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How can I find a neuroendocrinologist?

Mon, 12/22/2008 - 10:03

Hello Everyone.....

My daughter was diagnosed with juvenile myoclonic epilepsy a year ago. She had her first tonic clonic about 4 weeks ago, and had another one early this morning. I am tracking them and find the TCs have ocurred either during ovulation or at the beginning of her period. She is currently on Keppra, Depakote ER, Klonopin and Ativan prn and is still having breakthrough seizures. I am POSITIVE there is a hormonal connection and would like to find a neuroendocrinologist to evaluate her. Does anyone know how to find one or know of one anywhere within a days drive of Pittsburgh, PA?

God Bless.....

Michele

Comments

Re: How can I find a neuroendocrinologist?

Submitted by Lola7 on Wed, 2009-01-14 - 04:19
Ask your dr for Diamox! This helps during the cycle. Trust me!!

Re: How can I find a neuroendocrinologist?

Submitted by LovesMath on Tue, 2010-09-28 - 15:25

Yes, Diamox!  You are right, Lola.

I have what is called Catamenial Epilepsy.  My seizures are now undercontrol, since I started taking Diamox, a year and a half ago. Diamox is a diuretic and removes excess water that is retained around the menstural cycle of a woman. 

My seizures occured only around the time of ovulation and right before and right after my menstrual cycle started.  I am still working on severe moods and dark thoughts around ovulation and my period.....but no more seizures.  I can drive, my memory is incredible, now!  My short term memory used to be rediculous.

 My seizures began at 18 months and then became very predictable once my menstrual cycle started at age 11......at ovulation and around before and after my menstrual cycle.  I was diagnosed with Catamenial Epilepsy, but not until 2009 did a neurologist recommend Diamox.....which worked.

I am also on other AEDs and anti-depresents/psychotics.  My seizures only became under control with the addition of Diamox in February 2009....it is now September 2010.  The only time I have had seizures was when my gynocologist put me on an Estrogen birth control pill.......and individuals with Catamenial Epilepsy are naturally high in Estrogen.....they need progestrone to counter it.........Take a look at the YouTube video about hormones and epilepsy (catamenial epilepsy) neurendocrinologist, Alan Jacobs, MD: 

Dr. Alan Jacobs - Neuroendocrinology | Behavioral Neurology   http://www.youtube.com/watch?v=zZTenCyu-gA

Good luck to all.

To your Health,  LovesMath 

 

Yes, Diamox!  You are right, Lola.

I have what is called Catamenial Epilepsy.  My seizures are now undercontrol, since I started taking Diamox, a year and a half ago. Diamox is a diuretic and removes excess water that is retained around the menstural cycle of a woman. 

My seizures occured only around the time of ovulation and right before and right after my menstrual cycle started.  I am still working on severe moods and dark thoughts around ovulation and my period.....but no more seizures.  I can drive, my memory is incredible, now!  My short term memory used to be rediculous.

 My seizures began at 18 months and then became very predictable once my menstrual cycle started at age 11......at ovulation and around before and after my menstrual cycle.  I was diagnosed with Catamenial Epilepsy, but not until 2009 did a neurologist recommend Diamox.....which worked.

I am also on other AEDs and anti-depresents/psychotics.  My seizures only became under control with the addition of Diamox in February 2009....it is now September 2010.  The only time I have had seizures was when my gynocologist put me on an Estrogen birth control pill.......and individuals with Catamenial Epilepsy are naturally high in Estrogen.....they need progestrone to counter it.........Take a look at the YouTube video about hormones and epilepsy (catamenial epilepsy) neurendocrinologist, Alan Jacobs, MD: 

Dr. Alan Jacobs - Neuroendocrinology | Behavioral Neurology   http://www.youtube.com/watch?v=zZTenCyu-gA

Good luck to all.

To your Health,  LovesMath 

 

Re: How can I find a neuroendocrinologist?

Submitted by carn21 on Tue, 2010-01-12 - 10:32
Try Dr. Alan Jacobs, a neuroendocrinologist. http://www.neuroendocrinology.org/

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