapentin wears off.

Hi Chris,
My daughter has been trying to contact her neurologist about how to wean off her keppra. He told her if she doesn't have any focal seizures in 2 years, she can wean slowly. The nurse has not responded to any of her messages. She was on 1000mg twice a day. She went to 750mg for 2 months and didn't have any problems, and then 500 twice a day and its been 5 weeks and still no change. After 2 months she will drop to 250 mg for another 2 months. Overall, she feels better as she weans. She is exercising regularly and being careful in the way and what she eats. Eats a very limited amount of sugar. we are trying to find a new epileptologist to work with. It seems as though every neurologist just places you on keppra and doesn't really listen to what you are telling them. Thanks for checking in. My daughter is an adult so I have to trust she is doing the right thing.
Kelly

Hello @kelspal
It has been a while since I last heard from you.
How did your appointment with the neurologist at Froedtert Hospital in Milwaukee go, and how is your daughter doing?
Chris

Hello @lzbthtyler
It's good to hear from you with updates. I hope your scheduled EEG in September provides helpful new insights.
I also experience catamenial seizures caused by hormonal fluctuations, and it sounds like you may be dealing with something similar. I wanted to share two resources that you might find useful:
Catamenial Epilepsy Explained
https://www.myepilepsyteam.com/resources/catamenial-epilepsy-explained
Epilepsy in Women: Impacts, challenges, and concerns.
https://www.cureepilepsy.org/seizing-life/epilepsy-in-women-challenges-concerns-and-considerations/
My neurologist and gynecologist have worked together to develop a hormonal therapy that has significantly reduced my hormone-related seizures. I'm currently in perimenopause and continue with the hormonal treatment, which remains highly effective.
Have you had the chance to speak with both your neurologist and gynecologist about this? Also, has your EEG been scheduled to coincide with a specific phase of your menstrual cycle?
Chris