Focal awareness seizures or auras?

Hi @jafar
Thank you for sharing these symptoms with us. Most of the symptoms you describe are quite new to me, even though I also experience seizures where I remain aware during the episode.
Since Meige syndrome was completely new to me, I did some research to learn more about it. I discovered that while both are neurological conditions, they are quite distinct, though they can sometimes be misdiagnosed—particularly with epilepsy involving seizures that originate in the frontal lobe (my seizures originate in my temporal lobe).
I'm glad to hear you have an appointment with an epileptologist scheduled later this month. I look forward to hearing what the doctor says. I'm sorry I couldn't be more helpful.
Chris

Thank you, Lisa. I am videoing these events myself using my phone propped on my legs.
I have an appointment on 10/31 with the epilepsy specialist.

Hi, @jafar - since you'd mentioned a possible focal aware epilepsy diagnosis, I moved your post here to this larger, existing discussion on focal awareness seizures so you could meet Mayo Clinic Connect members talking about this topic such as @kelspal @santosha @mollie1022 @lzbthtyler and others. They can let you know if they recognize or relate to the symptoms you are describing and share anything they may know about Meige syndrome.

Are you videoing these events yourself, or do you have a friend or family member who does that for you? When will you get to see the epilepsy specialist you mentioned?

I may have epilepsy even though an EEG did not show it. I have fully aware bilateral facial spasms for 6 mos., preceded by nausea 1-3x day for 2-5 mins. Sometimes my tongue protrudes at the end, then retracts quickly. My nausea stops shortly after these episodes.
I am told that since it starts on left side of face and goes to right down from my eyes to lips and chin, with muscle clenching, that I would typically be unconscious but I am always totally aware and video these events often.
I am waiting to see an epilepsy specialist but has anyone else experienced something similar? Other possibility is Meige syndrome. I an a 66 year old female. The neurologists I’ve seen so far are stumped. Brain MRI and MRA are normal. Thanks.

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

Do you mind me asking what hormonal therapy they recommended?

@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

@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

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

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