Comments on: Catamenial Epilepsy

By: Bill Harold

Bill Harold — Fri, 02 Jul 2010 02:51:58 +0000

The majority of people just dont understand the severity or complexity of an epileptic seizure. It’s posts like this I’m hoping will change peoples understanding of the disease.

By: Seamus D.

Seamus D. — Wed, 19 May 2010 12:52:30 +0000

My Girl and I have decided to give Progesterone a go after many years of Her having siezures, They began when she was pregnant, second trimester… She had never noted the connection of her siezures and her periods, but I keep a journal one result of which was, I knew when she was due, partly to be forewarned and to when to adopt best behaviour. The regularity of her attacks, full mal-grande, usually only one, was apparent 3 days before and the same after. Usually before. She has never taken any medicine for the ailment as she would rather put up with the siezures than the side effects.After a particularly bad fit in the shower involving hot water, she finally gave in to my patient nagging and we got a prescription for Progesterone. We had to sign a waiver (We’re in Australia)to say that we did not recieve this scrip in any connection with the prevention of epileptic siezures… Progesterone was widely used up to the 1940′s for the treatment of epilepsy in both men and women, ( they’ve know about it since 1881 ) but when thousand of men began to come home badly wounded,many with head injuries and severely epileptic, they took the shotgun approach… Progesterone was dumped for the following reasons. They didn’t know how much to give MEN, also it COULDN’T be patented, (That’s what they said) Have a pill instead, Fred. As my girl has NOT been on any other medicine for the treatment of her Epilepsy we look forward to the next few months knowing that what is happening is the Progesterone alone… Shall keep you posted, Seamus D. Australia.

By: L. Barbadoro

L. Barbadoro — Sun, 04 Apr 2010 23:04:20 +0000

In 1994 as I approached menopause, I started to have Grand Mal Seizures. At that time, I was uninsured, and going to a clinic for help. After several seizures, I was put on Tegretol. I stopped the meds, because I didn’t like the side effects. More seizures. Went back on the meds, but reduced the amount. I highly recommend that anyone who is not seizure free, work closely with their neurologist as this was dangerous and I didn’t realize it. Menopause became unbearable for me. I had hot flashes all night long and couldn’t sleep. My memory was affected, my hands swelled, vision was blurry and the anxiety was awful. I would feel faint. I was put on HRT by my gynecologist. After two weeks, I was a new woman. Slowly and gracefully I went through menopause and MY SEIZURES STOPPED. After several years of taking Tegretol and HRT (Prempro) I eliminated the Tegretol………..slowly, slowly and slowly. In 2003, I stopped the HRT after the womens health initiative said their study showed ill effects of long term use of HRT. It is 2010. I have not had a seizure since 1997. I don’t know if it was the HRT, fate, or the combo, but I am so grateful and it gives me hope that others out there can be helped too. Please, DON’T GIVE UP. If one medication doesn’t work, try another and another. Until it stops. Be proactive, keep charts, take vitamins, and talk to your Dr.’s. They need to hear our voices. Best wishes to all of you, Linda

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.