Coping With Epilepsy EEG Institute
10% off neurofeedback training for CWE members - Woodland Hills, CA
Neurofeedback Partner - Free Advertisement
 

Go Back   Epilepsy Forum > Our House > The Foyer



Reply
 
LinkBack Thread Tools
  #1  
Old 05-16-2012, 03:33 PM
eem eem is offline
Getting Comfortable
 
Join Date: Apr 2012
Posts: 20
Thanks: 11
Thanked 2 Times in 2 Posts

For the ladies - catamenial epilepsy


Hi,

I suspect that I have catamenial epilepsy. One month ago I had my first seizure. It was also the first time I has menstruated since my last son was born. It had been about 18 months. I was put on trileptal and everything stopped for a month. Now, the very next time I menstruated, I had 2 auras (no seizures) in 2 days. Maybe a third while I was sleeping. I am not sure if it was an aura or a dream.

I want to find a DR. in the Baltimore area who can specialize in this. My Dr. did not even mention this although I told him from day one I suspected these were tied to my hormones. Any ideas (on Dr's or anything else dealing with catamenial epilepsy)?

Thank you!
Erin
Add Post to del.icio.usStumble this Post!Reddit!
Reply With Quote
  #2  
Old 05-16-2012, 04:14 PM
Venerable Voice of CWE
 
Join Date: Feb 2012
Location: Netherlands
Posts: 1,165
Thanks: 752
Thanked 651 Times in 439 Posts
Hello Erin

There is some reading on CWE (with plenty of additional links) discussing this topic.

Ladies only...catamenial question

catamenial epilepsy

No one knows your body like u do :-) so keep a good record of all auras/ suspicions in a dated and detailed journal.

Could you ask your doc to refer you to neurologist/specialist?

Potentially CWE members can point u in direction of neurologist/specialist in your area and no doubt will be giving u some input

Chaz
Add Post to del.icio.usStumble this Post!Reddit!
Reply With Quote
The Following User Says Thank You to Chaz1 For This Useful Post:
eem (05-16-2012)
  #3  
Old 05-16-2012, 04:24 PM
Super Moderator / Thank You Queen
 
Join Date: Jun 2005
Location: Massachusetts
Posts: 13,047
Thanks: 535
Thanked 4,990 Times in 3,850 Posts
hi Erin --

Be persistent in finding a neurologist who will listen to you. Johns Hopkins has an excellent epilepsy center (one of the best in implementing dietary approaches to seizure treatment), so that might be one place to start.

Most treatments for catamenial epilepsy involve progesterone in some form (lozenges, creams, birth control), because it counterbalances the higher levels of estrogen that can trigger seizures. You might be interested in these threads, if you haven't seen them already:
Catamenial
hormones catamenial epilepsy
seizures and menstrual cycle
Catamenial Epilespy
Add Post to del.icio.usStumble this Post!Reddit!
Reply With Quote
The Following 2 Users Say Thank You to Nakamova For This Useful Post:
eem (05-16-2012), RachelinAZ (05-16-2012)
  #4  
Old 05-16-2012, 06:05 PM
chop456's Avatar
Weaving the Community Fabric
 
Join Date: Mar 2012
Location: Wisconsin
Posts: 217
Thanks: 51
Thanked 75 Times in 61 Posts
We are tracking to see if my daughter has any increases in activity during her cycle. Her neurologist sent me this link for information...

http://professionals.epilepsy.com/pa..._patterns.html
Add Post to del.icio.usStumble this Post!Reddit!
Reply With Quote
The Following 2 Users Say Thank You to chop456 For This Useful Post:
eem (05-16-2012), RachelinAZ (05-16-2012)
  #5  
Old 05-17-2012, 08:20 AM
Weaving the Community Fabric
 
Join Date: Dec 2011
Location: Connecticut
Posts: 250
Thanks: 10
Thanked 67 Times in 61 Posts
I also noticed pretty early on that my seizures coincided with my cycle. I mentioned it to my first neurologist and he told me it was impossible.
My GP told me it was totally possible, but my next neurologist never really acknowledged it until I had been seeing him for a couple of years, and then he wanted to try me on birth control pills. They seemed to work, but not completely. I went off of them for a while (I don't remember why), and then when I asked my gyno about starting them again, he was like, "They won't help your seizures!" with an attitude and everything. And I was just like "Ok..." I don't know what that was all about because the first time, he was all for trying them to decrease my seizures and thought it was a great idea.
Add Post to del.icio.usStumble this Post!Reddit!
Reply With Quote
  #6  
Old 05-17-2012, 10:03 AM
LJ-Bain's Avatar
Venerable Voice of CWE
 
Join Date: Mar 2012
Location: Ontario, Canada
Posts: 1,031
Thanks: 857
Thanked 647 Times in 358 Posts
That is a shame that your gyno and first neurologist doesn't totally understand the connection between hormones and increased seizure activity.
It is a real thing. They must have fallen asleep in class during the day they covered that.
Isn't it something like 50% of women find it messes with their seizure threshold? That is just the same as most divorce rates.
Add Post to del.icio.usStumble this Post!Reddit!
Reply With Quote
  #7  
Old 05-17-2012, 04:38 PM
Joined the Party
 
Join Date: May 2012
Location: England
Posts: 68
Thanks: 17
Thanked 28 Times in 22 Posts
It's astonishing and sad how a certain fraction of medical people of both sexes refuse to believe that fluctuating hormones can affect bits of your body not covered by obs/gyn.

I'm already on a reduced-oestrogen lifestyle, my brain wouldn't function on tamoxifen, so it's really useful to get this link. And if it helps my daughter not to have any more seizures too...
Add Post to del.icio.usStumble this Post!Reddit!
Reply With Quote
  #8  
Old 05-17-2012, 05:01 PM
Joined the Party
 
Join Date: May 2012
Location: England
Posts: 68
Thanks: 17
Thanked 28 Times in 22 Posts
Just to add: the easiest way to reduce oestrogen is to switch to buying organic milk, because the usual (cheaper) stuff comes from cows that have their yield increased by being pumped full of artificial hormones; then go for reduced fat, because the oestrogen is in the fat component (so are the calories!) The second big lifestyle change that can make a difference on hormone balance is to seriously increase your aerobic exercise, but this requires time, dedication and either good weather or a fair bit of money, unless you like getting cold and wet while getting hot and sweaty. At the start it may also involve aches pains and blisters too But it does bypass the need to convince sceptical doctors to give you tablets they don't believe in, and it doesn't have many side-effects apart from possible weight-loss.

eem - Erin - maybe at least as your cycle settles again, you will know when the vulnerable days are going to be, and can take extra care with the self-help stuff like getting enough rest for those days: Yes I know that raises a hollow laugh with little ones around, so if you could have a babysitter or a sleepover for one or two nights a month you can choose and know which nights to ask for?
Add Post to del.icio.usStumble this Post!Reddit!
Reply With Quote
The Following User Says Thank You to Bathtub For This Useful Post:
JillT (05-17-2012)
  #9  
Old 05-17-2012, 05:04 PM
Super Moderator / Thank You Queen
 
Join Date: Jun 2005
Location: Massachusetts
Posts: 13,047
Thanks: 535
Thanked 4,990 Times in 3,850 Posts
I've switched to almond milk, though I still eat cheese and yogurt occasionally...
Add Post to del.icio.usStumble this Post!Reddit!
Reply With Quote
  #10  
Old 05-17-2012, 08:55 PM
Weaving the Community Fabric
 
Join Date: Apr 2010
Location: orlando FL
Posts: 238
Thanks: 8
Thanked 70 Times in 56 Posts
My neurologist still really does not really see the connection and its been 4 years! My major trigger is my period and I keep detailed journals too. My GP gets it better than he does so I am looking to get a different opinion in Tampa or Jacksonville in a few months. I figure whats the harm? I avoid soy, eat some dairy in small amounts. I have found the Nuvaring to be the birthcontrol method that has worked the best for my husband and myself with the least amount of side effects with my meds. topamax, & keppra with the added benefit with I pretty much know almost the hour that my period will start and end and the day I will be most prone to seizure.

Tina
Add Post to del.icio.usStumble this Post!Reddit!
Reply With Quote
Reply

Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are On


Similar Threads
Thread Thread Starter Forum Replies Last Post
Ladies only...catamenial question LJ-Bain The Kitchen 32 07-05-2012 03:07 PM
catamenial epilepsy jonsey The Foyer 9 04-06-2012 02:18 AM
catamenial epilepsy suebear The Kitchen 25 02-27-2012 03:30 PM
Azithromycin for catamenial epilepsy? Junebug The Kitchen 1 02-17-2012 05:27 PM
hormones catamenial epilepsy angel The Library 13 10-30-2011 12:15 PM


All times are GMT -5. The time now is 09:52 AM.


Powered by vBulletin® - Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.
Content Relevant URLs by vBSEO ©2009, Crawlability, Inc.
Copyright 2005 Measuring Up. ALL rights reserved.