Seizures and my menstrual cycle

Posted by pebbles1887 @pebbles1887, Jul 25, 2022

I have PCOS and I have been having seizures while on my period for about 2 years now. I have been to many doctors and they aren't sure what's wrong, but I am convinced it is because of my period. I have extremely difficult periods and am not sure how to proceed. I am also throwing up very frequently. The only odd thing is that I can tell when I'm about to have a seizure, which isn't common, though they look and behave exactly like a normal epileptic seizure. any help would be greatly appreciated. I'm not sure what treatment for this might look like, but I am missing work and need to figure it out soon.

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Leonard | @jakedduck1 | Jul 26, 2022

@pebbles1887
Have you asked any doctors if your seizures could have caused your PCOS?
In Catamenial Epilepsy seizures may happen when Estrogen is high or when progesterone is low. I know many women control their seizures by adding progesterone to their seizure meds.

I'm somewhat confused by what you said,
“I can tell when I'm about to have a seizure, which isn't common, though they look and behave exactly like a normal epileptic seizure.”
What is normal to you may not be common to another seizure patient?
You mentioned you can tell when you’re going to have a seizure, is that because you have a prodome or Aura? An Aura is a Focal Aware seizure.
What type of seizure do you have?
What is a normal seizure to you?
Take care,
Jake

Chris Gautier OR Santosha | @santosha | Jul 26, 2022

Hi @pebbles1887
Period is a common trigger to seizures. I also have it.
As my epilepsy is refractory, meaning that traditional anticonvulsant medication does not work for me, I am suspending my periods by taking a non-stop birth control pill. Mirena (IUD) could be another option. Unfortunately, it did not work for me. I have this way stopped with my seizures being caused by my periods. Both my epileptologist and gynecologist discussed it together so as to avoid those seizures,
All the best to you!
Santosha