Seizures during the menstrual cycle

[stilldancing_98]

I tried with just hormones, but it just made me worse. I still need to take care of this . Ooops. My epilepsy gets worse at that time , usually right after. If I'm thinking right. But it kind of goes with my stress and tiredness I think.

 

[seizures4ever]

Stacy I have really strong menstrual cycles too Heavy bleeding so much that im weak I feel like im going to die bad cramps, just want to sleep extreamly emotional mine last about 7 days also & before i start im moody I also have seizures most are with in the first three to four days before my ms.... .. ITS my two weeks of hell...I have really BAD pms too... my poor family.....

thanks you guys for the info about catemenial epilepsy before i lost my ins and money to pay my neuro he was actually leaning toward seizures around my ms... he wanted to do more test around my monthly. I just ran out of money... now that ive been referred to this free clinic its sliding scale fee & they can work with my neurologist maybe we can get to the bottom of all this......

Lorrie,

I'm glad you are getting some help from the clinic! It upsets me when I read that people with epilepsy are having problems getting the medical care they need. I hope they will work with your neuro and try to get to the bottom of your situation. Try to keep a journal and see if your seizures increase (and by how many) in and around your period...this will help you get the most of the time the clinic is willing to invest with the neuro.

Take Care. Hope you get answers soon.
-Julie

 

[angel]

yes!! the doctor I talked to in the Er said the clinic will work with my neuroloigest.. im just about to start my mencess so Im going to keep a journal I cant find the one ive been keeping its a full years worth.... I was so excited to be able to find a clinic that will work with me its great because my neck and spine were killing me off and on the doctor in the er just felt my back & neck she put me back on the meds for my neck my neurologist wrote me a note to give about my E & dystonia so if i need help meds etc someone would help me...Im thankful for that all in all its been a good week!

 

[brain]

A Bonus!

ANGEL:

Here's a recommendation, they NOW have Calendars
where they also come with a CD Rom where you can
also install it on your computer too (it's like - oh man,
I've got one and my Docs loves it...)!

It's a Calendar, Planner, Event, Everything!

I have mine pop up every time when my computer starts
and since my memory is so hideous, I have it all logged
in that computer, that way it's "private" and not marked
on the calendar on the wall - and also I'm able to mark
and log seizure activities as well. Then I go to my MS
Office and I have this Ledger - and from there - I record
everything down, and save it, and print it out.

My Doctors love it so much, that they rip out the old
one and insert the new one in my chart, so they have
the profile of it all, knowing exactly what all is going on
and when.

And plus I don't miss appointments this way too! Even
my Doctor's Receptionists tells me not to forget to put
it on your E-Calendar at home! (I did forget once!)

For the cost of the Calendar, it's the same price, the CD-
rom comes free!

:tup:

 

[angel]

Brain where did you buy it??? we have bi mart walmart & the mall... Im not on this computer much as my husband useses it for his buisness and when hes not home the kids take turns on the pc... still though I could use a Calendar on it im sure hubby wouldnt mind... I havent seen any with cd's though. & i could kick the kids off and make them read a book lol

Love
Lorrie

 

[stilldancing_98]

What an excellent idea. My memory is the same way and I need it to pop up like that. Tell me how you did it please.Teresa

 

[brain]

E-Calendar ... They ARE out there ...

I got mine at the Mall - where they have Calendar joints,
but I know Hallmark carries them, Wal*Mart, K-Mart, CVS,
etc ...

The problem is - when they rack these calendars - you can't
see it, many of them have the CD Rom Label down on the
lower bottom, so this means you have to pull the whole danged
thing out to see if it comes with a CD or not! It's NUTS!
And believe it or not - even the DOLLAR STORE/TREE has
them, that is, if they hadn't sold out on them already!

But if you have a MALL near you that sells nothing but
Calendars, ask the Seller - he/she will know which ones
have the CD's - and that way you won't be stuck with
pulling every single calendar out! And guess what, you
can use this blasted CD on as many computers as you
want! It even has a B'day reminder and you can even
send a B'day e-card if you want, it will take you there!
*grins* (Don't ask - but I sent myself a B'day card by
mistake this year *blush* and my son thought it was
so funny! I sent myself an e-card!)

:zacepi:

AND GET THIS - it even comes with screen savers, desktop,
and - maybe I better shut up and not spoil the surprise,
very easy to install - whether you have Windows 98 or Vista
or even a MAC!



AND well I better say this ... it doesn't come with spyware
or adware or any of that garbage!

:tup:

 

[brain]

What an excellent idea. My memory is the same way and I need it to pop up like that. Tell me how you did it please.Teresa

After you install it - it gives you the option if you
wish for it to start up when the computer starts,
or if you opt for it not to.

I opt for it to come on - or otherwise - I'll forget!

See attachment below for example of my E-Calendar
Set Up and Desktop:

(PS: The Pepsi Can is my Recycle Bin, that comes from
my Windows 95 desktop Icons ... I have a file of cool
Win 95 desktop Icons that can be used on Windows
all the way up to Vista - and I use that file all the time,
I have 7 disc copies of it and I'll die if I ever loose that
Desk Icons! LOL!)

 

[stilldancing_98]

Thank-you brain. I can keep track of my son's better that way to.

 

[Meetz1064]

That's

an excellent idea Brain......I had never heard of it before. I may have to go try that.....I don't have the Catamenial Ep, but have run into someone that has, and it will help them immensely......

THANK YOU!

:woot::woot:

 

[angel]

Thank you!

we have a Hallmark at the mall :woot::woot: thank you brain for the idea! it will be easy to keep track of things that way.. most of the time im up at 5:30am soo quiet! :banana: so i can enter everything then ...

big hugs
Lorrie

 

[stilldancing_98]

Now they will all stop nagging me. My epi center and gynecologist is at Harborview and they are working together with me. I think they will be suprised I remembered anything.

 

[Pinky]

I'm convinced this is what I have now. I've been tracking my seizures on excel, and they occur only in the week I ovulate and first few days of menses. This is the only time I have seizures as well. I had 3 extremely weird ones this week. I remember the feelings I felt (very different to the simples) and thought I was concious all through them but apparantly I was non responsive in all of them. All 3 occurred while I was with other people. With one of them my hand flopped about a bit. The confusion and tiredness that followed was also a lot worse than the simples but not quite as bad as the big ones I had before.

I also had what I think was an aura and prelude to generalised tonic clonic. I exercised some controlled breathing, and everything seemed to normalise. I read about this on here and am now convinced this works.

I also made the mistake of drinking a diet colddrink this week. A friend gave it to me in a glass. I normally stay far away from this stuff out of basic principle... Instant sps.

 

[Ruth]

I am post menopause. When I was going through my hormonal changes during that time, my seizures increased. I have done a lot of studying about food and epilepsy. I do not know if the same holds true with hormones. I would have to study it.

The Vitamins and minerals that are now slowing down my seizures:
1. Omega 3 fatty acids. Instead of the pill form in oil, which causes my triglycerides to go sky high, I eat salmon twice a week.
2.GABA is a major inhibitor neurotransmitter in the brain. Vitamin B6 helps to form GABA in the brain to prevent seizures.
3. We need Vitamin B complex, D with Calcium or take Calcet which has both Vitamin D and Calcium together and selenium.
4 Magnessium also helps to stop seizures.
5. Avoid NutraSweet which has Aspartame in it.

My neurologist told me to take the B complex with my Keppra. Yesterday, I asked my doctor about Vitamin D and Calcium. She got all upset and asked how I found out about it. Is it a secret among doctors? I did not ask her but she knew about it. Check out the foods you are eating. See if any of them cause your seizures during your monthly.
I take GABA once a day. It has really calm my seizures down.

I have changed my diet. It is not one particular one. It is one that works for me. Each of us is different in what we should or should not eat. Eat a diet that works for you. I hope this has been a help.

 

[stilldancing_98]

I am pre to. lol My diet is pretty good. And I excercise. I do have more myoclonics during my period. But my t/cs have decreased.In Seattle they have a woman epileptologist that speaks on these issuses. Its very helpful.

 

[Ruth]

Quote from PubMed

Epilepsy and hormones-a critical review. With epilepsy, however, things are often changing and a complicated interplay between hormones, epilepsy and AED may appear. Epilepsy itself possibly brings out diverse effects on different enzyme systems including sex-steriods, the neuro-cardio-endocrine axis and bone health. On the other hand, different AEDs are known to influence neuroendocrine changes that may cause unexpected consequences on health and well being later in life. It is of importance to have in mind and to consider endocrine effects caused by epilepsy itself or by a certain AED when starting antiepileptic therapy, especially when it is expected that long-term treatment will be necessary. Authors: Luef G, Rauchenzauner M. Department of Neurology, Medical University Innsbruck. Feb 20, 2009

This is what I found.

 

[RobinN]

This does not get into the knowledge that the hormonal imbalance causes the seizures. What happens prior to seizure activity, prior to anti-epileptic drugs?

There is a problem with insulin / liver / estrogen ... > seizure

 

[Ruth]

I know that when I was young and started my menses, my seizure activity increased. I was only on one pill a day since I was only having absence seizures. With me, I was anemic during that time of month. I had heavy blood loss during my monthly.

The article does bring out that AED's can cause hormonal imbalance. I have diabetes type 2 as well. I do not believe that the medicine I am taking for it is helping. Again, diet plays a big role. When I stay on my diet for diabetes, I do not have as much seizure activity.

Prior to my absence seizures, I was not on medicine. However, I was not on any diet to prevent it. That was almost 60 years ago. My father had epilepsy and so did my sister. It is definetly genetic in my family. I know estrogen played a big role in my sister's seizures. She had stopped having seizures. I do not know if she continued taking AED's all of that time. When her menses stopped, she went on the estrogen pills. All of a sudden she threw away her estrogen pills and her seizures came back with a vengeance.
They were worse than mine. Her daughter was her caregiver. She cleaned her small house and cooked her food. She lived out in the country to avoid stress.

Robin, you have done a lot of studying of diets to avoid pills. You have avoided pills with Rebecca all together. What information can you give us? That was the only article I could find.

 

[eslucas]

meds and vitamins

Hi guys. Turns out I have osteopenia and low iron but not anemia.
My doc recommended I take 1500mg of calcium and 3 iron tablets (proferrin)
everyday to treat these problems. Recently I read that calcium can affect the level of seizure medication in the system. Now I take the meds, iron pills and calcium pills at least 2 hours apart. My pharmacist told me there is no interaction between the meds and vit just the the calcium and iron so I take them at least 2 hours apart. All I know is that I'm very confused!? The real challenge is making a daily schedule so that I take all the pills I need to without any negative interaction. Anyone have any info or in a similar situation? I would love to hear from you.
Thanks a lot!

 

[Ruth]

Hi eslucas

I am having a bone density test Monday. I had to ask my doctor for it.

I take one iron tablet a day for my anemia. It is 27 mg. My anemia is gone.
I am also taking one tablet of Calcium Citrate with Vitamin D in it. The calcium is 650 mg a day. The vitamin D is 400 IU. My doctor told me to take more but I think that is too much at my age. Two caplets provide 630 mg Calcium (63%) that is the recommended dose. It provides 100% of the Vitamin D. Calcium and Vitamin D work together.

I also take a Vitamin B complex pill daily for my Keppra. My neurologist told me to when I first got on it.

Our medicines deplete our vitamin and minerals so we need to add more. Do what your doctor tells you to do.