Posted by Bob Gooden
on November 21, 2000 at 02:40:14:
In Reply to: Re: Menstrual cycle & Epilepsy connection? posted by FK on June 02, 2000 at 19:30:06:
My daughter has had seizures for twenty seven years, needless to say, she has undergone many changes and has been on just about every med that has come down the pike since dilantin and phenobarb.
She is presently taking 700 mg of Lamictal, 2000 mg of Keppra and 7 mg of Klonopin daily. We (my wife and I) started applying 20 mg of natural progesterone on days 12 through 26 to my daughter three months ago, this is the third month. As yet, we have seen no change but I understand that it sometimes takes several months to be effective if it works at all. The Lamictal and Klonopin control the gran-mal seizures and the Keppra controls the myoclonic jerks that she was suffering from. Now she goes into a catatonic state which her neurologist said was status epileptis on or about the second day of her period, the status lasts for about thirty-six hours and has not been responsive to medical or ER treatment. Her neuro. said that he did not think that the diazapam or clonazapam that they shot her up with in the ER was helping so we have kept her at home during the last three episodes and it is real hell for the duration of the seizure. My wife and I are nearly seventy years old and it gets tougher every year to take care of our daughter. She has had a good month this month but we live in dread of the first of next month when her next period is due to occur. I've been reading the book by Dr's John R. Lee, Jesse Hanley and Virginia Hopkins "WHAT YOUR DOCTOR MAY NOT TELL YOU ABOUT PREMENOPAUSE" and it makes a lot of sense. We started using Natural progesterone on her but we have yet to experience any change. We are grasping at straws, there is a great lack of knowledge of the relationship between hormones and seizures even among the young, recently educated neurologists. We have been harping on the close proximity of my daughters seizures and her menses since she started having the seizures at puberty, she was thirteen. We just recently began seeing a new neurologist and he, mostly to humor us I believe, suggested that she be put on an Estrogen patch. I questioned his judgement and after awhile he called and said that they were doing some experimenting with Natural Progesterone at the hospital that he trained at and said that he thought that it was OK to try it. He is the first of my daughters many neurologists that has even given credence to the idea that her seizures might be catamenial.
We were given an Rx for Zonegran which I had filled and then when I read the precautionary statement, it said not to ues it if you are alergic to sulfa which my daughter has an alergy to so we have not tried that as yet. She is also scheduled for a VNS implant sometime soon so maybe that will help but I am not sure just how helpful it will be with the status episodes.
I surely would appreciate any insight that the readers of this board might be inclined to offer.
Thank you for reading this.