Deja vu and weird feelings

Posted by lindsayv05 @lindsayv05, Jul 31 2:38pm

For the past few years, I would get these déjà vu like feelings, and it would feel like arise in my stomach and a familiar scene playing out. It would only last a few seconds, and once it was gone, I could barely remember what it was that I thought of. It’s not necessarily a bad feeling. It’s actually kind of cool. Recently, they started to happen more frequently. A couple of the times it did seem like I had a metallic taste in my mouth, and it usually happens around my hormonal cycle. The past couple of days I’ve had a few, and I just feel really down and out. My doctor gave me Topamax to try and I’m gonna start it tonight. I just wondered if anybody else had any similar stories and what has worked for them.

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Chris Gautier, Volunteer Mentor | @santosha | Jul 31 7:34pm

Hi @lindsayv05
Welcome to our Connect group! I'm glad you found us here.
Your description of auras really resonates with me. As a teenager, when my hormonal changes began, I experienced very similar symptoms. My episodes were very brief. I now understand these were simple partial seizures, also called focal aware seizures.
It's quite common for women to experience more seizures around their menstrual cycle, which is known as catamenial epilepsy, which I also deal with. Working together, my epileptologist and gynecologist recommended either a Mirena IUD or continuous birth control pills (taken for 5 months without breaks). This approach has nearly eliminated my menstruation-related seizures. But, please discuss these options with both your doctor and a gynecologist, as the best approach may vary, especially for younger women.
I'm sharing a couple of helpful resources that explain this connection between seizures and hormonal changes in more detail:
Basics about Catamenial Epilepsy
https://www.epilepsy.com/stories/basics-about-catamenial-epilepsy
Menstruation as a Seizure Trigger
https://www.epilepsy.com/what-is-epilepsy/seizure-triggers/menstruation
It's wonderful that you're taking action on your epilepsy now. My experience was quite different. I went undiagnosed for over 3 decades until finally receiving the correct diagnosis in 2019 at age 48. During those years without proper treatment, my seizures evolved from simple auras to complex partial seizures (focal unaware seizures) and eventually progressed to tonic-clonic seizures (generalized seizures). Early recognition and treatment can make a difference in preventing epilepsy progression.
Has your doctor been able to determine your specific type of epilepsy yet?
I know you're just beginning treatment for your auras, and I'm hopeful it will bring you good results. Please keep me posted on how things go!
Chris

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Leonard | @jakedduck1 | Aug 1 12:33pm

@lindsayv05
When my Dilantin became unstable and had to be switched a Neurologist recommend I take Topamax often referred to as Dope-a-max which I refused.
Because of its optic side effects, some potentially serious I'd recommend having regular eye exams with an ophthalmologist.
Also, it may decrease your vitamins D level so occasional testing should be done.
Take care,
Jake