Epilepsy Foundation

ok a little back history...i started having seizures at the on set of puberty. I was diagnosed with petit mal E. All through the years i had seizures very regularly that was never controlled but i never mentioned to my neuro(s) about it falling in line with my menses. I have two children ages 6 and 4 during my pregnancy the seizures were still there but not as bad. Within the past two-three years my Epilepsy has gotten worse, memory is almost completely gone, new seizures, have partial tonic clonic along with the absence seizures.  I have had a partial hysterectomy due to constant cysts..my gyno dropped the ball there because she failed to order my seizure meds so the hospital didnt give them to me ( had to have husband go home to get them) i had a seizure because i was stressed over it all..they wanted me to stay because i had a seizure but i signed myself out because there was nothing that they could do for me

   Ok now today...i just changed gyno's because of the above situation, he has told me that he can put me on progesterone and it will help my Epilepsy...i have had Epilepsy for 14 years been through many doctors and this is the VERY first time i am hearing of this. I told him i wanted to wait and talk it over with my family doctor and my neuro because they know my situation better than a brand new doctor.

So what is everyone's experience with the progesterone treatment... i am still very confused and stressed over this because of the lack of knowledge about it...i have appointments with my doctors next week to talk to them.

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I have been having catamenial seizures for over 30 years. Up until 5 years ago, I  could never convince my doctors that the seizures and my periods were related. Catamenial seizures are still so new that most neurologists still don't know about them. Then I found a general practitioner who was studing Catamenial Epilepsy and explained it all to me. Estrogen causes seizures and progesteron will help to reduce them. You body is unable to make enough progesteron, especially during the time of your period. That causes you to have seizures just prior to your period or just when it starts and at the time of ovalation (starting 2 weeks before your period). By taking progesteron pills, it will help to reduce the catamenial seizures. It will improve your memory too. 

I had almost no memory becuase of the catamenial seizures. My seizures were very painful and started 3 days prior to my period and lasted until my period started. In 2005, I started taking progesterone pills 3 times a day every day. I am still on it and probably will be for life. The progesterone reduced the catamenial seizures to 1 1/2 days but they were still very painful. I did not go through perimenopause. One month in 2007, my periods just stopped. Since then, my catamenial seizures have gone down to once a month and last only 3 hours. But the seizures are still very painfull.

The doctors do not know what can be done for the pain, if the catamenial seizures will eventurally stop or anything else about them. The progesterone pills are the best thing I have been on for the catamenial seizures. You have found a doctor who can help you. Stay with him. I don't have a doctor anymore who knows anything about catamenial seizures and I have to be my own doctor and educate the doctor. Stick with the progesterone pills. They work.  

The Epilepsy Resource Center would  like to provide you with the following information on catemenial epilepsy and progesterone:

http://www.epilepsyfoundation.org/answerplace/Life/adults/women/Pro...

http://www.epilepsyfoundation.org/living/women/wei/hormonesmenopaus...

Cordially,

Gigi Jones

Information Specialist

Epilepsy Resource Center

 

thanks so much for the feedback. I am pretty sure i am going to try this route...nothing else has seemed to help. I am excited and nervous at the same time.  

 Have you had any bad side effects from the progesterone?

The Epilepsy Resource Center thanks you for sharing with the community and we look forward to hearing from you in the near future.

Cordially,

Gigi Jones

Information Specialist

Also, check out the latest Epilepsy Foundation community outreach programs:

Take Charge:  http://www.takechargeteens.org/

Go EYC: http://www.goeyc.org/

School Nurse Online Training: http://www.nasn.org/Default.aspx?tabid=120

Epilepsy and Seizure Response Training for Law Enforcement: http://www.epilepsyfoundation.org/firstresponders/index.cfm

Hello, does anyone think that they may have catamenial seizures (hormone related). My daughters tonic clonic seizures (grand mal) have only happened when she is on her period. I have read information about treating these seizures with bioidentical progesterone. Any info will be appreciated.

 

http://bpwfoundation.org/

Six weeks ago, I found an Epileptologist not too far from home. He told me to continue taking the generic progesterone pills that I am on along with the Gabatril. He added a small dose of Amitriptyline, an antidepressent, to stop the Catamenial seizures. I am amazed to find that it is working after just a few weeks. The Catamenial seizures went from a time frame of 3 hours to just 45 minutes. The doctor explained to me that the medication will calm the neurons in the brain during a Catamenial seizure and one day it may stop them completely. Try and find an Epileptologist to help you with. They deal with epilepsy and Catamenial Epilepsy. They know a lot more than a neurologist does and know what to do for the seizures.    

Susie

I go to a Epileptologist also

I have noticed too they are very different than a neuro.

My Dr put me on Atavan which calms my brain down when I am really stresses or after a seizure.

This was never offered to my by the neuro I had gone too.

I am also going to a woman dr. I didn't have luck with men Drs about E

I wanted to see how this woman dr is.

She is great!

I agree, try and find a Epileptologist.

I never can pronounce it right

 

Hi, I believe that my daughter has catamenial seizures as well. We have started bioidentical progesterone this month and she is coming off it tomorrow, so i am hopeful tht it will help to protect her against a tonic clonic during this period. If anyone is on facebook add me to discuss , Diane Parente, Stoney Creek Ontaio, Canada. Also on facebook search catamenial seizures, join this site, i believe the women's name is Heidi who runs it. I need to talk to more women about this. My Email is deparente@cogeco.ca    I am presently working with a  naturopath who is prescribing my daughter the bioidentical progesterone. I am looking into Dr Alan Jacobs, a neuroendocrinologist who deals with catamenial epilepsy.

Beccrei said:

Hello, does anyone think that they may have catamenial seizures (hormone related). My daughters tonic clonic seizures (grand mal) have only happened when she is on her period. I have read information about treating these seizures with bioidentical progesterone. Any info will be appreciated.

 

http://bpwfoundation.org/



DianeParente said:
Hi, I believe that my daughter has catamenial seizures as well. We have started bioidentical progesterone this month and she is coming off it tomorrow, so i am hopeful tht it will help to protect her against a tonic clonic during this period. If anyone is on facebook add me to discuss , Diane Parente, Stoney Creek Ontaio, Canada. Also on facebook search catamenial seizures, join this site, i believe the women's name is Heidi who runs it. I need to talk to more women about this. My Email is deparente@cogeco.ca    I am presently working with a  naturopath who is prescribing my daughter the bioidentical progesterone. I am looking into Dr Alan Jacobs, a neuroendocrinologist who deals with catamenial epilepsy. My daughter is presently on lamitrogine which makes her very tired and obviously does not protect her when she has her period. It also seems to interfere with her menstrual cycle (it has become erratic) Hopefully the progesterone will help. Anyone have any thoughts on lamitrogine???

Beccrei said:

Hello, does anyone think that they may have catamenial seizures (hormone related). My daughters tonic clonic seizures (grand mal) have only happened when she is on her period. I have read information about treating these seizures with bioidentical progesterone. Any info will be appreciated.

 

http://bpwfoundation.org/

Was wondering if this sounded familiar to anyone, I have temporal  lobe epilespy/simple partial seizures  which were in the process of finding  a dosage that works but i find that when it's that time of the month the intensity of the seizure increases quite a bit and i have more seizures as wll then when its not that time of the month, was wondering if this could be considered catamenial epilepsy?
I'm not a specialist but i have been reading alot. My daughter is 25 and started on bioidentical progesterone for the last 2 weeks of her cycle. She came off it last sunday and got her period on Thurs. she felt horrible all day Thurs and thought she was going to have a seizure. I called my naturopath and asked if she could go back on the progesterone that day and she said yes. My daughter felt fine that evening and has since...its been 4 days since the beginning of her period and so far she is fine. We are currently having her hormones tested through saliva testing this month. It will be interesting to see how her horones look for the month and how she feels. All but one of her seizures has been on her period. She is presently on lamitrogine which mskrd her tired.

Erin McDonald said:
Was wondering if this sounded familiar to anyone, I have temporal  lobe epilespy/simple partial seizures  which were in the process of finding  a dosage that works but i find that when it's that time of the month the intensity of the seizure increases quite a bit and i have more seizures as wll then when its not that time of the month, was wondering if this could be considered catamenial epilepsy?
Susie, does gabatril make you tired?

Susie Rouis said:
Six weeks ago, I found an Epileptologist not too far from home. He told me to continue taking the generic progesterone pills that I am on along with the Gabatril. He added a small dose of Amitriptyline, an antidepressent, to stop the Catamenial seizures. I am amazed to find that it is working after just a few weeks. The Catamenial seizures went from a time frame of 3 hours to just 45 minutes. The doctor explained to me that the medication will calm the neurons in the brain during a Catamenial seizure and one day it may stop them completely. Try and find an Epileptologist to help you with. They deal with epilepsy and Catamenial Epilepsy. They know a lot more than a neurologist does and know what to do for the seizures.    

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