Focal awareness seizures or auras?

Posted by kelspal @kelspal, Apr 13 9:43pm

My daughter has her neurologist thinks are awareness focal seizures. They are very short (5-10 seconds) and happen during stressful situations, when experiencing anxiety, and during and around her menstruation. Her doctor put her in keppra 250 twice a day and it didn't change much. Then it was increased to 500, then 750 and then 1000 mg twice a day. She still has an occasional aura feeling but not sure if its epilepsy. She is having side effects from meds; tired, crabby, etc and does not want to take drugs she may not need. She was going to ask to slowly wean to 750 twice a day and see if there are any changes. Has anyone had a similar situation?

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Chris Gautier, Volunteer Mentor | @santosha | 2 days ago

In reply to @lzbthtyler "Do you mind me asking what hormonal therapy they recommended?" + (show)

Hi @lzbthtyler
I've been taking birth control pills continuously for 4-5 months without a break for menstruation. Additionally, my gynecologist has prescribed a testosterone cream that I'm currently using.
Chris

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lzbthtyler | @lzbthtyler | 2 days ago

In reply to @santosha "@mollie1022 Thanks for sharing that with me. From what I've read, estrogen and progesterone can still..." + (show)

Do you mind me asking what hormonal therapy they recommended?

Chris Gautier, Volunteer Mentor | @santosha | 2 days ago

In reply to @mollie1022 "Hi Chris - The only difference from pre-menopause to menopause is that I could actually time..." + (show)

@mollie1022
Thanks for sharing that with me. From what I've read, estrogen and progesterone can still fluctuate quite a bit during menopause, and those hormonal changes can definitely trigger seizures.
Have you had a chance to discuss this with your neurologist? It might be worth exploring whether hormonal therapy could help reduce seizures in your situation. The hormonal therapy that my neurologist and gynecologist recommended together has made a real difference in my seizure control, though I'm still in perimenopause.
Chris

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Chris Gautier, Volunteer Mentor | @santosha | 2 days ago

In reply to @lzbthtyler "Unfortunately, they were not able to capture any events. I'm back on Xcopri 250 mg and..." + (show)

@lzbthtyler
Hi Elizabeth!
I'm so sorry to hear that no seizures were captured during your last EEG. That can be really frustrating. Did you experience any events during the exam? Episodes like PNES (also known as FND seizures) don't show up on EEGs.
I really hope the hormonal therapy works as well for you as it has for me; it made such a difference in my case.
Please keep me posted on how things go. I'd love to hear about your progress on the hormonal therapy!
Chris

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mollie1022 | @mollie1022 | 4 days ago

In reply to @santosha "Hi @lzbthtyler How did your EMU stay go? I hope they were able to capture some..." + (show)

Hi Chris -
The only difference from pre-menopause to menopause is that I could actually time (monthly) that seizure. That helped because I have focal impaired awareness seizures and most of the time, I didn't even know that I had one.
I am still having a few a month - nothing has changed.
Thanks,
Nicole

lzbthtyler | @lzbthtyler | 4 days ago

Unfortunately, they were not able to capture any events. I'm back on Xcopri 250 mg and they added Brivact 50 mg twice a day. They also suggested I talk to my gyno about hormone therapy.

Elizabeth

Chris Gautier, Volunteer Mentor | @santosha | 5 days ago

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

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mollie1022 | @mollie1022 | 5 days ago

In reply to @lzbthtyler "Hello, I've been on Xcopri since October 2023. I started with 150mg. I've been on 250..." + (show)

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.

Chris Gautier, Volunteer Mentor | @santosha | Sep 1 9:38pm

In reply to @lzbthtyler "Hello Chris, I have not had a menstrual cycle since December 2024, but I do have..." + (show)

@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

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Chris Gautier, Volunteer Mentor | @santosha | Sep 1 8:12pm

In reply to @murphymarg59 "Yes. I take 100mg in morning. I am sleeping fine No seizures. But occasionally I get..." + (show)

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

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