Comments on: Catamenial Epilepsy

By: Sabrina Juatco

Sabrina Juatco — Tue, 09 Mar 2010 22:44:53 +0000

My name is Sabrina. My daughter Maritess started her seizures when she was 12yrs old when she started her menstruation. She is on 3 combination of meds and still not controlling her seizures. she gets seizures everyday. She feel good if she doesn’t get a seizure for 2 days. Her menstrual period is very irregular and that affected her so much. Her seizure gets severe once a month during her cycle. Hope and pray that you will find a cure soon. Thank you

By: Charles Hofmann

Charles Hofmann — Fri, 12 Feb 2010 16:18:29 +0000

My daughter now 16 has had an increase in seizure activity from the age of 12. Many medications have been tried but without any luck. She would have seizures two days before her cycle or right after her cycle began. Seven months ago her doctor added another medication called Diamox to her current medications and knock on wood she has been seizure free for almost seven months now. It is very important to keep track of your cycle and keep a seizure diary so you can give this information to your neurologist. This sounds weird coming from a guy but I love my daughter and I did what was necessary to help her.

By: Martha O'Shea

Martha O'Shea — Sat, 30 Jan 2010 20:17:23 +0000

I am 29 in June, from Ireland and always suffer around my period.I have had epilepsy since I was nine & have never found a drug that worked. I afraid to go to work around my period.
Please just continue your good work, as I am to married next year and to have a wedding day without a seizure.

By: Linda Barbadoro

Linda Barbadoro — Fri, 31 Jul 2009 02:55:24 +0000

I suffered seizures at menopause and now my daughter has catamenial epilepsy that is still not under control. Thank you for your continued research on this disease and I pray for your success for my daughter and the thousands of women just like her. Progesterone has not helped. We’re still searching. Maybe Ganaxolone is next?

By: M. Robin Stenkamp

M. Robin Stenkamp — Mon, 20 Jul 2009 04:42:28 +0000

Thank you for the information on neurosteroid replacement. After 36 years living with intractable catamenial epilepsy it is a joy to read about new research with promise.